Hi folks , i dont know how you all cope , im finding it hard i feel rubbish everyday and cant seem to figure , this relapse idea out as i havent felt well since Jan , doctors dont seem to wanna know now that the results are in as a maybe MS but its also Parkinsons & Dystonia so my neuro keeps telling me this is a secondary condition , what keeps you folks strong and fighting also how do you know when its a relapse and not the same episode dragging on , what coping skills do you use ? thnx in advance
You just kinda get on with it. The alternative is to sit and wallow, and to let your symptoms/condition define you. The way I see it is that I have MS, but it doesn’t have me x
Just as MrsC says we just have to grin and bear it sometimes. I know it is hard but for me there is no other option.
Laughter is my coping skill. My friends and family help get me through. And also this brilliant site. There are a lot of lovely people here and we are always there for eachother.
Oh I can’t grin. My chin and lips wobble. Haha x
Aw, you just find a way but it’s not easy… getting MS as a secondary condition is really sh*t!
I’m a likely PPMS’er and I was only given that news 3 months ago, what can I say, I think I cried virtually every day for the first few weeks, then I managed to go usually 3-5 days with no tears, now I only break about once every week or two… each day, I get up and try to get through that day. There is always the fear - at the moment, it just gets a bit tougher each day, what if I get a new symptom?!
I still wish I’d win the lottery (if only!) as I’m a self employed contrator, so I know it’s going to get harder for me, which means it’s going to get harder for my husband. Now is a time that I really with I owned a house and was debt free, sadly that’s not the case… so, I’ve completed all the paperwork and put our name down for a council house, applied for PIP, started to ebay pretty much most of my old life things (I don’t have much use for high heels now!) and I take a deep breathe and try to get on.
So call it fighting spirit, call it want you will, the bottom line is that giving in is simply NOT an option!
My only real coping skill is appreciating the love and support of my family and friends, trying to enjoy that little things in life, that kind of thing. Learning not to overdo things, one evening going out for dinner is likely to leave me needing a days rest!
So that’s how it is for me really, I think it’s just getting on but I’ve had people comment on my bravery, I’ve even been called an inspiration - that made me want the ground to open up and swallow me! It’s just the hand we’ve been dealt is the way I look at it, in the couple of weeks around my initial diagnosis, I lost a colleague to a brain tumour, he was a few weeks from diagnosis to passing away - losing David did make me realise that MS might make things hard but it wouldn’t do that.
OK, so talking about that has made me cry, I feel that this forum is probably one of the best coping tools for me, just saying how it is to others in the same boat really helps.
Whew, see I didn’t mean to say all that but thank you, as you have let me release a little.
Good luck Sheep, you WILL find your way and if you ever need to talk, this is a good place to do it and you’ll find friends here too
its my stubborn streak that gets me through
its not easy though!!
its not a nice thing to say but try lowering your expectations.
take pleasure in the little things like a sunny day and the autumn colours on the trees.
make a decision to smile at something at least once an hour. it will become second nature once you get used to finding them.
you have had good replies already…
for me my life has changed completely-4 kids and working, driving and aerobics to speech/cognitive probs, right sided weakness, powerchair and carers to help me achieve the most basic of tasks. i like to think of myself as strong but i def dont fight ms,its taken so much from me… but it wasnt aware of my ability to try plan b! one day i realise that even if plan z doesnt/wont work but until then…
i became a granny 12wks ago, i cant hold sophia but she can lie beside me on the bed/couch and i can sniff her-nothing like the smell of a baby!
i reckon theres a big difference between fighting and acceptance-i know which one is easier for me. theres no right answer that fits us all-we have to find our own way thru this hand we have been dealt… it will involve tears and laughter-just go with them
I have given up on “strong and fighting” because it’s doomed to failure. My aim is to just get through the day and to find just one thing that gives me some pleasure (its probably something really simple like a perfect cup of coffee) If you set the goal at fighting and winning I think MS will be the victor. I’m sorry if that sounds defeatist but I think that the notion of “beating” MS is to start the game with an enormous handicap and will lead to frustration. I seem to have started on a sport metaphor so to continue it – I have moved the goal posts – I have very small aims and 9/10 I’m bubbling along as well as could be expected.
