Day #134 “Is My Condition Part Of What Makes Me… Me ?” – Part #4

“Is My Condition Part Of What Makes Me… Me ?”
Reference/s –
https://themighty.com &
https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf

---

When I write about my story of Primary Progressive Multiple Sclerosis I write in a personal way… I write about PPMS as if he was a real person , with a real identity…(I have humanised him and even given him a name and a gender, his name is “My Story – and his gender is Male”

There are times throughout my writings where “My Story” himself makes an appearance & he is allowed to have a voice and even writes in the first person, I choose not to write for him (as a person telling another person’s story – in a disconnected third person kind of way)… “My Story” does have his own identity and he in fact as of late has started to identify himself as a comedian… (a self amused writer… as I personally see him).

I do think that in giving a human form to the identity of my PPMS, by giving him a name & a gender, by allowing him to speak in his own voice, in allowing him to identify himself as a comedian I think that I am just putting a lighter side to a diagnosis that exists in my body… that works against me in my everyday life… pushing its boundaries and “kick ass attitude” into my even white knuckled painful daily journey.

I have written before in and throughout my writings about my PPMS about how I feel that I am in my day to day life of having Ms test I know that I am in a fight with myself and my diagnosis to maintain who it is that I am…. and who it was that I was before my diagnosis of PPMS came to be a small part of who it is that I am now. I have written about how it is important for me to maintain my mind, my thoughts and my ability to learn new things.

And I have written on numerous occasions of my fears of how I would struggle to lose the who and the what parts of the very person that I am… what would I do without my thoughts and my mind processing and working abilities?? I would hate to think… my god I think that I would be better off being lost to this world than I would be if I had to live in this world with a diminished reality of whom it is that I am.

And there are times when I share a personal side of my PPMS story and how it affects me … just recently in a post I wrote the following:- “My Story”… I even thank him kindly when he makes me crash head first into the walls of my hallway… I don’t particularly find it funny when he trips me up on my many times folded socks (I have small feet and my socks have a mind of their own, together “My Story” and my socks work hard at pissing me off), but I give them a mouthful.. throwing my sox into the washing basket screaming “you deserve far worse treatment but maybe a spin in the washing machine will teach you who is boss..”

It sounds ridiculous… but getting mad only feeds the pain and symptoms… of “My Story” and my PPMS… I have found that humour humiliates both my symptoms and my ass-kicking socks and momentarily I feel a release of it’s at times overwhelming pain threshold that it can at times have over me.

I do tell people who ask about my Ms… that I Have Primary Progressive Multiple Sclerosis, It Can & Will Kick Me In The Ass When It So Has The Need & Or Want To… But Humour Keeps It’s Hold On Me From Knocking Me To The Floor.

I do choose to get up everyday knowing that at this moment in time that there is no cure for Ms, that there is only trials, treatments and day to day struggles…I have on many occasions been told that I am way to positive about my PPMS diagnosis “Like Really – Was That A Sentence, A Statement Or A Judgement ?”

I have told many people over the years since my diagnosis that there is truly no point in seeing the bad side of my Ms diagnosis, that crying & screaming “why me ?” isn’t for me… I tell people that at times Ms may have a tight grip on my pain threshold, but I believe that humour and giving it an identity like I have keeps the strong hold and the amount of medications that I have to take down to the minimum.

So I say to you my readers …. that maybe I am way to positive or even casual about my PPMS and its diagnosis/symptoms and maybe that positive attitude is too positive of an attitude for some people to handle… but for me, having a positive, humanising, humorous attitude about my PPMS is how i cope and get by from day to day – being positive works for me and whilst my positive attitude may not dwell well with others… I say to that…. What others think and how they feel about my positive attitude is just that “their thoughts” I choose not to weigh into the thinking’s and thoughts of other people… my journey and the way I go about it is what makes my Ms story personal to me…I choose to laugh in the face of my own diversity…  ” I refuse to use MS as a crutch or an excuse for the bad days that may block my day-to-day paths, I put on a brave face each & everyday… wearing strength & inner perseverance like a super hero cape even when the days have me feeling like I have no energy to power on.”

---

Awhile back I wrote the below poem titled “This Is Me”… A summation of the everything that I am… & I feel its a perfect summation of  today’s scrawling’s and my inner thoughts.

“This Is Me”
I’m not a stranger to the verbal words spoken behind my turned back
I see the finger-pointing
& I feel the stabbing pains that dig me deep within my heart
Pushing me to my breaking pointing
Expecting me to run
Run as far as it takes where no one can see me
All because they say its fun
To pull away at my inner workings
To see how I tick and toc

They want to see me hurt
They want to feel my need
All so that they can say that they were the ones who saved me!

I walk alone in my own stained glass tears
Pushing forward with all that wills me
Through the barricades of people who hold me back
& onto the footpath that I have built for me
And when the darted words make my life unbearable
I choose to walk tall vowing that my tears will never fall.

Silent moments and a flood of tears
Away from watching eyes and cheers of laughter
Silence becomes my comforter
As my legs raise me to where I am ok again.

I am not scared to have to have an opinion
& I am not scared to make it known
& whilst I certainly do not walk without fear
I am comforted by my guiding morals and values
I make no apologies,
I welcome my strength and know that this is who is me.
And when their words
Try to bend and break my resolve
I put on my brave face
& walk proudly on.

I am me
I am unique
I am the best me that I can be.
No hesitations
No apologies
& certainly no damn sorry’s
For I am being who it is that I was meant to be.

Written By
Tanya Kelly
2019

---

So… “Is My Condition Part Of What Makes Me… Me ?” …. Hell yah it is… & his name is “ My Story, He Is Male, He Identifies As A Comedian” and together “ My Story & I ” live with a positive attitude that has a humanising element of who & what “My Story”  & PPMS” is to me…

PPMS, “My Story” & I  are the elements of me that make me; me!

---

So there it is my thoughts and perspectives on an interesting question came into my inbox.. (“Is My Condition Part Of What Makes Me… Me ?”)… the very thoughts that got me thinking about my Primary Progressive Multiple Sclerosis, and about how PPMS, “My Story” & I  are the elements of me that make me; me!

Reference/s – https://themighty.com & https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf

---

Thank you for sticking with me & my long winded writings and thoughts. I hope that through my words you gained a greater understanding of what Multiple Sclerosis is and how the many of thousands of people who have it get through their every day’s.

Multiple Sclerosis may have altered some of my body’s workings & it may have altered the way that I do thing in my day to day life… but I am strong and I live each day to the fullest with a hope that the generations that will follow in my footsteps will live a life without Multiple Sclerosis or any other autoimmune disease in their timeline.

---

<== This Blog Post’s Other Pages ==>
Introduction  –  #1  –  #2  –  #3  –  #4

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

---

Day #133 “Is My Condition Part Of What Makes Me… Me ?” – Part #3

“Is My Condition Part Of What Makes Me… Me ?”
Reference/s –
https://themighty.com &
https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf

---

So to answer the question put forward at the beginning of this daily write:- “Is My Condition Part Of What Makes Me… Me ?”

Well the answer is yes… yes of course my condition & diagnosis of Primary Progressive Multiple Sclerosis is part of who I am… but not in terms of “Am I Who Is It Is That I Am Because  I Have Been Diagnosed With Primary Progressive Multiple Sclerosis?” Well the answer to this is no, no my PPMS hasn’t made me who it is that I am & I certainly do not write about the things that I write about in my daily scrawling’s because of my Ms.

Some Background To My Daily Writings

I have been writing since I was very young & I have always written  at some level for these many years but on January 9th, 2018 I took up my daily writings as part of an agreement that I made with myself.  (I wanted to start up journaling again but was seriously concerned about the safety and security of my writings because some years ago my journal was stolen and handed around my teenage community of friends – from that moment I vowed to never journal again).

So in January last year I started writing on a daily bases and submitted my daily thoughts at http://www.750words.com&#8230; this writing forum was locked by a username and password… so I began writing and submitting my daily scrawling’s and felt secure in doing so.

So time rolled in and I was already dabbling in my thoughts of blogging… but there was no way that I was going to post what I had been writing about in my 750words.com’s daily postings… some of it was ok to use… but there was a degree of “personal anonymity that I want to keep.. for both me and my writings sake.”

I was so bogged down by my initial setup of my blog because I wanted to use my web design skills to create a website/blog that was all mine… I was do weighed down by the designing process of my blog that I becoming very overwhelmed by the whole idea of blogging, so I bit the bullet and put my design wants aside and began a free blogging site with http://www.wordpress.com – a site that is today known as 365 Day Somethings (https://365daysomethings.wordpress.com).

What I write about at 365 Day Somethings isn’t all about my diagnosis of Primary Progressive Multiple Sclerosis… there are posts about my PPMS but it rates the occasional mention and only from time to time.

Before I was diagnosed with PPMS I was a writer with much to say… but writing poetry & daily journaling was where I was in my wants for my writing journey.

As a child I did have ideas and or thoughts of becoming a journalist or a columnist but these parts of my secret thoughts and wants for my life were avenues and aspirations that I never pursued.

So before blogging and daily writings at 750words I was a web designer and the occasional writer of poetry… & when I say occasional writer of poetry what I mean to say here is that I probably have a few hundred pieces of written pieces that I have written over the past years.

After my actual diagnosis of PPMS I do think that I became more serious about my writing abilities and my wants for my many stories and hidden thoughts to be written…

There was a part of me that thought that my stories would be of some comfort to my Family and Friends in the event that my PPMS was to take a turn… I wanted to write and share the things that I kept within and didn’t share freely with others… I suppose that you could say that I saw a need to get writing and to finally download my many thoughts.

So in terms of the question at hand “Is My Condition Part Of What Makes Me… Me ?” Mmm… like I said … yes no and maybe in a small way it it… but I have always had a writing voice and I have always had an opinion about many things… but I do feel that I dont use my writing voice, my many daily writing avenues and my diagnosis of PPMS to have my say… in fact I more of a “prolific personal writer – an author of many writings “ but in saying that I am not a writer that chooses to write about things that are going on in and around the world… I have written about things in a more open stance before but I feel that my writings could be seen as a “personal collection of memoir elements that put together will tell the many stories of who it is that I am.”

