Hi all, I’ve been away from the site for a few years but I’m having such a crap time at the moment I thought I’d rejoin as no-one understands what it’s like to have MS unless you suffer from it. Currently experiencing leg malfunctions- they have a life of their own and want to go off in different directions, which makes my normal staggering gait even worse lol, along with some dodgy eye issues.
I’ve not been able to stand up for more than about 20-30 minutes as the pins and needles in my spine get really bad, but recently it’s about 10 minutes. I’m Still getting to work ( I hold down a full time position) but thinking I might have to take some time off but my work ethic tells me if I can get out of bed I can go to work. Anyway, I don’t really have a topic as such, I just wanted a wee moan cos I’m fed up pretending to the world that I’m ok.
Sorry that life is so difficult. I think it might be a good moment for you to change tack a little, becoming your own best friend rather than your own overseer. By which I mean, talking to yourself as you would talk to someone whom you loved and whose quality of life you valued. That sounds a bit obscure, but somehow I feel that you will know what I mean.
Nothing wrong with a wee moan, by the way, or even a monumental one.
Thank you, no I don’t have to stand in my job, I sit most of the day, but just standing up now for any length of time is getting really bad. I think it’s time to go back to the neuro…haven’t seen one in years, and get some different meds.
I’m on a repeat prescription for pregabalin from my Dr for the burning in my hands and feet but that is all I get.
Thank you Alison, I fully appreciate what you are saying. I’m really good at dishing out advice but don’t take my own lol. I head up a small procurement team and I know that if I’m not there , then they are under a lot of pressure. My work is really good to me and have bought me a lap top so that I can work from home and still contribute to the buying effort. Time to sit back and take stock I think… but I know not working would make me worse. My daily routine really keeps me going mentally and physically.
It is indeed Sue. Painting on the smile and pretending you are ok is really challenging sometimes. Unfortunately my husband (who is lovely ) thinks that it can all be made better by having a sleep!
Flip I can totally relate. Pretending I’m fine when I feel bloody awful . Mostly off balance dizzy kind off sensation… really scary and horrible and nobody gets it unless they have ms!
Im the same as you about work. Struggle to phone in sick to work …really hope you feel bit better soon… you can’t beat a wee moan mind you. It’s hard to keep the chin up all the time !
I love that people on here totally get how each other feels. The pretence is draining and sometimes you just want to lie down and give in. I’m currently suffering with man flu too which has totally wiped me out, so I’m staying in my bed and stuff everything lol.
