I haven't posted on my blog for quite a few days because I've been through a bit of a rough patch health-wise, which has not been helped by the fact that I am in the middle of reapplying for my DLA (Disability Living Allowance), a state benefit to help with both mobility and care requirements. It has become increasingly difficult to obtain this benefit, even more so just recently given the state of the nation's economy (it seems all wrong to target disabled people, some of the most vulnerable in society - far more disabled people live below the poverty line than do able bodied people), and it is generally accepted that very few people receive an immediate grant. It is normally turned down, in the hope, apparently, that people will not be bothered enough to appeal. So, those who are serious about it, and I guess that goes for most of us, will have to go through the process of appealing. This can involve appearing before a tribunal, which to me smacks of criminalising disability - you have to "prove" how ill you are and justify your disability. Increasingly we are made to feel like wingeing layabouts and benefit frauds. Grrrr.
Completing this mammoth form is no mean feat, even if you were well (which of course, you aren't, otherwise you wouldn't be applying). It's incredibly stressful, because of the need to emphasise the worst aspects of your disability or illness, and major on what you can't do rather than what you can do. For someone like me, who's glass is half full rather than half empty, and who has a positive approach to life, and who doesn't want disability and illness to be my defining feature, this is forcing me to look at my life in a way that goes totally against the grain. In the background is the constant fear of being turned down on the grounds of not being believed, and the dread of having to go through a possible appeal.
The form is very long, and it involves a lot of writing, which I find very tiring in itself. Half the time I've just written "please see attached sheet" and typed it out, which is a lot less exhausting for me, as I touch type much faster (and more legibly lol!!) than I write.
This time it's been a particularly depressing experience, because comparing what I wrote last time I applied (2 years ago) there has been quite a bit of deterioration in my health, which has come on gradually - living with it day to day isn't too bad, but being faced with the contrast in black and white isn't fun.
I am going to see my GP (primary care physician) on Wednesday with my hubby in tow. I don't go and see her very often, because there's nothing she can do, and I'm not one for constantly running to the surgery with every little thing. I need to keep her up to date with how I am generally, and any specific symptoms etc. The DLA people will probably contact her to confirm what I have written in my form, so she needs to know how mobile I am and what care I need. I've asked my hubby to come along so that he can describe how it is day to day, and just how much he needs to do for me.
I am also going to give her a copy of "The Gorilla in Your House" which I shared with you recently - this excellent article describes in a humorous way what it is like to live with a chronic illness or disability, and why we don't always want to rush off after every "cure" that's suggested, which may or may not work - you can put a lot of effort into that with no guarantee of success, and end up worse off afterwards, both physically and emotionally because of the effort expended and the disappointment which results, and also financially - many of these things seem designed to empty your bank account! The article and the comments following it show that sometimes we just want to use what energy we have, to live life "now" and enjoy what we've got, even if it's not perfect. I think this will be helpful for my doctor to read. Doctors are trained to "cure" people and often find it very difficult to deal with chronic patients that they can't help - nobody likes to feel helpless and be confronted with people who bring up those feelings. Sometimes they just need to know that we are "OK" and dealing with everything just fine, and they don't have to feel they've got to "fix" everything.
I also need to speak to her about my wheelchair. I got my lovely Rolls Royce on Ebay 3 years ago, and it's still going really well, and it's very comfortable and I love it - it's been liberating for me, and enabled me to do loads of things I otherwise would not be able to do. She was very against my getting it initially, because of the very common attitude amongst doctors that if you get one, it will make you worse because of deconditioning etc. and they think it's about giving up etc. I think I have convinced her that they are not all negative, and that it has changed my life so much for the better. She hasn't made any negative remarks about it since.
However, since getting it, I have put on quite a lot of weight because I am unable to take any exercise, and just lately, I've noticed that it is quite a tight fit round the bum! That's OK in the summer, but come the winter, when I shall be wearing thicker clothes, I can see it being too small. Because I got it second hand on Ebay, and also I didn't know how long I would need it, as I got it fairly early on in my illness, I was never properly assessed or measured for it. It's been a good fit and it's very comfortable, but I think the time has come to be properly assessed. As well as my current one being too small now, filling in my DLA form has made me realise that my condition has not improved, but rather has deteriorated over the nearly 4 years that I've been ill, and there seems to be no immediate prospect for improvement, and I think the time has come to recognise that short of a miracle, I am now really a "disabled person" and I should do this properly. I am going to ask her to refer me to the proper place where I can be assessed. If I am able to join the voucher scheme, I should be able to get a voucher to put towards the wheelchair of my choice, and to get properly measured for it. Along with this service, you can also get ongoing maintenance and insurance, and further assessment if your needs change. I look on this as a real safety net - for a while I've been quite scared about what I would do if my Rolls Royce broke down!
I just hope I get my DLA re-awarded so that I will be able to afford a new wheelchair!
In addition to all this, I have been trying to clear my room upstairs in readiness for converting it into my own ARTHaven! I've always kept my craft stuff up there, and when I was well, I used to do quite a bit of sewing in there. Officially it is my office, where I have my desk, filing cabinets etc. but rearranging things, I should be able to keep my papercrafting stuff out all the time, which will untimately save me a lot of energy, and make it easier for me to get round to actually sitting down and creating some things!
With all this going on, I haven't done any ART of any kind for weeks. I soooo want to get going again!