No matter what I’ve tried. Be it exercises, changing diet & getting in the right frame of mind.
My legs have given up today.
I went for a stagger around town & as soon as the heat took hold, I was sitting on a roasting hot floor. With miles to drive home & no where near my car.
I eventually made it back, hosed down, did a few more exercises & it’s now sleepy time.
I’m in total agony, refuse to call a doctor & I’ll still get folks, expecting me to help them. If I say I’m wasted. I’ll get their list of problems & I’m selfish. “YES I AM!”
I had a nap & was woken by my son. Dads taxi, required at the train station. Zero care!
Apparently it was hot waiting for the lift & then I got blocked in by 3 taxis. They don’t like relatives picking up their siblings.
I’ll be glad when this day is over. Stupid legs!
All I do is rest, apparently.
It’s alright for me, I don’t have to work & I get financial help. There’s nothing wrong with me, I just have spasticity & I’m weak.
Excuses, excuses, I hear them say. The best yet, if they didn’t have to work, apparently they would eat KFC all day & play on their X-Box. If they got mobility, they’d get a Mercedes. Where did all these idiots come from?
On a day of heated oppression, I’ve been trying to pace myself. I was preparing for a visit of two friends for food etc tomorrow evening but they’re coming tonight. This began to move apace but my body spoke.
There have been many times however when I have not listened and ended up in jelly land.
So many good times have been ruined by such errors of judgement; or should that be foolish obduracy?
Sorry to hear things are difficult at the moment, time to rest lots and let everybody else look after themselves.
Hang in there buddy, tomorrow is a new day and hopefully things will be better for you, don’t beat yourself up about being selfish, it’s your time to be good to yourself, rest plenty and stay hydrated.
If it’s any consolation Terry my legs have more or less given up during this hot and humid weather. It is the first time I have experienced this level of “shut down” and I only hope that things will improve once the weather changes. Mind you when it’s very cold they go stiff, so roll on autumn and spring. To hell with what others think you know how you feel and when your body screams REST. Hope you manage to get your mobility back soon.
You’ve been doing so well with doing you’re own thing and what works for you but you need to listen to your body sometimes and you need to rest and not push yourself too much.
Be selfish, and do what you feel is best for you… YOU’RE in charge.
Aw Terry. That’s a shame to read. Bloody ms! No matter how hard we try to fight it, it’s always going to have the upper hand. Guess you’ll have to change your ways and teach yourself to be selfish. People will eventually stop asking for your help then. They’ll be saying you’re a selfish basket! Haha. Mission accomplished.
Had a bloody good sleep & feel loads better. Been having a few naps outside in the fresh air too & drinking plenty of water. Yesterday gave me a scare. I have a wheelchair, for emergences. What good it would be, when I get in that state again, I do not know. It’s a self propelling type. And when the body has shut down, it’s only useful for someone who wants to move me about. Back to my perky upbeat self again. I’m so selfish! Spoiling myself with seeds & berries today. Terry survived.
I’ve had MS 15years. Only just had courage to join forum. One thing I’ve learnt. It’s never going away, learn to work with it. It’s part of me, so if you can’t do something, DON’T. I was in denial for 2 years. Don’t give up on your dreams. Just modify them to suit you.
Great to hear that you’re feeling better today and feeling more like the perky upbeat Terry that we all know
Sometimes we just get so exhausted that a damned good sleep is what will help make all the difference and I bet it did give you a scare as it would us all but you dealt with it and managed it the best way you could.
Having a wheelchair for emergencies is a good idea as we never know how we’ll be from day to day but like you said it’s only good/useful if we can manover it ourselves, or somebody else can help push us/you around.
How about getting yourself a little Scooter as there’s different ones available for different needs. I was totally against having one as I was/am trying to keep my independence but eventually I decided to get one as the benefits of having one outweighed the not having one and it has certainly helped me to get further afield, or just to use it on days when I need to.
It took me a while to pluck up the courage to join too but as like you said it’s never going away so we have to learn to deal with it and work with it and although this doesn’t happen overnight it certainly helps being on here with others who understand what you’re going through.
Hi Terry Glad today is better for you, but don’t go over doing it mind, this heat is a bummer especially where Ms is concerned. A little scooter might be the answer for days when you need that bit extra help, give it some thought, see what you think. Take care Pam x
Thanks for your reply. It makes a difference to speak to people who know exactly what your talking about. Most of my friends are really good and thoughtful. But you can’t have a conversation with them about it. When people ask how I am I say good days and bad. End of conversation. Looking forward to reading all comments x
My partner really suffered in the heat but is feeling much better now. He is recently diagnosed (I first noticed symptoms - drop foot - about three years ago) and reluctant to engage at this stage. I have succeeded in persuading him to use Nordic walking poles and they really seem to help, particularly with balance, posture and fatigue.
Hi there. Poles are good. Trying not to become too dependent on them worked for me & trying to walk tip toe helps to strengthen the calf muscles. Rebuilding the areas with problems, to stop wasting away.
I do stands against the wall & lift things. Cow bell weights, helps with balance & fatigue. Use it or lose it.
Glad to hear that the ‘poles’ have been helping out but you’re right in trying not to become too dependent on them, I’ve made that mistake with my walking stick and I can’t leave home without it now. I should be using two but one of my arms is too weak to use for any kind of support, plus my coordination doesn’t work with them - this has been tried, tested and failed :-/
Your motto of ‘use it or lose it’ keeps ringing in my ears so I’ve made an appointment to see somebody next week about just exactly that - use it or lose it.
