Friday morning.
The frustration of this condition knows no bounds, and I guess I just need to write about it today.
Last Sunday I got out with my husband during the day.
Our car is fixed now and it was so good to get out. I think it was the first time I have been out during the day (ie, in daylight) for maybe 8 weeks. I suspected I’d be paying for it a bit the next day – especially after climbing all the stairs to get back into our top-floor flat once home.
But that would have been ok. Well not ok exactly, but I would have accepted it without feeling too stressed about it.
I’m writing this on Friday morning and have been pretty much bed bound for the last 4 days. Not so much with exhaustion and weakness (although that too). But with crippling headaches (again).
So frustrating after managing a few hours out on Sunday. That horrible reality of 1 step forward then 3 steps back.
It all got triggered by an argument on Monday evening with husband.
Won’t go into details, but it was an issue that’s been argued over many times. For me, very upsetting. And it always feels unresolved.
Hey ho . . . but that’s married life isn’t it ?
But it made me think about how emotional exertion (from a bad event) can sometimes have an even worse impact on this condition than doing too much physically. At times.
If that makes sense ?
Well it made sense to me.
Being in bed for 4 days completely disabled by headaches and exhaustion is bad.
Oh god, these headaches are vicious.
Been using the usual stuff like Panadol Extra together with Ibuprofen – didn’t work. Eventually gave in and resorted to taking Solpadeine Max the last two days – which I really don’t like taking because of the addictive affect of the codeine in it. And you are only allowed to use it for a maximum of 3 days anyway. Also tried using cool gel migraine patches on my forehead. Some things would take ages to work, or not do anything at all.
Lying in bed with so much pain was driving me mad, but I didn’t have the strength to get up and move around. Or do anything to distract myself from the pain.
All I could do most of the time was try to “go with the pain” and breathe. As slowly and deeply as I could. Over and over.
Most of the time this didn’t work. And I have to confess I wasn’t thinking calm or relaxed thoughts . . .
I was dwelling on stuff like :
This is the UK with a proper health-service. Not some backwater country with no health service.
It’s ridiculous that I can’t get any help with some decent pain medication.
Its really not much to ask for.
I’ve been mentioning these headaches to GP for years and years.
And at least twice to docs at the Homeopathic Hospital.
But nobody listens to a word I say.
And the last GP who phoned me from the surgery I have been with for 28 years was awful and actually made things even worse.
(See last post. The 5th section – it was quite a long post.)
And it is so bloody hard to change docs. To physically do it I mean. With this condition.
This is a situation I’m really struggling with. And have done for years.
So far, I have managed to get a registration form from another surgery. But my husband had to go in to collect for me. As they don’t post or email them out regardless of your situation. The receptionist I spoke to didn’t seem to understand much about the limitations of ME/Cfs. And it will be impossible for me to actually speak to the GP until I am registered as a patient.
(I don’t mean I wanted to speak to him as in a proper appointment, I wouldn’t expect that. But just to speak for a few minutes to kind of see what his manner towards people with ME is like.)
The process, as I understand it, is :
1) You have an appointment/examination with the nurse and fill in the form (I’ll need to complete it in advance).
2) Then (IF they agree to accept you as a new patient) your medical records get transferred.
I was informed this can take 2 months. I have no idea why that long.
NB. You might not be accepted if it is felt you have “too much” wrong with you. (I heard this unofficially, not from the GP receptionist I have to say.)
3) Once this has all happened you can actually speak to the GP – if he hasn’t retired by that time . . .
and then the crucial one
4) You you have to hope (and pray) that he has some knowledge of ME. And even more importantly – a decent attitude towards it.
So its a kind of catch 22.
You have to go thru this process first, before you find out if it was worth all the effort of doing it (ie, to get a decent GP).
You may be rejected anyway.
You may complete the process then find out the GP and the surgery are even worse than the old one.
The chances of getting a GP who is more “ME/CFS friendly” and informed is maybe 50 – 50. Even that may be optimistic.
After just one phone conversation with the receptionist, I was exhausted. Mentally and physically.
And frustrated that she couldn’t understand why this is a difficult process for folk with ME/Cfs. And may be pointless for me, and a waste of their time also.
I tried and tried to explain why it was difficult. But the longer I tried the more exhausted I got. And of course, the brain fog always gets worse in these situations. And I probably just started to sound drunk and confused.
I really need to be a lot more well than I am just now, to be able to do this.
When I was more well in the past – that of course is when I should have put all my energy into doing it.
But I didn’t.
But I will really need to persevere with this now.
I have doubts about the surgery for a few reasons – parking issues, suspect it may be quite a noisy surgery, etc. When my husband collected the registration form he said it looked as though it was “full of Romanians and asylum seekers” . . .
All I could think of was – as long as they’re not noisy I don’t care.
But the GP has been mentioned to me.
And I simply don’t have the energy to phone around various places. It would just be the same process everywhere from what I understand.
(Did try one other surgery but it was outwith my post code.)
At one point this week, I was actually trawling the internet for websites that sell you painkillers that normally require a prescription. But without a prescription. They seemed to be mainly American sites. But I couldn’t go any further with that – mainly because I just couldn’t tolerate looking at the tablet’s screen for long enough. And couldn’t concentrate enough to be able to read or digest the information.
However that was maybe a good thing. As this would seem a rather dodgy thing to do – maybe even dangerous.
But the pain was bad.
Today however, it is much less.
And I’m writing again – even if it is a bit negative.
I will try and do some lighthearted posts, I promise.
Your Jaw Never Gets Tired 