MS is a bizarre illness – there are hundreds of combinations of symptoms and no one person’s MS is the same as another’s. It’s like an MS pick-n-mix, except MS does the choosing. We just weigh and pay.
What’s most frustrating though is the sheer contradiction in symptoms. One day I’ll have all the windows open, the fan going at full blast, an arctic wind whipping round my feet. The next, I’m chilled to the bone, wrapped in my duvet clutching my hot water bottle.
Or there’s the foot-drop – the days when my feet decide to do an Irish jig and every pavement becomes a minefield, in sharp contrast to other days when my legs are rigid and I walk like a wound-up robot.
On top of that is my old nemesis, MS fatigue, the bane of my life. Striking at any time, it drives me to my sofa, everything else on hold until normal service resumes. So why do I also have periods of extreme insomnia? Nights when I sit downstairs listening to the shipping forecast and World Service into the wee small hours.
It’s not just the physical symptoms – my emotions swing from one extreme to the other too. On Sunday I was feeling on top of the world but on Monday I had one of my gloomy days. Nothing had happened to explain it. Perhaps it is the daily pressure of trying to maintain a normal life while coping with the whole MS thing, who knows?
I’m off to the Hay-on-Wye book festival with friends today, a trip I’ve been looking forward to for months. Apart from the haematoma on my leg which is still as painful as ever, I’m praying that the fatigue also takes a day trip, in the opposite direction. I’m hoping it won’t be a day when I just want to go back to bed, pull my duvet over me and shut out the world.
MS can be a very unsociable illness and not knowing from one day to the next just what it’ll throw at you makes life even more difficult to plan, but for today, I am going out whether MS likes it or not. So if you’re in Hay-on-Wye today and see a chubby-faced woman fast asleep on a deckchair, that’ll be me.
So glad to read my life, yesterday was a dark clouds kind of day, so lets hope for us all that today will be a sunshine kind of day. Enjoy The Hay Day..
hi Tricia!
Thank you – and you. The gloomy days just come out of the blue – no rhyme or reason. Am hoping for better things today!
Friend’s picking us up in an hour. Trying to get my bookish, literary face on, lol.
X
Loving reading your blog. Like you say MS is different for us all. I just get the physical stuff – foot-drop, legs like lead, but the fatigue seems under control right now.
Thanks Sandy!
Glad to hear your fatigue is under control, it’s such a horrible symptom.
I always find, when I meet another person with MS, we spend five minutes comparing our different symptoms, lol.
X
Enjoy the bookshow at Hay on Wye, I’ve always wanted to go just to see what all the hype is about.
Yup the bitch in my MS came out yesterday – result of three busy days, I felt all doom and gloom and physical symptoms were much worse than normal, foot drop, balance, walking and mental feeling. Its then that I get really worried that my ‘normal’ life will be gone for ever. A good night’s sleep has done the trick, back to normal today
Hi!
Yup, it’s my first time at the festival – very good fun but thought there might have beem more book stalls!
Son enjoyed a talk by his favourite author. Rained all day but most of it was undercover, thank goodness!
X
MS top trumps its the way forward 🙂
Yup! Compare symptoms, winner gets a prize ;-).
Hi there, SIF!
Hoping you are having/had a lovely time at the festival! Boo on the leg still hurting.
It is always comforting to read that others experience some of the same MS-related things I do. I keep telling myself exercise will help with the fatigue, but I’m so tired that the very thought of it is hideous.
Hello!
Hope your holiday was fab?!
Festival was brill. Am feeling quite bookish and inspired to write great words, lol.
Know exactly what you mean about exercise. If I read one more article extolling the virtues of exercise when you have MS, I’ll chuck my kettlebell out the window. Meh.
X
It WAS fab, thanks!
Let me know when you decide to toss the kettleball; I’ll chuck my hula hoop, ankle weights, mini-trampoline, and 5-lb. hand weights.
We should have a ceremony, lol. Any ideas of how to lose a couple of stones in 8 weeks gratefully received…
X
I *do* have a suggestion: eat only airplane food!
You should copyright that idea – The Airline Diet, lol!!
x
HI Stumbles,
I follow the G-Plan Diet (nothing to do with eating furniture).
It’s a bit like the F-Plan diet. You can eat what you want, when you want. The only condition is that you purchase all your food exclusively from Greggs.
X
Hi Chris!
Great plan, except I want to lose weight, lol. Mind you, I am partial to one of their steak bakes. And the muffins. And the donuts.
X
During the course of one day, I go from freezing cold to boiling hot many times, even if the outside temp hasn’t changed :p
I hate how unsociable MS can be, good friends understand tho when you can’t do something because of the MS and the ones that don’t understand, can just go away :p
enjoy the book festival! I love reading so would love to go to a book festival and a positive note to having MS, means I get a lot of reading done when I am not able to walk 🙂
Hi Jennifer,
You’re absolutely right about friends. My friends are used to me switching plans at the last minute and the ones who couldn’t understand are long gone, lol.
I read a lot too – makes me feel like I’m actually doing something when I’m lolling around the sofa again. Mind you, it does take me far longer than it used to to finish a book. X