What’s it this time?
A relapse? An ‘exacerbation of symptoms’? Or just the usual?
Whatever your MS nurse, neurologist or doctor calls it, you feel pretty bad.
Worse than that, you feel dreadful. Terrible. Horrible. And everything else in between.
But wait, your colleagues and friends will make you feel better:
‘Wish I was you, would love a week off work, dossing around, watching telly.’
‘A week in bed? You serious? Eaaaaasy life.’
Yeah. When you’re in fairly good health, a week off must sound like bliss. When you’re truly ill, it’s evil, and no doubt you’re wishing you’re well enough to be in work as anything is preferable to how awful you’re feeling right now.
What most people don’t realise is, being ill is extremely hard work. It’s certainly not a cushy number; my last relapse showed this only too well. I was ill. All I could do was lie on the sofa. Nice? No. The nerve pain gnawed away at my legs while the fatigue bashed my head in. Everything hurt. I couldn’t read, I couldn’t concentrate. All I could do was … lie there. Being ill.
And all the while, rushing through my head was a stream of things I couldn’t do, but had to – the laundry, the cleaning, the shopping and cooking a basic meal for myself. The latter tortured me. I could taste the boiled egg, but it took me over three hours to get up up and do it (I have one of those six-egg electric egg boilers – couldn’t find the energy to turn it on).
To be frank, I can be as guilty as the next person. I never really understood people who had the flu, until the one and only time I had it, two years ago. I literally, quite literally, could not get out of bed. It was a relapse x 10. And extremely frightening, especially as I was the only responsible adult in the house. In some ways, the mental anguish was worse than the aching limbs and complete inability to sit upright.
Someone once said to me, quite soon after my diagnosis, that you have to be strong to cope with MS, and, boy, they weren’t wrong. If you let it, it can become a full time job. Constant pain, constant fatigue, immeasurable fear of what happens next. Plus, there’s no end-point.
You know that chic trend for ‘pop-up’ this, that and the other? Shops, stalls, cafes? For me, MS is a bit like that, except not as nice. They appear one day and are gone the week after, having cashed in their pain tokens and left.
And even when you’re Not Very Ill, there’s the constant undercurrent of symptoms, most of them invisible. Going to a Port-a-Loo six times a day when there’s eight men on a site isn’t pleasant. However, lying down on a pile of plasterboard and nodding off is, so perhaps I now look for the silver lining.
I find it bizarre, at my age, that I’m coping with an endless barrage of symptoms, day in, day out, and have been doing for the last six years. I should be thinking of other things now that The Teenager is off to Uni next week – taking up Salsa (lol), learning how to make sushi, immersing myself in Yoga for Complete and Utter Beginners.
Next time someone says how cushy it is to be ill, take my advice.
Ignore them.
I have written a couple of long poems about MS and it isn’t easy to describe how you feel to someone who doesn’t go through it.
I also feel that anyone with a long term illness or condition like MS can be excused if they start to feel like a hypochondriac as they are asked by health professionals, “Do you feel this?” or “Do you feel that?”. You may not be feeling any of those things, but because it has been mentioned your senses are heightened waiting for the possibility that “this” or “that” may be the next thing to worry about. We’re never free of it even if we feel okay.
I completely agree! Like you say, even on my ‘good days’, I’m either constantly wondering if this niggle or that niggle is MS or thinking about when the next flare-up will hit! Never have I so totally analysed my health on a daily basis 🙁
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It’s awful.I completely understand.Do you have a group of MSers to vent to?I’ve asked this before.I highly recommend the facebook goup MS Support Scotland Group for some down to earth practical advice and support.Also silliness.But not all doom and gloom.
I have a few close friends with MS who completely understand when I start ranting again!
In fact, this post came about as me and one of my friends with MS, Dan, where talking the other day about how difficult it is being ill and totally different to what people think it’s like.
I’ll check out that group; silliness is good 🙂
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Hope you feel better soon.There will always be some people who post negativity but in general it’s uplifting and a place to ask questions/vent etc.Also it’s a closed group.
Thank you and it sounds brilliant! We need more of this kind of support.
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I’m an analyser too. Constantly googling … “could this particular symptom be MS? Or is it something else?” It’s on my mind a lot despite my best efforts to not let it monopolise my thoughts! I’m loaded with cold atm and sore throat and hoping it doesn’t flare anything up ?? xx
Fingers crossed you get better soon! Sounds pretty miserabe 🙁
I know what you mean. I am always trying to work out if symptoms are MS or not. It’s a labyrinth!
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Especially, as with me, I have other conditions with similar symptoms. I have had two mini strokes and I also have under active thyroid problems and COPD. So it is a lottery in knowing which condition is causing the symptom that I would be going through.
That sounds complicated 🙁
I had thyroid problems with the Campath and that certainly confused me as to which symptom belonged to the thyroid and which was MS as some of them could be applied to both!
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