I haven’t posted for a while, apart from replying to a few threads, but could really use some support at the moment.
I’m still waiting for a diagnosis, my GP tells me they are still going on the ‘working diagnosis of ms’ but because of this cyst on my brain, (the latest on this is ‘it appears benign’) its been a bit more complicated, and long winded, especialy as the specialist dealing with this particular aspect works in the next county, and communication between the various parties involved in my care is precarious to say the least. I get an occassional letter from my original neuro, two or three lines saying he’ll write to me again after such and such, which he does, saying the same! I haven’t seen him since December. I’m glad they’re being thorough/cautious, but I could do with some explanations/reasurance, anything!
Anyway, I’m feeling really crap at the moment. I seem to have had one thing after the other to deal with, I’m on my third dose of antibiotics for a uti that won’t shift, had repeated, agonising back/rib spasms, burning/cold/weak legs, virtigo, internal buzzin, face/jaw/gum pain, blurry, washed out vision, dreadfull fatigue, and my left hand keeps locking up. I’v lost my appetite - unheard of - and my throat keep twitching/clicking. I’ve got up opthalmolgy and VEP appointments coming up.
The problem is, I’m trying to deal with this so as to create as little impact on my nearest and dearest, my two teenage kids, my lovely hubbie, my elderly mum etc. Kids and mum don’t know what’s suspected, but they are becoming increasingly concerned and suspicious, and I’m feeling bad that I can’t do much for them as I’d like, as I used to do. I tell them its migraine, menopause, bad back etc, but hate lying, but really don’t want them to know much more. Mums not well, and needs support, and I feel I’m letting her down. My husband is wonderfull, but still not back to 100% after his heart attack last year, and I see him getting so tired working 12/13 hour days and can’t ‘share’ it all with him. He’s no idea just how bad I feel, or how frightened. We do talk, I just don’t tell him everything. I don’t want to cause him more stress. I’m no good at asking for help, and not a natural ‘sharer’.
I’m really struggling at the moment, and can feel depression creeping in. I don’t know how to cope, my GP is good, but is limited to what he can/will prescribe as ‘he still doesn’t know what he’s dealing with’. I can’t take ssri’s as had a severe reaction, and have develpoed a strange intolerance to opiate painkillers. I not keen on amytriptalene as it didn’t agree with me years ago, and at the moment, that’s all he can offer, apart from low dose co-codamol, and naproxen. I’m in pain, knackered, tearfull, and feeling truly sorry for myself.
Sorry for the moan, I’m not expecting solutions, just wanted to ofload somewhere.