Like a Bad Penny

Well Hello again, Forum Members. I last wrote a message here several years ago…please dont ask me how long ago: I have MS with Brain Fog, and cant remember!

I feel I should apologise for my lengthy absence; I have absolutely no excuse, Im afraid, I think I found myself pretty busy, and sort of got out of the habit.Now Im spending quite a lot of time on bed rest, so have more time, and want to communicate whilst my brain is working, which might not always be happening.

When I was first diagnosed just over 4 years ago, it was established I had Primary Progressive MS. Progressive it certainly is, but maybe Secondary. I had completely forgotten about a time 20+ years ago, whilst still in my 40s, that I had some months when I was constantly falling over, often on pavements, leading to some badly grazed knees. I accused myself of not looking where I was going, uneven pavements, downright clumsiness, or even some problem with my shoes. I even fell when rushing up the stairs, although I cant even remember now what “rushing” actually feels like. I also had phases of feeling that my body and brain were separated, and also a strange sensation of my arms suddenly getting far too heavy for me to bear, so I had to lie on the floor for a while to take the weight off them. Very dignified in public…NOT! So I`m now querying if this might be Secondary Progressive, not that it makes much difference - it is what it is!

Now Im at a stage of spending every other day in bed due to fatigue. I can furniture walk a bit, use a trolley a bit, or use my power chair to take lumps out of furniture and door frames. Outside its a wall and a stick: 2 sticks dont work because my hands and legs are too trembly. One of the worst symptoms is the Brain Fog, which makes me feel dizzy and as if my feet arent on the ground, Ideas come and go before I can catch hold of them, certainly long before I can act on them. Apparently Im constantly repeating myself, several times in a 15 minute conversation, and often plan to do something, only to find Ive forgotten what it was in the 20 seconds it`s taken me to change position.

I do hope someone out there remembers me from before, and also that there are others who are wondering who this mad woman is. I look forward to being more disciplined about making contact than last time, and to making new friends and to getting back in touch with others who sort of remember me from before.

Thank you for taking the time to read this far.

Love, Faith WB

Hello Faith and welcome back. :slight_smile:

I’m a new comer here by some standards. Dxd ppms almost two years ago and already spending too much time on here. Sometimes I’m reading great info, sometimes I’m answering somebody’s queries if I can, sometimes I just shake my head and stay quiet, but I always call a spade a spade. For better of for worse!

I had a look at your profile and found your last post. It might jog somebody’s memory. https://community.mssociety.org.uk/forum/primary-progressive-ms/not-ms-all

Talking of Brain Fog…there is a dedicated thread on here for that. It is totally, nutty, crazy, bizarre and funny. Read it at your peril! :slight_smile:

hi faith

i feel that i should remember you from when you last came on here.

but my brain is mashed so forgive that.

i changed my user name from carole58, so that doesn’t help.

anyway it’s lovely to meet you.

do look at the brain fog post (or brian frog)

carole x

Hello! Now I DO remember you, cos we were buddies and did pm each other sometimes.

Glad to see you back again.

I`m still lurking…but recently had yet another diagnosis very nearly squashed through lack of proof on testing!

You probably recall I was wrongly dx`d with PPMS a few years back too!

It`s all fun innit?

I have decided to stop looking for the reason why I cant walk!

I`m taking no more tests…not even a spelling test!

pollsx

ps you`re just in time to help with the invasion plans on the Isle of Wight.

Brian Fogg has hit us all hard, but we`re still as bonkers as ever.

If you`ve got 4 weeks, 3 days, 6 hours and 12 and a half minutes, you could read all of ADs brain fog thread.

It`s got us all gripped.

Socks feature heavily!