Treating a set back like an experiment

So it’s happened again – just when I started to feel completely unphased by my myasthenia gravis I’ve had a set back. This is the way with a condition that fluctuates but it doesn’t make it any less annoying. 

Two days before I was due to go on a relaxing break to Spain my right eye starting playing up. I had a good night’s sleep and it seemed improved but then, the day before I was due to go, I had a later night than expected and woke on my first day off with a bad case of ptosis – dropping – on my right eye. 

My ptosis is usually mild now – a slight droop which is annoying – so I’d forgotten what a bad case feels like. I count a bad case as when my eye lid is almost or completely closed. No matter what I do it can take days or weeks to right itself and in the mean time it makes everything a bit more of a challenge. It means:

  • looking anywhere other than down becomes problematic – looking straight ahead there is double vision as the right eye tries to adjust with a more limited field. This means I spend most of the time with my head tilted up and have more problems getting around
  • having conversations becomes challenging – you can’t really look people in the eye because when you try their eyes move around their face. Oh, and you over-analyse every look of your conversation
  • the eye lid feels really heavy and is constantly uncomfortable – I used to wear cotton patches during these times for comfort. It’s not great when working in front of a computer screen all day

I’m fairly sure that I’ve run myself down in the build up to the holiday – taking on too much and not giving my body the rest it needs. Then there was the sharp change of climate and routine which probably didn’t help either. 

Rather than waiting in a depressed stupor for things to return to ‘normal’, I’m taking a scientific approach. I’m testing out the impact of different things and will hopefully have more knowledge about how to treat myself next time. So far I’ve tried:

  • Sleeping longer than normal – on holiday I had between 9-10 hours sleep a night. This is more than the  7-8 hours I get normally. This seemed to make it worse rather than better.
  • Cutting out alcohol – after a break from booze, I had slowly reintroduced it to my routine and was having at least 2 drinks a day on holiday. Over the next week I’ll be removing alcohol again to see if it has an impact
  • Upping my steroids – I’ve upped my steroid intake from 2mg to 3mg and hoping that extra tablet will help. If I don’t see an improvement over the next few days, I’ll increase it again
  • Eating healthier – while I didn’t eat a lot on holiday, what I did eat wasn’t particularly healthy. I’m on a detox this week to aid healing including keeping it simple with just lean meat and green veg and lots of lemon water
  • Cut down on caffeine – before I went on holiday, I was drinking more coffee than I ever have. While away, I cut down to 1 cup a day and I’m going to try to keep a reduced intake now that I’m back
  • Rest – on holiday I did very little that could be described as ‘active’ for the first two days. I then slowly reintroduced exercise – gentle walks and relaxed paddle boarding. Now that I’m back I’m going to do less exercise than normal this week 
  • Heat – unlike many others with MG, I find heat from a sauna, bath or weather works well for my body. Now that I’m back in an Autumnal Scotland, I plan to use the sauna every few days (as I had just before the photo above)

Myasthenia and eye tests

In the three years that I’ve had myasthenia I’ve been sure that my eyesight has been getting worse. When looking into the (not too far) distance I often mistake bags for children, dogs for bags and children for dogs. Yet in that time I’ve never gone for an eye test…why you ask, well I’ve been waiting for my eyes to be ‘back to normal’.

I didn’t see the point of getting them tested until they were as good as they could and would be again. Since the early days of my MG my left eye has been at a different kilter from the right so when I look up I get double vision. I hoped by taking the medication that over time this would correct itself. But it hasn’t and after 3 years I finally bit the bullet and went to get an eye test. 

The test itself was pretty tough – my vision doubled, blurred and I could feel ptosis come on as my eyes during what felt like hours of tests. I left with a lighter wallet and a very droopy right eye. 

The result of tests shocked me a little – anything more than 60cms away from me will start to blur. The optician asked how I had been functioning? In blurs and fuzzy patterns it seems now, any time I take my new glasses off.

What made me finally bite the bullet was the view from my living room. Although I knew it was beautiful, I longed to see the things Elaine described across the Forth in Fife – the distant mountains, the boats on the horizon and the sun setting – as more than just blurs. 

If my eyes do align again it might be that I’ll need a different pair of glasses although I asked that the optician did not put a prism in the glass so hopefully not. I did this because I had one I my previous pair of glasses when the first symptoms came on (which I lost before I was diagnosed). Rather than making things clearer, it made the world feel at a distance and always tilting which as you can imagine made me feel queasy.