There’s a misconception that MS is somehow pain-free and more of an irritant than anything else.
You know, the stumbling, the dodgy memory, the heat intolerance, the fatigue. In the grand scheme of things, not a bad little illness to have, right?
Wrong.
Sure, we can ‘laugh’ at the stumbling walk, until we trip down the stairs or fall over the in the shower, still clutching our Herbal Essence. We can put up with the joshing about our forgetfulness and fondness for post-it notes. As for the fatigue, well that’s just downright cushy of course. But pain?
Well, over the last month or so I’ve been in a lot of pain. First up was the heat intolerance. People will tell you it’s perfectly simple – just stay out of the sun, pop a hat on and drink lots of water. Why didn’t I think of that? If it were that easy, I would stay in a shady corner until the Christmas goods start appearing in the supermarkets.
So, the heat made me wilt. It pulled the plug on my energy, which was bad enough, but it then began to bring up intense itching, which to my horror, turned into a grotesque rash of blisters. To cut a long story short, after steroids and jumbo-sized bottles of grotty cream, it’s under control but I’m now left with ugly scarring all over my arms. And they still itch at the merest hint of sun, even through clothing. The boss has moved on from nicknaming me Half Shift to Apocalypse Zombie.
So far so bad but worse was to come. I’ve always had neuropathic pain in my legs, feet and arms and my dose of Pregabilin has been steadily increased to cope with it but over the last two weeks it morphed into something truly evil.
Take yesterday. I had a good day at work, got home, sorted The Teenager out (he’s on exam study leave, aka, doss around in bed all day eating toast), and put out the rubbish. Then blam, a whoosh of extreme nerve pain. I lay on the sofa whimpering and it rendered me useless. I tried to lie still, but the pain kept coming in hideous waves, along with intermittent violent twitching in my legs.
Sleep seemed the only answer so I set my alarm and tried to doze off. Only to be awoken by The Teenager crashing downstairs looking for the vacuum cleaner (he’s quite unfamiliar with it). Of course, after being holed up in his room all day, he wants to clean it at 8pm. He bashed every skirting board with the vacuum, sang (badly) at the top of his voice and chatted shouted to his friends on the X-Box before rushing back downstairs to make some toast.
So the next person who tells me I’ve got off lightly with MS, please excuse me while I trip you up and poke you with a cattle prod.
Another great post ❤️
Thank you! An angry one, lol. Got my sun hat on 🙁
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MS isn’t painful?? Someone forgot to give me that memo
I know! Me too.
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My problem with the term pain is it that there is often such a narrow definition, one that relates only to the physical – and therefore the only ‘real’ evidence of a chronic condition. I’ve struggled to accept that my pain also includes my frustration and anger; emotions that surface as I try to do something that a few weeks ago was possible with little conscious thought on my part but now requires strategic planning to get up off the floor. I’m fortunate in that I don’t generally experience a regular amount of neurological pain, but MS provides pain in many guises. Thank you for pointing that out so well. I like the way you frame your thoughts.
Thank you so much!
A very interesting point! I hadn’t really thought of it in that way before – the anguish that comes with MS.
Luckily the nerve pain seems to be behaving itself a bit better today, but it always gets worse in the evenings, so who knows 🙁
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I agree with everything you’ve just written and the comments you’ve received! What also really annoys me is when people tell me that I look well, when I’m feeing anything but! My reply, usually through gritted teeth is “It doesn’t affect your face” – although I suffer with trigeminal neuralgia it seems only to affect how I feel rather than how I look!
That’s just the worst!! Pesky invisible symptoms, especially the fatigue and neuralgia. I’ve kind of given up trying to explain except to those closest to me. My boss is pretty cool and can usually tell when something is up, even though he can’t see it!!
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Oh the pain! Feet, legs, eyes, hands, head, ears, the choking. Even the waves of shivering and pins ‘n’ needles hurt, and the fatigue, and none of it is visible! I have resigned myself to the fact that I must suffer in silence and not bother to keep tying to explain it because the frustration I feel towards the blank looks I get is also painful! So, just between you and me, I know, ms hurts. I hope it’s a short phase for you. xxx
Thank you! It’s calmed down quite a bit thank goodness, but still pops up worse in the evenings. Only thing that helps is lying down in a cold bed 🙂
And yup, it’s definitely the invisibility that makes it harder to explain to peeps.
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