Ok I am editing my views out loud a bit today because I’m calmer and I’ve just had a good-ish chat with my GP, who is actually a nice woman who generally seems like she wants to help me….. she just can’t, no matter how frustrating it is.
I told her that I feel as though day to day, month to month, I’m left to cope on my own and asked if there’s anything new they can do. Any new treatments for people like me based on the mountains of biomedical research.
I say chat… I think I may have ranted a bit. Oops
The problem our GPs face is that they have to operate within the confines of whatever system they work. If they don’t they can be sanctioned. All this research will take years to trickle down to every day medical practice.
So in my case, whatever health board operates here, say NHS Lothian for argument’s sake, because I don’t actually know (shocking of me) tells her what she can and can’t offer me.
It also tells her how far to go to investigate symptoms before stopping for cost v probability reasons. She didn’t say all this explicitly because she’s far too professional but I read between the lines.
She also agrees with me that MUS is a horrible thing to ‘do’ to people because it gives a wrong perception. She knows me and that I keep trying to live as productively as I can and that I’m crawling towards my goal of being self employed at home.
The problem for me is that I get frustrated that there’s nothing she can do.
I also have to judge carefully when my symptoms evolve or something new starts happening when/whether to bother her with it.
I mean how do I know if I should ask for something to be investigated or not? It’s a fine line!
I don’t want to jeopardise our hard fought for and tenuous trust with her thinking I’m some hypochondriac running to her with every sniffle… but what if the chest pains I’ve been having are something that’s not related to the musculoskeletal pain I have with CFS/ME?
What if the fact I’ve vomited (just a little) in my sleep twice this week is a sign of GERD? Should I tell her? Should I wait and see?
I’m sure I can’t be the only one who feels this way. Living and coping for the most part with this thing, without medical help. And the problem with things like yesterday’s incident and shrinks interfering with WHO and NICE guidance, is that it slows/stops/muddies the waters that provide that trickle down of important information and treatments for people like us….
That’s why, although my reaction may have seemed overblown almost to the point of hysteria to some, what happened yesterday was so important.
That’s why, we need to get psychiatrists and psychologists out of this river and we need to react swiftly and vociferously every time we see the outrageous injustice and why the work of charities like Action for M.E. in this regard are so essential.
If the water is clear, there could be a treatment in my lifetime and I can once again go hiking across the Pentlands with my crossword and my picnic on a summer’s afternoon.