Two steps forward and three back syndrome!

How do you cope with the disappointment and total fear of progress one day and back to square one the next. Over the past yeah I have made progress in what I can now do yet can never congratulate myself because the next minute am back to square one. I went shopping today with my sister walking round the shops wearing small heels without my stick and felt on top of the world. My sister almost cried when she saw me looking all normal Angela again. Then got back ale wham. Felt tired so lay down well sat up as I do. Still can’t lie down. Went so so dizzy. Room spinning fainting fit. Got up after a while couldn’t put myself through it anymore. Now am left feeling just awful. Very low. Very disappointed and scared to go to bed as usual. Why can’t to good feelings last? So sick of this up and down. So scared of going back two years house bound and helpless. Angela

It’s hard, and I would be lying if I said I was anywhere near learning how to cope well on a regular basis. I go through phases of being mentally resilient (or in denial? Who knows…) and then crashing for awhile. I have found cognitive behavioral therapy to be useful in learning to handle my emotions towards this, but it’s definitely a process. It’s so easy to lose hope sometimes. I also wonder if part of why some of us go through a pattern like this is that as soon as we are feeling a bit better, it’s tempting to push ourselves too hard and then cause a relapse. I know that’s true in my case. I’m so sorry you are feeling this way, it’s a crappy way to live. Hang in there.

Agree with DFL. It’s really hard and the fact that it’s unstable makes it even more hard to adapt and accept because when something changes you can have hope one minute and then it’s dashed the next. I think that is human nature and it is very hard to overcome those feelings of despair when things are bad. Are you ready for Topamax next week Angela. I am hoping to have it by Tuesday! x

Yes Jem I reckon I am ready. Have nothing to lose at all. I am so bad today. Last night was as I thought - horrendous. Was spinning all night long the slightest movement of my head made it all worse. Am thinking of taking an imigran tablet. The hospital told me to test the migraine theory to see if it helped with the dizzinesss. Feeling really desperate as I sit here and wondering if I should or not. Already taken cyclizine for the sickness and no doubt with need stemitil at bedtime. Not sure if I should take this combination but then I don’t really care at the moment, just want to feel well.

I would argue that you did what we are all guilty of doing, too much too soon. You felt well, so you WENT for it - no stick, bright lights, shopping in busy shops… this overwhelmed your senses and you feel worse today. It’s what i’ve done this weekend too - over did it yesterday 4 hours out of the house in shops, walking, drinkng milkshake - today feel like crap!

The physio says we have to take it very slowly. If you feel better - do something nice then go home and rest, little by little

Thing is though if I had done this a different day I may have been ok after. Its the unpredictability of it all that really gets me down. We can’t plan anything can we? Have to just ‘wait and see’ all the times. Oh I am on a downer today :frowning: