How do you stay sane when ms is wrecking your life?

Hi.

First a bit of background. I’ve had rrms for 15yrs now. Things have progressed a bit, I’m now two sticks at best, really struggle with heat, stiffness, coordination, fatigue, wonky bladder and bowels, etc etc. By some miracle I’ve managed to keep working part time. I live on my own and don’t have any kids.

I’ve not been well all summer, off work mainly stuck at home, cancelled holiday, really struggling with the basics (even more than usual). It’s pretty awful.

When you’re having a bad patch, or had some progression how do you cope with it?

I really, really struggle. I hate being stuck at home. I feel as if ms is slowly but surely robbing me of a life. My horizons are shrinking as I can do less and less and feel so helpless and overwhelmed.

I’ve started some counselling sessions as clearly being so stressed isn’t helping my physical symptoms so I was hoping you could share your own experiences of what helps you.

As always very much appreciated.

Dawn

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I am sorry that life is being particularly tough.

For me, counselling was a real help when I had hit a ‘So what the heck am I supposed to do/be now?’ wall. It didn’t make me any better at walking or doing my buttons up. Neither did it make my sluggish old brain think any faster or more effectively. What it did do was to give me a new slant on old problems and cause me to think afresh about what life had to look like to be a good life. That made me happier in ways that I still find very hard to put into words (which is why all this sounds so infuriatingly vague and woolly - for which, my apologies!) But it really improved my quality of life and I hope that it does the same for you.

Here’s to better times ahead.

Alison

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For me it’s been meditation.

meditation = less stress = less physical symptoms.

It was a no brainer for me.

Take care x

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Thank you Alison and Lisa.

Knowing I’m not alone in finding this a struggle is a comfort. My counsellor has sent me a link with some meditation type stuff on it which I’m checking out x.

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Who said we are sane? That’s what keeps us going we are NOT sane, we just keep chugging a long with this ****ing condition/disease . I know exactly how you feel, concentrate on anything but M S. including this Website! It’s very easy to wallow, don’t permit it to take everything and it won’t. Look for the positives It’s not easy but this forum is a good start. Take care, be safe M x

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I am same as LisaC i do meditation and find it helps a lot.I am affected quite bad mentally as well as physiclly this last few yeari I have severe panic attacks and really bad anxiety much of the time.The meditation i do most days really helps me.I am pretty much housebound but I can accept that,its others that cant accept it.

J x

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I am glad you are having counselling, it helps you to deal with emotions, and also supports you by showing you other ways of dealing with things.

MS can be hard to deal with epecially when we are having a bad period, but after every bad period i have good ones, so i concentrate on that fact. I will wake up one morning, and be in a better place again with it.

Its fine to go insane with it all lol… Frustrating. I find other things to do when i am in my limited phase, and always seem to be busy. I have even enrolled on an online course i fancied.

Is there no way you can get out more, have you got a mobility scooter, or rollator etc, that can assist you when you go out? Can friends/family take you out more? I have a scooter and when i feel really down i go out with the dog and we have a nice walk, just getting out in the fresh air is such a boost.

Definatly doing things helps me, social media, my little bantam chickens, my dog, my scooter, I always seem to be busy even if it is confined to my home or garden and occasionally out. xx

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I know, dealing with this crap day in and day out takes some coping!

I dont have MS, as most of you know, but my HSP is very similar in the way it limits one`s abilities and causes great fatigue.

I`ve been disabled for around 16 years now…plus a couple of years before that wondering why I couldnt function as before. Why did I keep falling over fresh air, why did the housework take 3 times as long, why was the job I once loved causing me such forgetfullness and no longer being able to multitask?

All these questions and more besides, haunted me in waking as well as sleeping hours.

So how do I get through? Well some days I dont…I stay in bed and feel sorry for myself. I swear a lot!

I think the real force behind me is twofold.

  1. I have always had a bright outlook on life, been rather gung-ho about daunting things, never been shy, maybe even naive at times and not thought the possible consequences through.

  2. My hubby of 44 years is very strong minded (and yeh, we clash often), but he has held me up when times are tough and told me never to give in. The question some people ask why me? has no answer, apart from why anyone? So dont waste valuable thinking energy with that one.

I have 3 carers plus hubby, so I am never on my own. Plus I have a great friend in my little poodle, Sophie…she gives me love and loyalty, oh and lots of wet kisses!

I appreciate that not everyone has people around them to keep them going. And then, yes, sometimes we do enjoy our own company.

I dont know what makes us different and able to bounce back when we are hit hard with these rotten conditions. But what I do know is that I love life and want to stick around to keep on enjoying it.

love to you all,

Your friend,

Pollyxxx

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Hi poll we live in parallel universe. I am 16 years with this thing, and prior to that having issues. I even said to one of my tutors, I swear to god there is an evil genie sat on my chest stabbing me all over my body, as i was always getting weird nerve pains, falling into things (was black and blue my staff thought i was drinking in the mornings), falling asleep in meetings, burning alive in the bath, dropping antiques which i had collected, i used to photograph them, then sell on ebay lol… the list is kind of endless.

