So Folkarinos, how’s it going in the land of the living?
I had been planning to write a piece on crippling, agonising self-doubt as I had been going through one of my phases of wondering whether this disease is all in my head. That maybe I needed to try a little harder, that this is perhaps ‘just’ depression… but in the past week that self-doubt has vanished (again) with my CFS/ME reasserting it’s total control of my life.
As you know from my last post, I had been starting to feel a few benefits of being on ‘The Drugs’, so I set to doubting myself as is my periodic want. As Dave says, “we keep having these cyclical conversations and I’m sure we’ll have them again in another few months”.
To be clear, the majority of this self-doubt comes from the almost callous indifference of the medical profession.
I am not nearly arrogant enough to think I know all about my illness, especially as there is so much (contradictory) information out there with new lines of research being released all the time but I do try… And paranoia or not, you know how you just know when someone isn’t believing you, taking you seriously, or at least just doesn’t get what you are talking about? (ladies in professional jobs with a lot of guys, I expect you can relate to this feeling) …
Well that’s how I feel when I’m trying to talk to my doctor trying to get her to ‘treat’ me in any meaningful way.
Despite asking, nae, begging for help and regularly (every three months as advised by Action for M.E.) telling my doctor of my symptoms and struggles, I have not been offered any actual treatment since 2014… except antidepressants of course. I read other people’s blogs, stories and comments all the time about getting referrals to rheumatologists for their pain and neurologists and various tests being done to regularly check that their bloods have stayed the same and they are not showing any new signs of thyroid issues or arthritis for example. I don’t get any of that.
A while ago (I can’t remember exactly when) I made a data protection request from my GP for my records. I had seen that a new agreement had been signed up to, the Scottish Good Practice Statement on ME/CFS and I wanted to check whether my doctor had done all the things on it, or not as the case may be. I paid my £50 and got my records but of course I didn’t have the energy to go through them and they were annotated in such a way that I didn’t understand the bits and pieces I could read anyway.
Interestingly when I mentioned this to my doctor, she quickly hurried through the list and ordered a vitamin D blood test, which showed my levels were dangerously low… hardly a surprise for someone who is mostly housebound. If she missed this, I thought and still think, what else is she missing? What if something changes and I develop, for example, gastric damage from continual acid reflux? What if the chest pain I experience is from chronic overuse of NSAIDs?
I think this is why I must sound like a hypochondriac sometimes but my frustration at being essentially ignored, is real. I am left to cope on my own as the changes in my condition are never investigated and hardly even listened to, but god forbid you should criticise them…. (I wrote a complaint about my previous GP in this regard and rather than it being dealt with by the practise manager, I received a combative phone call from the GP in which he forced me to write a letter of retraction/apology, for fear of being expelled from the surgery! Then my GP was changed. I have given up challenging them since and resorted to just keeping them informed).
I periodically get angry, upset and hurt…. Then the self-doubt kicks in Does she think I am lying? Does she think I am just attention seeking? Does she think I am less worthy than other patients? Do I bother her or take up too much of her time? Does she think it’s all in my head? Is it, in fact, all in my head?!
That’s why I can’t talk to her, that’s why I get nervous flustered and stumble over my words.
I want to be clear here, there is no ‘just’ about mental health, I am not diminishing it in any way. It is equally devastating and harmful as any physical illness I have ever seen. In fact, it would probably be easier for me if I did have a mental health condition and only a mental health condition. It’s something I could learn to live with and work on. But the problem for me is that, if it were a mental health condition the drugs that doctors want me to take should work and they NEVER do.
And so it was last week, my sixth week of being on ‘The Drugs’, as my self-doubt melted away yet again, my physical symptoms spiralled out of control and I had to spend two days almost entirely in bed.
The hypersomnia, that is almost like a drug state in itself, took me to that weird delirious nightmare place on Wednesday morning and I didn’t really come back to earth until Friday.
Lorraine our cleaner had been and gone, had the hoover on, probably talked to me and everything but I didn’t remember her being there. I just saw that she had been and cleaned.
I tried to push myself to catch up with some chores on Friday and was almost crying in pain by the end of the day. Then my bottom half and back totally seized up and I went into that tottering robot walk phase. I felt so ill.
Over the weekend the dreaded yellow liquid poops came back, along with more terrifying nightmares, vomiting and not being able to keep my food down. This was finished off by an almost completely sleepless night last night, because every time I started dozing off and my throat relaxed, I regurgitated saliva, acid, whatever up into my mouth. I don’t actually care that much about being sick a lot, I’m sort of used to it I just dislike the uncomfortable feeling like something is stuck in my throat or my chest and I find it frightening when I accidentally breathe in some of that liquid and experience a choking sensation which jolts me awake just as I have fallen asleep.
I’m shattered. I’m so hungry today but I know I can’t eat. I could barely get down a cup of tea this morning and I can feel that lump there, waiting, lurking, the puke will be real.
On the plus side I feel mentally fine about all this, like I can probably exist like this for a while and not jump out the window so I guess ‘The Drugs’ work from that point of view.