Sharing My Thoughts… as Someone with Advanced Multiple Sclerosis
I can’t believe that I started writing about my Multiple Sclerosis 5 years ago now. Back then, my physical MS symptoms were really starting to come to the forefront and were beginning to have an impact on my life. However, I still had two kids in primary school, I was working for the NHS, I was married and I was managing. Managing my symptoms through diet and lifestyle, eating well and going to the gym. Mental health wasn’t too much of an issue and I still had a pretty positive outlook on the whole.
Fast forward 5 years and there have been many changes. My health has impacted my work (now medically retired from the NHS), my marriage (I’m separated) and my attitude (not so happy-go-lucky). My kids are the one constant, though they seem to have morphed into a style-conscious tween and a tall, largely monosyllabic teenager!
In regards to writing, I still find it a lifesaver in terms of getting my thoughts out (I also journal at times), but I am aware that, compared to the past, my posts can be pretty maudlin and depressing. I think that I am conscious of the whole MS community when I write and I also follow some fantastic bloggers and social media accounts of people, many of whom who are earlier in their ‘MS journey’ than I am (for want of a better phrase). Regardless, I love following others with MS and chronic illness as it helps me to feel not-so-alone and it is great to have chronic illness online friends — they just ‘get it’.
I was diagnosed with my chronic illness at a time where they didn’t give DMDs to those diagnosed with MS as a child — I was 15 — and I then went so long during the early part of my adulthood without relapses that I never pushed for them. Now, I am secondary progressive at aged 43. I am so aware that my symptoms and progression can be scary to those newly diagnosed or to those with symptoms that they feel able to manage well. I am very conscious that I don’t want to be a moaner but, at the same time, I want this to be a place where I can record my true feelings about what it is like living with advanced MS.
The reality is, for me, it has got harder… a lot. And, yes, I do still try and be proactive and be as healthy as I can be with MS — but I am also finding it harder and harder when my body reacts the way that it does and I am the main person looking after my kids (and cats!) and my home. Trying to keep useful and to earn a bit of money through a few hours a week of work also makes it difficult, it just saps what little energy I have.
I think my writing needs to naturally find its way to advocate morefor awareness of chronic illness, advanced MS and disability. I need to record how difficult life can be when trying to maintain normalcy (work, social relationships and family) in a society that is not geared up for disabled people and health needs to be prioritised. Trying to find the balance between wanting to feel like a helpful member of society (which I try and do through my work) whilst doing other stuff too can be… too much. I could do it all a few years ago, when I first started to write and blog, but not so much now.
I need to be aware that I may lose some readership if I emphasise the difficult nature of increasing disability. But then, the initial point of writing was to get my thoughts out and really it still is. If writing and blogging helps me to work through those thoughts, surely that can only help myself, and perhaps others, in the long run?
Anyway, a random one today for my first post in a little while, but I’m glad to get it all out!
Jenny writes her blog, Tripping Through Treacle at www.trippingthroughtreacle.com