Writing about my Primary Progressive Multiple Sclerosis is a small part of who I am, there us apart of me that want to write as a Warrior and a voice of Primary Progressive Multiple Sclerosis… I do have moments where I want to use my writing abilities to bring a voice and an awareness to Multiple Sclerosis and the life altering symptoms that causes Ms’ers the many limitations that’s its diagnosed disease brings… yes there is a part of me that has a want to advocate for the awareness, the education and the voice for Multiple Sclerosis… but I selfishly want to tell the stories of how my own personal journey and diagnosis of Primary Progressive Multiple Sclerosis affects and impacts me, my loved ones, my immediate family and my many friends near and far.

My personal stories will with hope become my personal memoir… a story of who I am that will in some sort of left handedness will serve to educate others about the fight and cause of  the disease know as Multiple Sclerosis.

---

<== Please Go To Blog Post #4 To Continue Reading This Blog Post ==>
Introduction  –  #1  –  #2  –  #3  –  #4

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

---

Day #132 “Is My Condition Part Of What Makes Me… Me ?” – Part #2

“Is My Condition Part Of What Makes Me… Me ?”
Reference/s –
https://themighty.com &
https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf

---

I personally see my own Primary Progressive Multiple Sclerosis battle as it is a “Symbiont”) – An organism in a symbiotic relationship. In cases in which a distinction is made between two interacting organisms, the symbiont is the smaller of the two and is always a beneficiary in the relationship, while the larger organism is the host and may or may not derive a benefit from the relationship.

And then there are times when I see my Primary Progressive Multiple Sclerosis as a parasite (Parasitism is a kind of symbiosis; a close and persistent long-term biological interaction between the parasite and its host. Parasitism is a relationship between species, where one organism, the parasite, lives on or in another organism, the host, causing it some harm, and is adapted structurally to this way of life).

Why can’t Ms be known as a parasite?… after all what Ms does to the body is that it eats away the insulating covers of nerve cells, the brain and the spinal cord causing quite a bit of damage and leaving scars along the way… disrupting the ability of parts of the nervous system; causing it to miscommunicate with the body, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems.

So What Is Multiple Sclerosis In A Nutshell?

Ms is a demyelinating disease which means that it is a disease of the nervous system in which the myelin sheath of neurons is damaged. This damage impairs the conduction of signals in the affected nerves. In turn, the reduction in conduction ability causes a deficiency in sensation, movement, cognition, or other functions depending on which nerves are involved.

However, a person chooses to take on the plentiful gifts of Ms &it’s many symptoms is purely up to the person who has been given the diagnosis of Multiple Sclerosis.

In my journey I choose to have a sense of humour (that I hold “My Story) responsible for), I keep busy with my web design/computer technician work, my many writing adventures & of course my blogging journey. I’m a busy Mum of 3 and a Wife to a very supportive Husband who all work hard to keep me grounded and on top of my Primary Progressive Multiple Sclerosis ailments.

I may sound chipper and it may seem that I have a can do, will do & have to do attitude about this whole life-altering story that has me in a not so bad of a way; let my words be heard but please don’t think that my journey has been and will be in the future an easy one, I have many many hard says and some land me in bed for days at s time… I work hard to keep myself on top of things & I work even harder to complete my own self appointed daily schedule… some days are more of an ass kicking than I let on… some days are full of self-talks and muttering moments that spur me to get a move on…

My Diagnosis of Ms has given me many hours of self-doubt… but I will never let myself get to the self-pity stage… I get angry for my family who has to endure the struggles that are not theirs (they also have to take on some of chore lists when “My Story” decides that he isn’t going to be a team player and work to get the house and its many chores done)… I am afraid of what tomorrow will bring… to be frank I am scared shitless of the unknown… I am in constant question time with my mind and souls governing body, it always seems to be in censorship that I am way to busy and mindfully active for someone who has PPMS but being busy in my many daily habits, Family and work life is where I get to be me… the me who has a diagnosis of Ms but is able to push through and just get shit done.

The best advice I could give to anyone struggling is this… get a notebook and write, write, write… Write about anything, writing is the best therapy that you could give to yourself.

Find a hobby, join a book club, take on a new adventure… but please whatever you do… “DON’T SIT STILL” sitting still and giving up will allow Ms and any other autoimmune disease to take over the cognitive functions of who it is that you are…

Like the saying goes “Strength In Numbers – When Referring To Bullying “ I believe that “A Can Do Attitude & Willful Strength Will See Those Brain Fog Days & Kick Ass Symptoms As Moments Of Resting Time For One’s Inner Courage.”

Building strength and determination that will help you to reach deep within… giving you the power to see you through your toughest days is what makes up the best defensive game for you and your Ms journey… will yourself every day to never give up… Ms doesn’t have to be the end of all your life’s ambitions… every person’s Ms is different so it is up to you to draw what will be the map of your life’s path.

“Ms Doesn’t Get To Wear The Warrior Costume & You Don’t Need One; Getting Up & Everyday … Pushing Hard To Be The Very Person You Can Be… Will Become The Grit & Grind That You Hold Onto Strength & Sheer Determination Will See Your Foggy Days Clear… Your Own Warrior Journey Will Be Your Best Run Race The Warrior In You Will Be Victorious When You Take Ms Head on Into Battle.”

---

<== Please Go To Blog Post #3 To Continue Reading This Blog Post ==>
Introduction  –  #1  –  #2  –  #3  –  #4

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

---

Day #131 “Is My Condition Part Of What Makes Me… Me ?” – Part #1

“Is My Condition Part Of What Makes Me… Me ?”
Reference/s –
https://themighty.com & https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf

---

An interesting question came into my inbox this week.. this question got me thinking about my Primary Progressive Multiple Sclerosis, about me & about how the two parts make me; me…

The question that was asked is this “Is My Condition Part Of What Makes Me… Me ?”

So this question by “The Mighty Community Website – which is a supportive community for people facing health challenges and the people who care for them.” got wondering and then all of a sudden I went all sci-fi on my identification of what Multiple Sclerosis may actually be…

My thoughts are kind of a funny now that I am taking the time to sit down and read what it is that I have written. I actually sat down to put some serious thought time into the question at hand…

Blame it on my pain meds or on “My Story – (Ms for short) for the way it chooses to humanise himself with his spits and spats and tit-tat moments of humor… you see… from time to time “My Story” plays out his days as a comedian… he does thinks he is funny… I like to to laugh at him deliberately because I find that he is nicer to me in the days after he has had a good night laughing with his audience… when he has a feeling that my laughter is being disingenuous (not laughing because he is funny… laughing because I know it benefits me and weeks level of suffering)… he serves me a great big bloody hug… taking the air out of my winded sails and forces me to tap out… collapsing into an unscheduled nanna nap.

At first … when I began writing this piece… I wondered in some kind of a half arsed thought; if I was actually living in some sort of codependent relationship with “My Story “ at the helm.. I started to wonder if I was actually the one that was codependent on “My Story” … relying on him soon became over run by the thoughts in my head – screaming out “You codependent on “My Story” oh what a laugh… (seriously I couldn’t be reliant on “My Story” what does he bring to the table besides the attention that he brings me by adorning my body with its ping-ponging funky walk)…

I quickly thought nah to the thought of me living in a codependent relationship with “My Story”… I ‘m not an attention seeker snd my funky walk … well after 6 nearly 7 years of it actually being in existence… it isnt that funny anymore… being flung into my wardrobe as I stumble off balance whilst trying to dress is just not funny anymore… let me not even entertain you with my many stories about my 4am meetings with my hallways door handles that love to stamp my body with bruises.

Who knows; maybe it’s “My Story) that is actually the codependent person in our relationship… after all the definition of codependent is (behavioral condition in a relationship where one person enables another person’s addiction, poor mental health, immaturity, irresponsibility, or under-achievement. Among the core characteristics of codependency is an excessive reliance on other people for approval and a sense of identity)… he certainly has a need to be attention seeker, he thinks he is funny, seeks approval by forcing me to laugh at him or he causes me to hurt… and that funky walk he has me doing !! Immaturity Right There !! Yep “My Story” most definitely has a reliance on me for a sense of identity… as warped as it maybe!

Now with all seriousness & with “My Story” & his identity aside…

Maybe just maybe; Ms requires us its life-altering subjects to have life-altering symptoms for it to gain what it needs from us ie myelin and energy…. maybe it has a substance issue and the symptoms that people with Ms suffer from are the very things that Ms is physically or psychologically addicted to…

My theory is that maybe when Ms doesn’t get its fill… it falls into a relapse and drains its human host and land him/her into hours and days of suffering the symptoms of its temper tantrum… stepping up in intensity… proving that it is in charge by allowing the human hosts immune system to eat away at the bodies protective covering of its nerves… tap dancing from head to foot … stopping from time to time to hug its host… making sure that they know that it’s not yet time for Ms to return to its plateau – where it sits in quiet, entering a state of quiet where it has little activity or progress in the progression of its severity and or symptoms.

Then I had a questioning moment where I asked myself with some degree of curiosity… Is My Body A Vessel that carries Ms along in its journey? Or is my Ms a succulent (adaptive and able to absorb and manifest itself and its altering conditions to suit it’s here and now… able to grow into what it wants to be … knowing that it has little to no medical intervention or medication regimes to stand in its way.

Then another thought came by… Is Ms an organism, unfounded, unidentified by today’s scientific world… is it possible that Ms may actually be a parasite or a symbiont feeding on my fatty myelin, whilst wrapping itself around my nerve fibres either to keep warm, or maybe Ms is wrapping itself around my nerve fibres in order to fill its own energy reserves for the purpose of altering me, my abilities, my onslaught of symptoms and of course the level of ever-changing disabilities.

---

<== Please Go To Blog Post #2 To Continue Reading This Blog Post ==>
Introduction  –  #1 –  #2  –  #3  –  #4

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

---

 

Day #130 “Is My Condition Part Of What Makes Me… Me ?” – Introduction

“Is My Condition Part Of What Makes Me… Me ?”
Reference/s –
https://themighty.com &
https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf

---

This is a preliminary post about what I will be blogging about for the next few days. This post that I wrote is quite long so I thought that I would sit down and post it to my blog over a few days.

So what are the next few days of blogging to be about? Well in my e-mail’s inbox a few days ago a question caught my attention… so I thought that I would sit down to write out an answer to the question being asked… (apologies in advance)… It’s seems that my thinking thoughts ran away with my finger tips and together they got a little busy…  unfortunately for you I seem to be a marathon writer – I like to write lengthy posts… but even I think that this one may be a little to long… (but I just couldn’t cut it down to a reasonable & a read worthy size).

