No, honestly, I’m sick

Tell you what: it really sucks having a mystery illness.

I’m writing this not as a literary exercise, or as a cry for help, or pity. I’m just setting it down in case it’s of use to someone else some day.

I’ll hopefully be around for a while yet, albeit with an as yet undetermined quality of life. But just in case something awful happens, or my condition deteriorates to the point where I can no longer concentrate or type, I’m doing my bit for medical posterity while I can.

Background

I first noticed something wrong in early 2016 (although the origins may lie further back). My breathing was a little short, my swallowing a little more difficult than usual. And I noticed that if I exerted myself for more than a few minutes – for example, by walking fairly fast, or swimming – I felt a clamminess. This was all very odd, because while I’m no Usain Bolt, I’ve always kept reasonably fit. At first, I put it down to a bug; but if it was a bug, it was a persistent one. Things continued like this for a few months.

When I realised it wasn’t going away, I decided to try to fix it with a week in the sun. So I picked a quiet resort on the north side of Malta, saw the sights, and made sure I swam at least twice a day. Sure enough, when I got back, I felt a little better.

But before long, the symptoms were back, worse than before. It was still just an annoyance rather than a huge worry, so I put off my first trip to the GP until about October that year. He didn’t have much sympathy, and sent me away with a prescription for sleeping tablets.

Things slowly worsened.

Then, one morning in May 2017 after an admittedly sizeable bender, I woke finding myself having serious difficulty breathing. Just getting out of bed made me sweat profusely. For the first time, I realised my problem might be serious and that I might not have much time left. A worried friend called an ambulance, and the paramedic concluded that yes, there was something fairly wrong with me, and it had been exacerbated by a panic attack. I recovered fairly fully, but now I had the ammunition to face the GP again.

Finally, in October 2017, after a grim battery of tests involving thousands of electric shocks and needles being jammed in my eyes, I finally got a provisional diagnosis – myasthenia gravis – and a recommendation of treatment. There’s a decent explanation of myasthenia here, but essentially, it’s a rare immune system disorder whereby your antibodies start attacking your neuromuscular junction – the chemical link between your nerves and your muscles. It’s rarely fatal, and usually improves with the correct treatment. As I had imagined being afflicted with every malady under the sun, few of which offered much of a lifespan beyond 18 months, this came as something of a relief.

And then, a few days later, a stressful incident in my personal life triggered a major crisis and I had to spend 11 days on a stroke ward. It was never quite life-or-death, but it was not a time I am in a hurry to repeat.

After another relapse in December I was back in hospital again, albeit only for three days this time.

And despite my treatment, things continued to worsen. I’ve since had another stay in hospital and been signed off work sick for a month.

Symptoms

The watering eyes were sporadic to begin with, but are now more or less constant, and worse when I go outside.

The double vision strikes intermittently. Some days it’s almost all day, others only when I overreach myself (say, by making the bed). Each eye functions well enough by itself – if I put a hand over one, the other sees OK – they just won’t work/focus together. Although when the waterworks strike, obviously a veil falls over everything.

For a good while now, I’ve had more or less constant “thin skin”. I start bleeding spontaneously from various places – mostly my head and my penis – and it takes for ever to heal. These symptoms may be unconnected to my main condition, or they may be a side-effect of the drugs I’m treating it with, but they do not exactly add to my overall aesthetic appeal.

The pins and needles and numbness are a relatively new addition to the list. They’re mostly down my right side, and vary in intensity, but are constant, and make it difficult to type and to manipulate small objects. Also, constant pins and needles are not generally a great sign.

More worrying is the constriction in my throat – maybe the muscles there have relaxed – and the constant secretion there of phlegm, or mucus, or something, which means that I keep having to clear my throat, or swallow, or cough, but it never eases the discomfort for more than a few seconds. It feels as though my larynx and pharynx and nasal passage have partially melted. It makes breathing difficult, it’s unpleasant, distracting, and not very attractive. Sometimes, when it gets really bad – usually at night – I can have choking episodes. It was one of these that triggered one of my hospital visits. (Apparently this is the most dangerous of my symptoms, at least in the short term. In the long term, there’s a greatly increased risk of heart attack and stroke.)

