To PIP
I got your letter today, and you want me to reply in the next 3 weeks, which never feels like much time. You want to know how my illness or disability effects me, is it easier, harder or the same as the last time we corresponded, and how life is for me right now….
…… how do I explain to you what my health is like when I can’t explain it to my family and friends?!
The thing is I can’t sum my life up in your neat little boxes. I mean I certainly think your fairer then your predecessor, DLA, but I feel like it’s hard to explain how things are for me.
You see things got really bad so I had a wet room fitted, ordered from my social worker, as well as a stair lift, and while both have changed my life, so in some respects things are easier, it doesn’t change or take away my illness and disability. Yes I can finally shower independently but still need assistance, especially afterwards,…. But now the little box is filled and I feel like it’s more complicated then that!
I have a very rare kidney disease called Autosomal Recessive Poly Cystic Kidneys, along with a bunch of other stuff. (There is very little research done so even the drs are baffled how I am still alive at this point, -I must be on Gods VIP list!)
Yes I am better then I was last year, because I had my gall bladder out, (although even that went wrong and left me with an open wound for 7 months, unable to use said wet room!) But last year I was really ill, worse then when I wrote to you the year before, so things are better then last year, but only a little better then when I wrote to you…. but that doesn’t mean I now don’t need help!….. Wait now even I’m getting confused!
I’ve found all my drs letters, but now it says as this is my second letter, you don’t need to see them, but you do so what I’ve written makes sense and is backed up by the drs, although that one dr has a slightly different view, so should I submit that letter, am I being dishonest if I don’t? And what about the report from my social worker, it isn’t up to date, so maybe if I just add a cover letter to let you know what’s changed….. But will you read it if it’s written by me and not some social worker or dr?
It’s not just a list of illnesses/disabilities, as one illness effects another, and the cause and effect of all these illnesses combined equals, well me! And there is only one me in the world, so how can you fully understand what I go through?
Then there’s mentally how it effects me, the good days and the bad days…. I want to be honest, but I genuinely don’t know how many good days and bad days I will have in an average month…… but now I’ve run out of form!
PIP, I’ve got a solution, what about we swop shoes for a day, or maybe do a freaky Friday? Then you can really see how my illnesses and disabilities effects me,…. oh wait but what if it’s a good day, you might then think I’m a liar, ok maybe a week- that should do it….. But how can you really see, in a week what I’ve lived with in a lifetime?
How can you see the pain I’m in everyday, and the effect it causes on a daily basis, the the frustration that builds up coz I can’t get out the house. The loss of independence coz I cant drive anymore due to the daily morphine, I cant shower without someone standing the other side of the curtain, as showering is so exhausting I often feel faint afterwards. The fact I can’t be the mother I want to be, I cant take my kids out on my own, and am often too tired to take them out even with my carer or husband…, and worse still I need their help to manage every day. How can you possibly understand how it feels to be so dependent on every one, all the time? That even when my friends can visit, just talking tires me out. Then there’s the bad days, when getting out of bed is an impossible task without someone to physically help me…..
So PIP you see I don’t fit into a neat little box, in fact none of us do really, because we are all different and even with the same illness it effects us in different ways. It’s doesn’t mean we are lying, it just means we are each a unique human being!
…..Ok so it’s taken me 3 weeks, with doing a little each day, but the form is filled to the best of my ability, a million letters, blood results, & prescription included. All I can do now is wait for your reply…..
Yours sincerely,
Rebecca Bull
(Ps yes I did fill the form out myself, even if it looks like it’s been written by a 5 yr old!)
Miss UnstoppaBull 