Why ...
on earth would you want to share the details of your life as a person with Multiple Sclerosis?
That’s a good question. It’s all a bit personal, and I’m not known for public sharing. I’m from the “don’t make an exhibition of yourself” generation after all! Having Multiple Sclerosis (MS) is all about dealing with change and I have changed. Being out and about with mobility aids and a funky walk draws attention. Dealing with that chips away at my capacity to give a shit what people think and that has to be a good thing. Although it comes with a little hesitation, putting my thoughts and feelings about MS out there for all to see does not feel like such a big deal.
This newsletter is where I plan to chronicle living with MS. There will be writings that evolve from ramblings jotted down on my iPhone Notes App. I aim to talk about the good, the bad, and the plain ugly. I cover themes including the emotional and psychological impact of MS, the practical adjustments, and the barriers to living life as you lived it before.
Over time, hearing about the experiences of people with MS, other chronic illnesses and disabilities through blogs or social media, has become a huge help to me in coping with my own diagnosis. It makes me feel less alone, and more connected with a community of people who just get what I’m dealing with, because they’re dealing with it too.
⭐️ Writing about my MS is cathartic, and I think the simple answer to the why is I hope that sharing my experiences might be useful to others.⭐️
If you, or someone you know or care about struggles with things like mobility, accessibility, MS progression, or simply trying to navigate some sort of ‘new normal’ with this wrecking ball condition, there might be some things you can relate to here. My story may not resonate with everyone, this is not a one size fits all illness. The path of MS can be different for each person. From marathon running MSers to those who need the services of carers for several hours a day, our stories are all unique, but perhaps some of our fears and frustrations are the same. You may be at a different stage from me in your journey. I know when I was first diagnosed, I didn’t want to hang out in the spaces where people connected through chronic illness and disability. Now, I’m so grateful to be part of such a community.
Wherever you are with it all, why not have a read and see what you think? Or bookmark it for later if it’s too much right now.
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To find out a bit more about me see the About section, where there is also a bonus picture of my cat, and some answers to other infrequently or never asked FAQs.
⭐️ It may be that I am just amusing myself with this newsletter, but I guess that’s something! ⭐️
Thank you for reading
You’re funny you are! And I like to laugh, thankyou for that post and insight into you and your MSness.
I’ve got it too, the less bad version in my opinion, because I don’t LURCH into a relapse and into worse, and I thrive on my non-remittance, as time moves on, in my case, ever forwards, looking for the bright side, even as The Mess of MS messes with all of me, as I try to mourn the loss of capacities that the Old Whymark used to enjoy, and discover the possibilities and hold onto a NEW Whymark.
You and I have much in common,
I think 😌
Fab work, Sis! Great to see all your hard work coming to fruition, look forward to your updates. I nearly bought you this gift,
https://www.satorinotes.com/products/sis-youre-doing-a-good-job
but then I came up with 3 reasons not to:
1, It's a bit naff
2, The word 'good' isn't nearly enough
3, We've had too many 'number 2' jokes already this week.
Soz!😁
Well done you, oh, and I didn't know you were a Librarian! 😯
R kid❤️