Patients Multiple sclerosis
Topic of the discussion
Posted on 13/05/2015 16:59
Hello everyone, I am new to the site and I've found it really interesting and useful. I wanted to start a new discussion, hope to do it right.
Every day is different in the company of this disease, sometimes we have "small wins" over 'her', by actions that seem quite common in healthy people, but for us are "almost miracles" ... Outings, leisure, sport, return to work, docs' appointment...
I do not know if this is the right place for it , but I propose that this discussion turns into a place where we can talk about our "small victories of the day", where we come and can express freely what sometimes others don't get or see as a great achievemet...
What do you think?
Beginning of the discussion - 17/05/2015Your victory of the day! https://www.carenity.co.uk/forum/multiple-sclerosis/living-with-multiple-sclerosis/your-victory-of-the-day-346
Posted on 17/05/2015 10:37
Great idea. You are right in that it is the small victories that can make us feel great but we worry other people will find it daft.
Well today I managed to go from sitting on my bed to standing without using my hands/arms to assist me!!
Posted on 20/05/2015 17:31
That is great Statto! Love to see a response and that is a hughe step I think. My victory today was to accept help from my neighbour to do the groceries, I am very proud and I don't like to accept that I have limitations now and also depending the day, but today I felt really bad so I asked her for help without feeling ashamed :)
Posted on 21/05/2015 09:51
Hi, I'm also new to the site. I was diagnosed nearly 19 years ago and spent most of that time feeling ok. Not so much now, although I'm mobile. My victory really needs to be feeling guilt free about this 'invisible' illness making me need to sit down. I feel so lazy around my active healthy husband. Anybody understand this??
Posted on 21/05/2015 10:43
I went scuba diving and loved it!!
Posted on 21/05/2015 10:48
Msjenks. That's one of the hardest things. It can feel like giving in to it and I used to fight it like crazy. However if you learn to rest before you get over-tired you'll find you can do more over the course of the day. A daily power nap is also a good idea. Forgive yourself (not that there is anything really to forgive) and just do your best, which should always be enough. My wife is very active so I understand where you are coming from and it is a hard one.
Posted on 21/05/2015 11:58
Thankyou Statto, I didn't tear up there at all I've never joined a site before, never felt the need to and I'm pissed that I feel I need to!! Sometimes you just need people who know, who understand the bewilderment at losing your get up and go and the fact that some days you just want to cry about it. Then the next day, it's all good. Today though, not a good day. Today I needed to nap after I got up!!! Hey-ho, I've got my granddaughters later so back to my resting. Thankyou again. p.s. I'd go scuba diving but being underwater freaks me out, lol.
Posted on 25/05/2015 15:32
Hello @Statto I am glad to hear you went scuba diving I've always wanted to but I am a bit scared of not having enough oxygen or honestly sea in general hahaha.
@msjenks I know where you are coming from too!!! Don't feel bad about anything, it is not our fault, we didn't choose to have this disease but we can make our best out of it. I recently read the story of Ann @Yank34 and it helped me a lot to think about the fact that we have to accept ourselves as we are now without wanting to be the person we used to before all this. I thought about it all weekend and I feel that I have a new resolution to love me as I am right now!
My vicotry today was to take a walk even though I didn't feel like because I had minus 3 spoons
Posted on 26/05/2015 14:44
I absolutely love and applaud you starting a new discussion, "Your victory of the day"!!!!! I couldn't agree with you more that hopefully we all have at least 1 victory everyday even it is only because we are still "carrying on" and doing our level best to manage our MS! I salute your courage and so glad you have become part of our community - a very welcome addition. My victory today was making myself attend a Neuromuscular Centre (a journey that often takes over an hour's driving - my husband drives me, bless him) and managed about 30 minutes in the "Fitness Room" before I had a go on the "rowing machine" and after about 2-3 minutes, lost my grip on the handle, causing it to "crash" rather violently and noisily back to its' "starting position"! As "my" Physiotherapist promptly released my feet from the machine, interpreted this as she thought I'd done enough!!!!! I also share your feelings re: anything connected with the sea........love pools, spas, jacuzzis etc (all heated of course!) but avoid any body of water that may/will have "things" in it, like fish!
Posted on 29/05/2015 12:02
Hello @Yank34 lovely to hear from you! I am glad of being here also! I aplaud your dedication and courage in attending the Neuromuscular Centre. Is it helping?
Me my victory of the day was to wake up early and cook breakfast for my mother in law that is visiting us and she leaves today, she always is so nice to me so I thought it would be nice if I did something for her even though I am extremely tired today.
Nice weekend to all