Up the hill!

I’ve been planning to write this post for a while but I was somehow reluctant to celebrate the slight improvement of my vision over the past few weeks... It’s been so up and down since it had started that I am afraid to even say that it’s getting better just to avoid the disappointment and all the negative feelings caused by a flare up.

I’ve been coping without the prism glasses mentioned in my previous entry most of the time (even when reading or working on computer) over the past couple of weeks. I feel that my vision is now similar to when my symptoms have started. More specifically, I wake up with a brief episode of double vision which fades away relatively quickly (10-15 minutes) regardless whether I take my medication shortly after I wake up.

Therefore I am not entirely sure how much the Mestinon helps me at this stage as my vision is quite good (unfortunately only when I’m looking straight ahead as on sides continues to stay double). To be honest I decided to skip the last 60mg (I take it only twice a day now) as I feel that I can cope with a reduced dose (and my sexual drive seems now back to normal!). I haven’t thought about stopping taking the medication as there is a chance that all the improvement is down to the increased dosage of Mestinon. I should have probably asked my doctor before reducing the dosage but I haven’t had an appointment yet and they told me to take as much as I need anyway (within certain limits of course).

Actually I did have an appointment which I missed because I hadn’t received any confirmation letters from the hospital. You’d be surprised to hear that I have been discharged for that reason so next week I need to chase this up and register again with the Orthoptics. On the neuro side things are going well. I look forward to a couple of appointments at the beginning of July with the Myasthenia clinic in Oxford. I have quite high expectations from the team of specialists in Oxford and I hope that they are going to clarify some treatment routes next month.

Until then I have a holiday planned in the Eastern Europe over the next couple of weeks. This was initially planned in December last year but as I have been unwell I had to cancel it. Temperatures are quite high in Europe around this time of the year and I am aware that the heat can worsen my condition by weakening the muscles. Luckily I live in the UK where the summer usually does not cause any problems (ah, the proverbial British summer!). However there have been a couple of days last week with temperatures higher than usual which have left me depleted and wiped me out especially during late afternoons. Tiredness caused by some restless nights might also have contributed to that.

However my symptoms seem to affect only my eyes at the moment and after 7 months from the onset I think this is a good sign (I continue to pray and hope that it won’t generalize!). I haven’t noticed any radical change in my muscles and the gym continues to be a very good indicator. I dare say that I managed to increase the weights I normally use for my workout (for both upper and lower body) and I’m feeling in a fairly good shape except occasional dizziness, brief double/blurred vision, twitches, headaches, overall tiredness, mood changes, and feeling spaced out at times. 

So far it’s been a step by step approach with a strong focus on here and now which helps me control better the anxiety around my illness and try not too worry more than I should. I am lucky to work term-time only so I basically have the entire summer off to focus on health and hopefully things will improve even more by September when I go back to work!