When my partner has first read my introductory post thought that my feelings in relation to my illness did not transpire very well
in my writing. It might be true as I usually tend to detach myself
emotionally when an experience becomes too overwhelming. And somehow I managed
to reflect this by writing here more about facts than feelings so far. But like
any other physical illness, MG certainly goes hand in hand with a variety of
feelings most of them negative.
First I was feeling very confused about the unusual
sensations in my body especially my sight which bothered and continues to
bother me a lot. This was a lot to take for someone who has never had any
serious illness and has never been on any kind of treatment. As it took few
months to be diagnosed I spent all this time wondering what was wrong with me.
I’ve been waiting for doctor’s letters and results for different tests more
than I have ever waited for my Christmas presents. And if someone asked me what
I wanted for Christmas last year probably it would have been a diagnosis – a
name for what I was experiencing, just to know for definite what I am dealing
with and eventually get some treatment which would hopefully make me better.
I am a naturally born anxious person so it was not too difficult
to build up a great deal of anxiety which culminated with some panic attacks
shortly after the onset. I was completely terrified of what was happening to my
vision and couldn’t stop thinking about the worst scenario. It could have been a
brain tumour, multiple sclerosis or … death. I was feeling that something died
in me and I grieved a lot over the person I used to be. I missed my old self
and still missing it a lot… There are so many things we all take for granted
and one day we don’t have them anymore. That is the moment when we realise how
much we missed these things which we are probably not grateful enough for.
Grief and sadness shortly developed into depression which hits me every now and
then (about once a week at this stage). I am not diagnosed with depression and I
don’t have any treatment for it as I haven’t disclosed my feelings to anyone
except my partner and some close friends. And believe it or not I am working
with mental health problems so I should know better than anyone that I am
playing with fire…
The fear is always there. The fear that things could always
get worse. That my MG might get generalized one day. That I won’t be able to
look after myself. That I would be a burden for others. That I have to leave my
workplace which I enjoy so much. That I won’t be able to travel. And the list
goes on and on... I hardly can go back to sleep for instance if I woke up in
the middle of the night with my arm or leg numb. It could be the next phase of
the illness when my limbs will get weak! Or maybe I’ll stop breathing… I sometimes
feel short of breath and I can’t tell if that’s because of the tiredness,
anxiety, side-effects of the medication or my muscles getting weaker. I’m
always over-alert and I am aware that I am probably too conscious about all
these new sensations in my body.
Physically I don’t feel any major changes except my vision
which went completely berserk over the last four months. Double, blurry, or
both, variable with distances… So variable that it may be normal for one minute
(most likely if I’m looking straight ahead) and then unfocused again. So
variable that I’m sometimes afraid that people would think that I’m making it
up or something. The truth is that I can’t cope without an eye-patch at the
moment and this took me quite a long time to get adjusted to. Not that it
wasn’t helpful but somehow it was like a disclosure of my disability. I was
feeling so embarrassed wearing it and people staring at me all the time (or at
least that’s what it felt like) but it proved to be helpful in the end and it is
one of the few things that help me at this stage. Obviously I struggle with the
depth perception and my balance is not so good as it feels like I’m drunk most
of the time (some days worse than others)…
But at least I am not feeling guilty. Some people may have unhealthy
lifestyles which lead to illness and they bitterly regret after. I tried and
still trying my best to keep a healthy lifestyle with a healthy diet and regular
exercise, no smoking or drinking (not even coffee), spending my time
meaningfully and productively. And I hope that all these things – which I
appreciate more than ever – will eventually help me to get through this
nightmare…
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