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Saturday 15 June 2013

Independence Day

So that's that done. The first practical step to accepting the severity of my condition, although I am still not quite comfortable with the term disabled, I'd rather call myself a mess. Or more positvely 'able to recognise that I need help to get better' and that now includes the more physical aspects and to claim what I am entitled to by having to suffer all this shittyness (sorry but it really is the best word.) After all I still have bills to pay. Yesterday I finally plucked up the courage to phone up the Department for Work and Pensions about claiming Personal Independence Payment, the new name and supposedly improved system for Disability Living Allowance. Well time will tell about the system but how ridiculous is the new name Personal Independence Payment, when in order to claim you have to lose your independence and it is because I am losing even more of it that I have decided to bite the bullet and make a claim. The criteria is based on 2 different sections, disability and mobility. For disability you need to require assistance with daily living requirements such as washing, dressing, eating, going to the bathroom, preparing meals, managing your medication or finance, reading and communicating. And for the mobility section you may receive this if you need help going out or moving around. Well that's a big fat tick. So which bit of this screams Independence? Am I singing Destiny's Child 'Independent Women'? No, I'm more likely to be singing the Beatles 'Help!' or more correctly texting my Mum to say "can I please have some breakfast and pain killers?"

When you ring up you need to be armed with all manner of personal details, so be prepared, then take a brake to get your breath back then phone. You need your National Insurance number, bank account details and Doctor's name, address and phone number. Once on the phone they go through all your details and you have to declare to allow them to seek more information from your Doctor or Consultant and for the Doctor to have your permission to give them the information, that you meet the residential and financial requirements for claiming benefits and that you have provided them with the correct information. There's probably  more but my brain is still fried after that 12 minute conversation. So now I just need to wait for them to send out the forms for me to provide them with more information about my err 'disability.'

In other news my wheelchair has been delivered. Freedom! Or should that be Wheeldom? I have hired it from the British Red Cross for 3 months but can extend it if needed and it is only a £35 donation to the charity. So this is at least me getting some independence, so to speak. When I put on Facebook the other day that I was ordering a new set of wheels I had various responses from " Do I need insurance?" to "are you getting in-line skates?" or "new suitcase?" from my Brother. Well I might consider a new suitcase for next time I head for the sun, which I would love to do imminently and I'm pretty sure getting in-line skates would just land me in a wheelchair anyway and as for the insurance well we'll see how my toes fair, as my Mum tries to navigate me around. How people do manage independently in wheelchairs I do not know? But fair play to them. Even my Mum needs help to get the chair in and out the car and as I have explained we live in a hilly area. So nothing so far is screaming independence but now at least I have the means to get out further than 20 steps outside my house or the car and because I'm not as mobile about the house at the moment it means that my parents can get out too as I can't be left alone for too long. As you can imagine I have been looking forward to this day and had to contain myself not to want to go out straight away but firstly my parents had to go to the supermarket and then I needed to go to see the nurse. As I was struggling out of the car an old man asked if I needed anymore help and then said that I'd just met a handsome man hadn't I? HaHa this made me giggle. Shame it wasn't Joe Mangiello or Ian Somerhalder though. Anyway after tea I couldn't wait any longer to get out and the lure of the retail park was calling. As soon as we got the chair out of the car the heavens opened and the rain came bouncing down, leaving me having to sit in an already wet chair and my Dad trying to push me and run as fast as he could to get to shelter. I soon discovered that when you go out shopping in a wheelchair everything that you want will be on a high shelf. When I say high shelf I do of course mean a shelf at normal eye level not that I was wishing to purchase a copy of Nuts magazine. For those in a wheelchair that do wish to buy a naughty magazine all I can say is I hope that you're shopping with a good mate, because the only thing on our level is Mills and Boon novels or kids toys. Mind you those Mills and Boon novels have some pretty racy titles. You also soon discover that till heights are also annoying. I was happy to discover though that the chip ad pin devices do come out of their holders but even then it feels like I'm a Hobbit at the Rivendell Council. The scariest moment of all though came in Tesco Extra on the escalator/ travelator/ magic stairs. Travelling agonisingly slowly on an incline not able to go any faster because your wheels become locked and hoping that your Mum can hold on so you don't tip backwards. It tuned my stomach, never again. If that was what is what it was like going up then there was no way that I was going on it downwards. The whole thing was such an experience that I simply had to buy myself a Lemon Meringue Krispy Kreme doughnut.

All in all though I'm glad I have it. I never thought that I would be but then again why would you be? It does after all symbolise that something bad has happened . For now this is my way of making the  most out of that bad thing. I am saying " no, I will not be confined and miss out anymore than I have to." This condition may be taking over my body but it is not going to rule my head as well. Mainly because I'm terrified of becoming extremely depressed again but also because I do still have options and I will use them. The end of the world is not nigh, although it feels like it when my you're lying in bed racked with pain and feeling extremely exhausted. But somehow we have to remain hopeful because you are the only one who can really get yourself through this, yes you can ask for help but again that has to come from you. You are the only one that knows exactly what you're going through and the strength it takes to try to accept what is happening without letting depression , bitterness and anger take over. So do I feel depressed or disabled by needing a wheelchair or for claiming benefits? No I sort of feel empowered because I have made decisions to help myself and what's more I have managed to spin what I thought was a symbol of inability and sadness into something  positive; meaning my head is actually in the proverbial 'good space,' which actually is priceless.

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