hello, i was wondering if anybody else has difficulty telling people you might have ms. i have a tentative dx and walk with crutches, so seeing anybody when im out i always get the question " what have you done". yesterday i tried to say i might have ms but the words would not leave my mouth! i am not ashamed im ill, but still trying to get my head round whats happening to me. so any tips, short of wearing a placard, would be helpful. lots of love lorraine x x x x x
I have seen others in the past say I’m having neurological investgations to find out whats wrong.
Pip
It’s up to you what you say in answer to have you hurt yourself a simple yes. What happened to you? Fell off a cliff! You are not accountable to anyone and if you want to keep it to yourself do. Personally, I just tell people, though I have enjoyed some of the stuck up mums at the school gate thinking I had a problem with alcohol! Chis
hi well chris you made me laugh, and i need more of that just now. i did once tell someone that when my husband jumped off the wardrobe i bounced of the bed and did some damage to my self!! i do have some really good friends who i value greatly and i know would be an enormous help, as i cant do much and rely on my hubby so much. i think telling them would be a benifit to myself and take some pressure off michael. as pip says i dont have to tell anyone but i dont wont to hide the truth from people who i have known a long time. i just really dont understand why my brain wont let me say those words. lots of love lorraine x x x x
I know it’s hard Lorraine, when you say it it’s out there and it becomes real. Take your time, but if you think your friends can help and you feel you’d like to tell them, do. I have had amazing support from some people that I never would have thought and the person that I considered a good friend no longer speaks to me. She, it turned out backed the alcohol theory! If you need to talk we are here, if want want to keep things private use the pm function. The thing is everyone on here has been through in my case, or is in exactly the same position. Good luck, Chis
Hi Lorraine
I undertsand how you feel - I suspected MS for a while and had symptoms for a year and a half and have seen 2 MS specialists and a general neuro to get to where I am which is possible MS but MRI and neuro assessment isn’t enough to confirm at the moment. Only time will tell.
In the mean time what to tell people? I’m lucky or unlucky in that looking at me there is little to see. I can walk, talk and function pretty normally on the surface as all my issues have been hug, spasms, sensory stuff and bladder problems which mean quiet afew more loo trips and pain. Nothing that anyone can see. However I have had to reduce my social life as overdoing it makes me worse and explaining I’m not feeling well when I look otherwise okay is difficult. My boss knows the truth and a select few close friends whom I trust and have been a great support. To the others I do as most the others do - make an excuse, I’ve injured my neck, I’m inundated with work so too busy etc etc.
It’s important to have people around you to support. Telling people does make it seem all the more real - I think thats why its so difficult but as you said you can tell who you choose to. What about your parents and family - are they aware and do you have their support?
Whatever you decide to do this forum is always here and full of others in a similar situation who’ll understand.
Good luck
Reemz
X
Hi Lorraine, yeh I know. I have this problem all the time.
But as I am in a wheelie and not using crutches, people tend to think I havent actually done anything. Depending on who is asking and what mood im in, I say Im still having testsorI have MS` or something else.
luv Pollx