How do you cope

Everyday living
1

Hi, you all doing fine x

I have lot of questions in my mind I’ll start with whatever I can remember lol

How do you cope with daily pains,fatigue etc.
I am on cocodamol and Notriptyline but I’m still bed bound most of the days I can only do 10% of what I was capable of doing few months back :frowning:

When did you start using wheelchair.
I’m 34(I look young lol) I think wheelchair is big no no for me but I know my body.ive not been out of house since many many weeks because of my poor mobility(I look fine though)but because of MS related daily symptoms I just can’t be bothered plus sleep attacks and dizziness.

JUST TELL ME ABOUT YOUR DAILY LIFE AND HACK HOW TO COPE

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I cant say i have daily pains. Yes i have nerve pain but i can switch it off by doing other things. Most of mine are buzzing fizzing tingling burning. I take no pain meds in the day. I have one 2mg diazepam at night and 1 paracetamol to settle me.

I will never ever take cocodamol i saw what they did to my husband. BUT everyone has different experiences. he was on them long term someting like Co-codamol 30/500. He always fell asleep iin the afternoon then would be awake all night bless him.

I use my electric wheelchair out or going up to the rubbish etc. I cant walk very far just around my bungalow is my limit. I have a seated rollator, for in and outside when i let my dog out for her business but end up sat down on it mostly lol.

I am working hard not to transfer to the wheelchair in the day its tempting but not sure my bungalow will survive the bashing i am bound to give it.

I am sorry your going through this sleep attacks and dizziness not good combination. I do get a bit dizzy and occasionally vertigo but I just work it off.

my hack is. get up early go to bed early. it works for me.

3

Hi Sofia1,

fortunately I have no direct MS pain for which I am grateful. I do have 2ndary discomfort / low grade pain due to the way I walk(?) /move. Sometimes I avoid the discomfort by doing nothing and going nowhere, then I get grumpy about doing nothing… so it is about choosing the right compromise for the day. As for the git that is fatigue; once again I either ignore it till I drop and then lose 3 days in bed or manage my energy until I have used 75% I then stop and am able to crack on again on the following day (or the one after)
Whilst it is difficult (I don’t always manage) try not to compare with a few months back.
I totally get the NO NO to wheelchair, but one thing I have learned is that my thresholds and goalposts are constantly shifting. I would never advocate rushing to accept stuff, but I have stubbornly said NO to stuff that later I got on with and had some slight regrets at having missed stuff because I said NO previously. (hope that makes sense) you will learn your best way forward and there will be good and bad bits which will both help.
All the best
Mick

4

I’m lucky in that I don’t have daily pain and I’m on gov’t disability, so I don’t have to worry about working. I’m also happily divorced with grown children, so there’s no one relying on me to look after them.

I came through a really bad relapse about a year ago, and I’ve learned a lot since then. I use a cane in public on days when I’m feeling unsteady. I recently bought a rollator to use when the time comes again when I’m having more trouble walking. I even did a test run of a wheelchair a few weeks ago and had a lot of fun with it! I think of these things as some of the necessities of life, things I don’t want to be without – penicillin, books, coffee, central heat, and medical equipment that makes my life easier.

I just do what I want to do. I’ve learned that, except for the worst days, I feel better if I accomplish SOMEthing during the day. That might be washing the dishes, sweeping the floors with a broom, or just rearranging my bookshelves. One activity for a maximum of 15 minutes. Once in a while, I’ll do another 15 minutes later in the day.

I stay pain-free by playing all day. I do move around enough to prevent my limbs from atrophying, but I no longer worry about keeping the house clean or the yard neat and tidy.

I get up around 8, let the dog outside on a cable, run through the bathroom, and make coffee. Then I sit at the computer and check the news, e-mail, forums, favorite sites. At 9, my mum gets on, and we’ll chat until one of us decides to do something else. Around 10, I take the dog out back, again on his cable, and he plays while I sit in a rocker and read or watch nature.

