Got lots to tie up 🙂

The review was okay, quite amusing really. Because my paediatrician and (paediatric) specialist are no longer involved with me after the review they finally agreed with everything I’d been trying to tell them for years and were suitably obliging! We’ve had our ups and downs over the years but it ended on a really good note. My specialist is even coming round for mince pies before Christmas…Must be my dynamic personality (ha!), my OT wanted to stay in touch too 😆

A couple of months ago I acquired a new social worker. I used to have one, but he moved to another town about 4 years ago and I never got a replacement. To be honest (which I can be, my blog!) I don’t like her. So I was much cheered to discover she’s retiring in February as long as her house sells (anyone want a nice place in Devon?)

My new Occupational Therapist (OT), who my former OT had spent the last year bringing with her so she could get to know me and the situation, got seconded! So after all that I’m having another new one, though I’m hoping I might get her back because she’s only been seconded for a year and my new OT coincidentally also retires in February! Though my paediatric OT is coming with my new new OT to introduce us (a week tomorrow) which is a nice bonus.

So now it’s just me, my GPs (it’s a husband/wife job share), a soon to be retiring social worker and a soon to be retiring OT! Plus my parents of course. All of which will leave us to our own devices unless we ask them for something.

 

I never knew one room could take so long to sort. It’s looked “nearly finished” for over a month, but somehow no matter how much I do it doesn’t seem to get much nearer! I’m sure it’ll suddenly come together and I’m hoping to finish next week. I brought my first box downstairs yesterday, a box of boxes! Gave me a tremendous boost, I never knew a box of empty boxes could be so therapeutic…

I need to find some smallish boxes to store some of the things I’m keeping (permanent storage, not just moving storage), but 90% of the unboxed stuff is now stuff I want, most of the sorting is done. Except for the box of boxes I packed just before I came down yesterday none of the things I want have been packed because I didn’t want to mix them up with the things I don’t want (which are all packed – well, 90% of them!). Some of the things I found were…interesting to say the least. In my bookcase (hidden behind the books) I found 7 year old yoghurt drops! To say nothing of the 8 year old locust beans (which absolutely stank).

 

Building regs have now been approved 🙂 The architect and chap at the council who’s job title escapes me at the moment are now builder hunting! *Jumps up and down* tis most exciting.

 

I’m really looking forward to half term this time, with having to be downstairs for Wednesdays and usually I come down for part of Tuesday and Thursday to, then grabbing the rest of the week upstairs cleaning and when I am downstairs always planning what I’m going to do when I get back upstairs I feel like I haven’t stopped for the last two months. A break will be welcome!

My DLA was up for renewal on my birthday, I was on high care and high mobility. Upon renewal they awarded middle care and high mobility. We weren’t happy with that, after all nothing’s changed since they saw fit to award me high care, so we asked for the decision to be looked at again. They left it unchanged, cos apparently I can’t need to go to the toilet most often than normal people as I don’t have a disease of the bowel or bladder (er..hello, muscle weakness which affects my whole body – thus all my internal workings as well as the external!) so we decided to appeal. Got a letter confirming and saying they’d be in touch in the next, something like 14, weeks! So we were all geared up to go to an appeal and it was a very pleasant surprise to get a letter last week saying they’d looked at it again again and decided I could have my high rate care back!

Of course meanwhile the ever competent DWP have stopped my Incapacity Benefit because they supposedly sent me two IB50s back in July (on high care you’re exempt from the IB50, on anything lower you have to fill them out), neither of which I received. Also despite the fact they must have been aware that the decision was being looked at again. Despite that my IB was still being paid, then as soon as they changed their decision and awarded high care it miraculously stopped! Of course the first I knew about any of this was when it had been a week since I was due a payment and nothing had happened so I rang them up. Not amused – luckily I have some savings to fall back on but they could’ve left me in a right mess! She said to allow 5 working days to sort up, it’s been 5 days today and they’ve now missed 2 payments. Total incompetence!

Welcome to the house of fun…