I have a thirst for life too, i love it, so much to learn every day i learn something new even if its just a word lol.

I have to prop up my hubby that is the issue for me now, as he is draining my energy, and we need to address that. But overal life is good. xxxxxxxxxx

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Thanks all for your input it really does help.

I definitely find being on my own hard and I was always so fit and active pre ms I just can’t get used to my dysfunctional body even after 15 years.

Thankfully the weather is getting cooler so I should hopefully be able to get out a bit. One day at a time eh!!!

Xx

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The most important thing for me is having a focus. I research in quite a sociable way, and write books that I feel are of profound importance to all of life on Earth. That gets me out of bed each day.

Loving support from a small circle of friends and family, and my partner, gives me something living and breathing to stick around for.

Looking after myself with diet, exercise, fatigue management and meditation helps enormously. Having a great bed (Dormeo octaspring mistral) and wheelchair (carbon black) help keeps me rested and comfortable.

Escapism through film, TV and video games gives my mind a rest from orbiting my limitations.

And having a spiritual outlook - that these bodies are temporary vehicles to allow us to explore and learn - detaches me from feeling like all my spiritual eggs are in one basket. I had a powerful metaphysical experience which showed me this larger reality, and that changed my life.

Most of the above required effort, dedication and determination to figure out and implement. I have a powerful sense of mission, and I try to to stay strong for those who care about me. I have a hard major challenges with depression and anxiety, but the positives in my life keep me on track.

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Yes the ruddy evil genie woke me up at 3.10 a.m. this morning and is still doing its worst.

I went for 5 sessions to a Mindfullness counsellor. I say pooh to most counsellors but his was excellent. It wasn’t about oh poor me etc it was like a mental re-boot to adjust not to being ill, but to how modern life has changed, ways of thinking, how the world works etc. It was wonderful.

It also was part of my needing to adjust to not being well enough to work. I retired due to ill health in July, but I had in fact been off work since last October. I was becoming worse, work was destroying me and we had a new boss. I was about as welcome as the plague so after the last time she was horrid in front of everyone, I went home and never went back. After thousands of emotions and days sobbing and wondering what to do, I now am permanently on the sick. Healthwise, MS still potters around my body like some sort of random maze but as I thought I would never say this, for me thank the Lord that I do not work anymore. My life is about 80% smaller than it used to be but the quality is superior, even if I am in bed reading all day.

Events led to me being at home. It was a big wake up call. I wasn’t in charge of anything at all but now, in retrospect, I am doing the best thing for me. I fill my day with lots of things that I want to do, films, reading, pasttimes, some gardening. If I do something one day, I rest the next day. This routine has led to energy saving and a better outlook. It’s not always true as there are days when I just lie here feeling grotty, then the rest has done me good and I have to stop myself planning things because I know my head says yes, body says no.

I go on holiday in this country. However I don’t book it in advance (I never have in fact). I wait for a really good few days then chill, then think right I might be up for a visit somewhere. Look online, check transport or my energy levels to drive, phone them up and say I have problems, can they carry the bag in, are there stairs etc and then go for a few days. I always rest the day after travel and then have alternative days doing and resting. The internet is set up for late bookers. Don’t know if this helps! It sounds like you are in the phase where everything is changing, it isn’t very nice.

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My Mindfullness counsellor introduced me to Healing Clinics, the extra guest, Thich Nhat Hanh, Adrien (30 days of yoga and not really for doing the yoga but listening to it and breathing).

I watch horror films, Netflix (really good for days when you can’t get out), go to the pictures, read mystery and suspense, spend loads of time on Youtube making favourite playlists and listening in to other people’s. My friend does online jigsaws, you can send a picture and the programme will make it into a jigsaw of how many pieces you specify, then you can share it with others and do their jigsaws on a timer to improve time. I am going to start word games on the computer as I very often have brain fuzz. I garden, when I visit places it is usually garden centres of plant centres, it isn’t very often and my children say I am the most boring person on the planet, but it is my plan, what I want to do, it is doable and recoverable. My life is Doctors, hospitals, library, gardening, reading. Bit it is mine.

I find it helps me to have a plan of tv, so at a certain time a day I always watch tv for an hour, then read a book usually at 9 pm at night so that there is some structure and I am not just in my nightie. I try to bake really disgusting tasting cakes and I am shattered for days after, but at least I have done something creative. Most of my cakes taste like the bottom of a flip flop but I have a go, cut them up, put them in the freezer and if desperate, eat one.

It’s like complete mind change. I have moved to a bungalow where lots of people of a certain age live, it’s great. I am as slow as them and we all potter about or wheel about just getting by. The 84 year old gentleman down the road stopped me for ages last week advising me that ‘I would need some wheels soon’ and showed me his wheels and what not to get.

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Morning hebeyellow, i loved your posts, they did make me chuckle, as i have done some of it myself even down to the cake baking, and oh yes essentials like Netflix. I am in to watching their older series, really into Gilmore Girls, and loved Frankie and Grace it whiled away my day.

