Hi everyone, Being in limbo but knowing ms is on the cards I find the most scary time of the day for me is going to bed at night. I’m always scared something is going to happen overnight and I’m going to wake up with loss of vision or the loss of something. When I wake up in the morning and all is ok it’s almost like a relief that I’m still ok but I’m just going round in circles because it starts all over again. It’s almost like I have another day to live a normal live when I wake and everything’s ok. Does anyone else feel the same? How do you cope with it? I use to love going to bed at night and just closing my eyes feeling safe and relaxed but now I hate it.
Hi I used to think the same. I’ve been given some great advice on here and been told some “home truths”. Listen, you’re not going to wake up and find you can’t walk. It just doesn’t happen. Live for the moment. You can’t change anything. If you feel “normal”, do normal things. Don’t beat yourself up. Keep smiling, however difficult it may be. Al
Hear hear Al
Tomorrow we may be run over by a bus. There may be a fire in the night. A plane may crash into the house. We might fall down the stairs and break our neck, leaving us paraplegic. Etc. Life is uncertain, but we cannot allow ourselves to worry about what might be for the simple reason that it might not be. Life is for living: make the most of the moment; deal with disaster when it comes, IF it comes.
Accepting uncertainty is arguably the hardest thing about MS. Don’t beat yourself up about worrying, but try to let it go. Whatever happens, you’ll deal with it. We all do.
Hi, being in limbo is enough to drive the most logical of minds to distraction.
I am sort of still there, after 15 years.
PPMS was a strong possibility for me, but had been discounted for sure now.
My scariest times are when I am alone. It doesnt happen often, but I still dont like it.
Perhaps something like a camamile tea before bed would help.
Hi I used to feel like that as well it was awful!..but believe me as time passes you think less and less about that happening and you eventually realise life is so uncertain wether you have ms or not none of us know wots round the corner!..so the longer you go feeling fine the less you’ll think about it!..it used to be the first thing on my mind when I woke and the last thing before I fell asleep and most of the time in between…I wouldn’t of believed anyone if they’d told me I wouldn’t give it more than a passing thought each day!..so believe me it does get better…I’m quite new to this too first symptoms April 2012 and fingers crossed I’ve been ok since…take care Emma x
Hi I was in limbo for 3.5 years. Hard to begin with, and going to bed hardest and I would wake early, lie there thinking all sorts. All I can say is that it does get easier with time, My attitude was to embrace the life I have and carry on. Onwards and upwards. Keep smiling Aimi xx
Hi App, Being in limbo is the absolute pits It was the ‘not knowing’ part of it which got me into a right ole blue funk. But it’s true what they say; things do get easier with time. There will come a time when your thoughts won’t be quite so focused on what may or may not happen. Most people get scared when something potentially life changing looms over them, but at the end of the day, as long as we’re worrying about what could happen, life is passing us by. As the others have said, live for the moment, enjoy life, and try to embrace your better days. Debbie xx