I have been SPMS for about 5 years now, but able to get around slowly on 2 crutches, recently I have been having problems where all my strength seems to go from my legs at various times & I sinkto the floor whilst struggling to stay up. I thenhave to crawl to a chair to try & pull myself up, sometimes even that fails & I end up sittng on the floor waiting for some strength to return to arms & legs. My poor long suffering but wonderful wife tries to help, but tryingto lift 13.5st of strengthless weight is well beyond her.
Just wanted to release my feelings on here… I did loose it emotionally the other week when they were talking about MND on This Morning, as I lost a school friend a few years ago to MND & it made me grateful to only have MS which made me guilty for feeling that way.
Hi Innel, I can sympathise with you it’s crap isn’t it? I too have been SPMS for 6years and mobility is getting worse and weakening legs. I have gone to the ground lots of times and have no strength to pull myself up and just sit there and cry for a bit then pull myself together. I don’t know if you have stairs but I sometimes pull myself over to the bottom one, get my bum on it then hang on to the bannister and pull myself up. I am finding it really bad just now as we are getting our house ready for selling and have got so much jobs to do. I am finding it so frustrating just doing little bits at a time but hey ho what can we do. I bet it made you feel a bit better getting it off your chest. I do!!! I have just bought myself some weights to at least try to get some upper body strength. I hope it works. Take care Magsxx
Hi Innel, i’ve also had SPMS for 4 years and exactly the same is happening to me. Seriously having to consider a wheelchair for outside use (new hurdle to overcome). Can anyone tell us if this gets any better or is this it? Got so bad now all I want to do is scream, swear, cry and give up. Linda x
Hi innel, Can totally relate to feelings of frustration and losing it. Sometimes losing it is a good thing lets some of the frustration out. Hope you feel better soon and get a break. Regards Ann
Innel,know just how you feel i am spms and having just the same,its awful it really is,some days are better than others,and on the better days i ALWAYS over do it, and have to spend days in bed recovering,i still think i can do things, trouble is i cant…take the other day we went to a garden centre and thought to my self,we wont be long…so i wont use the scooter,we werent long at all,but boy did i know about making myself walk…its taken me 2 days of bed rest to get any strength back…then today swept a bit of dirt up…and bang…back to bed for another few days…i just never ever learn…MND is truly awful though so we have to count ourselves lucky we dont have that,like your poor friend…
I feel just like that, legs really weak get lower as I stand on spot, but no one has said I’m spms? Gp said all forms of ms is progressive we just need to slow it down?? Was with nurologist today, more steroids to try to get me through daughter wedding Friday. (Life’s a bitch) keep going best you can, good luck.
Thanks. Iv been dx 2years August. Though I had optic nuritice 2years earlier so it seems to be 2year cycles, soon as the wedding over I will get back to the gym and try to build my muscles back up, just got to make a serious effort, and realise I might feel worse for a couple of weeks.