So I have placed my thoughts into a few blog posts so I don’t bore you to death.

(I even created the graphic to the left of this blog post to give you a clue of what I will be writing about).

---

So here is the question that I found in my e-mail’s inbox.
“Is My Condition Part Of What Makes Me… Me ?”

Referenced Websites
– https://themighty.com &
– https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf

---

<== Please Go To Blog Post #1 To Continue Reading This Blog Post ==>
Introduction  –  #1  –  #2  –  #3  –  #4

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

---

 

Day #129 “Prettiest Wreck You’ve Ever Seen!”

Here it is 1.17am March 12th 2019… in the aftermath of a Sydney induced dizzy day.

I was reading the mornings newspaper (Facebook) hoping to kill a few moments before I try to put my blogging thoughts and the fact that I am a little behind in daily writes/blogging post to bed for just a few hours, before I rise and shine and try against the hash deliverances of my week and my “My Kick Ass Ms Week” dressed & ready to push through the heated days that are still engulfing Sydney in this being the beginning of Autumn 2019.

So in reading the early morning edition of the life’s self imposing newspaper (Facebook), I came across the following pictured message.

Yeah I’m Hurting…
But on goes  the mascara & lip-gloss.
That’s right,
I’ll be the prettiest wreck you’ve ever seen!

I often get asked why it is that I bother to get dressed most days.. not only get dressed in clothes, but why do I bother to attempt to tame my freshly washed hair and make myself up in what has been described as “my life’s colouring book pallet” by one of my closest friends.

Well why the hell not I say?

I like being dressed I often say… and I like that my use of makeup helps me to feel less sick or fatigued… and I certainly like that don’t have to look like I am dying even though my Ms can at times leave me feeling as though I am about to crumble to my knees. There is also that small part of me that feels confident in who I am and in what I am offering to others throughout my day when I am dressed in clothes & face etched in colours and tones… what ever my reason… my makeup and my everyday get up and get dressed attitude is who I am and want to be !

Why do I bother? I often get asked… well in my own true to myself spirit I ask in the same curious tone “Why The Hell Not.. & Why Don’t You Bother To Colour You In With Human Made Colours & Hue’s… without sounding like I have a bee in my bonnet about the need for people to ask me why I bother to wear makeup… I want people to know that I wear makeup and choose to put myself together because I truly do not like seeing my Ms down trodden self in the reflection of a mirror…

“Fake It Till You Make It… I Say – or Makeup Yourself The Colours Of Happiness That You Wanna See… Instead Of The Colour Blue That Ms Has You Laying On The Lounge Feeling Sorry For Yourself…”

That is why I put the effort into me and the colour pallet of happier hue’s that make me feel more like me minus my Ms struggles.

I am grateful to those who say that I don’t need to dress up on their account, or that I don’t need the makeup that I take the time to apply.. all so that I can make myself feel alive and living in a brighter sate of mind… I love those who say that they appreciate and love me more in my natural state… but I like my colour pallets and I love being the human colouring book that gives a shit about looking like the person that I see with myself.

“I don’t really care what other people see me as. I seriously don’t. I’ve always worried about what my opinion of myself is… Ms is aprart of me, but it doesnt define who I am… who I was a well dressed person who went to work everyday freshly showered, presentable and happy within myself and my many jobs that I have taken on throughout my days… My makeup doesn’t define me & it certainly doesn’t make me who I appear to be… it just helps colour my world when I am feeling blue.”

My advice to you my readers would be…
“Paint your life however you want – it doesn’t have to be the way others paint it.
Your own attitude will always be your best paintbrush, giving you different shades when you need them the most.”
Quoted Reference Link Here

---

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

Day #114 – Part Of My Long Daily Write

Today’s blog post has been spurred on by the movie “Still Alice” – is based on a novel of
the same name published in 2007. The novel was written by Lisa Genova, a neuroscientist who was inspired by her grandmother’s development of Alzheimer’s disease to write about the disease from a firsthand perspective. Still Alice is a compelling debut novel about a 50-year-old woman’s sudden descent into early onset Alzheimer’s disease, written by first-time author Lisa Genova, who holds a Ph. D in neuroscience from Harvard University.

Alice is a celebrated Harvard professor at the height of her career when she notices a forgetfulness creeping into her life. As confusion starts to cloud her thinking and her memory begins to fail her, she receives a devastating diagnosis: early onset Alzheimer’s disease. Fiercely independent, Alice struggles to maintain her lifestyle and live in the moment, even as her sense of self is being stripped away. In turns heartbreaking, inspiring and terrifying, Still Alice captures in remarkable detail what’s it’s like to literally lose your mind.

See The “Still Alice”  Movie Trailer Here

Reference – https://www.goodreads.com/book/show/2153405.Still_Alice

---

Please be aware that this daily blog post is an abridgement of my daily written works.

The part of the movie “Still Alice” that got me to writing down my thoughts in yesterday and today daily writes is this:-

” I’m still alive. I know I’m alive. I have people I love dearly. I have things I want to do with my life. I rail against myself for not being able to remember things – but I still have moments in the day of pure happiness and joy. And please do not think that I am suffering. I am not suffering. I am struggling. Struggling to be part of things, to stay connected to whom I was once. So, ‘live in the moment’ I tell myself. It’s really all I can do, live in the moment. And not beat myself up too much… and not beat myself up too much for mastering the art of losing.”

These written words have become very dear to me, they mean the everything that my heart is screaming out to those people who are both curious and worried for me and my PPMS kick ass moments.

I want people to know that there are days where my PPMS Diagnosis & its alter ego “My Story” get together and kick my ass from one end of my days path to the very end of its last second of its days time. There are days when I am left feeling pushed beyond my limits, there are certainly days when I question who it is that I am and who it is that I will become, and of course I do grieve for the life that I had, the hours that I spent playing with my kids, the hours I worked hard to bring home a pay check that would buy my family new adventures and new foods to try, I will forever have the memory of jumping into my car – turning up the stereo and zipping down the road to a place that comforted my soul… but in the end I am not unhappy for all the things that my PPMS has altered, varied or taken away… I know that I can still do these things, I just now have to be aware of how go about things & how I use up my daily energy allotment.

Like Alice “I Am Still Alive” – I have a great family and some beautiful friends that except me and my attitude’s against all odds… I know who it is that I am & I know what I am able to do, I know that I have a varied skill set and I know that my PPMS diagnosis doesn’t define who it is that I am. I know that I have had to and will continue to have to alter my daily schedules and the how’s and the when’s that I will be able to do things… but I know that I also have a lot to live for and a lot to look forward to… Alice may have contemplated suicide – ending her life by taking a bottle of pills ““You are not living the life you want to live,” Alice writes in the note, which provides her with instructions on how to take a fatal dose of the pills she has hidden in a drawer. “You have chosen an outcome that is the most dignified, fair, and respectful to you and your family,” the note assures her” but have no want for my life and its journey to end…

I love my life and who it is that I am in it… even if that means that I must live the years that I have left with my shadows PPMS & “My Story” busily working in the forefront working hard to trip me up with its designated companion “Funky Walk” working along side in their team. I love with all that I am those people in my life that I treasure… my Family and Friends are my everything and my inner circle is the strength that keeps me pushing forward for the everything that we deserve in our lives.

I to have many things that I want to do with my life… for now my want is to write and write and write… I want to journal and blog about my life.. detailing my stories, my sorrows and my most intimate thoughts and feelings…. there is apart of me that wants to return to my studies of in the counselling field “finish my bachelors” but I am now torn between writing a Colum, Journalism, Writing For The Media, or Becoming A Full Time Blogger. Writing is where I find myself being the happiest me that I know how to be… I feel free and at peace with my life and my story when I am busily writing.

Right now my PPMS isn’t affecting my memory… I know oh to well that this may in my future become the case.. writing now will be my memory that I will gift to myself when and if my memory begins to fail me and my ability to write… just like Alice my phone, my notebooks, my scrawlings, my daily writes, my blog and my every written word are what keeps me going – they mean a great deal to me… writing is my muse, writing is who I am in all my rawness & and in all my truths.

The very moments in the day of pure happiness and joy are very much wrapped up in what I have written above… My Family, My Friends, My Writing… I am certainly not depressed or looking to place a tag of anger on what is my life… I am contented and I am finding the good days in my PPMS diagnosis that is now having to learn to live with and beside me.

The ending quote of what drives me to write about the movie “Still Alice” – And please do not think that I am suffering. I am not suffering. I am struggling. Struggling to be part of things, to stay connected to whom I was once. So, ‘live in the moment’ I tell myself. It’s really all I can do, live in the moment. And not beat myself up too much… and not beat myself up too much for mastering the art of losing.”

I am indeed not suffering… I am chronicling & recording my life in a factual and detailed way. Maybe this way is hard-headed and even confronting… but living my life as authentically as I can is important to me… I am driven by my moral standings to stay true to who it is that I am. Like I wrote above “I am not bullshitting to myself and I am certainly not bullshitting any other person who find a sense of curiosity in what has been happening to me and in my PPMS dilly dalling world… I stand for what I know is the truth in me and within my life’s story. I am struggling. Struggling to be part of things, and I do struggle to stay connected to people who have different ideas of who it is that I should be, or for that matter how I should be living in the wake of my PPMS… I work Hard to maintain my relationships that I love and hold dear with others… but someday’s I find that I have to give myself permission to say “Not Today & Maybe Not Tomorrow” – people have and will have to learn to see that someday’s I just need to get lost and be alone with myself and my thoughts.

As for not beating up on myself and or not taking the burdens of the words of others to heart.. well this part of my “need to do for me list” will take just a little longer to accomplish and or learn to do… don’t hold your breathe though… I am not one for being selfish and I do take to heart all that people say… I am after all an empath – (An empath is someone with the strong ability for this – to feel the thoughts, emotions, and energy of others and generally, people who are empaths are affected by these influences sometimes to the point of it becoming debilitating). I will never be that person that beats myself up for mastering the art of losing… I am not loosing… loosing “what am I loosing” I am gaining the person that I am, the person that has always lived in me… and if that isn’t enough of a self appointed conviction ” I have gained the Author in me that see my dark days and raise them into the light and share with them the beauty in my happy moments, the happiness in & for those who encircle me & I am most defiantly not loosing out on living… PPMS – “My Story” & I may not be friends or even close acquaintances but we are written into each others unpaved paths… we will have to learn to guide ourselves and our varying ways; through, around and over the terrains in our way.

