Last reply 1 year ago
Ups and Downs?

I rarely ever think about my MS. Its like i know something obviously isn’t quite right and I get an infusion once a month but i’m so used to it now I just don’t give it the time. I don’t like to. I try to live as normal life as possible, I’m even surprised I got this back tbh. I avoid it i think. Anyway, it’s really starting to annoy me that there is no cure. Recently, ive been thinking, oh wait, I have to live with this for the rest of my life. Its not going anywhere. I’m so young too, and my walking is ok but not how it once was. Sounds petty but I miss what I once had.

Any people diagnosed for 5 years or more that can shed some positive light please?

Trying to keep my spirits up but its difficult at times.

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1 year ago

I only been diagnosed for 6 month’s, so I’m newly diagnosed as well. I watch a lot of YouTube videos of how people go about it and it helps. I’m 31 yrs and I know how you feel about being young and getting hit so early in life. Think of it as a new vessel and you have to have to figure out the mechanics on how it works. Research and get as much information as you could use to figure out what guys your body. Don’t do it to much or it will drive you crazy. Keep your spirits high and hope for a change.

1 year ago

Hi, I have had the beast for 25 years, only just turned rrms into 2pms. On my feet for 24 years, walked, caravaned, shopped, I still do all of these, I even dog walk 2 Airedales ( dogs) on my mobility scooter. Was on the original trial with Beta Interferon 23 years ago, no drug choice in those days. Just swapped to Tecfidera a few weeks ago and am living in hope.

There is always something that can be dove, or you can do. I’m 62 and still fighting, the government, the council, the NHS and anyone else you care to mention!
Keep your chin up, there’s a lot of life still to live.😍

1 year ago

I’m 28 years old and was diagnosed at 22 so I understand how you feel. I’m taking it day by day and living off the hope that one day they’ll find a cure.

1 year ago

Hi @lillylitmus and welcome.

You’re doing well if you are presently “living in harmony” with your MS. I regard MS as my unwelcome lodger. I can’t evict them, so I do have to find a way to allow life to go on with the minimum of disruption.

Yes, there are always going to be thoughts of “what might have been”. But life is going to continually present us with challenges, which we will manage in some way or another. MS is just another of those challenges. We have to evolve to survive.

The MonSter has been in my life for over thirty years now. There isn’t a cure, but the present range of Disease Modifying Therapies (DMTs) are capable of reducing MS to a minor irritation.

Keep doing what you’re doing, as its working for you. And try and keep everything in perspective.

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