This is my first 'blog' so Hi to anyone reading this.
I have had RA [officially] since i was 21. I am now twice that age and in need of my left hip replacing. The problem is i don't have a full-time job, as such!
I work for the NHS in a hospital as a Traffic Management Officer (Parking Attendant really) and have been doing so for over 3 years(ish) as an "Agency Worker". I am part of their in-house agency known as Flexibank.
I need this operation though, and this is where my trouble comes in. Being only agency means that when i am off work recovering and getting back on my feet I will be making NO money. Also, my job wont be kept open for me, and so i wont be able to go back (even on light/desk duty). So i am scared too leave this position!
I have no idea about benefits as i have always had a job and don't know how to go about getting the right ones, or what the right ones are. I tried DLA three separate times and got turned down each time. I have been told that i need to apparently fight this, and that it could take up to a year to approve. But i get disheartened by the rejections because...well, i just do!
I don't know how to fill out forms. I don't/can't lie about my extremities because i don't know what they are!? I have lived with the pain for so long that i ignore the twangs and twinges and just get on with things. But these twangs/twinges are becoming too much to bare =( I have sciatica and scoliosis because of my hip. A loss of millimeters on my left leg (for which i wear a heel riser in my shoe to compensate) and an overwhelming feeling of uselessness.
I don't talk to my family much. My father died when i was 16, and so i have no parental-figure to look up to or ask. I find life a struggle and feel very much alone sometimes, even though i have a multitude of friends. But they don't understand how it feels to not be able to put socks on, or cut toenails, or pick a penny from the floor without pain.
I do have a wonderful Fiancee though, and as much as she's understanding of things she still doesn't know what, or how, i feel most days.
I don't know if anyone will read this. I don't know if this is too long. But i just wanted to write some of my frustrations out and hope that someone out there can understand, even partly, where i am coming from.
And if you want to know where exactly i have RA then i will tell you....ALL over! Head to toe, riddled with it.
Thank you for getting this far. I may write some more sometime.