Wednesday, 29 July 2015

Trip and Treatment

Hello again, my lovely loves!

Finally a full blog post (gasp!), whatever next? This post is going to fill you in on my first trip out of the house in 10 months of being housebound.
I should probably say (before you get excited) that it was an emergency doctor’s appointment, not a merry jaunt with cake and ice-cream, and that unfortunately it’s left me rather knackered as a result.
Its also left me in a bit of a predicament, because my doctor did not behave how I was expecting them to.
Just in case someone tries to cite the following story in some kind of “those bastard lazy doctors” article that seem to be so popular with the government at the moment, I’d just like to say that I think doctors, as a rule, are great people. 
They’re smart, they work insane hours at what can be a pretty thankless job, and I believe, deep down at heart, they all want to help people. 
That is friking amazing. 
(Also, to the government, stop giving large corporations tax breaks and start pumping more funds into the NHS, because the country needs it. Oh, and go to a proper A&E if you’ve had a fall, Michael Gove. Ta.)

Now to my story. Two months ago I thought true tragedy had finally struck. Despite all my loss and pain, nothing could prepare me for it… I thought that I had become allergic to hummus.
Gripped with terrible stomach pains, I writhed, and cursed both the heavens, and the humble chickpea.
IBS is a cruel mistress, but I had always managed to placate her before, so, armed with hot water bottles and Colpermin, I tried to wait it out.

Unfortunately, this was no ordinary IBS flare. I’ve had fairly painful flares before, normally when I’m stressed, or already feeling under the weather, but this was agonising right from ribs to pelvis. Gut pain, stomach pain, back pain, the whole kit and caboodle, and eating just seemed to make it worse.
Just over a week in to the pains, and eating the blandest and least-gut-irritating foods possible, I admitted defeat and called the doctor. We shall call this doctor, Doctor A.
Doctor A was very sympathetic. They ran through some tests (using Mum’s excellent courier abilities), concluded that it was probably IBS, but if the combination of Buscopan and Gaviscon didn’t stop the pain in two weeks, then there was a possibility I would have to come in for some more tests.
I’m going to save you some time and tell you right now that it didn’t work.  If anything the stomach and back pain was getting worse after two weeks, and I had lost half a stone.

Doctor A now had a dilemma. They knew that I was housebound and that coming into the surgery would be very difficult for me, but at the same time, pain and a lack of food was slowly draining me and there was a chance that I could have something nasty.
They compromised; made an appointment for me that day, but also offered me an empty office to rest in if I could make the journey, and respected the fact that there was a chance I wouldn’t be able to make it. The surgery would take some blood tests and try and get things sorted for me.

So. After 9 months of not leaving the house you can imagine I was rather nervous about the journey. The four miles to the surgery suddenly seemed like a marathon, and I knew that going would take it’s toll. As you guys know, that’s how ME works. Activity costs energy, and that causes Payback. 
But I couldn’t eat without it hurting and if I left it longer there was a chance I would just become weaker from the pain and then have to make the journey. Better to risk it now, while I still had some reserves, than later when I might not.
Mum called the specialist nurse at the local NHS ME/CFS unit for advice, and she agreed that going to the surgery was the best course of action and set about giving us some tips to help.
Marathon it was.

Travelling in the car doesn’t seem like a big deal to most people, but there’s a surprising amount of work your body and brain is doing when you’d consider yourself essentially “doing nothing”.
There’s the visual and auditory stimuli of the world rushing by, and your brain has to work pretty hard to comprehend that information as quickly as possible, so your body can anticipate what’s going to happen. That happens automatically, even if you’re not driving.
There’s also the sounds of the car itself, and all the muscles in your body that support you in a seated position.
Finally there’s the constant changes your body has to make for you to deal with the shifting movement of the car to make sure you don’t lost your balance. This is especially true if you live in the middle-of-nowhere, Norfolk, and driving across country is vaguely reminiscent of driving across an extremely large, lumpy duvet.
Unfortunately, all of these things are things people with ME/CFS struggle with (balance, muscle strength and stamina, processing auditory/visual information) so it was going to be significantly more of a challenge that it would appear, especially given my normal routine.

In order to get me to the surgery I had to lie prone on the reclined seat, swaddled in a duvet (to help me move with the car and reduce the need for those muscle movements), wearing an eye mask and industrial ear defenders, and listen to a relaxation tape to keep my adrenaline levels as low as possible.
I also had my wheelchair-with-a-head-rest, Gavin, and an extra neck pillow to get me to and from the car. (Gavin may be many things, but able to comfortably support my head and neck is not one of them.)
The ME nurse also suggested I stay in the empty office for a rest after the appointment before attempting the journey home.

I actually did quite well on the journey into the surgery. Obviously, I was knackered when we got there, but I knew I would be and was prepared for it, and I had actually managed to keep really calm and relaxed about the situation, and felt like I would be able to manage what I had gone there to do. So far, so good.
After I managed to get into an empty office (the one Doctor A had suggested on the phone was occupied by a very surprised chiropractor - sorry, dude), I was able to lie down and continue listening to relaxation tracks with my ear defenders on until Doctor B arrived. 
Doctor B is a doctor I’ve seen a couple of times before. They’ve spoken to me about my ME/CFS, provided medical notes, and done a home visit, so, even though I was expecting Doctor A, I was pretty comfortable. 