I do lots of things I have bantam chickens which i love and give me a purpose. My daughter took me out yesterday so i could buy some flowers to put in my pots, which was a nice few hours out, but boy I hurt now but it was worth it to get out.

I find these forums great too to help us get out of the doldrums.

I so want to go away though, not with my husband who is driving me nuts right now, but on my own with my pooch, just to take a break from the house, but i dont know how. I would love to go to one of those places where you can have assistance but be able to chill out. I yearn for the sea. I cant drive not allowed too, so stuck really. Thats my only down fall. x

xxx

Oh have you watched The Fundamentals of Caring on Netflix its amazing film. x

Evil Genie. How odd… i used that expression way before i was diagnosed when i was working. I said to a colleague i feel like i have an EVIL GENIE sat on my cheast and its stabbing me all over my body, arms, legs, crushing my ribs lol… very weird and causing me to fall over and oh yes drop things. It became my saying, here we go again EG is back playing havoc lol. x

Crazy, where abouts do you live? I`m just thinking about you needing a few days away (cant wait for mine next week!), with some care on hand.

2 hotels I`ve stayed at do offer that. Their have all the kit you may need, wet rooms, commodes whatever, they are in Blackpool and Llandudno. They even offer transport.

The service and standards at both are brilliant!

If you would like any more info, please pm me.

pollx

Hi Dawn,

I have tried in so many ways to try keep a strong mind, yes there are things that come along and knock us for six, it can be life events or even medication and it takes time for us to get back on track again. I have used different activities to try help, art ,crafts, music, theatre. I have set myself goals to try and achieve, I have fairly recently become interested in meditation and mindfulness. all these things can help but there can be times when nothing seems to help. For the main, I do try live a day at a time, that way It can make things easier. I am single so in that sense I don’t have other things that I have to take into consideration, I don’ t say that in any selfish way just that is how it is.

any help that there is available from outside sources can often be of great help and can let us see other perspectives other than our own.

nothing is easy going but if we can adopt a strategy that helps us make things easier going for us it has to be a good thing.

David

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Right Crazy Chick, always set yourself up to achieve (even if it is just putting on socks) but embrace the possibilities. Now, if you want to go on holiday surely there is a way. There must be? Have you considered taking a carer? I would hate it but it depends on how much value your space and time away will give you. If it makes you come back feeling better, healthier, balanced, ready for another year then there must be a way.

If I go away it is like a military operation. I am lucky enough if I plan carefully, to drive still this year anyway. So I plan two weeks in advance, put a small bit of packing in the car each day. Stop every hour to get my leg working and you know what at the service station, pack everything for emergencies if there is a stoppage on the road. I know it sounds simple but I have known families with very small disabled children enable holidays and come back shattered but it can be done with wheelchairs, hoists, all sorts.

So, plan the positives and negatives, get a big piece of paper. If the negatives or the fear outnumber the good things then there is no point in putting yourself through the stress. However, it might be worth a nice cup of tea and a chat with hubby. Very simply, suggesting you might like to go away for I don’t know 4 days, not too far, by the seaside maybe and you would like some help planning it or finding if it is possible. I tell ya, when I was married, my hubby would have found thirteen different ways to send me away for a few days if it meant he had a rest from me! He would have driven me there are back.

Coach trips offer lots of things but it might be enough for you, only you can decide. I have been looking round lately for extra assistance and there is lots there. I went to Newquay for my last trip there this year in April, the hotel knew I had trouble with stairs. I had a tiny room, clean, spotless, shower and bath, warm, window. Lift outside my room, eating area on the flat next to the bar, very nice barman who bought my evening cappuchino onto the terrace each evening because he knew if I carried it it would end up all over the carpet. A lovely 90 year old lady who made sure everyone let me get in the lift easily ha ha.

Anyway, now is a good time, before or after half term whilst prices are low. Have a think.

Things to consider, insurance, travel, assistance, what you need when you get there, emergency planning, how long for, travel back, food, special needs (always insist and check you have your own loo, bath or shower and assisted showering if you need it). Is there a nurse or GP near by and all the other things to consider. I can only go places with agreement from my GP if I am less than 20 mins from a hospital so this is part of my planning.

If it is all fearful or sounds crap, don’t. Or plan carefully now, talk to hubby, phone some companies up see what is up and maybe plan for next year. I am going to an easy accessible caravan (whole site is dog friendly) in October for four days before winter starts just to get away, I feel things getting a bit heavy dude!! I intend to sit on my bum with the caravan door open, breathe sea air or get sand in my eye and eat at the pub. Then come home and get all my woollies out. If you feel sick with it all already, what about planning a day out instead. Something just for you and doggy. Last thought, if you go for the day out version, there may be local volunteers. My friend Tom was one, you pay their petrol cost and they drive you there and back and stay with you if you need it. Only costs their petrol.

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Hi Poll i live in gloucester both are too far for more, but thanks for caring and sharing. Rosie. x