A rant – a Rare Disease Day Post

“Anger is a killing thing: it kills the man who angers, for each rage leaves him less than he had been before – it takes something from him.” ~Louis L’Amour
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As the subject says this post may get ranty … just wanted to warn you, in advance, in case you are expecting my regular fluffly, light and (attempted, at least) humorous witterings.

I got an appointment through, on Friday afternoon, telling me I had a lung function test on the Tuesday; this day wasn’t really suitable, as I had a funeral to go to, but as I didn’t receive the appointment card until the Friday I wasn’t able to give the 2 full days notification of a cancellation/change so when I asked for even just an hours delay (put back to 2:30pm instead of 1:30pm) I was told that it wasn’t possible and I would simply be removed from the waiting list and my consultant would have to rearrange at another date.

So I missed the funeral and went to the appointment … though, at the end, I’m not sure why I bothered.
To start with the reason for the test, as specified on the referral (though I still don’t know from whom) was simply ‘shortness of breath’. I don’t get shortness of breath; occasionally, when suffering from an infection for example, or after exercise, it can be harder to breathe … as in I have to work harder … but I don’t have shortness of breath, or a wheeze, such as with asthma or COPD, etc. What I have is restricted lung function due to diaphragmatic weakness due to a predefined muscle condition or conditions (ie muscular myopathy and myasthenia).

When I queried that reason for the test, asking if it was perhaps from the neurology point of view, they didn’t have any of my background information – at all. They had my name, address and date of birth and the fact that I suffered from shortness of breath.

That wasn’t really a big issue however when being taken through the permission form, and one of the side-effects being ‘fatigue’, I made a joke out of that being a regular occurrence anyway and that I was prepared to be tired/achey for a few days. This was very pointedly dismissed as ‘just a bit of exercise’ and that I should ‘pop two paracetamol’ and I’d be fine.
So, did all the pre-tests in terms of spirometry readings (blowing into the tube repeatedly) then got fitted out for the treadmill part. I’ve done this test before so knew what to expect – nose is pinched, snorkel type fitting in mouth, leads/cables from body and then increasing speed and incline on a treadmill for a longish duration. Not the easiest of afternoons, admittedly, but not the end of the world either. About halfway through the combination of incline and speed was starting to take its toll … I could feel my legs turning to jelly and found it harder to keep my stride / pace fast enough so my feet were getting closer to the end of the treadmill. Supposedly my breathing also went ‘erratic’ at this point (quelle surprise) and I was asked, repeatedly, if I wanted to stop. I, repeatedly, said no and just kept on pushing as hard as I could because that is ultimately the rational for the test. I think that, on the fifth ask if I wanted to stop they decided to stop anyway, regardless of me saying no, as I was told that they had a lot of good information collated.
They stopped the treadmill and asked how I was feeling. I pointed out that my legs were shot, my left arm was shot and my jaw/face was shot … and that my breathing was harder but, all in all, I was ok (keeping in mind my definition of ok equates to not being dead, or in hospital). They pointed out I didn’t look or sound ok.

Anyway, redid the spirometry tests – breathing in and out through a tube, either for an extended period or short/sharp blows, and it was remarked that the results weren’t as good. After exercise my lung capacity, and ability to breathe, was affected; the doctor also remarked that my left leg and hand seemed weaker than before and moreso than my right.

I was then taken to do another breathing test – where I think it is muscle pressure that is tested – and a snorkel tube put back in my mouth and I was told to breathe in slowly then exhale as fast as I could. I did that, and was told it wasn’t very good, could I try harder. I did this a second time with much the same results so was told to try the other way – breathe out slowly then inhale really quickly. Did this to be told I wasn’t trying hard enough and could I try again. At this point I tried again but kinda got confused between breathing in and out and screwed it up and asked if I could try again; so the guy taking the test went off to see doctor then I was called back in.

This is where the ranting starts (yes, that stuff above is ranting):

I was asked if I thought that I had tried my best on the tests. The person taking the final lot thought that the poor results may be down to ‘insufficient effort’, you see.

Now, I pointed out that I had just taken some breathing tests, then run on a treadmill –refusing to stop when asked if I wanted to do so – then repeated the tests again, and then finally had been asked to do a further couple of tests which I had admittedly screwed up on one of them. Now, when I say screwed up I should point out that, at this time, I was having trouble opening/closing my mouth to either put the thing in or worse get it out again … my mouth and cheeks just didn’t seem to be responding as well as before when I wasn’t knackered so the test was physically difficult as well as tiring.

Anyway, I volunteered to do the final test – or any of the tests, including the treadmill – again, there and then, as I was REALLY frustrated by the attitude. The doctor said it wouldn’t be needed as the results had been collected.

… then the kicker came. He said that, in his opinion, my lungs were perfectly fine but the initial results pointed towards there being an issue with my muscles.

NO FRIKKIN’ JOKE, SHERLOCK!

So, not only had it been implied (if not directly stated) that I wasn’t trying hard enough in the tests – when it was actually that I had nothing left to give but still tried my best but the results weren’t what they were expecting – but also that the only meaningful results from the tests seems to be to tell me what I already know … lungs work fine but the muscles around them doesn’t.

I pretty much just got ready to leave then, though admittedly neither the doctor nor the nurse thought that I looked capable or healthy enough to drive, went home and then promptly collapsed on the sofa before, eventually, going to bed. I think that, all in all, I had about 16 or 17 hours prone before getting up again today and STILL feel like a train wreck.
I wasn’t sure if I was angry, frustrated, humiliated, upset or any other adjective to describe how I felt when I left there yesterday – partly due to the inference or allegation of ‘not trying’ and partly due to the result seemingly making the test redundant – but now I think that I am simply tired, physically, emotionally and mentally, with it all.

I know that the underlying cause of the symptoms is rare, and hard to diagnose, let alone treat, but when the medical profession itself seemingly doesn’t know what it is doing, or doesn’t care, then what is the point of doing anything at all in terms of research or treatment? I realise that doctors don’t – can’t – know everything but why should I be forced to go round in circles, in terms of tests and research, and then when I don’t fit the expectations of a predefined output for a doctor I’m suddenly to blame rather than his knowledge or experience possibly being wrong?

Anyway, it’s taken over two hours to type this – that’s how much effort it’s taken due to aching arms and a left hand that would prefer not to open, and normally I can type 2-3 thousand words in an hour or so – but maybe I’m just putting ‘insufficient effort’ into it.

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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

http://www.rarediseaseday.org/

@rarediseaseday #raredisease

2 thoughts on “A rant – a Rare Disease Day Post

  1. I recently came across your site and have been reading along. I thought I would leave my first comment. I don’t know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

    Susan

  2. We’re a group of volunteers and starting a new scheme in our community. You have done a formidable job and our entire community will be thankful to you.

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