Went to West End live with a friend, didnt think weather would be that great so did not take sunglasses or put suncream on, but wore light clothing. sun comes out - i suffer, sun goes in - relief. ect… after half an hour standing my legs have seized up, give it a bit longer legs n feet hurting, go to lunch, hot restaurant, start off well on food then something goes wrong inside and before i know it im trying to swallow something thats either not chewed cos i was chewing and not a lot happening, or it didnt wanna go down, was not feeling great already, wave of dizziness hits, hurridly take drink and it passes but then scared to carry on. manage some more but do not finish meal as do not feel safe. by end of day left leg dragging behind, hobbling along when i try to go faster (crossing roads in london!), my legs wobble, n to top it off my face is a beetroot, guess its sunburn tho it doesnt hurt is just hot, do hope its not heat exhaustion
Oh Jules, that really does sound awful. It sounds very frightening!!! I have no words of comfort that I can offer other than…I’m sure you are a wonderful person with many qualities, try not to let this disease define you. I think you’re amazing in that you kept trying at every hurdle!!! Big hugs my sweet and rest up if you can. Mandymoo xx
Hi Jules that quite a day. you had yesterday. I hope you have a better day today, and as mandy said try and rest up bit. Golly gosh your brave I chicken out walking round the supermarket, or shopping because of symptoms, I think you just shamed me into trying to do more. I hope today goes better than yesterday so take care and lovely day. F.
How are you feeling today? Much better I hope. Think we are all guilty of doing far too much! Xx
I was only really frightened in the restaurant, the rest just got me angry. i try to act normal cos i hate the thought of not being able to do stuff like that. it was my first trip to West End live and I don’t plan on it being my only one! if we had got there earlier we could have sat on the steps in trafalgar square but the sun would still have been there.im not brave at all, brekkie today was a real struggle cos i can tell that fear makes it worse and its so hard to stop being scared. thanks Mandy, im not even dx’d, so can’t blame MS yet! i think i was afraid of something happening, which only made things worse. im going on hols on my own in august, ahahaha… trying not to cancel it thru fear! i suppose the thing is that the scariest moment passed and it could have been worse, and there was no embarassment, tho i did have real trouble getting up from the underground seat, now that would have been a major embarrasment if my friend hadnt realised and we got seperated cos i couldn’t move…they are suprisingly comfy seats! today im taking it slow and hoping for the best!
Well I did it, I went to the supermarket and got afew things, without seizing up totally, falling over or knocking down displays. I do get a few Looks cus of my funny walk. They.must think and tiddley or something. So Jules relax put your feet up and enjoy yor rest. F.xx
Well done you! claps
Thanks Jules, the applause got me giggling. its a pity you cant bottle it I’m dreading the back garden its like a jungle, looks like i have to make.do with a cuppa. nice to.see you back on form. Not too much clappin tho, incase your hands drop off they take ages to grow back! F.xx