---

Primary Progressive Multiple Sclerosis doesn’t define me, its try’s to trip me up from time to time… but it has given me the kick ass attitude that will not allow me to disappear behind the diagnosis that now part of my life.

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

Day #113 – “My Take On My PPMS & My Struggles That I Have With It”

So today it hit me that I am in a fight for my life… “I am busy fighting to maintain that “who person  that I am” whilst maintaining my mind and its ability to learn and maintain
information” I would struggle to lose the who and the what parts of the very person that I am… what would I do without my thoughts and my mind processing and working abilities?? I would hate to think… my god I think that I would be better off being lost to this world than I would be if I had to live in this world with a diminished reality of whom it is that I am.

I think that we all have the same thoughts that I have just had… & just like me it isn’t that these thoughts stick around to burden me everyday, they come and go just like night and day… I think that it is quite normal to start questioning ones self and ones own sanity when it is that they find themselves in the position where their health is not 100%…

For me personally… I don’t feel sick or ill, and I most definitely don’t feel lost or even depressed… I think that I am simply having one of those reflective days where I found myself wondering who and what I would become if my own mental minds capacity were to run away with the pixie’s and take up residence in a locked prism deep within me.

On many occasions when I do actually go for a doctors visit; he has an almost definitely spoiled story would ask me “if I was stressed out, finding things were getting me down, if I was having moments of self loathing or down trodden days or if I was simply taking on too much in and throughout my days”. I can’t help but tear down the generic look on his face and laugh at what I see as a silly lot of questions… I mean I know that he has a job to do and that part of his job is to gauge the welfare of his patients… but truly doc…. I do always tell him “that I don’t come to the doctor because I am feeling like a hundred bucks… that no one in most instances would go to see the doctor because they were feeling great…. I laugh and say I rarely come as it is….” he does his best to not me see his generically motioned facial expressions and always finds an oompa loompa dance to mimic my funky walk… some day he may walk like me… but kudos for his trying lol.

I try hard to lighten how it is that I am feeling by saying to him in my just as generic voice… “who wouldn’t be feeling the “race manoeuvres” of day-to-day life?

So what’s going on with me that prompted today daily write..?

As of late my daily pain tolerance levels and headachy moments have been happening on a very regular basis, have just come off a 14 day stint of constant pain and migrained day and nights.. I am telling you that I am not feeling anything else but a deflation in my energy reserves and my general persona and attitudes to say the least have me feeling pretty low… there have been far to many of these migrained and energy sucking days to count & far to many in a row to see anything positive from having these beat down days happen.

I am not bullshitting to myself and I am certainly not bullshitting any other person who
find a sense of curiosity in what has been happening to me and in my PPMS dilly dalling world… some days I find that people leave me alone, that they would rather be distant because they have little understanding of what is happening and don’t want to pry or look ignorant in their questioning… but then there are days when I am over ridden by people questions, moments where they become curious to what is actually happening… or may be they become active questioners of mine because they can feel my distance or reluctance to hold a one-sided conversation where it seems that I am holding a question and answer time or a mini lecture on my PPMS symptoms and my life’s daily journey. I do what any of these people would do or say, how would they hold their facial expressions and eye contact, if these people in these moments of un-thought-out question time would actually feel burned and scorned by the harshness of my answers to their questions that want me to spend time in answering.

How would these people feel if I was to give an 100% pointed answer to their questions… no made up fluff chucked in order to lessen the burdened blows of their answered questions… but I never or rarely do answer with a 100% connected and true answer… I always ask questions like ” how much do you truly want to know..? are you ready for the answers to the questions that you seek..? do you have time to listen to what it is that I am saying ?.. are you actually going to hear me without interruption, without prejudice and without judgement?… It never shocks me anymore to see the squirming discomfort on the faces of people of people who are nodding yes and are saying “of course I have time… & of course I will listen.. I am hearing you they say as they shuffle in their seats.

I try so hard not be intolerant of the expressions and the squirming of those around me “conversation closed” I often say as I choose to lessen their discomfort and kindly move on to a conversation that doesn’t bring on awkward moments of silence… moving on to conversations that usually revolve around their intended visit and or no real substance conversations.

I do often find myself wondering where it is that fit in to those people around me and when the conversations of those around me find my audience… sometimes I cant help but wonder when things became so awkward… has it always been this way ? or is it my PPMS that has brought out the awkward moments and silences that often come and are associated with my time with others ? I do feel that some people just have nothing to say and feel guilty for not having anything to say, an excuse that they use to hide their discomfort or uneasiness in finding my PPMS a confronting and in your face moment of seeing that my PPMS has in some way changed the person that I have always been, the remarkable thing that has metamorphosed me into anything other than the person that I am.. the me rather than the PPMS version of me that they now see.

I do feel that 9 out of 10 times (maybe a light inflation of how any times I actually think and
feel these times happen)… never-the-less; I often feel disconnected or misrepresented or
even unheard in conversations where people find themselves in a time & space where there are no words truly spoken to me & when there is no room within a conversation for
listening… I have given up trying to express how it is that I think and feel in moments when these disconnections actually arise… my eye rolling moments still exist at times… I am not completely expressionless when I am shut down, shut out of even disconnected from a conversation… I have somehow learned to keep silent in my “here we go again” moments.

Back in 2014, the very year that my PPMS actually started to show its untimely moments of funkiness to the world and to those I knew… I was very aware that there was indeed something wrong, I did have an awareness that things were not right.. I cant describe the feelings and thoughts that I was having.. I just remember saying to myself that I dint recognise myself in my thoughts or in my funky walk. I put on a persona that had me looking and acting normal (if normal was who I once was … I do often wonder what sticky description am I & do I play in my today’s journey) but as per usual I was able to push through my down … allowing me to see the sunshine in my dawning tomorrow’s.

Not everything was or is as it seems… there was a many a years where I was able to push through the tough days & the varying levels of exhaustion, I don’t like to think of this time as me being ignorant or even as days where I was able to bluff my way through the days of the onset of my concerns… then there was imposed questions asked of me that made me questions whether others were actually seeing what I was already aware of… I remember thinking “oh my gosh… I’m not going crazy – I am not imagining things… there is something wrong with me & I am not the only one who can see it…. but there were long periods of time & many days in between bouts of not feeling quite right within myself… I was able to find some sense of reconnection and normality with my bodies happenings when it became apparent that what was happening wasn’t all in my imagination.
I do often wonder how other were able to pass over what I and them were seeing… how were they able to ignore what was going on? why did they say very little? all the questions leading from are you not feeling ok, never went any further into what was actually happening to me… I did have many moments where I thought I was going insane…. I couldn’t grasp how I could be the only one who truly cared about or could see that what was going on with me.. it was obvious to me that something was wrong… I knew that others were questioning me… but they just put it down to being generally unwell… or like every other ignorant excuse that had to just have a reason for what was going on there always seemed to be a weight reason or a need for me to live a life where I was a little less stressed or even a little less busy and preoccupied by my studies or my many hobby’s. I did wonder if anyone could truly see me and or that my outward self was changing.

“I often thought that I was going crazy, thoughts overwhelmed me as I thought that I was making myself sick or giving myself the torment’s that my body was enduring & of course moments like this were met with worded speeches like if you are unwell go see the doctor, take a pill & have a nap – you will feel better tomorrow… I have spent many hours feeling and hearing my own questioning self asking me if I starting to become loony.. well maybe in hindsight I was… maybe I did have a hand in making myself feel this way.. after all how was I to know that what laid deep within me was the reason for the years that even I didn’t understand what was going on within myself, my body & my mind… all I could hear my questioning self and the how much of a toll things were taking on me and my burdened heart.There was a small part of me that talked above my questioning self, this part of me knew that I wasn’t going crazy.. some how this part of me kept me from cracking under the weight of my own self’s pressure…. my body too knew to well that there was something not right… it was my mind, my thoughts and my very deep thinking’s that had to play catch up with what was going on.

I can hear myself tapping away, thinking loudly in my head and talking myself through this very daily post… “even I am asking myself am I depressed, am I sleep deprived”… mmm those generic questions again… see even I ask them to myself… there is a small part of me that questions myself and the workings and going on’s of my body…. crazy bloody talk I say because the evidence is right in front of me… my body is its own evidence.. the pain, the funky shuffled walk, my hair falling out, the constant and life altering fatigue… all evidence of what is happening… & here I am questioning myself and the happening of my PPMS diagnosis… the energy that it takes to appear normal and undefeated by my PPMS is so bloody exhausting… it is no wonder that I was given into the burden of feeling me holding onto “the normal me” and let go in my own awareness… I am still bluffing my own normality from time to time… and I find that this normally that I fake is person dependant …. for some people see the rawness of my PPMS and others see the “I’m Doen Ok Me”…. sometimes in the midst of the watching eyes of other people’s questioning it is easy to ignore my PPMS and fake a controlled walk.. for I have found that people can be very hurtful in their questioning (unbeknown to them) they ask question like will exercise or weight loss help… ? did you get MS from being on your computer all the time ? why don’t you rest or take a pill… ? and then there is the classic and most heard “oh I am so glad that it is you that has Ms and not me… I had the flu last week… that was bad enough.”

I want it to be said here that I am not depressed and I am certainly not going crazy, a pill wont fix me and I am certainly not faking what is happening with me … PPMS and I are now life partners… amusement parks in the ways that we walk… my PPMS story is my journey and his name is “My Story” – I do get very frustrated with the happenings of my body… & and do indeed see some days and the events of the bad days as an endless list of chores and I have to get it done’s… the stop starts to my daily journey at times has to take a back door to my fatigue levels – the very thing that see’s me need to take time out of my day for a nap… ” a lazy moment no!!! ” – without these down time moments I feel, and I know to well that I would be even worse than I am on a bad day… a possible scenario would be that I would find myself collapsed and in the hospital if I was to ignore these down moments.

