Feeling sick and tired of feeling sick and tired

Everyday living
1

Hi,

This could be long but hang in there please I need some solidarity/advise and let’s face it you fellow ms`ers are best placed to provide it.

I’ve had rrms for 15 years now. It’s progressed so my mobility is rubbish (2 sticks at best) along with all of the other delightful symptoms we enjoy. It’s now hard to manage when it’s behaving itself.

I had my bladder botox done on June 30th. It was all going good until the heat wave struck and I’ve rarely been right since. I’ve been off work which drives me mad and I’ve rarely left home, ditto. I live on my own so if I can’t get out and about its pretty lonely friends and family can’t be here 24/7 just to keep me sane.

I’m due to go on holiday on the 3rd September. Driving down to the peak district from durham on my own for a week in a cabin. Work really takes a lot and I really look forward to going away all year and if it doesn’t cool down I’m going to have to cancel as my heat sensitivity is through the roof and I don’t want to be Ill and unable to go anywhere, away from all my support network. Being this bad really hits me hard, my confidence goes, I get really freaked out and depressed. I know that there are lots of you worse than me and I don’t want to winge but I find it really difficult to deal with being homebound.

I’m scared that if I have to cancel that it’s going to totally wreck everything that I fight so hard to keep. I’m trying to not get stressed but we all know how easy that is.

How do you just accept that there is nothing that you can do, that your ms can just rampage round your body like a malevolent gremlin and just destroy at will? Before ms I was really fit and strong, 2nd dan in Tae kwon do, did hours of exercise a week and I hate being disabled.

I find living alone tough but I have no choice. The prospect of having to give up work fills me with dread. I’d be home alone a lot and I just can’t do it. I fear I’d end up hating myself, I get bored, and lonely. If you could just fast forward recovery!

Sorry if that sounds ungrateful or self pitying but I need to be honest even if it means you hate me for it. Do you ever get to a point where you can just accept it?

Cheers For reading, I’m not normally a ranter but needs must. please be honest with any advice.

Extra points if you spotted the Red Hot Chili Peppers reference in the title. I’ve adopted Fight Like A Brave as my theme tune.

Thanks

Dawn

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The measure of a person’s character comes during the worst of times, not when all is unicorns, glitter and rainbows.

It can be a hard slog irrespective of the particular set of demons which are sent to test us. But it is still a test. You can and will rise to the challenge; adapt and overcome.

Mired in the midst of what you endure, i can see why you would doubt your resolve to carry on regardless and to push the extent and limitations of what you might still be able to do.

But from reading your post and from not knowing you personally, i am able to see that you have a quiet but relentless determination that is still strong and even a stoic, quintessential, British humour remains. I have no doubt that the gremlins currently causing you distraction will fall by the wayside as you simply persist in keeping keeping on!

I have no doubts. Have a tremendous holiday!

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hi dawn

i second paulo’s wisdom.

you WILL make it to your cabin.

have you tried chillows?

magicool spray?

cooling neck ties?

meanwhile keep calm and do some meditation.

carole x

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Dawn I agree with yr two reis. I could have written the same message as you. I have never been in denial about having ms. However. It is hard to imagine yourself getting worse. Then it happens. Suddenly for me. Can’t quite believe this is happening g to me. How drastically I and my life have changed. But You do go on. Life has to change. We ha e to adapt and accept a new or. I am slowly getting there. I know you will too. Go on holiday. E joy it You deserve e it, Anne x

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Use your skills in Taekwondo to beat the monkey chatter in your brain. The enemy is the MS that is the foe, you can fight this with your skills.

Do you allow the monkey chatter in your brain to send you doubting conversations about your abilities to cope with this new challenge which is yes the heat after effects of MS. I have it too, it wipes you out. They say well the experts it only lasts until you cool down, that is garbage, i have been suffering the same like you now since the heatwave.

You can find ways to cope with the heat physically as others have said, but you need the mental strength to fight the doubts about you being able to do this holiday.

Get your kit on, and fight the foe, and yes go on holiday. We make our own seclusions and prisons, non of us ever have to be alone, hell i didnt even know you existed until i saw your post, now i am responding to you. Now we are communicating so we are never alone.

I have decided in my fight not to let MS be who i am, and i have decided to stop using it for an excuse not to do things, i have been listenting far too much to my monkey chatter who has been telling me i cant do things anymore, but hey i can, if i really want to. self confidence is the worse thief with MS.

Enjoy your holiday. xxxx

Reading some of this it sounds garbage hey thats my brain ha ha. x

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