Hi, I am curious to know how everyone motivates themselves with MS. Ive had MS for nearly 5 years and i struggled for some time to deal with my diagnosis. Having being diagnosed at 17 it was really hard for me to understand it as I go older. Now that I am understanding my condition morw im sturggling to motivate myself and figure out the things i like. Has anyone else struggled with this? What motivates you?
Hi.
Ive been living with ppms for 9 years and I try to stay positive, concentrating on what i can do rather than what i can’t.
I found hobbies very helpful. I needed something to do that produced something so i had a result i could see. I took up sewing, not that I’d ever been good at it but I’ve improved and I’ve made cushion covers, bags, I’m currently making soft toys for my first grandbaby due later this year.
I’ve learnt how to crochet granny squares via YouTube and made myself a lovely blanket. It doesn’t have to cost a lot.
Some days i don’t have the concentration to sew but feel like doing something and I label boxes my craft supplies are in or read or watch TV. It doesn’t matter what you do, but nothing beats producing something for me.
I hope this is helpful.
Min
Vodka & Redbull, or Vodka & coke, or a Gin & tonic.
I’ve always had a stubborn streak when it comes to not giving in, so my motivation apart from the above, is as simple as just not giving in.
Dont get me wrong, there are many many people with MS who just have no choice due to their level of disability.
For instance, this weekend just gone we had a leaky toilet which needed to be completely removed to repair, something I could remedy in the past with out any bother at all, so Saturday morning I got my tools together and just decided that the MS was not going to get in the way, that toilet was coming and the repair was happening no matter what !
Ok, it took me longer that it would have a few years ago and I was completely drained Saturday evening but there was no more leak and it was a poke in the eye for MS.
I get up 4 days a week and go to work, there are days when I could easily give in, and probably should, but I just cant do it, I have to try and beat it (MS).
My company have made adjustments for me, and I’ve had to changed jobs in work as there was no physical or safe way I could have stayed in my old role, but even though my new role is easier and the hours are less I still see it as a challenge to go to work and try to keep things as “normal” as possible.
Physically & mentally difficult, yes, helps with my motivation, almost certainly.
Disclaimer, I’m still waiting on a diagnosis, although I’ve had symptoms for almost 2 years now (23rd of July 2020 was when it all started).
I used to be into long distance cycling (furthest I had ever done in a day was 120 miles), mountain biking, kayaking, hill walking. Pretty much had to stop all those hobbies now (although I can now manage short bike rides).
What I did do last year was get into radio controlled off road trucks as a different hobby. It still gets me out and about.
Oddly my mobility is better when I’m not concentrating too much on how my walking is.
Other hobbies (which I probably should do more of), is plastic model kit making (Airfix etc), although with clumsy hands at times it isn’t as easy. Although I may do more of that when it’s bad weather, I’d rather try and get out and about more while the summer is here. I’m also trying to do more with my local photography club, fortunately
members are happy to give me a lift if we are having a club outing anywhere. While I can drive, I don’t feel to happy driving any great distance.)
Fortunately (thanks to work place union rep) I was able to get redeployed into a different role at work last year, although it was touch and go at one point. I think what worked in my favour was the fact that in late 2020, I went back to work after a few months off sick, despite the fact I still had to use crutches at the time.
It could have been very easy for me to say “sod it”, stayed off on long term sick, then end up dismissed on capability grounds (my role at the time was postman on delivery, now I’m working in caller’s office). But that would have put me into major financial difficulty with regards to mortgage payments etc.
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Hi, being diagnosed with an incurable, chronic condition does take some dealing with I know.
You are so young to have this happen and I do feel I was “luckier” in that I was 45, had had my family and was able to play with my first grandchild, before the MonSter got me!
I’ve now had severe PPMS for 24 years. I am dependent on hubby and carers for so many things. My life is not my own.
That last sentence means so much more now, as last year I was in a bad state…felt life wasn’t worth living anymore and was at my wits end.
Then suddenly, out of the blue, I was visited by Jesus. He saved me with his compassion and kindness. Yes, he really saved me.
I hope you find your way AH.
Boudsx
None of us knows what MS has in store for us. I was lucky that I was not diagnosed until I was 62 (and probably not had it more than a few years before). I knew two people on my estate with the same Forename and a similar age who had worked with me who had died from a brain tumour and non smoker lung cancer. So MS did not seem so bad! Also had known someone who had had it for over 20 years (so before all the DMTs). Also had access to an exercise group where I met more people living happy lives including those approaching their 80s. Again the class contained others with other conditions where the prognosis is quite grim.
What I have learnt is to concentrate on what I can do not grieve for what I can’t. Keep as active and socially connected as possible. I do not think a cure is just around the corner, so we just need to get on with it as people have been doing for years.
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