Another side-effect of the constant secretion is the burping. I probably eructate at least once a minute now (just to add to the general package of sexiness).

Within minutes of stepping outside and walking, my nose starts running. It was intermittent to begin with; now it’s every time.

The most debilitating, life-altering part – and ironically, the least visible, least credible part – is the weakness and fatigue. After an action like bending down to pick up a dropped sock, or a five-minute walk, or climbing a flight of stairs, a chill sets in. A clamminess. I’m a breathless puddle of sweat. My breath becomes short, I become dizzy, wobbly, and have to sit, or better lie, down.

In some ways, it feels as though I am constantly about to “have a whitey” – pass out from drinking too much. But the best comparison I can think of to describe this sensation is the feeling you get after a powerful orgasm. (This may only apply to the male orgasm, as I have yet to experience a female one.) Utter listlessness, instability, the inability – and unwillingness – to do anything. Which is bitterly ironic, as vigorous sex is just about the last thing I can contemplate managing.

If walking is unpleasant, running, jumping and dancing are now an impossibility. (One of the quirks of my condition, apparently, is that exercise is not a good idea. It stimulates the immune system and leads to faster degeneration of the nerve-muscle boundary.)

When I’m tired – which, as we’ve established, doesn’t take much – navigating obstacles or corners and walking downstairs can be quite hazardous. Every few steps, one of my muscles – in my thigh, my calf, or perhaps one of my core muscles – will simply fail to obey the command my brain is sending it, and I will stumble, or slip, or lurch to one side. I can never tell when they’re going to strike, although Murphy’s law dictates that it will usually be when I am passing a hulking racist in the street or trying to squeeze by a mother tending to the child in its pushchair. I’ve only fallen over three times so far, but the close calls are becoming more frequent. I can still walk unaided – albeit not far – but at the current rate of deterioration, I’m not sure how long I’ll be able to say that.

There are good days and bad days, as you’d expect. But the good days are becoming fewer and further between, and the bad days are rapidly getting worse. On more than one occasion now I have been shaking too much to brush my teeth, or eat a bowl of soup.

These things are all unpleasant enough in themselves – individually, some are just nuisances – but cumulatively, they’re horrific. My quality of life is through the floor. I can’t manage more than a few basic tasks per day – shaving and doing a load of washing will wipe me out for half an hour, and don’t even get me started on making the bed – and it means I don’t have any headspace to think about anything else. I have to concentrate so hard when I’m walking now – to make sure I keep in a straight line, and to process the pain, which may or may not be related to the myasthenia – that I can no longer draw up a mental list of what I need from the shops, or remind myself to call Mum.

Overall, I can safely say you can have no idea what it feels like unless you’ve had it. I’ve never felt anything like this before. If you can imagine constantly having the flu, being drunk and having a hangover at the same time, all the while being colossally unfit … maybe you’d start to get close. I would say I wouldn’t wish it on my worst enemy, but I’ve got a couple of pretty awful enemies, and I’m vindictive like that.

What affects it

Drinking definitely makes things worse. Like, appreciably worse. It took me a while before I confirmed the correlation, and a while longer before I admitted it, but now I am avoiding all alcohol except for very, very special occasions.

And wouldn’t you know, getting a good night’s rest, and avoiding stress, seem to ameliorate matters too. If I sleep the full eight, and don’t spend hours at a time fighting Nazis on Twitter, I can feel something approaching normal again. At least until I get up and attempt a minor household chore.

Why I’m not convinced it’s myasthenia gravis

… or that it’s “classic” myasthenia gravis, if there is such a thing. Or at least, that it’s only myasthenia gravis.

