Firstly, after the bout of knitting woes, things started going better again. I now have a blue swatch of ribbing and am part-way through a blue swatch of seed stitch (aka moss stitch). I think this is my favourite so far to look at and feel, but it does seem to take a bit longer to get to the end of the row.
Secondly, I've had a letter from the Disability Living Allowance people, explaining that they have received my claim renewal, and want to write to my GP for more information. That's pretty normal and nothing to worry about. After all, it'd be a bit pointless if they didn't check with at least one medically qualified person.
When I first applied, just under two years ago, I was quite pleased to hear that they would contact my GP. Dr W has known me and my family since I was a kiddie. She saw my childhood illnesses, my mum's long-term health problems, my marriage and subsequent divorce, my teenage smear-test scare. She's the person who diagnosed me with The Lurgy. She knows me well enough to know I'm not the sort of person who would be trying it on. She knows the sort of lifestyle I had before I got ill, and how it compares to the activity levels I have now. I could not think of a non-family person better placed to give the DWP useful, in-depth and accurate information about my health.
She is also, currently, on maternity leave.
I have seen Dr M, the locum who is covering for her, twice. Both times were follow-ups regarding an ear infection I had a while back. She was very nice, efficient, and gave the impression that she knew what she was talking about. Unfortunately my ear infection had sweet buggerall to do with my Long Term Lurgy, unless you count that I've had as many, if not more, visible "oozy" acute infections (yum) in the last couple of years since I got ill, than I had in the fifteen years before.
So, when I saw her about the ear thing, I mentioned that I was working on a DLA renewal and that they might want Dr W's input, which may fall to her. She smiled and said this had already happened with one of Dr W's patients - what she would like to do is make a long appointment with me once they contact her, and we can go through her part of the form then.
No problem, right?
My diagnosis label is "ME/CFS". In non-medical terms that means "we don't know". There are three main schools of thought. One is that people with ME/CFS have a psychiatric problem - that the reason we experience the physical symptoms is because of some past uncovered trauma, or low self-esteem, or stress issues. Sort of like a panic attack, only instead of the physical manifestation of our mental issues being shivering and trouble breathing and pounding pulse, we get the pain and whatnot, and instead of it being for a few minutes at a time, it's more or less constant. Another viewpoint is that people with ME/CFS have a biological problem that medical science doesn't have a conclusive test or cure for yet. Medical research from the biological viewpoint is ongoing but underfunded - after all, ME isn't a spectacular illness with a high death rate. The other widely held opinion is that people with ME/CFS are making it all up, for fun/attention/time off work. Thankfully this is more rife among the general public than the medical profession.
I do not know which of these theories Dr M subscribes to.
Dr W can confidently feel certain I'm not malingering, because she has known me for many years. How to convince Dr M, who I've known for all of fifteen minutes, that I'm not a workshy scumbag?
Similarly, I know that if Dr W thought my problems were psychiatric, she would have immediately referred me for whatever flavour of psychiatric help she deemed most appropriate. As such, on my original DLA forms, the minor mental health trouble I had were listed as a secondary effect of my illness - in other words, that I got bouts of depression and mood swings because I lost my job/was unable to go out like I used to/got frustrated by my physical limitations/was in a large amount of pain. But what if, this time, Dr M puts it all in as "mental health"? Will they consider my illness to have changed, and would I get into trouble for that?
Or even if Dr M accepts that I'm not making it up and am psychiatrically sound, how do I properly describe the effects my illness has on me without sounding like a whinger? When I'm meeting people, particularly if I don't know them well, I try to be positive and upbeat, try to make a good impression. I'm full of painkillers and if the illness comes up I say things like "the hourly pay sucks but the parking's great" or "meh, it's only a bit of pain, it's not actually going to kill me". What the DLA people need to know about are the bits I don't like people to see - about the pain that is so bad it reduces me to tears, the dizziness that makes me vomit, the lack of dexterity that makes me drop my plate of dinner all over myself and the floor. See, you can hear those violins already. So how do I give a clear picture without giving a bad impression?