Forum

Life sentence

Does anyone else wonder how they are going to find the strength to get through the rest of their lives living with MS. Recently I’ve found myself daydreaming of the life I had before MS and then the reality of what life is like now comes flooding back and I think I’m not strong enough to endure the next 40 years.

Yes you are!

I felt exactly like that 17 years ago but here I am still going strong!

You know that Tee Shirt slogan

“Life’s a b*tch and then you die”

Try not to think about what life was like before – it is the road to madness. Looking forward’s not too healthy either – try and concentrate on the here and now and make each day hold something special that you enjoy (might only be a cup of coffee or a nice TV programme)

Jane

I have good days and bad days but you have too see past then. If you recently dx, you might feeling down, but get past and make the most of what you have. If you felt like this continually over a period of time, you may need to speak to someone. Im sure most people on here gone through this. Chin up.

Hello,

My life before ms was all work work work, 25 hours aday 8 days a week. Now i can kind of slow down and relax a bit.

In 40 years i may well be cured! or still walking, running, going out, etc… We don’t know how we will be in the future. With the advance’s in neuro science a cure or drugs that hault ms may be available within 40 years.

Maybe worth a chat with a gp, if you feel like this for awhile. Get things off your chest.

Goodluck,

Darren

‘Yesterday is history, tomorrow is a mystery but today is a gift and that’s why we call it the present…’ Read this on here a while ago and thought it was a good way to think about life with MS…

Yes, all the time. Monday seems to be "get out of this " day for me.

this past year i seemed to have spent a lot of time thinking about how i use to be especially when me and my husband were young .we had such plans things we wanted to do when the kids were grown up and gone.well our youngest son leaves in a few weeks and guess what all he things we wanted to do now is a no go.but as my husband says we have each other we don,t need fancey trips abroad.i guess its true but i still wish i could turn the clock back and make the most of the time we had before the ms took hold.i know the future can look bleak but who knows what is around the next corner good or bad we ms,ers will keep going.you get knocked down but you,ll get up again nothing will keep you down.

take care xx

Hi I feel exactly the same and often wonder how I am going to be able to spend the rest of my life living with this wretched disease. I’m not long diagnosed so I’m still getting my head round it all but I do sometimes feel terrified for my future. I had so many plans, I wanted to spend my retirement travelling to all the places I haven’t yet been and its a chilling thought to think that I may not be able to do any of that. I dream every day of having the old me back but it’s not possible. I’ve never felt more trapped. On the plus side I now take life a lot easier and have downgraded to a less responsible job which was a great decision. I now live life one day at a time (don’t have a choice on that one) and I would say I appreciate my life so much more nowadays. But yes, this disease sucks and I would do anything to have it taken away, but it is what it is and I have to learn to adapt. Wishing you all the best xxx

I hear ya!

But the wise folk who have replied also are right: don’t look back. And instead of seeing the rest of your life as an endurance test that you’re not sure you’re up for, instead look at each day as a discrete chapter. Break this down into hours if you have to. And absolutely focus on the here and now. I have never suffered depression like I did the first 2 years after diagnosis, but I’ve learned a few tricks. Make everything you do as enjoyable as possible, and don’t waste your time and energy on people that don’t matter. If you want to sit in front of the tv watching an entire season of your favourite show with a large box of chocolates, do it. If you want to go visit a friend in another country, do it. Be kind to yourself.

I guess that this is going to sound a little odd but I didn’t actually start living until I got diagnosed with MS and then only after the 3-4 years it took me to get my head round the the fact that I have MS. I have been on Tysabri for almost 4 years and in that time I have had no relapses although my mobility has worsened to the point now that I have to use a wheelchair to get out and about as it took the DWP 6 months to sort out my DLA claim and the stress to my body, not my mind caused it!

I have done an Access course to Health studies as I have tried and failed to get on a p/t OT course at my local(ish) uni. I am now doing A-levels as they said that my qualifications could have been better and I don’t enough experience for getting on the OT course. To that end I will be starting voluntary work at a local hospital home for veterans running a group for patients in conjunction with the lead OT there. I asked her about possibly shadowing the OT team there for the experience and she told me that it wasn’t necessary as she said that the uni would be practically begging me to fet onthe course with the experience that I will gain from running the group!

Cos of the paralympics and the MS swimmer Stephanie Millward I have got off my rather large hairy backside and I have started playing wheelchair basketball, I even managaed to get to fund through the MSS and other charities to be able to get a basketball wheelchair. I will have to say that I am now at most physically fittest I have ever been in my life.

It took a massive kick up the backside called MS to get me to this as before I was just coasting through life doing nothing. I realised then that I only have a short time to make the best of it before the MS COULD cause problems and thouht to meself SOD THAT!!!

Andy

Yes, come on now…we`ll join hands and pull those who need a bit of an extra tug…the when they are stronger, they can pull the rest…ready 1,2,3…puuuullllll!

Ive had my monster 15 yrs now and my slogan is, I may be broken but Im still here!

Yes, they wont keep this lass down!

luv Pollx

Hi Yes MS is a life sentence but remember there is also always hope of a cure. I’ve led a full and active life knowing I’ve have MS since 18/19 and I’m near retirement now. I’ve travelled extensively, climbed mountains, sailed, walked, went to university, had children, have a full time career. I’m in a wheelchair now but yes I think if I look back on my life I done everything I wanted to do and more than a lot of able-bodied people I know. Yes I have MS but I’ve also had a life and I’ve been love (am loved) and I’m happy. I’m not suggesting there haven’t been extremely difficult times because there have been those as well, but I’ve been able to balance them out with the good times. And friends I’ve met on this site have certainly helped me during dark times so take heart - live your life fast and hard now and don’t worry about the future as you cannot control what might or might not happen. I live in hope of a cure, not for me as its too late for that, but for all those who are in the stages where the damage can be reversed.

:slight_smile: Mary

Mary, I just want to say what a lovely positive reply you have given the op.

I remember you once saying to me, If anyone else tells me to be positive.....

nice one hun.

luya

pollxx