I have become aware… oh so very ware of how frustrated I have become with my PPMS, my fatigue levels, my funky walk and the many other symptoms that I and my highly decorated PPMS body & mind … they ar my daily reminders… the reminders that now happen each
and every day without even so much as a day’s break… there is no such thing as a PPMS, fatigue & funky walk free day… PPMS has taken many years to rear its existence in my
body… it is here to stay… embrace it or suffer the consequences of day long pain and suffering are my daily choices… I so many years ago used to love to find myself lost in my hustle and bustle of busy work, studying and hobby riddled life… PPMS now reminds me of the breaks that I should give to myself… whilst my work load and hobby lists have changed some.. I am still the me that I was yesterday… I have the same interests and the same wants… I just now have a frustrating life altering shadowing walking through life with me.

 

---

Here is my long thought-out thoughts for the day… my daily write… my take on my PPMS and my struggles that I Have with it… but it also shows how I embrace it and except that “My Story & PPMS” is now how I roll but that it hasn’t changed that me that yesterday. This is my personal story, my journey… this is the no bullshit side of me.

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

Day # 103 – “Ms Laugables”

Since my diagnosis of ” My Story – Primary Progressive Multiple Sclerosis” – way back in 2014… (“My Story” is the name that I have given to my PPMS companion) I have had to make friends with “My Story”… I even thank him kindly when he makes me crash head first into the walls of my hallway… I don’t particularly find it funny when he trips me up on my many times folded socks (I have small feet and my socks have a mind of their own, together “My Story” and my socks work hard at pissing me off), but I give them a mouthful.. throwing my sox into the washing basket screaming you deserve far worse treatment but maybe a spin in the washing machine will teach you who is boss..

“I have had PPMS for far more years than I have actually had a diagnosis… I just told myself for nearly 20 years that I would be
ok after a good nights sleep… that tomorrow would be a better day… “My Story” decided that he wanted to come out & then he decided that he was here to stay”

It sounds ridiculous… but getting mad only feeds the pain and symptoms… of “My Story” and my PPMS… I have found that humour humiliates both my symptoms and my ass-kicking socks and momentarily I feel a release of it’s at times overwhelming pain threshold that it can at times have over me.

I Have Primary Progressive Multiple Sclerosis, It Can & Will Kick Me In The Ass When It So Has The Need & Or Want To… But Humour Keeps It’s Hold On Me From Knocking Me To The Floor.

I have on many occasions been told that I am way to positive about my PPMS diagnosis “Like Really – Was That A Sentence, A Statement Or A Judgement ?” I have told many people over the years since my diagnosis that there is truly no point in seeing the bad side of my PPMS & its day-to-day struggle… I get up everyday knowing that at this moment in time that there is no cure for Ms, that there is only trials, treatments and day to day struggles…

Crying down & screaming “why me ?” isn’t for me, Ms on some days may have a tight grip on my pain threshold, but I believe that humour and giving it an identity like I have (I call my PPMS “My Story – Ms For Short” keeps the strong hold and the amount of medications that I have to take down to the minimum.

I do have bad days and there are days when my fatigue and pain levels are through the room, there are days when I find new bruises on my body and marvel at the
colours that they come out in & there are days when my furnishings and my wall structures & door try to make friends with me…. I do have bad days… I do have days when I find myself in bed but it’s my mind, body & souls choice to get up everyday and see each day as a chance to see a new dawns breaking & the end of the days sun’s setting.

I want those who question what Ms is truly like, is it a chronic illness that gives its diagnosee’s symptoms that can be used for sympathy or empathy from others… ? to those people I say “I hope that you never are on the position where the Ms Karma but has its sight aimed and driving directly for you… Ms is not an illness that can be faked – it is a truly painful chronic condition with far more symptoms than this blog post covers.

Ms is a chronic, often disabling disease that attacks the central nervous system (the brain and the spinal cord). … The progress, severity, and specific symptoms of MS in any one person cannot be predicted.

No two people with Ms suffer the same way, the symptoms and levels of disability vary from person to person. Multiple sclerosis is not contagious, but it is progressive and unpredictable. … A person with MS can will and does learn to live with their day-to-day symptoms and their level of disability…

I want people to know that people with Multiple Sclerosis are real people with real feelings & they can most defiantly hear you when they hear people say “are they faking ?, are they for real ? Ms warriors are approachable people, they may surprise you in their knowledge and life’s lessons that they have learnt for their years of living with Ms and it many varying symptoms.
I will put it to you way ….
Stop Starring, Stop Questioning & sit down and learn something from someone who lives each day with Ms in their life… Ms isn’t curable and it certainly isn’t contagious… & Ms warrior are people with real lives, they work, they have families, they are mothers, fathers, daughters & sons – Ms warriors are built tough because they know what it is like to fight for the strengths that they carry in their stories.

” I refuse to use MS as a crutch or an excuse for the bad days that may block my day-to-day paths, I put on a brave face each & everyday… wearing strength & inner perseverance like a super hero cape even when the days have me feeling like I have no energy to power on.”

” I May Have Ms, But Ms Doesn’t Have Me !! “

Written By
Tanya Kelly

---

Get Back Up Again by Anna Kendrick

Hey!
I’m not giving up today
There’s nothing getting in my way
And if you knock knock me over
I will get back up again, oh
If something goes a little wrong
Well you can go ahead and bring it on
‘Cause if you knock knock me over, I will get back up again

Whoa oh oh oh oh, get back up again, whoa oh oh oh oh oh (I’m okay)
Whoa oh oh oh oh
And if you knock knock me over, you knock knock me over
I will get back up again

I’m marching along I got confidence
I’m cooler than a pack of peppermints
And I haven’t been this excited since
I can’t remember when!
_____________________________
Please Watch This Beautiful Video Clip By Anna Kendrick – Titled ” Get Back Up Again ” & Listen To It’s Energising Words & Know That This Is How I Truly Feel When I Am In The Cross Hairs Of “My Story  & My Primary Progressive Multiple Sclerosis Bad Days.I draw strength and the courage that takes up much of my energy because I have a want and a will to live… I know what’s important to me & I know that my Family & Friends give me the air in my lungs to see the bad to through to their rises and falls.

Being strong isn’t always an easy feat… but I do the best that I can in my every day’s journey’s.

https://youtu.be/Yf5o-d0qg1g
_____________________________
Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

Day # 83 – Pep Talk Day

Very few words were spoken today, instead I spent the day pep talking myself, giving myself the strength and the time out that I needed to find inner peace within me.

Firstly this pictured quote that I am found strength in writes:

“Respect your body when it’s asking for a break.
Respect your mind when it’s seeking to rest.
Honour yourself when you need a moment.”

Author.
Notes Creator

This pictured quote gave me the greatest strengths today.. it told me in a symbolic embrace to see myself and my body’s pain in all it’s here’s and now’s… let the trying moments of my hurting days to be allowed to take the break that it needs to replenish its strength. This Pictured quote was a message that gives me the message of “learn to respect me and how my body feels and needs time to heal.”

This self respect message came to me when I needed it most… I have been pushing hard to be all to everyone – putting myself way past the end zone of my own needs. “I know I need a moment to find the time that my body needs to build up the strength that it needs to carry me on through to the junction in my road. Its time to listen to my body… and today I heard it loud and clear.

---

In this pictured quote the message that has the following words scribed into it says:

The strength of your soul
Was born on the backs of moments
That brought me to my knees.

Author.
S.L. Healon

The message that was delivered to me in this pictured quote was a strong reminder of how I became me.

I have indeed seen some of the worst sides of human nature and the behaviours that make up people. I have indeed been hurt and felt the greatest of pains both in my heart and throughout my body… so what this pictured quote reminded me of is the many times that I have been brought to my knees, but have found the strength and the courage to bring myself to an upright position, placing my head high and my eyes set firmly on the path that was ahead of me…

Proving to me that even at the worst stages of my life I was able to be my own backbone and I am here today because I chose not to give up on any of my previously hard days.

---

When Life’s challenges become harder,
Challenge yourself to become stronger.

Author.
Unknown

This week I have had to learn to breathe deeply… my week delivered me and Primary Progressive Multiple Sclerosis – “My Story” an ass kicking and a reality check into what happens when I don’t listen to my body need to say enough is enough… I failed to heed my bodies warning signs and it in return decided to turn the outcome into a lesson of gruelling pain.

My body challenged me emotionally, physically and mentally this week & it has left me a little weaker than I would like.. but I have learned the message that it was screaming at me “I know now that I must take time out for my body to catch its breath and pace”… I will indeed take this weeks challenges and lessons and be the mindful strength that my body and I need.

---

This pictured quote is a quote that I found whilst looking for memes that relate to Multiple Sclerosis.

This meme’s Author is.
MSMultipleSclerosis.net

Ms continually challenges me
To find balance between
Pride & Humility.

I wrote the following this week in another written blog post:

I guess I now know what extreme heated days , fatigue & Multiple Sclerosis can do to a person… what I haven’t said is that I have also lived with my light weight cardigan in my lap this week… because I have not only had extreme heated body temperatures taking me out of the realm of my comfort levels… I have also had moments where my temperatures plunged to the ground and had me putting my cardigan and socks on and off… I must have looked like an igloo man coming out of the Antarctic lands straight into the desert waste lands and only to return back again to blazing sun heat days.

I know that there will be days when my Ms symptoms will spend the days peeking to their highest levels of annoyance… pushing my pain level and my tolerance to the to the highest level of my pain threshold… but I am optimistic & hoping for a better week.. emotionally, physically, mentally & socially… this Truly was my worst week ever since my Ms Diagnosis… I am hoping to not have many more of these days… “Here’s Hoping For A Better Week.

This week has taught me a valuable lesson in asking and in seeking help… the heated days and nights defiantly took e beyond my limits… I knew that I was feeling week, but it is never me to give up… but I know now that continuing on and pushing myself harder to complete my daily’s jobs was the very thing that undid me and turned my bad days into nightmare driven painful moments that took 6 days to come through.

I am to proud for my own good… I don’t like asking for help… I knew that I needed it but my pride forbid me to ask for it… yes I had a low level outlook of my own needs and importance.. I took my body for granted and it gave me a spin rinse and wash.

---

This pictured quote depicts what it is that I have leant this week in my trying times and how I should prevent a repeat of this week happening ever again.

When I am resting
On a “Fare Up Day”
I need to remember that I am not wasting the entire day doing nothing.
I am doing exactly what I need to do.
I’m recovering.

Author.
Unknown

Simply putting it I walked the long road to learning the words “Not Today”
I pushed my body and my mind set out of their pyjamas and right back into the rat race of life…
I took it upon myself to allow myself to feel that others were relying on me to be me and to simply get things done… when my body needed rest it screamed and screamed… falling on deaf ears my “flare up” became my bodies enemy and it certainly took care of me…

It is usual for me to feel guilty for the things that I didn’t get done throughout my day..
& being told that I am lazy or relying to heavily on other to see that my needs and wants are met; serves to spur me on and pushes me out of my rest. I thought that I was a person who cared little for the what others had to say… but clearly my thoughts are incorrect or I would have stayed in bed to rest.

Taking a day here & there doesn’t mean that I am lazy… I know this oh so well
When my body signals its warning signs
I now know to stop & listen.

Rest isn’t for the weak or lazy,
It’s for the greater good  of this vessel that I call my soul & body.

---

There are so many lessons and words of advice that I could offer to those who are standing on the outskirts of a loved one or a person in their midst… giving them the knowledge of what it it is like to have a life altering illness… but I think my time would be better spent encouraging them to hear the many messages that scream to with in no-verballed tones to simply lend a hand…

Firstly the worst thing that a person could tell a person with a life altering illness is  to “tell them to get over it”
There is a degree of ignore in the toned voice of these very words… why instead of watching the struggle don’t you just get down to a struggling person’s out stretched hand ” & help them get through it…”

Another important lesson that I would surmise to teach is:-

Never underestimate
The pain of a person,
Because in all honesty,
Everyone is struggling.
Just some people are
Better at hiding it
Than others.

Author.
www.healtyplace.com

Not every  persons pain is visible and no two people feel pain in the same way… and for some people (myself included) we choose to keep our inner struggles and our inner woe’s to ourselves – preferring to suffer in silence then to see pity and disgust on the faces of the people we love and trust).

Truth be known we are all struggling in some way shape or form… no-one has the perfect life of no aches, pains or groans… empathy & compassion will go further in the
life and world of someone needing a moment of care and understanding.

A written quote by Lupie Linda sums up my every thought…

When you have a chronic illness,
How you feel Changes from day to day,
Hour to hour
& even minute to minute.
I never Know how I’ll feel.

For those standing on the outskirts of a person with a chronic illness; it may seem that plans get changed or even broken … and that excuses of tiredness and exhaustion are the words that are often spoken… “I read a meme just this week that said.. no matter how much rest I may take, my tired symptoms rarely leaves me to just be me.”

Lessons Learned In Life writes on their meme the following words of wisdom and offers up a great word of advice:

No matter what you do
Someone will always talk about you.
Someone will always question your judgement.
Someone will always doubt you.
So just smile and make choices
you can live with.

I say right on  “Lessons Learned In Life”… run your own race at your own pace… listen to everything that you are told and hear, divide it in half, throw one half away and what you will be left with; is what you know and believe is the truth.

I have gained much personal insight this week into how it is that I cope when I am in grips of strong handed pain… and I have most defiantly seen myself in the grasp of unrelenting pain… I have seen the not so likeable me pushing to offer assistance as far away from me as I could get them… I have seen those around me struggling to take away my pain… I have seen as I have yelled and screamed that no one can hear the words that scream out “I Need help !”

I have also learned another very valuable lesson that cuts me to my core.. & that would be well founded in the words of the bellow written quote:

My biggest regrets in life are
Being to damn nice,
Apologising when I didn’t do anything wrong
& making unworthy people
A priority.

What I Learned this week in the depths of my Primary Progressive Multiple Sclerosis’s death grip is what true humanity, love and plain & simply who gives a shit…

I have been in a position to watch the people that I love and know be in position of unmeasurable pain… I cant ever remember a time when I turned my back and simply walked away… it may be true that pain changes who it is that we are, and how it is that we act when we are brought to the kneeling stance praying for a moment to breathe… but nothing has prepared me for the ignorance that some blank faces have shown me… my diagnosis of PPMS has shown me the raw bones of my inner smile…

There is so much strength in a person who is seen the strength of strong pain… there is even a far greater strength on those who use their pain to find the inner strength to stand and scream “wow.. shit what a ride” – laughing at the grips that tighten around their every in and outed breath.

I so hope with hand on my heart hope that this weeks onslaught of weathered heat and body driven by Ms pain never meets again… I certainly have had my share of ups and downs and I have seen my sanity take a dive… but the one thing that I take from this weeks painful body blows is that I am strong and very capable of standing and admitting to my deep and raw pain… I appreciate that I could see the bad side of hat my pain can do to me… and I can appreciate now the lessons that I should have all along been listening to… that sixth sense that tells me something’s can sit on the back burner that it is time for my body to rest.

This week was most certainly a week of  humility smacking my pride in its face.

“Now, every time
I witness a strong person,
I want to know;
What darkness did you
Conquer in your story?
Mountains do not rise
Without earthquakes.”

Author.
Katherine MacKenett
The Minds Journal

I was that person that the above written quote talks of, just this week in my
“Primary Progressive Multiple Sclerosis’s Earthquaking Journey”

Whilst I may have seen the inner darkness of my pain and it’s tolerance, I know that I will never conquer my “Ms Story” or the path that lies in its ruins… but I am a witness to my own body’s lessons and now it is up to me to find the time to sit in the wake of my pain delivered memories and learnt what it is that my body is telling me.

I will finish  today daily blog submission off with a quote that I saw today.

” Bend Don’t Break Be Flexible Yet Stand Firmly Rooted “

oh yah before I forget… here is my final thought

” wow.. Shit What A Ride “

---

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

Day # 80 – Way To Go Ms… “You Kicked My Ass & Took Me To The Peek Of My Tolerance”

What a week hey… such an exhausting week both mentally and emotionally… spurred on by Australia’s sunburnt country weather…

This week in Sydney the temperatures have ranged from 36 – 45 degrees… the days are long and spent eating ice-blocks and sucking the cool air up from the air conditioner… our fans are busily working overtime and there never seems to enough cool air or personal space for the airspace around any of us.

So this week in the long hours of 36-45 degree temperatures and the extremely high humidity of 98%, I have learned what having Primary Progressive Multiple Sclerosis truly is and how it alters you as a person.

I have over the many years since my diagnosis had many a tough days but honestly nothing like I have experienced in the last 5-7… my fatigue levels have been through the roof and my body has been playing tiddlywinks with my body’s capabilities and abilities… I can’t remember ever being so damn tired… my week has been a never-ending revolving door of “Wake Up ==> Pretend That I’m Ok ==> Sleep…. & Repeat “… it would be great if all my fatigue symptoms gave me the sleep that my required.. but nope… I can’t tell you how overwhelmed I have been by my bodies fatigue levels.

Being tired and having feelings of feeling overwhelmingly tired hasn’t helped me or my attitude much this week… possibly a trigger to what has been a mammoth kick ass Ms moment. The moods that bring forth the need for an attitude adjust have delivered me many hours of self-inflicted isolation… I have found that this past week was a week where people need not have been around me… how truly hard-hitting has my Ms kick ass attacks have been on me this week are unmeasurable…

Right now it is a lot cooler here in Sydney.. but sadly the temperatures will spike again next week… & as you can see the humidity is still pretty high… but the temperatures have cooled the mountains that I live in by well over 20 degree’s…

I think I have had my ass handed to me this week… for the first time in 5 years my Ms and my lack of empathy driven body has felt the heat and the full force of its agonising symptoms…

I guess I now know what extreme heated days , fatigue & Multiple Sclerosis can do to a person… what I haven’t said is that I have also lived with my light weight cardigan in my lap this week… because I have not only had extreme heated body temperatures taking me out of the realm of my comfort levels… I have also had moments where my temperatures plunged to the ground and had me putting my cardigan and socks on and off… I must have looked like an igloo man coming out of the Antarctic lands straight into the desert waste lands and only to return back again to blazing sun heat days.

I know that there will be days when my Ms symptoms will spend the days peeking to their highest levels of annoyance… pushing my pain level and my tolerance to the to the highest level of my pain threshold… but I am optimistic & hoping for a better week.. emotionally, physically, mentally & socially… this Truly was my worst week ever since my Ms Diagnosis… I am hoping to not have many more of these days… “Here’s Hoping For A Better Week.

---

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

Day #44 – “Self Gratitude”

“To work on yourself is the best thing you can do.

Accept that you are not perfect,

but you are Enough.

And then start working on

everything that destroys you.

Your insecurities, your ego, your dark thoughts.

You will see, in the end, you’re going to

Make peace with yourself. And that’s the

The greatest thing in the world.”

Author: Poems Porn

Facebook – www.facebook.com/PoemsPorn

---

In today’s daily blog submission I want to write about a new aspect of me that I have always been aware of; I have always known that my self-gratitude existed but I guess that I have never opened myself up to acknowledge it in an open spoken or written form.

There are many moments throughout my daily writings that I touch on the things about me that keep me going and the events of my life that have paved my path through my life, there are also some moments where I pay homage to aspects of my life, but I haven’t truly sat down and written about the things about me that give me self-gratitude.

Amongst the few things about me that I do not like about myself

• Hair falling out
• Heavy tired looking eyes/eye squint
• Heavy set body frame
• Dry Skin
• A few of my Multiple Sclerosis symptoms
• My moodiness
• My understanding yet ungiving attitude

(These things about me that I can either ignore or modify in order to make me more likeable to my own self).

So you think that I am being a little harsh or a little vein towards the things that I don’t like about myself …? Honestly, I don’t think its that I don’t like these things about myself; I just think that they are the very things about myself that I continuously make efforts on that at times seem as they work against me or take up so much of my time.

My hair started to fall out when I had Nichaalus in 2001, but although it never grew back to its fullest… my hair was more manageable and less heavy but certainly wasn’t patchy. The doctors back then just put it down to hormones after having a baby… & the possibility of my gallbladder troubles causing an imbalance in my body.

By the time I had Katijana my hair loss was no longer able to be ignored but I could still hide the patchiness from the questionable eyes of others. Then one day I was sitting at the nail salon and a simple question “what have you done to your hair, have you done something different?… I knew without question what was being seen and I knew that hiding my very patchy hair was no longer something that I could do… my hair used to be so thick and heavy and constantly needed to be thinned out… I, of course, felt devastated about my hair falling out.