Doctor B asked me a few questions, poked my stomach, and then told me that my serotonin tablets (fairly commonly prescribed to CFS patients) had slowly been making my body more acidic, and that over time that had been putting strain on my stomach lining and had given me Gastritis. That was the reason my IBS had flared. All I needed was some pills to take with my serotonin pills and I’d be good to go.
I was a bit surprised that there apparently wouldn't be any tests, but to be honest, having something that has an answer in pill form is a bit of a novelty at this point, so I was pretty chuffed about that.
It had meant that my marathon to the surgery was completely unnecessary which was incredibly frustrating, as I'd still have to deal with the aftermath.

Pushing that aside, I thanked Doctor B and then asked if I could stay in the empty office for a few minutes to rest before I went home.
Doctor B smiled and said that it was a very nice office, very calm, and they wished they could stay in there too. Me and my parents laughed.
But, said Doctor B, no, they didn’t think I should stay in the office.
We stopped laughing and I clearly looked confused, because Doctor B continued, saying that they thought I would really feel the benefit if I pushed myself more.
As you may recall, “have you tried pushing yourself more?” is in my list of what not to say to sick people (mainly because it is literally the opposite of what helps), and I was really, really not expecting my doctor to say it. Because Doctor B is a doctor. And they’re kind of meant to know that pushing yourself when you have ME/CFS causes Bad Things to happen.
I realised that the nice office comment hadn't been to make me feel more comfortable about asking to stay, but a veiled way of saying another phrase on my list of what not to say, "I wish I got to do nothing all day".
I also remembered how surprised Doctor B had looked to find me so ill on their home visit. Their completely unannounced home visit. Hmm.

I made a stab at defending myself and said that I had already pushed myself quite a lot that day, but Doctor B repeated the need for me to push myself, and said that I wouldn't be any more tired of I went home straight away than if I rested first. (Another stellar misunderstanding of how ME works. Usually runners rest between marathons.)

At this point I just wanted to leave. I knew that if they weren't going to let me stay in the office to rest, I'd need whatever energy I had left to make it home, so there was nothing to gain by arguing.

Doctor B made a final comment about getting me to see a hypnotherapist when I was feeling a bit better, to "sort me out". Again, they seemed surprised when I said I was already seeing one.
My parents were too shocked to say anything (and they prefer to let me handle my appointments where possible anyway), so, exhausted and feeling thoroughly blindsided, I made it out of the office in my chair, and as far as the car before I burst into tears.

After a rest in the car park, and a tearful journey home, I had an early lunch and spent the remainder of the day resting as much as possible to try and minimise the Payback I knew was coming.

That one journey has cost me between two and three months of progress, not least because I now have to work out what do with a doctor who seems to think, at best, that I'm too frightened of decline to try to recover, and, at worst, thinks I'm exaggerating my symptoms or that a fair proportion of them are in my head.
This doesn't seem like a massive deal, there are other doctors in the surgery, but Doctor A is part time, and the only doctor that does home visits is Doctor B.
If I left things as they are I think it's fair to say Doctor B would never agree to a home visit again (mistakenly thinking that if I was able to get to the surgery in an emergency once, there's no reason I couldn't do it again) and I would be forced to lose a couple of months of progress every time I needed to see a doctor.

It is, of course, possible that Doctor B was just having a bad day and didn't think, so instead of a formal complaint I've written a letter asking their thoughts on my disease and explained my situation further and the decline the appointment has caused.
They'll either accept my assurances that "my fear is never greater than my desire to get better" and that exaggerating my symptoms would make it "impossible for me to look myself in the eye", or they won't.
And if they won't, I may have to risk another surgery.

I'm not going to lie: this last month has been tough. The increased symptoms that come with Payback are always difficult. My stomach is slowly healing and I'm able to eat again (thank god), but a lot of the freedoms I had gained and grown used to (reading small sections of magazines or actual books, not having energy drops before meals, being able to shower every other day) have been lost as I try to make back the energy I used.
But perhaps lost is the wrong word, because even though the doctor might not believe my insane amount of resting does me good, I know it does.
All those things aren't lost, they're just temporarily misplaced. And as much as I hate that I have to go back to a few months ago and painstakingly build up to them all over again, I know that I can.

And there's always one thing that keeps me feeling bright even when I don't think I can handle another extra, extra early night, or missing another shower... at least I’m not allergic to hummus.


Wednesday, 22 July 2015

The Return of Standby Hedgehog

Hello again my lovely loves,

Another short post I'm afraid, just to let you know that I haven't wasted away (we found out what was wrong stomach-wise, so I'm finally back on normal food again), and that I'll do a proper post as soon as possible.
There's quite a lot of official documentation/form-filling in going on at the moment, so I'm not sure when that'll be exactly, but I know what I want to write about so that's half the battle won ;)

In the mean time, Standby Hedgehog will keep things cool, and lead you in a hearty rendition of a song of your choosing.