This is not to devalue the sterling work put in by all the doctors, specialists and registrars who have prodded and probed me – they’ve never been anything less than kind and respectful and professional, and I’ve no doubt, barring the guy who deliberately and sadistically wrenched a needle out of my face during my neural conductivity test, that they have followed procedure to the letter.

What I have is definitely in that ballpark. It’s in the family of immune system disorders that afflict your neuromuscular junction. But immune disorders are a big and relatively poorly understood family of illness. There are five salient factors that lead me to question whether the diagnosis is completely correct, or whether it alone is sufficient to explain what is happening to me.

• Of the three specialists I have seen, none is 100% convinced of the diagnosis (hence, I assume, my referral to multiple practitioners). My test results were all over the shop: they pointed in the general direction of myasthenia, but none was conclusive. The rogue antibody that they identified was only recently discovered and is relatively poorly understood.
• Many of the symptoms listed above are not normally associated with myasthenia (watering eyes, outbreaks of sweating after small exertions). Additionally, some of the predicted symptoms are absent. I haven’t, for example, developed the droopy eyes or mouth yet.
• My symptoms did not respond positively to the drug pyridostigmine, as they are supposed to. All it did was commit me to the toilet – or occasionally, when I couldn’t make it in time, to a jug in my room – for about four hours a day. (Thankfully, I’m off it now.)
• Myasthenia is, as far as I can tell, mostly genetic in origin, and there’s no history of it that we know in my family.
• As a rule, myasthenia is supposed to start off bad and improve with treatment and with time. My condition is doing the exact opposite: the symptoms started off very mild and have grown worse with each passing week.

Treatment

I was originally prescribed quite large doses of steroids (prednisolone) to suppress my immune system and pyridostigmine to help with the symptoms. The steroid dosage is being reduced to a bare minimum (because long-term steroid use is not recommended) and, as mentioned, I stopped the pyridostigmine. There’s a veritable Boots-ful of other drugs I have to take, but they’re mostly supplements and things to mollify the side-effects of the active drugs.

Life with an invisible illness

The worst thing about all this? When you have a rare neuromuscular illness without any obvious outward symptoms, and you can basically just about function, no one fucking believes you. Even in this era when mental illness is beginning to be taken vaguely seriously, invisible illnesses are still … well, invisible.

Never mind that some of the leading specialists in the land have subjected me to endless barbaric tests and confirmed my diagnosis twice over, or that I’ve spent the best part of two months off work and another month in hospital; if I complain about feeling indescribably awful, I can see the look in people’s eyes. Bless, he’s feeling a bit peaky. He’s malingering. Or, worst of all: he’s hung over.

(I blame the casual use of hyperbole in everyday life. “I feel like death warmed up”; “I feel like shit”. Trust me, mate, you have no idea what it is to feel like shit.)

I can be valiantly doing the washing-up with a houseful of guests, feeling as if I’m about to die, and no one will notice and therefore offer to help. I even had one cunt accuse me of faking my illness to gain sympathy. No, we’re not friends any more.

So?

I’ve jacked in the booze, I’m eating healthily and avoiding stress wherever possible, and I’m following the specialist’s instructions to the letter, but I’m still going downhill. I’m sweating buckets right now, just sitting here typing in temperatures of 19C, and after this I’ll probably sleep for 16 hours.

I’m off work again, and I’m about to spend a fortnight in a peaceful wilderness retreat (assuming I can get there) in a last-ditch bid to slow this fucker down. If that doesn’t work … I don’t know. I think I’d rather have a fatal myasthenic crisis than get to a stage where I need round-the-clock care.

Anyway. Like I said. If any of this helps someone else with a similar condition identify what’s wrong with them sooner, it will have been worth it. I’ll post more details of test results, antibodies, etc later, when I’ve got the energy to go through my copious notes.

Hope to see you all around.