Hiya, well I sent the forms off - and they were truly epic. I have Crohn's, Celiac, a heart condition, and am waiting for repair of a hernia (can't get fixed until I am confirmed in rmission and off steroids) - so I do have a few things going on, although it is only the Crohn's that drives me to make an application really.
I was totally frank and honest, outlined that I can't ever go far from a toilet, that while I dont have a motor impairment, I do get severe pain when I am walking around, am suffering from chronic exhaustion (anyone else noticed how having the squits for 8 months can leave you feeling a tad lethargic?), and that when I do have accidents, which is frequent, that I usually vomit, often lose control of my bladder as well as my bowels and invariably end up fainting and have to be helped to clean up and get back into bed where I sweat and shiver for hours in the aftermath... so my husband helps me wash and dress, he also keeps an eye on me in the shower because I get wobbly and fainted in there (any excuse), and in fact these days I only get dressed for the doctor or the hospital...so going out of the house is something that requires epic preparation and consideration... I also listed for them all the awful places I have lost control of my bowels this year... I literally had verbal diahroea on the page!
I also told them that my 8 & 9 year old sons have had to help me out after bad bouts, which I dont think is fair or appropriate for kids of that age... they cry when I get sick, and it makes me feel so horrendously guilty.
Also on the food side of things - I don't cook, and I hate eating, it hurts too much - I just have Ensure, athough I have promised hubby I will eat one solid meal per day... so that got me a few ticks...
Also included on the form that my GP has arranged a commode for me for two reasons - to preserve dignity as we only have one loo, and also so there is less distance to travel back to the bed after a particularly bad bout... you can literally flop of it which is good because that is about all I can manage after my bowels have parted company with me!
It's a tough form though, because like all of us, I have some good days... hell I have some great days... but when I have bad days I can be collapsing all day... and what might start as a good day can turn into a bad day in the blink of an eye... you think you are fine so you head to the corner shop, and before you have gone a few yards down the road you are starting to sweat, with the stomach lurching and the bumhole making threats... we've all been there.. At the other end of the spectrum, I got a lift to the doctors yesterday, but felt pretty good when I came out, and it was a nice day, so I started to walk (my thinking was that if I started to take a turn I could call hubby and he would be there in less than 5 mins), it was very painful but I made it all the way home - a good 20 minutes - I felt like a triumphant marathon winner! By the time I got to my door (2nd floor flat) I wanted to do a Rocky style dance on the door mat! Unfortunately I then had to sleep on the sofa all afternoon to recover from the exertion! Hubby gave me a right lecture about being irresponsible - what if I had collapsed before getting to the phone...blah bah bah... he cares too much!
Now I have posted the form though I am scared to have a "good day" in public in case they send their investigators round - I've seen the adverts! (scary) What if I got spied on when I was having a "no poop - make the most of it day"???
Ah well I have sent it now - will let you know how it goes...
On another point - my son has UC and he gets it at the higher rate for personal care... to be honest I would be grateful for the lowest rate... I have been ff work for ages now and it's all getting a bit desperate!
Well I expect they close their offices for Christmas soon so probably won't hear anything till the new the new year - keep you posted..
Lishyloo