We all have our good and bad anniversaries. For me the 4th
of November is a day that brings both good and bad memories. Two years ago I
have met my partner who is such a great person to be with that I can’t imagine
life without. We’ve been through a lot together already and probably my
Myasthenia remains one of the most important tests we had so far. Ironically
the day when I could not ignore the ocular symptoms (diplopia) anymore falls
exactly one year ago when we were celebrating our first year together. Even the
cold I’m struggling with right now reminds me of that time as I was fighting a
bug just before the onset of my MG.
It has been a nightmare since and looking back I still can’t
believe that it’s been an year already. Today things are better, thanks God. My
symptoms are mostly ocular at this stage especially on my lateral gaze which
means that I still see double on my peripheral vision. Basically it’s like
looking through a box and having a limited visual field. Beyond that limit my
vision gets double or blurry (or both). My frontal vision has improved somewhat
since one year ago. I’m not sure what helped to be honest. It could be the
medication (Mestinon 60mg) which I have been taken religiously (except a small decrease of
dosage for a couple of months). I guess that my lifestyle also contributed to
staying healthy as much as possible. Or maybe it is just my body adjusting better than I expected to
the new circumstances.
From eye patch to prisms, from ‘this can’t happen to me’ to
‘I’m strong enough and am going to beat the MG’, it has been an experience for
me. I’m not going to dramatize things here and transform myself into a victim
of an illness which affects a number of people much more seriously than me
(people I had the chance to meet via the Internet through support groups and
forums). Although my symptoms are ocular, on paper there is evidence that my MG
has started to generalize. However I don’t feel too much different compared to
four months ago when the EMG and blood tests have been last performed. So I’m
still among 50% of the people with MG who have only ocular problems during
their first year of illness. According to statistics the rest of 50% develop
more generalized muscle weakness in the first year.
Generalized or not, it’s been an experience I’ve learnt a
lot from. Firstly, I have learnt that I’m a strong person despite the
inevitable ‘downs’ which were more frequent when the symptoms started. I had
symptoms of depression the years before and I can tell that ironically my frame
of mind has considerably improved since I made acquaintance with this illness.
Probably just because there is a balance between the mental and the physical
health and now I have a lot to compensate on a mental level while dealing with myasthenia.
This illness has taught me to step out of my comfort zone
where the growth is (how cliché is that!). It made me reflect more on happiness
– as a choice, death – how inevitable it is, time – running out imperceptibly,
and life – how short it is and how we take it for granted and forget to live it
to the fullest so many times. I needed this traumatizing event which has
stricken me like a lightening to realize that there is no time and space for
drama in my life. There are so many positives things I have discovered by
contrast, including a simple day when my vision is close to normal even if only
when looking straight ahead. And I am so damn grateful for that! Life is like a
short obstacle race which does not give you too much time to reflect and
overanalyse every single step and sometimes all you have to do is to jump. That
is the moment when you realise that you cannot do it without focusing on your
strengths rather than weakness and keep a constant positive attitude. My
confidence has increased dramatically over the past year and I find it easier
to deal with stressors than before. An explanation could be the fact that I
have learned to deal with such a major stressor that everything else seems
quite manageable. I’m calmer, more focused on myself and more receptive to
other people’s difficulties which for my job as a support worker is a blessing.
