had the vomiting bug last weekend... made me flare loads. I cant get around the house without my stick and anything outside requires the wheelchair.
unfortunately its not only made me flare its made my 9 yr old daughter flare. iv always worried tbh, as when walking shes always complained of pains in her legs we were under the muscle and bone unit at alder hey for yrs but they couldnt work out what it was. she has constant mouth ulcers (but then so do many of my cousins and relatives and even my brother) but this week actually had the genital ulcerations. my two sons also had the vomiting bug but the eldest is fine, my youngest is ill with something else as we speak- its endless. took my daughter to the gp thurs night and he conf both the mouth ulcers and genital ulcers, im gutted that she is going to have this life. we went for blood tests at alder hey on friday have to go back to see the gp on tues and see what he has to say. but i kind of know in my gut that she has it. im just devastated yet hopeful that by catching her so young she wont have to flare as bad as me. she went to town today with my aunty and was treated to a lovely build the bear, and the biggest knickerblockerglory you could imagine for a child, she came back beaming bless her.
i just feel so deflated. id rather go through it endlessly to avoid my kids having to. iv gone from being an active massage therapist/teacher, teaching yoga and zumba to being in and out of a wheelchair practically over night, i dont want that for tyler. iv had to quit my business, im having to consider deferring my uni degree as i just cant cope. I dont want this for my daughter.
im feeling like iv gone full circle, october was prob my most mobile month since june and this weeks im back struggling every step. its anightmare! that doesnt seem to have any end. even my toe joints and knuckles are hurting.
im down to 10mg a day of pred. they wont increase it as they need to relieve the pressure on my liver before i can start anything like azathioprine or infliximab. i go back on the 27th but i just know they are going to fob me off again. im sick of feeling like this cripple and putting so much pressure on my mum, i cant even see to my own kids properly when they are sick. its so deflating. its causing problems in my relationship. its endless.
feeling really down.,
and not wanting to gross you out but my memory is awful and i couldnt remember if i had taken a ladies thing out last night so had to check and found a pea sized lump on my cervix, it was quite hard to touch. i dont know whether its behcets related or not.... or if it could be something else... it just seems endless. i mean it could always be an ulcer i guess.
anyway my rant over
i know everyone else is feeling really low- the weather doesnt help does it.
My joints are killing me. went the pics last night with a friend though and my stick and it felt nice to actually socialise despite the pain.
trying to keep my spirits up. im usually so upbeat and motivating lol. im sure il feel better in the morning. not sleeping very well due to the pain atm so thats not helping.