By 11, we’re back inside. This is when I do the Something for the day. After that, I’ll probably fix a very simple meal in the microwave and curl up and watch some TV. If I find myself dozing off, I’ll crawl in bed until I don’t feel like being there any more.

Afternoons and evenings, we alternate between the back porch, the computer chair, and the comfy armchair in front of the TV. I have a lot of computer games and DVD’s. I plan ahead for things like mowing the grass (with a fully-automatic riding mower), laundry (which is down in the cellar), or going shopping (with someone else to do the driving). I make sure I rest up an extra amount beforehand and don’t have anything planned for a day or so after so I can rest up some more.

I have days when I go back to bed 15 minutes after I get up, because I’m so tired. Other days when I’m up half the night, unable to settle, and I wind up dusting the whole house. I’ve learned to just follow my body’s lead. If I need to sit, I sit. If I need to lay, I lay. I know that if i push myself too hard, I’m going to wind up with pain, stiffness, brain fog, and all those other irritants, so I pick and choose when to push myself that far. I don’t worry about other people and their opinions any more, and I’m having the time of my life!

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I forgot to add that I don’t even attempt to get dressed or brush my hair until I’ve been up for a couple hours. It’s just too difficult early in the day.

6

Hi Sofia

With fatigue, I tend to do as Mick does - too much when I’m being stubborn, but do try to make sure that a part of doing too much is on something that gives me enjoyment, so that the mental boost and good memories offset the later fatigue blues, and 2-3 days recovering. I can hear my sensible side of my brain telling me I need to stop. My pigheaded side of the brain says no, keep going!

When the sensible side has the upperhand I try to manage my energy better. Interesting that Mick says he uses up to about 75% then stops. If I had to put a figure on it, I’d say with me, that it is probably about 75% too, when my body is really letting me know. Finding a balance isn’t easy though.

I have cervical dystonia (plus other neurological issues - brain atrophy and lesions). When the dystonia was really bad I looked very weird trying to walk, so didn’t want people to see me like that. And walking was very difficult too. But part of me needed to be out into the outside world. The longer I left it the harder it seemed to be - the outside world felt more scary. Of course we didn’t have covid back then, so I didn’t have to assess that risk! I started to go out in the evening when fewer people were about, and went to places some distance from home, so I wouldn’t bump into people I knew. Bit by bit I got used to people giving me strange looks - and also began to not worry so much about what others thought. To be honest, by far the majority of people are fine, so I was foolish to have worried.

I’m also one of those very reluctant to use aids as I don’t want to accept that I have disabilities. But at the same time I do want to do stuff, so have to make a compromise with myself and ditch my pride on occasions. In my early days when I had a number of relapses and walking was difficult and balance off I’d not have been seen dead with a rollator or walking sticks. I found pushing my bicycle worked as well or better than a rollator, and I looked sporty rather than disabled! Luckily on each occasion I gradually got my mobility back over the weeks and back to actually riding the bicycle too.

I also refused to sleep in my bed during the daytime if fatigue was really bad - would instead sleep on the sofa. Psychologically I needed to kid myself that I wasn’t ill and in bed, but up but on the sofa, just resting! I’m still like that. I’ve got a recliner which I use. It also keeps my daytime separate from in-bed night-time, so a bit of normal structure to my day.

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It is reassuring to hear that I am not the only one trying to arbitrate between the ‘sensible’ and the ‘stubborn’ parts of my personality each of whom have their benefits and costs. Who knows how today’s debate will end up? After 30 years I am still learning and still make stupid mistakes. I hope you are doing OK
Mick

8

“How do you cope ?”, I suppose this is the million dollar question and the best answer I can give you is we all cope the best we can , some days we might feel like we’re winning and having days with reduced issues, and other days where we are truly battling to survive the day!!

My hacks would be to listen to your body , pace yourself, try to do as much exercise as you can , our bodies are designed to move and be active, I personally try to encorporate some sort of movement in the day . Take the right medication that is effective, eat healthily, try to get enough sleep etc…… all the typical stuff really :slight_smile: