Hi there, I’m over 3 years since my 1st major episode and nearly 18 months since diagnosis which was initially one of RRMS but has since been changed to Progressive. Am I the only one that isn’t struggling with their MS? Sure, I get really tired sometimes after a busy day but then again I’m mid 50s so isn’t that kinda normal? My legs don’t have the strength in them like they did but they still work and while I can’t power up the stairs (it’s more of a plod) they get me around well enough. I also get a bit befuddled in my brain when I try and multitask or concentrate but all in all when I read stories from other MS sufferers I feel a bit of a fraud. I seem to be doing so much better than I anticipated so far, does anyone else feel their journey could be a whole lot worse? Maybe it’s just early days for me but I’d be interested to hear if anyone else feels the same. TIA 
Hi Curlie yes im lucky enough not to have any major problems most of the time people don’t even notice theirs anything wrong with me and cant believe it when i tell them. I do have a blue badge for parking as when out walking i get tired like you im just turned 50 so goes with it i think, but when i do park to be a bit closer i do get looks when i get out of my car as if to why, i havnt been challenged on it yet but feel i will be one day.
I feel the same. Diagnosed this yea but probably had it 20 years. Minimal symptoms. Managed to do fitness class this evening where I burned 665 calories in an hour and I’m 49!
julia
Hi Curlie are you on a dmd at the moment or managing without?
I always say that wherever you go, whatever you do, somebody somewhere is worse off than you. It stops me getting too down about my health.
I’ve had RRMS since November 2000, although I didn’t get a firm diagnosis till 2004. I’ve had a brief time in a wheelchair, but mostly I get around with walking sticks. Like Curlie, getting upstairs is a plod. MS fatigue is the real enemy. There’s a difference between that and tiredness - being physically and mentally spent. And no, it is not normal in your 50s. I’m 52, my husband is 56 and he doesn’t get tired the way I do. Sometimes I do more than I should and it can take two or three days to recover. I always say that I can live or exist, and living is better - while I can.
MS is different for everyone. Don’t think that your experience has to match some pre-ordained pattern. Make the most of the good days and have as much fun as you can while you can.
Hi Curlie,
I understand your feeling but with the benefit of a bit of hindsight I would suggest that you should not feel fraudulent you should just live your life.
I was diagnosed with RRMS in 1991 and despite some nasty little episodes, I carried on working and playing as best I could.
I felt a bit fraudulent (or even a bit guilty) My circumstances and condition have changed and I now realise that anytime spent feeling fraudulent or guilty is just wasted time. For absolutely everyone the passage of time shifts our goalposts constantly. I would recommend enjoying every moment to the max.
All the best
Mick
Never feel fraudulent about your ms, just enjoy the fact in your mind it’s not impacting too much on your daily life and long may it continue.
Three years ago my life was exactly the same thinking to myself that if this was what SPMS was like life would be fine but unfortunately for me things have changed and life is not so rosey anymore and it is a bit of a challenge. Saying that, I’m in my late 50s and still work part time and can still get about with aides so I still think myself fortunate but I am visibly disabled now.
I try not to look too far into the future because as you know with this illness you have know idea what’s ahead.
The one goal I have for the future is at my youngest daughters wedding in two years time to be able to walk down the aisle as mother of the bride with the help of crutches and not a wheelchair.
Mags xx
Feeling fraudulent is cr*p. Just feel lucky that you are managing OK.
I was RR and had pretty minor problems for the first 12-14 years. It’s only been about the last 6 years that have been difficult. And the last 5 that I’ve been a wheelchair user. Coming up to 5 years that I’ve been more or less unable to walk.
But I would never look at someone with any kind of MS and think they were fraudulent or somehow cheating because they’re relatively fit and able. It’s still MS, you still live with the ‘what ifs’ that the rest of the population don’t. If anything, you are more thankful for your abilities because you can see people with greater difficulties.
I truly hope you stay fit and well for as long as possible. Maybe MS will never come to much with you. And I’m happy for you.
Sue
Yeh Curlie, why should you feel guilty for not being worse off with your MS?
Thats daft......everyones MS (or in my case HSP) runs a slightly different course…or even a majorly different one.
Either way, you live life the best you can and enjoy being as well as you are.
No-one resents you for not being as badly affected as the next person.
OK?
luv Pollx
Thanks guys xx
I too feel fraudulent sometimes. For example at my recent annual checkup the receptionist explained that there would be a delay as an urgent patient had just come in. Everyone kept apologising for the delay despite my repeatedly saying that it was fine. When the lady came out of the doctor’s office she could barely walk and had to wait in the waiting room to be admitted. I felt like an utter time waster so I can sympathise Curlie. My question is about telling people. Obviously my family and close friends and colleagues know. I was having a bad day fatigue wise last weekend and was still in my dressing gown at about 3pm when my daughter’s new friend’s mother dropped her off. Do I put up with people thinking I’m lazy or do I explain? I don’t want people to think I’m looking for sympathy but sometimes I could use a bit more about understanding. I have a colleague at work who’s in his 20s. When he complains of feeling tired I just want to describe my fatigue in explicit detail. I can’t be completely open as I teach and some colleagues are also parents. I really do not want to become the subject of the playground gossip…
annelda72,
That is a tough one, normally I would say “tell and be dammned” however I understand why that might not be the best option. I would expect a colleague to be professional enough to understand a clear description of your fatigue and to ensure your privacy by not telling the kids.
Not knowing your situation or relationship I shall stop wittering. Some people in their 20s are smart and mature but some are just bigger kids.
Take care
Mick
Hi Annelda, thanks for your comments. My close workmates all know that I have MS. I’ve always been quite an open person and I did’nt have a problem with them knowing and it has helped me a lot if I’ve struggled with a task or get a bit confused. They know to make sure they have my attention before telling me something I’ll need to remember and they tend to look out for me somewhat. Of course, like you say, there are also those who don’t understand that it’s not just tiredness like they might feel and they try to make comparisons. With regard to being the subject of playground gossip, today’s news wraps tomorrow’s chips. It will be a fleeting thing and they’ll soon move on. I wanted my workmates to hear my news from me and not by the jungle drums going in to overdrive but that was my choice with my condition and you must handle yours in your own way. xx
Hi Hope, I’m not on any DMT now. I took Tecfidera for about 4 months but had quite significant indigestion and “beetroot face” on it which wasnt great but I persevered. However at the point my diagnosis was changed from RR to Progressive I stopped as Tecfidera is ineffective against Progressive MS. Take care Fran
Long may you continue x