I’m pretty new to all this myself, was diagnosed earlier this year after a couple of years of having weird things going on with my body! (Did think for a while that I was slowly going mad!)
The way I deal with any of my issues is through humour, usually laughing at myself! To the point that my children often ask “Mammy why do you diss yourself?”
This is a fab site and everyone on here has so much good advice, and ideas for dealing with things. The best thing you can do is stay positive and not let yousrelf get miserable.
Good luck xxx
Firstly, when it’s all new, be kind to yourself. It takes time to come to terms with it and you will grieve for the life you once had. For you, it must be extra hard as you have it as a secondary condition. I think it took me at least 6 months to stop being scared that each cold and fever was the start of a fresh relapse and that I was never going to see any improvement in the existing symptoms. Cry when you need to because you need that release but don’t let that phase go on for too long. If you seem to get stuck in a cycle of deep sadness then it’s time to think about gettng help. There’s no shame in that, it’s a huge thing to deal with and counselling has really helped a lot of people.
With time you will know your body and what symptoms are there all the time. If you get new ones and you don’t have any kind of infection then it’s a relapse. If you have a urine infection (always get tested as it’s possible to have one and not have any symptoms at first) or any other kind of infection then it’s a psuedo relapse and you should get better when the infection clears.
With all of the above, as others have said, keep your sense of humour and take pleasure in the little things in life. If anything I think MS makes us more grateful for the little things in life. In a way that makes us the lucky ones because often the ‘normal’ people are too busy rushing around to notice the simple things. We’ve learnt how precious these moments are and we take care to smile at them each day.
Hi, no wonder you are a bit more than fed up, hun. Being ensconced in a lengthy relapse must be hell. Pain and difficulties day after day is so wearing.
I was mis-diagnosed with PPMS for a few years and I often wondered if that was a better diagnosis than the RRMS type. I never wanted to offend anyone with that thought, but there are some real horror stories on here about lengthy relapses.
I hate to think you may have 3 very serious neurological conditions and am very concerned for you.
Look after yourself and accept any help that is offered, We get no medals for our bravery when trying to cope hun.
Look after yourself.
Many thanks folks , i think i hit a down day as all that was going through my mind was , whats happened to the old me , i used to be a Lifeboatman and cliff rescue climber for the RNLI & HM Coastguard , ride my motorbikes everyday and a commercial fisherman/skipper and in this 12 months so much has changed and so quickly since i lost the sight in my left eye , i have today sought councilling and after reading all your comments feeling like yes i can get on with this and dictate it rather than it dictate me, yep Boudica i never knew it was possible to have all 3 , but they are 100% when i questioned the Drs and Neuro that , it is … me im unsure if its all 3 or wether they are covering their backs , but im in a better place today made better by all your comments many thanks and i appreciate your time and efforts and support , i wish us all a better future
Just been reading all of your comments. Am finding things very hard myself - have secondary progressive ms - 3 years. and the last 18 months have taken a lot of my independence - can’t drive, walk with rollator and still very badly, coming close to having to give up my job which is the only thing that gets me out of house and even then my husband has to walk me to my desk and collect me again. It’s soul destroying most days and I’m sorry for bringing the mood down but things really getting on top of me now. Had a fall last week - just a few bruises but I’m even more nervous now.
Need to try getting my mood up again=(
I’m lucky to have supportive husband and daughters and I do my best not to complain (you wouldn’t think that by my message above). I also worry about the affects on my husband’s health as he tries to do everything at work and at home.
After all of that you have to keep trying - it’s all you can do - and I do find things to laugh at in the middle of all of this mayhem=)