Patients Multiple sclerosis
Your victory of the day!
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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?
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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!!
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 :)
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??
I went scuba diving and loved it!!
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.
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.
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
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!
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
Just arrived back from 5 days in Transylvania (Romania)!!!!!!!!!!! My husband and I "adopted" a Romanian Dr (she'd been in the UK for 4 yrs and we discovered she had never been invited to anyone's home for a meal, so needless to say.........we did and I instantly "adopted/added her to our family"!!!!!! We went up to Pontefract a few weeks ago, where we attended her and her husband's "civil" wedding ceremony (where we first met her parents, best friend from Romania (also now living in the UK and married a male Nurse) and her brother and sister-in-law and although so, so beautiful and special, the "traditional", Romanian church wedding which lasted 17 hrs (!) was something else!!!!!!!!!! Her and her fiancée/husband needed 2 "Godparents" for this and I suppose you don't need 3 guesses re: who they were! Over "there" the bride and grooms' Godparents are more important than their actual parents so we needed to be present from start to finish Although the day was a "marathon", including a fair bit of dancing, it was sheer magic and we wouldn't have missed it for the world! How on earth we managed to do this must have been due to adrenaline and necessity!!! Although I have SPMS, surprisingly there were only 2 problematic MS moments. Luckily the 1st one, which occurred perhaps on our 2nd night there, happened a few minutes after going to bed - when my whole left leg went into horrific spasm (pain score was 10 out of 10 - excruciating!) but "resolved" after about 5-10 minutes. The only other MS incident happened at the airport (Debrecen in Hungary) on the way home, when both my arms and my right leg started to spasm (pain score approx. 8.5 our of 10), about 30 minutes before we boarded the plane. Unfortunately when the pain becomes this severe, I can't "hide" it..........have to keep changing "position" ("posturing"), rub, hold, squeeze whichever part of me is hurting the most and can't help but grimace, sometimes have to shut my eyes (because of the pain) and it can also affects my vision (one of the muscles in my left eye is paralysed, due to the MS and often causes double vision/causes my vision to become a little "strange". Of course, depending on which muscles have become spastic, my walking also becomes problematic i.e. sometimes limping, staggering, suffer muscle fatigue/weakness and either "invisible" (I can feel it but don't think others can) +/or a few visible myoclonic (muscle) jerks/tics! I didn't have anything to drink with me so had to wait until the drinks service on the plane......when I had 3mg diazepam, 500mg naproxen and quickly "gulped" 1 whiskey and coke. That certainly did the trick, especially after only having about 4 1/2 hrs sleep......soundly slept until 5 minutes before touching down in Luton, pain and symptom free! Usually my MS adversely affects me, to some degree, on a daily basis but this recent experience has graphically demonstrated its' unpredictability and any "bout" of "respite" gives me so much hope!
Yes, Christy T, I really do think the exercises I perform in the Neuromuscular Centre "Fitness Room" and using the "Listening Program/Magnetic bed (?), even only once a week, has brought benefits. It appears I now have a better sense of direction (i.e. travelling places/recognising where I am, which is something I'm not sure I ever possessed or at least not for many, many years)!!!!!! Although I still experience a fair degree of cognitive loss, confusion, "brain fog" etc., managed to pick up a little bit of the Romanian language (although struggle with many of the pronunciations) and although found this so, so frustrating, our new Romanian family, friends etc. commented they were quite impressed with my attempts at using it and understanding it but again I think this demonstrates the difference between myself knowing/remembering how much more adept I used to be, compared to now!
Anyway guys, jet lag and fatigue has now set in (also had a 3 hr drive back up the M1/M6) so off to bed!!!!!!! Keep "hanging in there" - have faith in us all!!!!!!!!!!!!!!!
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