Hi everyone-I hope you are all having a good day
I just wondered how you all deal with the waiting for tests/diagnosis?

I had decided to just forget about everything while I wait the 2-3 months for my first muscle/nerve tests and try to just enjoy each day...and for 2 weeks have been doing really well, but now I'm simply fed-up! Hopefully it's just a bad couple if days (or hormonal!) but I really struggle to deal with not knowing what (if anything!) is wrong with me!!

My life has reduced to just making it through work and taking care of my children and house. My exercise regime is almost none existent apart from the odd walk (I used to run and work out 3 times a week at least and walk at weekends) my social life is zero as I don't really want to go out and meet new people with my facial and eye droop! I have good friends who come to see me but I feel like I can't plan anything with them or look forward to anything as I just don't know how I'll be feeling and don't even know if I can have the peace if mind of an actual diagnosis to explain/justify it!!
To make matters worse my biggest fear is being told (again!) that there is nothing wrong with me, so much so that the relief my good days and periods bring me is short lived as I fear I will never get to the bottom of it if my symptoms improve too much - how bad is that?! I feel so awful thinking like that!!

I have so much to be grateful for and remind myself how lucky I am to see and hold my children, to walk with them and play a little when I can and that I have good friends and family who are as understanding as they can be....but I just feel like I'm on a merry-go-round of feeling better and feeling worse but never actually getting anywhere...my inner control freak is very frustrated! Haha!
As I have said before - I think you are all amazing and i would really appreciate any tips you have!

Thank you all.x

Ps-I have phoned my consultant's secretary to politely enquire about my appointment, she was very nice and apologised that as I am an out-of-area patient I am yet to be registered on the system and the clinics are very booked up....so it doesn't look like there is much chance of the waiting list being shorter than expected!