So fast forward a few years and although my hair patchiness still bothers me… the days where my hair concerns can be ignored are far greater than the days that are filled with bothersome thoughts of it.

My Multiple Sclerosis is, of course, is a huge hurdle in my life’s path that has caused me to alter the way I go around things:-

• I don’t drive as much as I used to (I get a little lost about this, and feel a little sheltered by others – whilst it is my decision not to drive as much as I used to, being asked constantly if I am capable “as if I would drive if I wasn’t feeling capable” statements like this just make me sit back and wonder what others see in me.
• My walking in an unbalanced ping-pong manner make me self-conscious and the querying eyes of others makes me feel that I am being judged and looked at differently.
• As part of my Multiple Sclerosis I have some major timing issues, things at times can take a greater amount of time to get done i.e. showering, getting dressed etc. Going out and doing simple things like shopping and filling up the car with fuel (I can still do) but find the struggles of walking to the fuel paying counter hard due to the floor texture changes and the shopping brings stresses that are unmeasurable… I can shop but struggle to walk and push the trolley, picking things that I need off the shelves can leave me dizzy, carrying bags is at times too heavy & loading up the car if I survive the shopping trip just leaves me exhausted.
• Another symptom of my Multiple Sclerosis is my dry skin… especially around my monthly cycle the vicious cycle of dry, hot, burning, itching skin in 3-4 place leaves me feeling as though I cannot expect Steve to want to be near me, if I use moisturiser every day I get either cold or oily and hate it because the moisturiser makes my body feel that is sweating but without the moisturiser I can go through the skin cycle written above.
• I guess the worst part of my Multiple Sclerosis is how isolated I can feel… sometimes I choose to not join in on outings to save other people from struggling with other people staring at me or having to wait for me to catch up or even having to push me in my chair…. but there is apart of my isolation that I do see from others… talking in quiet and silent voices, saying things like I didn’t think that you would want to go…. I guess people won’t admit to this and truly I don’t expect or want them to admit to doing this but I would much rather not see these isolating behaviours from others.

My Heavy Darkened Eyes

• My sister when we were kids used to call me a boggled eyed goldfish… this hurt a lot but I never showed her how much it hurt because it would have given her way to much power over my feelings.
• My eyes at times can make me appear to look tired… and although I am naturally cross-eyed in my left eye I am very capable of not showing that I am not cross-eyed. I live in my sunglasses so I don’t have to answer questions like are you cross-eyed? or what are you staring at? At this stage in my life I have perfect control over being cross-eyed, there are few people if any that actually are aware that I am cross-eyed.
• Most days I can hide my dark and heavy eyes by the use of my eye correction pen that helps with dark circles…. mix that up with makeup and mascara and I can often ignore my heavy darkened eyes. A good morning date with my cumber slices also helps.

Heavy Set Body Frame

• Being A Person With A Heavy Set Body Frame can at times be the cruellest of things, I am by no means insecure or disliking of my body but do feel that other people can be very harsh when it comes to the judgement of others… I am short. Yes, I could possibly lose a few pounds… Yes… but feeling that people feel that my Multiple Sclerosis is indicative of my weight is a tear-jerking moment for me… I certainly am not lazy and certainly do not expect more from people than I am willing to do for others… but people are very harsh, rude and very judgemental… whether it is human nature or not… my size and stature is not the reason for my Multiple Sclerosis.

My Understanding Yet Ungiving Attitude

• My understanding yet ungiving attitude, well it is no secret that I have an attitude and know how to use it, but what some people don’t realise is that my attitude is usually my self-defences coming to the surface… these self-defences serve me well; I am not ashamed to say that I have an attitude that can at time cone across to as others as be rude… I am not rude unless I have to be… I use my attitude to defend others… it is my formidable voice that I think others take note of and can’t quite see why I bother myself in the problems of other people… the answer is simple … If I feel that others are being backed into a wall either through bullying or through attacking I feel that these people need to feel that someone is on their side regardless of the reason for them being set on by others.
• I have been told so many time that my attitude can be a contradiction of who I am… on one hand my attitude is often used to defend myself and others from the attacking/bullying of others… and on the other hand my attitude can scare people away from getting to know who it is that I am; people often see my attitude as rude rather than me becoming being a person who is is headstrong and not willing to take shit from others.
• I do have a very giving personality… I do put so much effort into others and choose to do so because I see the value in people… my attitude I feel is a perception of other people… “I don’t have an attitude problem, You have a perception problem” kind of a thought.
• My take on my attitude is this… it takes a great person to help unpack the baggage of another (attitudes included) and I strongly believe that if people could unwrap my inner self before judgement is passed on my attitude that they would see why my attitude exists and what makes my attitude what it is.

So for me, my gratitude to myself is very much written in today’s daily blog  submission titled “Self Gratitude” pictured quote – written by “poems porn” –

“To work on yourself is the best thing you can do.

Accept that you are not perfect,

but you are Enough.

And then start working on

everything that destroys you.

Your insecurities, your ego, your dark thoughts.

You will see, in the end, you’re going to

Make peace with yourself. And that’s the Greatest thing in the world.”

I work every day on myself… in more than 1 way…

• Mentally I work with myself in process of learning to ignore the harsh words of others… I am starting to believe that the words of others are nothing more than s reflection of themselves seeing something in their own selves that is either missing or making them feel insecure in their own lives.
• My insecurities, on the other hand, are just things about myself that I can only help to manage… I know that my insecurities that circle around my Multiple Sclerosis diagnoses will never be fully dealt with…owning my concerns and managing them when they boil to the surface is the best that I have to offer myself and others.

I am in control of the very things that work against me in the process of what yesterday would have destroyed me…whilst I have always been strong willed and strong minded… I truly feel that my strong self and the strength that I possess has been something that I have learned rather than it being something that I was born with… I am strong because I won’t be hurt or be taken down by the rudeness or hurtful attitude/words of others…

A Song That Is A Mantra & Testament To My Strength Is; Wilson Phillips’s Song “You Won’t See Me Cry”….. below are two verses that helps to sum up the strengths that I have in myself and for myself.

“You Won’t See Me Cry”

You won’t see me cry.

I’ve got no choice but to face it.

I have to let you know that I don’t like it.

You won’t see me cry.

You know I decided.

that I’m gonna pull myself together and find a way to fight it.

Oh no. Even if I have to hide it.

You won’t see me cry.

---

My Self Gratitude

I have so many things to be grateful for… my gratitude hasn’t just been an overnight reality… I have had to learn patience and self-acceptance & I will be the first to admit that being grateful for my own self’s inner working has taken a great deal of time and strength in the acknowledgment fazes of getting to know me.

• I am very grateful for my attitude; both good and bad (it delivers me from evil and helps me to show others that I am not a person who will be walked over or disregard). My attitude keeps me true to my self & in touch with my core beliefs and inner core values.
• Through my self gratitude I have learned that I have always had a self sabotaging attitude that has taken me away from who I wanted to be … my optimistic pessimistic attitude that allows me to see the good in the bad and the bad in good has led me to always question myself and the things that I am doing, I am grateful that I am learning to control this element of myself… I look forward now to the changes that I will be able to make that will help me to live my life in a self-fulfilling nurturing environment.
• I am grateful for my struggles for they have taught me to work hard for the everything that is in my life, no excepting hand out and putting my all into my family and my life’s needs have made me honest and honourable.
• I am grateful that I am learning to be more patient with myself and others… learning that nothing great in life is just given to you… that the gratitude is in the working towards one’s life’s wants.
• I am grateful that I can see my impatience in my Multiple Sclerosis diagnoses… I believe that if I was comfortable with my life changing due to the inabilities that my MS gives me that I would never truly learn to cope with future life’s changes and the lifestyle that I would have to be forced to adapt to.
• I am very grateful that I have become a lot calmer within myself…learning to choose my battles rather than going head-on into snapping at the bitt or the heads of those who piss me off.
• I am grateful that I do the best that I can do every day for the greater good of myself and my own self-happiness. This, in turn, helps me put my everything into being the person that I am for my a Family.
• I most particularly grateful for my self-acceptance.. being ok with myself, being comfortable in my own skin (even on the bad days I can see the good in what acceptance of my bad days is trying to teach me).
• Above all My gratitude plays homage to words that I write every day, it has been s a long way back to my writing and to the download of my thoughts… writing has always meant a lot to me and now that I am back into writing every day I feel less frustrated and much happier within myself.

Gratitude Meaning

“the appreciation of what is valuable and meaningful to oneself and represents a general state of thankfulness and/or appreciation” (Sansone & Sansone, 2010).

Two Stages Of Gratitude:-

According to Dr. Robert Emmons, the feeling of gratitude involves two stages (2003):

1. First comes the acknowledgment of goodness in one’s life. In a state of gratitude, we say yes to life. We affirm that all in all, life is good, and has elements that make it not just worth living, but rich in texture and detail. The acknowledgment that we have received something gratifies us, both by its presence and by the effort the giver put into choosing it.
2. Second, gratitude is recognizing that some of the sources of this goodness lie outside the self. At this stage, the object of gratitude is other-directed; one can be grateful to other people, to animals, and to the world, but not to oneself. At this stage, we recognize not only the goodness in our lives, but who is to thank for it, and who have made sacrifices so that we could be happy.The two stages of gratitude comprises of the recognition  of the goodness in our lives, and then of the source of that goodness that lies outside of ourselves. By this process, we recognize everything and everyone that makes us who we are in our best moments.

(Reference – https://positivepsychologyprogram.com/gratitude-appreciation/#stages)

Self Gratitude isn’t 100% with me yet… but I am getting there, I am working hard on being a better me and I am beginning to see the value in being self-grateful.

So today’s daily blog submission is on “Self Gratitude” – a self-appreciated exercise that I will again in my later submissions revisit.

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

Day #42 – “ True Innocence Of A Child & A Smirking Smile Brought Happiness To My Face Today ”

Someone asked me a question today… I was humbled by the look on the total strangers face when they looked at me through their curiously questioning innocent eyes…

I was asked how I find the strength to smile at people and wish them a happy day when I am obviously struggling with pain that is at times unmeasurable?

Firstly my story began when I was sitting alone at a park watching my children rough and tumble together as they played ball in the not so far off distance.

Innocent eyes were looking at me and I could see a question or three begging to be answered as I looked up from my writings on my phone.

