| Posted: 05 May 2008 at 10:11am | IP Logged
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Hi hunny it’s good to hear form you again… (hope your brother’s inquest has given you some light).
I’ll answer questions that I know of about allowances later on for you hun…
I’m sorry to hear your still off work… (maybe we should get together?... give you something good too look forward too (well I hope good! lol))
It’s fab when doctors don’t understand the way the constant pain and limitations spd has on the mobility side of things as well as emotionally and mentally… it’s an all round battle.
Hun from my own experiences it’s probably down to the hypermobility aspect of spd… that and the bones are more than likely inflamed (medical term bone odema)… I think it’s a case of plodding along listening to your body… Unfortunately we can’t rest up 24/7 as we’d go crazy and our muscles would waist away… it’s a catch 22 situation. But by pushing for all the referrals your doing the right thing hun you are fighting… which is what we have to do every second of the day. Look for the smallest silver lining, your children’s smile, being able to put on your own knickers, socks, shoes…
I can understand you works point of view about redeployment but I think they are going about it in all the wrong ways… It’s difficult to see the limitations on what you can and can’t do as a it changes hr to hr minute to minute. Also how the pain (that is real) can be so intense, so quickly.
As for finding out about what help financially you might get call the local job centre plus or CAB. I receive Disability Living Allowance, Incapacity Benefit (as I can’t work but was), it makes a huge difference but hurts a lot knowing its official you are disabled. As for getting a blue badge I have one of these too. If you get the higher mobility rate of DLA you’re automatically entitled to get a blue badge, otherwise it’s not a recognised condition and it might be a battle to get one as you’ll find no one will say it’s going to be permanent as this would be soul destroying… you do need your gp to be understanding of your condition and all the limitations it has and the difficulties you face. The form it’s self can make you feel useless (well did me) especially as it came to toilet abilities, dressing, how far you can walk etc.
I’m on the core muscle exercises too hun, keep badgering them about rheumatology, you’re doing everything you possibly can but keep at them the day you don’t is the day you give up!
Please don’t apologise about the questions, life’s full of them and even if we can’t answer them but help shine a little light that’s good too.
Have you thought about seeing your physio and asking for an occupation therapy referral to see if they can give you anything to help you out at home? I’m waiting to see them and I was referred in Jan. It’s a long wait but it might be worthwhile calling and getting referred to see if there is anything they can offer you at home hun… get on the books you can always cancel it if you start to feel better.
Hope that’s helped a little.
Big soft gentle hugs
Tsena xx
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