Recently I was scanning through my email as I do most mornings. Due to the facet that I have been diagnosed with Primary Progressive Multiple Sclerosis; I subscribe to the Intouch Magazine & eNewsletter and read it when it comes through my email.
This month there was an article titled “How Writing And The NDIS Are Enriching Donna’s Life”
Donna and George
Last month, Fairfax Media published a beautiful piece in Sunday Life magazine by 44-year-old Donna, on the challenges of coping with the reality that her husband had become her primary carer.
It’s a really valuable insight into the changing dynamics of a relationship after the diagnosis of a condition such as multiple sclerosis, and we encourage all of you who haven’t come across it to read Donna’s piece here. https://www.smh.com.au/lifestyle/life-and-relationships/why-is-it-so-hard-for-me-to-accept-my-husband-becoming-my-carer-20180316-p4z4mz.html
We caught up with Donna recently to have a chat about her writing, her journey to acceptance and how she’s come to live well with primary-progressive multiple sclerosis.
Donna, who a few years after diagnosis had to leave work, recently hit the books to hone her long-held interest in writing.
“I’ve finished a course to do with non-fiction writing and publishing, and that got me on the go with my writing,” she says. “I did that by correspondence with Open Colleges 18 months ago, and it was very beneficial.”
Donna hadn’t written anything quite so personal as her carer piece before, and it was a particularly rewarding challenge.
“It was both difficult and valuable,” Donna says. “It actually helped me, putting it all on paper. Reading through it again and again, getting the feel for it and realising, ‘Hey, this is me and this is true’, I really wanted to keep polishing it and make it something that other people may want to read and can connect with as well.”
Editors agreed she’d nailed it, with Donna’s piece also being published in Link, Australia’s national disability magazine.
“When a lot of people that I know read it, they came back to me and said it was very emotional,” Donna says. “But I didn’t want to make them cry or anything like that! My purpose was, as a writer, to express to people how it’s been for me. That’s all. Trying to deal with it in the best way I can, which I feel I’ve done.”
A crucial element of Donna’s journey to living well with multiple sclerosis has been her participation in the National Disability Insurance Scheme.
“The NDIS was a real turning point in many areas of my life,” Donna says. “One big piece of that – and it does help me with my writing, too – is getting out and about. The NDIS gives me the hours I can have with a care worker, and I get to leave the house and do what I want. The care worker supports me, obviously, but I get out and do what I want, which has really helped.”
Donna has been on the NDIS for two years and was assisted in pre-planning by the MS team.
“I had people coming to my house and helping me write up a plan of things that I wanted to achieve, that were important to me in my life,” she says. “It was really helpful. When I had that all on paper and was ready to speak to the NDIA, it went well because I knew what I was going to talk about and what I wanted from them.
“I’m keen to encourage everyone out there who’s living with multiple sclerosis to do the same. Think about what you want, and don’t think about what you might not be able to achieve – write down all you want, request everything you need, then leave it to the NDIA. It’s worth it in the long run.”
Another of Donna’s writing projects it set for publication in the coming months, with Link to run her article about how the NDIS has worked for her. “It’s been going really well, and it’s great that it’s going to reach people living with all sorts of disabilities all over the country,” Donna says.
We look forward to being able to publish Donna’s writing in coming editions of Intouch, too!
Why is it so hard for me to accept my husband becoming my carer?
By Donna Tsironis
17 March 2018
Sydney Morning Herald
Why is it so damn hard for me to accept my husband becoming my carer? At times I feel as if I’m a patient being tended to in a hospital, but I’m actually in my own home with my caring husband and wonderful son.
My adoring husband, the father of our child and my best friend, has taken on the selfless role of being my lifelong carer. It can be so frustrating for me, yet so comforting at the same time.
Sure, we can’t be carefree any more, but that doesn’t matter.
Sure, we can’t be carefree any more, but that doesn’t matter.
After we got married, we loved to go on holidays together, not really planning our days but preferring to be carefree and spontaneous. Not once did either of us suspect anything like this would happen. But that’s life, isn’t it?
My life changed forever on a warm summer’s morning a few days before Christmas. I was 27. My husband had already left for work and I was home alone.
There were colourful decorations hanging up and a beautiful tree in our living room. I was looking forward to the festivities, the sumptuous food that our mums had cooked, and to relaxing over the holiday season.
I leapt out of bed, put my robe on and began walking down the hallway to the kitchen. But my body felt weird. My legs were heavy. I was numb from my chest down to my feet, and suffering from pins and needles.
I’d never felt this way before. I looked to see whether anything had bitten me, for any rashes. Nothing. I was trying to find an answer for what was happening, but there were no clues. Fast forward a few hours and, following a visit to a GP, my husband was taking me to hospital.
There were a lot of sick people around me, and we didn’t really look that different. We were all ill, anxious or both. We were all waiting apprehensively to see the doctors. I felt like a pin in the ocean, insignificant and unnoticed.
After some MRI scans, doctors suggested I may have multiple sclerosis. Further attacks on my body confirmed the diagnosis.
After a few years, I became too physically weak to work and had to stop. I’m now wheelchair-bound, receive in-house support for the things I can’t do on my own, and my husband has become my carer.
It has been difficult for us to deal with this unwanted modification to our relationship. I would get jealous of my husband being able to go out with his friends while I was stuck at home, not being able to go places myself or get in the car to drive.
I still miss not being able to do something as simple and enjoyable as walking together, holding hands. Sometimes I feel as if I’m not part of a couple anymore.
I’ve had counselling over the years to work through my struggle at accepting my condition but I still become emotional when I need my husband’s help with something. There are times I feel as if it’s a patient-carer relationship instead of one between a wife and husband. Yet there are positives that we have gained from this unfortunate experience, both as a couple and individually.
Crucially, I realised that my husband needed valuable time to himself – and so did I. I became determined to make myself happy and a bit more independent, so using my NDIS Plan, I enlisted the support of a carer from an agency to accompany me on social outings.
Despite this shift in our relationship, my husband and I still love each other. We have always enjoyed going out together and this has not changed.
Although there is a lot more planning involved with organising outings, we see this aspect as fun. Sure, we can’t be carefree any more, but that doesn’t matter.
We have become more grateful for the simple and the mundane – even though we sometimes have absurd and chaotic moments. Our sense of humour lifts our spirits and allows us to override unjoyful times.
Donna Tsironis’s story was covered in the Intouch Magazine & eNewsletter titled “How Writing And The NDIS Are Enriching Donna’s Life” the article in the Intouch Magazine & eNewsletter was a right up that highlighted how the NDIS & writing has helped Donna is working on coming to terms with her Primary Progressive Multiple Sclerosis diagnosis. Donna wrote a piece that sung to my heart, she spoke about waking up one day and realising that her marriage with her husband George was about to take on a new role and leave Donna and her Primary Progressive Multiple Sclerosis diagnosis in the uncertainty for her future… suddenly having to cope with the reality that her husband had become her primary carer in a peace that she wrote titled Why is it so hard for me to accept my husband becoming my carer?
Donna’s story hit me like a wet sponge in the face… she with a few differences told my story, expressing my feelings and my insecurities.
I have struggled with the many changes that have been happening not only yo my body and my mental mindset but more importantly to the outer strength that I have always stood for in the empowerment of my own life.
I in the private space of my mind get mad and overwhelmed by the changes that I see in myself and my abilities… I have had yo come to terms with the knowledge that I am no longer as independent as I once was.
I mourn for my independence and with every single ounce of my body hate how I have been forced to face myself in a mirror seemingly in a contradictory view of myself…
I was so mad at myself for putting myself in the position where I woke up one day feeling that I had let go of all my strength and faith in myself that I felt so comfortable with giving my all to Steve…. as the song goes “I Hate That I Love You” I never really saw me ever being 100% completely dependent and committed to someone other than myself… I never saw this coming and certainly didn’t see it in my future…. but here we are.
What scares me about my future and my future with my new best friend PPMS is that I am no longer in control of the self-powered me that was once so very self-assured and very capable of paving my own paths in life.
I get mad at myself more so when I look at Steve and see the patient and loving person that he was once was slowly turn into a man with frustration lines on his face… and even if he doesn’t admit to it… tears that fill his soul.
Gosh for hell’s sake he didn’t sign up for this and before someone says it… “Steve never said for better or worse on our wedding day.”
What Donna’s story covered published by the Fairfax Media – Sunday Life magazine and furthermore the coverage in the Intouch Magazine & eNewsletter was open up my eyes to me finally breaking my silence and letting my inner PPMS burden seep out through the cracks within in… finally unburdening myself and owning what I feel…not in my own world where only I hear my thoughts…but openly to others and especially to those people in my inner circle.
I have always been strong heated and very tight-lipped when it comes to my inner privacy … I have never been comfortable enough in myself and in my trust if others to show my whole hand and be completely free to open my heart and soul…
My Primary Progressive Multiple Sclerosis diagnosis completely changes things for me… I like Donna Tsironis question who it is that I will become when my PPMS diagnoses leaves me to question the everything that I have ever stood for and the very foundation that I have built for myself.
I have told my Multiple Sclerosis story before but have never been completely raw and vulnerable… Donna Tsironis and her written work “Why is it so hard for me to accept my husband becoming my carer?” Has given me the push to lay the questions that I have on the table and demand that I answer them, own them and finally accept that my Multiple Sclerosis is not the end of me or my world.
In the next few days, I will write my own piece on my Multiple Sclerosis challenges and inner deep feelings… I will become honest with myself… with my thoughts and my inner-mind.
This is the new writing exercise that I vow to give to the part of me that is struggling alone.
I will start to write notes this week and post up my own “Multiple Sclerosis Rawness” soon.
This article is a very important and thought provoking piece…
Author. Tanya Kelly
Copyrighted By Tanya Kelly. 2018.