by jakerleen 10th April 2012
It feels like it's been the longest month I've had in years, and yet it also has gone so fast with everything that's happened.
Firstly we had all the fun and games with Dom's EDS problems. This had ended in him needing bone density scans for osteoporosis etc. Supposed to be a 2 week wait only for the appt and still nothing after nearly 3 weeks ......
Cass is doing well though, today she's gone out with her psychologist on the bus. This is a huge thing for her because she hates them so much, she hasn't been on one for nearly 2 years now so for her to do this is pretty amazing. Darren (psych) is going to keep her on them for a few hours taking her from place to place to see how she manages.
Dave's psychiatrist left last week, after 12 years of seeing him it was such an emotional thing to happen. I cried as much as Dave. He has been the biggest help to us and always let me ring if I needed anything and he was the one who diagnosed Dave with bipolar. It was like a friend leaving, even Doc H was upset, he kept hugging Dave. Obviously this has left Dave reeling and worrying about whether anyone else can do the job. He is seeing another psych that he knows, but everyone who looks after a bipolar sufferer knows what it's like. It's constant 24/7 questions about whether things are going to be ok, will his meds change, will he like him. His moods are up and down and he isn't sleeping well. He's getting angry with everyone and shouting a lot over the tiniest things, can't focus and nothing is going in. Cass and Dom are trying as hard as they can to keep up with things, but it's wearing me out so it has to be tiring them as well. I worry because Dom mythers about Dave and he is in the middle of GCSE's that he is having to take early because of being in the top sets.
I'm just exhausted, no other word for how I'm feeling .... apart from the fact I'm pretty sure I have osteoarthritis pretty badly in my right foot and I'm avoiding doing much about it because I just don't seem to be able to find the time or energy to go to the docs.
A few weeks ago we had a review from the "benefit integrity centre" (those words are enough to make you question what they think of you). Filled it in and sent it back. then they told me they have made a mistake and I shouldn't have been getting severe disability allowance since Cass was 18, and they might want all that money back. So I'm £56 a week down now, but I will refuse to pay it back as it's their fault not mine, I didn't know I couldn't have it and I notified them of her being 18 when she hit that age.
This morning we got the "you're being moved from incapacity to ESA" letter. So I rang them as requested and they told me Dave will probably need a medical. I can't bring myself to tell him, he is already in a state over his doc. He is on lithium, carbamazepine and chlorpromazine and still his moods bounce like a tennis ball. I'm afraid of this news pushing him towards the edge and although I hope they see sense and listen to his GP who's told me Dave will never work again because he is so fragile, I don't think they will. I've heard so many stories aobut how people with mental illness are treated on ESA that it's worrying the life out of me.
Any advice or knowledge on this would be extremely welcome xx