I saw my Lovely GP this week after my medication got flagged for review, meaning it’s been a year since I last saw her. Nothing much has changed in the last year, in fact in the last 2 years.
Seeing my Lovely GP, who is supportive about ME/CFS, usually leaves me feeling re-assured but a bit depressed because there’s nothing much she can do to help. She prescribes to help control symptoms where she can, she offers referrals if I want them but doesn’t press anything on me. But I leave with a sense that there’s nothing much anyone can do to help no matter how much they want to.
I read something on the internet about how many GP’s now go through the motions with Chronic Fatigue Syndrome patients. They say the right things because the guidelines say they have to treat it as a physical illness. but privately they think their patients are just crazy or malingerers. The advice being don’t let the patient know this because it only fuels the fantasy they are ill.
That’s pretty awful stuff to wrestle with. Because even if my GP makes the right noises how do I know they are really invested in my care?
Well I plucked up the courage to ask my Lovely GP this time around if she had heard of LDN (which is for another post) and if she would ever be willing to prescribe “off licence”. She said she hadn’t (but could I give her any information) and they don’t usually do that (very sorry and all that).
I tell her a quick summary about LDN, give her a piece of paper with some urls on it and she flicks through one of her books with medications it in. She says she will certainly take a look at the info and she will present a case to the lady in charge of deciding these things and see what she says – although she wasn’t too hopeful it would be a yes she was promising to try and get an answer quickly for me.
Exciting! My Lovely GP is willing to try even though some doctors would now be writing “difficult patient” on my file.
So, I ask, if the answer is no to prescribing it off licence would she have any objection if I were to seek a prescription for it from a specialist GP or private doctor. No problem whatsoever, absolutely, go for it. Anything I think might help she is for me trying.
We reviewed my exisiting meds and I’m going to try upping my amitriptyline to 30mg as I’m needing more pain killers and migraine meds recently.
I told her we were in the process of re-applying for DLA (Disability Living Allowance)and could I drop a copy of our form in again for when she needs to write her report to them. Behind you 100% she says. Anything I can do to help with that she says.
OK, so while I’m here … my early blood test results have been bugging me. Because my red cell count was high consistently but I was told it was “my normal”. Could anything have been missed? She looks at the results and says very apologetically that’s it’s very moderate and there’s nothing really there of clinical interest. Sorry.
I’m getting answers! I’m not getting diagnosed with something treatable but I’m getting answers.
So as I’m about to leave Growler asks if I’m want to mention XMRV. What’s that then she asks. She hasn’t seen the news. So I give her a quick summary about the research findings. And she gets excited. A retrovirus? How interesting, let me write this down.
This is another reason for asking about LDN, because it sort of strengthens the case – it being effective with HIV (another retrovirus). Except she says this at the same time as me.
Wouldn’t it be wonderful, she says, if it were found to be the cause?
Any doubts I ever had about whether my GP really believes in ME/CFS, or whether she just humours me, were set aside during this ten minute appointment.
I saw her willingness to help, but her being bound by the rules. I saw her interest raised with news of a medication she hadn’t heard about and with research with significant findings. I saw her keen to go read more and find if there was a way to help her patient, to help me.
I also had a few more hints that she has personal experience of ME in her close family – which goes a long way to explaining why she’s supportive, open minded and just a little frustrated with ME/CFS.
Having no doubts about her belief in my illness and her belief in the challenges it presents to me day in and day out, means a great deal to me. Also I now know I need never be afraid to print out an article of interest into new research or treatment to share with her. She’s not going to give me a black mark as a difficult patient.
Her support has given me a blue badge to use disabled parking, a Disability Living Allowance, medication for symptom control, re-assurance, knowledge, a diagnosis (which no-one else would give me) and hope.
I once read that the best gift you can ever give to someone is to believe in them.
I thought it just meant to believe in their potential, but I’m learning it reaches much further than that. And it is indeed a wonderful gift to receive.