So, I have another appointment with wheelchair services to see GBL, this time at Thurrock Wheelchair Services, and he brings along the chair I want and the one that the NHS will provide. Even with the lightweight one from the NHS fatigues me quickly. The occupational health lady can see that very clearly. And how easily I get on with the Quickie Helium. They agree that they will give me a voucher for a certain amount, now I just had to wait for the letter agreeing the voucher will come through.
Within a week the voucher came through, it was for just over £1.7K. I immediately email a copy to Acces to Work and then obsessively check my email for them to get back to me. My contact calls me back the next day. Access to Work will fund the full amount for the rest of my wheelchair. I was so happy that if he had been there in person I would have kissed him. I was actually in the ROH office that day doing casual work and I honestly cried and got hugs from people – they knew how much this meant to me.
This has felt like a hard battle – and I got it all in writing the week beginning the 15 December and placed my order with GBL wheelchairs then, but of course they closed for Christmas just after getting the paperwork. I have to wait for them to reopen in the new year and then it will take six weeks for it to be built.
Now I have to wait to see how the payment side of things all works out, but GBL are used to handling all of this and I am sure will talk me through the stages.
It is exhausting, although this is a several blog posts long it really cannot convey the heartache, stress, shouting and screaming (at home, not to NHS staff I would like to point out) and general all round exhaustion this has bought out for me.
Fatigue is a very real and, for me the worse part of this illness, HMS/H-EDS affects everyone differently, but I find that my fatigue and pain is greatly exacerbated by stress. This has been a very stressful experience. And as I have stated I am privileged for many reasons, but also, if worst came to the worst, I could have begged, borrowed, wiped out every penny of savings and used my credit card to get this wheelchair. It would have left me financially vulnerable to do so, but together my husband and I could have sorted this out.
This is not possible for a lot of people, especially when you consider that many people with my condition (or indeed many others) are not able to work, and I got the biggest part of this funding from Access to Work. I am fortunate to have been self employed and been able to go back to being so, I have also been extremely supported by ROH who put me onto Access to Work in the first place, they also wrote an extremely persuasive email to Access to Work to push me up the waiting list.
And finally I have the most wonderfully supportive husband, who made some of the calls for me when it all got to much, who listened to the details of every single word said at each conversation and who held me as I sobbed that this was all too much and I couldn’t do it any more.
I cannot even contemplate having to fight this battle all by myself.
And of course, this is just the first of the battles I have to fight……