Hi everyone. Has anyone found that you have to be committed to get on with this disease as it is so time consuming? I feel I know I should be committed to doing my stretches every day (twice a day). But at the moment I can only manage moving a few feet and only with a trolley (indoors) wheelchair (outisde) and two sticks and a rollator. Haven’t got the motivation to try and commit to trying. I’m not convinced that doing physio on my own will help (even though I know it really may help). Just feeling negative at the moment and even after fifteen years I just want to be “normal”. I took movement for granted when I had it and now I haven’t I’ve hit a wall. Can’t seem to feel any future. Sorry for moaning but it’s all getting a bit much! Linda x
Doesn’t pretty much everyone take pretty much everything for granted? The sighs of the old as they watch the young hold their youthful, healthy vigour so cheap are an old, old story. And knowing that their youthful selves once took these things every bit as much for granted only adds to the pathos!
That’s just being human. Please don’t beat yourself up for being human.
There’s someone on here, and I think it’s Dan, who recalls someone’s wise words to him…something along the lines of, ‘Everything is going to be OK, but you might need to redefine ‘OK’.’ (Apologies to Dan if I have mangled that totally.) But the gist of it really resonates with me. With a condition like MS, a person has to redefine ‘OK’ the whole darned time, and that is always effortful and sometimes a hard task to face, particularly when we feel weary or discouraged. But it is the only show in town, alas, and I am sure that you have times you can look back on and see that you found a way of keeping on keeping on, and that life became brighter and more enjoyable once more. I hope that you feel stronger soon and that the sun shines a little more brightly in your life.
Alison
So far, I haven’t found my MS to be particularly time consuming but I agree with you about commitment. I’ve been off work this week with a cold and my exercises haven’t happened due to a combination of my daily routine being disrupted and not feeling well.
I’ll be back at work on Monday so the exercise routine will restart properly. And it is worth it - I could see a difference within a couple of months of starting my exercises and I was actually recovering a little bit of lost ground. I was prepared to settle for holding my own - anything more was/is a bonus.
hi linda
i love alisons reply! i am committed to living! and yes thats changed dramatically in recent years but i believe its still worth the effort-any effort that i can manage. blossom asked me a question in another thread-pigpens where is every one i think…by answering her question i hope you will ‘get something’ positive from my reply.
we are in this for the long haul-no quick fixes…
take care, ellie x
Hi Linda im new to it all and guilty of taking things for grantedi hope things look brighter for you soon there are some cracking folk on here that can help when your feeling down some of which have replied anyhoos just wanted to say i hope things improve
respect sheep
oh yes, i have definitely noticed how much i once took for granted.
legs that can be relied upon
bladder ditto
however i have a fab new hairstyle and its now burgundy with bright pink streaks and short at back and sides, long on top.
haircuts are important because when my spazzy legs make me feel really old, i catch sight of myself and think “who is that woman with the funky hair?”
carole x
Hi everyone. Thanks for your replies. I know I do have to redefine my thought process. Carole I bet your hair looks really good, keep it up - I know something as simple as that will add to the upside of your mood. I suppose I have to rethink my whole existence, but it’s not going to be easy. There are so many of your on here with such a positive attitude. My MS nurse told me at one of our meeting updates that I now have to embrace this condition and work with it (still feel that is never going to happen). You would think after 15 years I should at least be getting used to this! Going to try and start today with a new outlook on the whole thing. I’ll let you know how it’s going. Thank you. Linda x
hi Linda.when i had a massive relaspe,that left me bedbound for months, i lost all hope of even being able to get up again,then i decided to make a list each day of things i had managed to do that day,like getting up to go to the bathroom,and then making a coffee,having a shower and so on,it helped me get a bit of focus back,and by looking at the list i could see, that i was actually doing more then i thought i was,try it, it might just help you.keep trying to do the stretching excercises,and you will get back in to the rythem of them,i loose my focus a lot.
but just now i am really pleasedwith myself,as i joined slimming world online and have lost 9lbs,i am not very mobile at all,so pleased that i am loosing the weight,as its not easy.when you spend a lot of your day in bed.
J x
I think one of the worst things about MS/fatigue is that it robs you of desire. Everything is so much trouble and hard work that it’s easier not to bother. I acknowledge that I am a basically lazy person but to sit hungry when the kitchen is just a few feet away is beyond normal indolence. I know that physio excersizes would help but I am not at all motivated to try. I have found the elephant burger technique keeps me from sinking into that smelly old woman with 15 cats! Basically you accept that a whole elephant is difficult to eat in one sitting so you make It into elephant burgers. Break down whatever it is that needs doing into the smallest constituent parts ( making the list is part one) and do it one very small task at a time. The sense of accomplishment is great and eventually the job gets done because the task ahead is so slight that you are not put off doing it. It works best with jobs that you really don’t want to do and have shelved until they have become an elephant sized problem.
Jane
I find the relapses can be very demoralising. I went from being quite active for 8 weeks and back to having to pace myself every day. I keep reminding myself that one day this will ease off and I won’t feel as bad, even when I’m having a very difficult day. I try to remind myself to have little goals but not to overdo anything. I find that if I do a task and it raises my hear beat, I can’t do if for long as I overheat. So I find that in relapse I have to figure out what my limits are and work within them. It really is all about knowing your body. Xxxx