Why do you have wheels on your chair said the shy voice of a little girl shyly clinging to her mother’s leg…

I overheard her mummy say, don’t be rude…

I caught onto the little girl’s mothers gaze as she too shyly looked away… I learned through a few questions that her name was Aimee… telling her how to spell her name in her answer.

How old are you? I asked Aimee… she replied I am 6…

Do you go to school? I asked Aimee… yes she said I am in kindergarten… smiling I told her that kindy class is where all the fun is had … smiling at her I said to her “I bet you have many friends.” She smiled and said she does…

Her questioning face came again… are you alone because you don’t have any friends… I smirked at her and said, “no hunni I have many friends”… I told her that I was at the park watching as my children played in the park… playing ball..zip lining and take pictures for a photography assignment…pointing out the silhouetted shapes of my children off in the distance.

Can you play still? …. I looked at mum who introduced herself as Michelle…. “yes Aimee I can play, I can walk also …. just slowly and at times a little unsteady”

I looked at Michelle & Aimee and told them that I had Multiple Sclerosis… Aimee was curious… what is Multiple Sclerosis….?

I noticed that Michelle had earphones connected to her phone… so I asked pointing at them, could I… Michelle handed her earphones to me and I began telling Aimee that the earphones were her … Showing her by playing with them making shapes … showing her that they happy playing and running in the sun…

I then show her the earphones tied up in a knot that this was me …. looking a little messy but still able to play and make shapes…

I told Amee that the earphones had a few strands of wires running from the earplugs to the end that plugs into her mum’s phone… I told her my wires are a little broken or have broken pieces…. that when my wires are broken that the music may not play correctly through the earphones, that one side may work and the other may not….. I told Amee that music plays in me because I won’t let my broken wires break me…

Aimee smiled and said mum know what’s wrong with your phone and earphones now… I told you that I didn’t break your earphones when I used them as a skipping rope… they have Multiple Sclerosis…

Aimee ran off to play on the swing… happy to know that skipping with her Mothers earphones wasn’t the reason why they no longer worked… I couldn’t help but laugh as I saw Michelle look up and say, kids, hey!

Michelle said thanks for talking with Aimee… & then asked how do you find the strength to smile at people and wish them a happy day when I am obviously struggling with pain that is at times unmeasurable?

Well, I said… there is no point in crying all the time I said… my body has been giving me signs of my Multiple Sclerosis for many years but has allowed me to raise my kids to an age where they were no longer 100% dependant on me… I told her that it’s been a manageable pain till the last few years and that my wheelchair was so that I can be part of people around me without the struggles that my walking brings me.

I told her that my active mind & many skills sets keep me from getting bogged down by the doom and gloom of my Multiple Sclerosis… happiness isn’t always within my smile I told Michelle… but crying only takes me away from beautiful moments like today.

I saw Michelle smile and I said some skipping rope hey…. she smirked and said yep! Both laughing I asked Michelle if I could write about our encounter in my daily blog writing… she asked me then… what will people see when they read your story… I said smiling hard at her … “They will see a little girl skipping with her Mums earphones… and they will see that they are no longer working because they have broken wires and now have Multiple Sclerosis…. laughing so hard… Amee joined us again… are you still mad at me mum? Michelle said, “no Amee… we both learned a lot today… sometimes earphone just stop working… we can always get another pair.”

I went back to my writing as Amee asked if she could now have the ice cream that she was told that she couldn’t have because she was naughty…. laughing again… Michelle again said, kids, hey! Such innocence in her simple life.

They thanked me for my story and began skipping off to their car. I watched as they sat in their car and drove out of sight… A small tear gathered at the corner of my eye… balling up and rolling down my cheek… a single tear and the simpleness of a young child’s storied interpretations… was the beginning to me writing this blog post.

“ True innocence of a child and a smirking smile brought happiness to my face today.”

Todays chosen pictured quote gave me a small slap back into reality. It through Aimee’s innocence has shown me that through the toughest of days that in the tomorrow’s that will follow that there is much beauty awaiting me after my body’s storms.

Today’s Pictured Quote:

“Even on the gruelling days
When reality bites too hard,
I may hang my head
For a little while
But my eyes
Are still full of stars.”
Author: A. Shea

“Thank you Aimee & Michelle for showing me that skipping was not the reason for my broken wires.”

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

 

Day #40 – Spurred On By An Ms Meme

Today’s daily write has been spurred on by a Multiple Sclerosis meme that I saw this morning on my daily read of what I affectionately call “the newspaper- i.e. Facebook.”

The meme reads –
“It’s weird, but M.S. can help you appreciate THINGS what you ONCE OVERLOOKED“

This Meme was founded at a Facebook page titled “MS Memes and more Multiple Sclerosis Information” https://m.facebook.com/msmemesandmore

Well, this meme got me thinking & I just had to rewrite this meme to suit my own Ms Story and my outlook on my life.

So my rewrite of the above meme is this…

“My M.S diagnosis has taught me lessons that I didn’t see coming… I have seen my true worth through the eyes and actions of others and I have seen how my inabilities make others truly feel.

I have never overlooked the behaviours of others but I see things a hell of a lot clearer now that they have revealed their true & selves.

I know my worth in the actions of those who walk beside me without judgement… choosing to see me for whom I have always been & I have seen those who have made the choice to walk along in the far off distance either by judgment or by choice… & who in these communities who it is that I can trust… those who aren’t with me; I know that I should let them be alone to question their own mind & self.”

---

In our everyday happenings, we become acceptable of behaviours that are placed upon us in varying degrees of acceptance and non-acceptance.

There are times that pass by us when we are in allowance of other people’s opinions and their thinking thoughts that they have about us, but I believe that in time where illness and struggles knock on our door… I believe that we find out who was truly there for us and who never truly has been.

I have learned that my Multiple Sclerosis acceptance isn’t about me learning about my life that is limited by my daily symptoms… it is about how others feel that I should see myself in and through the eyes of themselves.

---

Let me put my thoughts to you as clear and as simply as I can… “I do not overlook the
actions and or talkings of others… and I do not accept the behaviours and or actions of other people either… but what I do do is… I acknowledge that it is human nature for people to live in question of others.

I have made my choice to see that people who have no place for me in their world- in full acceptance of my Ms diagnosis and my day to day limitations are part of my past that I simply was ok to live in their yesterday’s ignorance’s but today I am not.”

Friends will come and others will pass by, people that we hold dear and close to our heart will push us to the limits of our very core – the struggles associated will in time pass, but the length of time and longingness for the familiar voices will never leave but this too is a symptom of the Ms illness that only the one living with it can see.

I take pride in myself when I tell you that I try with all my might to live without judgement of others. Physical characteristics are only just a covering to who people are… I know what judgement feels like so I choose to live my life giving what I can to other allowing them the room to teach me about their life.

“I want to make it clear that I make no apologies for who it is that people perceive me to be… I live my life in a world of pain from the time the sun rises till the very moment that the night gives into the morning’s dawn…. the energy that it takes up explaining why it is that my body and mind need moments of the days to turn off and seek rest … overwhelms me at a far greater pace than the actual Ms symptoms.”

---

I am ever so impressed by someone who comes to me asking questions to help in educating themselves… these very people are the energy that takes away the ignorance of humankind and replaces it with an open mind.

I didn’t want to become a member of the “Multiple Sclerosis Warriors Club” but let the truth be told that like any other illness sufferer I just want to treated as you have always treated me. Yell at me when you are mad at me … hug me when you have moments to celebrate me … and most importantly let me be if you cannot accept me and my wheelchair that has replaced my walking feet.

People with Ms are normal people with a box of lucky dips to choose from… each day is unique & no two days are the same… and what you may see in people with Multiple Sclerosis as laziness is to us a moment, a day, or a week where Ms has us by the heartstrings kicking our ass.

For me & “My Story” (My Ms Diagnosis’s Name) our object in life Is to run an untimed gauntlet… Jump through all the hurdles… stacking it from time to time. Incurring painful penalties… for taking on the chore list that we go through every day. There nothing could be worse; than the miscommunications between the body & the brain. For me and “My Story.”

All that there is left to do is Run this bloody gauntlet Listening to our cheers squad Screaming “My Story” Will Not Beat Me…. & Never Will I Give Up!

---

What Ms has done and is doing to me is surely a humanitarian crime…

I have come full circle with my Ms diagnosis… I don’t hide behind it … and work hard at maintaining my life and the things/people that I want in it… I own my shit and under very difficult life-altering circumstances I get up every day to do what needs to be done… and whilst some days are harder than others to muster up the energy to meet the day… I drag my ass out of bed at 7 am most days.

I keep myself either physically busy…(chores or things around the house), or mentally busy (writing, blogging, designing… tutoring or fixing a computer)… I try with all my might to keep my daily workload and a rate and level that works with my daily fatigue levels.

People cannot get how truly see how exhausting the fatigue level is and can get. A simple shower can take me hours to recover from… standing to do the dishes (piled high from no one wanting to do them or even from the weekends visiting hours) can leave me limping and pained for hours to days at a go…

My MS is doing its bit right now to lessen my tolerance of others… I am short-fused at the hand of other people’s opinions… and repetitive behaviours are doing my head in… & I know that my Ms symptoms have taken on a different persona… simple tasks like shaving my legs or putting on my shoes can take me two to three time longer than usual.

Here it is the business end of 2018 and I cannot remember the last time that I had a
great day… a day without pain meds… or even a day without a new bruise… my wardrobe gets friendly with me and likes to get in my face… door handles are my favourite they are like magnets to my arms.

“My Story” my companion Thinks he is the teacher What he isn’t aware of is that I have come stronger in my mind… I now know that it’s my job to teach him… how to live with me. I am living with “My Story” But “My Story will never get hold of me.

But through all that you have read here, the one thing that I hope you take away from this my daily blog post is that “Struggle” is my middle name.

I have learned to embrace my limitations, my struggles and even “My Story” thinking that he has one over me… but I ask you as my readers to see me for who I am… no labels and no Ms diagnosis or even for the attitude that has grown quite a voice… I am nobody different than I was yesterday… when I walked beside you shoulder to shoulder.

Today daily blog post titled “Spurred On By An Ms Meme” – Reads – “It’s weird, but M.S. can help you appreciate THINGS what you ONCE OVERLOOKED“

---

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com
Copyrighted By Tanya Kelly. 2018