It is officially 13 years since my MS reared its ugly head. 13 years of weird and wonderful symptoms. 13 years of scans and blood tests and cannulas and nurses and doctors and visits to the hospital. 13 years of this chaos. My MS is officially a teenager.
I’m facing tantrums, mood swings and unpredictable behaviour on a scale previously not seen. My MS is one big hormonal strop of a condition and I’m tearing my hair out.
This week I’ve allowed myself to be a bit ‘woe is me’. Much of this feeling is to do with a huge sense of loneliness that I haven’t felt since I was first diagnosed. I feel as though I am dealing with so much that no-one else can see or, indeed, understand. For example, I’m constantly getting ‘tail-gated’ by harried parents in the playground, oblivious to the stress they’re causing me when they insist on walking so close behind me while I shuffle painfully along. Whatever happened to social distancing? A friend of mine at work made a comment about me needing to show some proof of my disability to qualify for something and it hit me that even my friends, who have known me for longer than I’ve known MS can’t see what I’m going through. If I’m not in my wheelchair I look like there’s nothing wrong with me – this is a hugely distressing issue, not just for me but for most people with invisible disabilities.
Anyway, I did a stupid thing yesterday. I went shopping. Supermarket shopping. On my own. This is something I never do and never should do. I started off ok, as always, my MS lulled me into a false sense of security, and it wasn’t until I was in the cheese aisle that my feet started to turn inwards and do that dragging thing that they are so fond of doing. But I needed more than just a handful of salad and some cheese so on I pushed, thankful for the support of the trolley.
At several points I thought about giving up, but there were still important items that I had to get and of course supermarkets don’t make things easy by stocking the wine at the farthest end of the store!
Once back to my car, I could barely stand – my legs grew weaker and weaker, and I dropped lower and lower as they slowly gave way under me. I felt so overwhelmingly disabled in that moment, but no-one around me seemed to notice, or care. Again, that sense of loneliness was biting hard and I felt like crying. But I didn’t. I left that for when I got home and collapsed on the sofa having failed to put the shopping away. I sat there, my legs screaming at me and my body refusing to play ball. I cursed my MS, slammed my fists angrily on the sofa, let out a scream and allowed the tears to flow bitterly down my cheeks.
I thought my outburst would make me feel a bit better, but it didn’t. I still feel just as angry and frustrated this morning, a feeling that I hope will pass, it usually does.
I guess, as with all teenagers, I need to tread a little more gently around my MS, allowing it space to suss out what it wants to do and who it wants to be. You never know, once we’re through this adolescent phase we may just find a way to be friends.
The Wibbly Dinosaur 
I don’t know how you do it.
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Maybe I don’t do it 🤔
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Your should be proud of yourself for trying and doing it sorry that you suffered after I know that feeling hoping your feeling better soon x
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Thank you x
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Aw l can relate to all your feelings. I’m 15 years in and in the mids of teenage angst. People don’t get it and I’ve found it easier when people ask how I am just to say I’m fine because on the rare occasion I have tried to comment on how I’m really feeling the looks of bewilderment and “god I wish I hadn’t asked”, that crosses their face just makes it worse. Remember your fab and just keep doing what you’re doing.
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Thank you – yes, the “I’m fine” debacle, it does nothing to help our cause, but it has to be done, no one likes a whinger! x
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HI I know exactly how you feel i like to still believe i can do anything i put my mind to then regret it by ending up bent over, my legs giving way and the fatigue at an all time high. But you are like me you dont want to give in to the MS and letting it win. I am very proud of you for attempting to do something the every day person takes for granted. Nobody understands what we deal with everyday and some dont care because it doesnt affect them but we MS’rs know and understand and will be there to listen and understand.
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Thank you, let’s keep on pushing and pretending we can do anything! x
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Cheering you on. 💕 you’re writing is so spot on, a teenager huh, I’m facing winter, hair turning grey! Been nearly 40 years of ‘but no one can see’. I once wrote you’d think after all these years there’d be no denial, no anger. Cycle into acceptance, but but still there are THOSE days. Thanks for sharing
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Thank you, that made me smile x
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😢
Xxxxxxxxxxxxxxxxxxxxxxxxxxx
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Thanks, man xx
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Dear Wibbly Dinosaur,
I read your latest posting and I cried because it felt so familiar to me – I know exactly how you feel! I’ve had MS for 20 years now and these last few years it’s really been hard going. I have always tried to be upbeat, but it’s got the upper hand at the moment and makes me feel very down and depressed, which is not me. I, like you, feel very alone; my husband is great, but even he doesn’t really understand-he can’t. I feel very much on my own, trying to deal with all the complexities it brings. The experts/specialists that I see, do very little to help and I feel quite lost and alone, because of this.
But we have to fight on. Sending you lots of love and an understanding hug xx
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Thank you, Jo – it’s lovely to hear that my words resonated – that’s the reason I started my blog. Sorry to hear that you feel alone with it too x
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Gosh I really feel for you. I hate that feeling when everyone else around you (even the 90+s) can walk better than you.
Ive got secondary progressive MS (2017) and I, like you used to be fit and joined in with every sport possible. After my diagnosis I was determined to fight with everything I had, and started specific MS exercise classes online. My EDSS has gone from 5 back to 2.5 in 3 years, and I can only put it down to the exercise. I do 4 online classes (each different strength, balance, stretch and mobility) per week.
I always read your blogs, and youre always so positive. This one is still positive, but with a hint of real frustration.
My instructor happens to be my daughter (how lucky am I!) You dont need to go to her, but definitely try to find a specialist trainer. In case you want to see Beths website or try the exercises go to https://www.bouncebackexercise.com/
Caroline xx
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Thank you, Caroline. I’ve always sworn that exercise is key – I keep trying to exercise in the same way that I used to, which just adds to the frustration when I can’t manage! Perhaps gentler exercise is the answer to start with – Thank you for the link, I’ll have a look when I get a chance, I’m really pleased to hear that exercise is helping you. x
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Oh my word, you are so articulate! You put so many frustrations and struggles into wonderful words. I look forward to each article you write. I’m not alone, what I live with is real, my legs aren’t the only legs that go on strike, my body isn’t the only one that embarrasses me.
Thank you thank you thank you.
Sending you love and strength to live on and fight another day
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Thank you, Sarah – that was lovely x
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oh gosh! Sounds like a rough day… and more! Sending so much love xx
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Thank you, Amy xx
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