This past weekend was a tough one. It gave me a wake-up call, a shock &
reminded me that I do still have Myasthenia Gravis – no matter how hard I try
convince myself that I am Superwoman in regular clothing.
We have been quite hectic lately with so much going on –
I work a full day, then on top of that we have been attending a marriage
course; doctor’s appointments an hour away; engagement parties; baby showers;
birthdays; kitchen teas; farewells; weddings and just general life.
I have been determined to have a social life & not
miss out on everything around me; but I think it has just been too much for me. I noticed that my talking was going down last
week, but I thought it was just perhaps because it was THAT time of the
month. It usually does affect me, but
this month was worse than normal, with a definite lack of energy & I was
battling to talk & swallow. I just
felt pap!
There were many plans for this weekend & I was
looking forward to each & every event that I had been invited to. Unfortunately, by Saturday midday I could
feel my body starting to give my signs that it wasn’t happy. I was slurring my words quite badly, &
eating my lunch took me over half an hour.
I couldn’t smile properly & I felt a bit faint. I thought maybe it was just due to the late
night on Friday & fell asleep at our friends’ house whilst “playing poker”.
Sunday was an early start as we were on duty at church
& we are in charge of the breakfast team – i.e. we couldn’t be late! I could feel I wasn’t myself & really
struggled to talk to the patrons that I was serving. My legs felt terribly weak, & I had to
physically pick them up in order to go up the stairs. I couldn’t pick up anything heavy, & when
I did I felt like I was going to drop it almost straight away as my fingers
couldn’t get a firm grip. It was
awful. There is no way to explain it to
anyone, except maybe those who have had a really hard workout & have
fatigued their muscles beyond what is “normal”.
Even that doesn’t properly explain the weakness associated with MG – and
it gets progressively worse the harder you try to just “push through it”.
I also hate letting on just how grim I am feeling. I try so hard to keep a smile on my face
& not let people see my weakness. I
tell my husband & he is also good at helping me & covering up my lack
of abilities at that moment in time. We
tried to have breakfast at church but after what felt like an hour of battling
through, I eventually gave up & had to throw my cold food away.
We got home (with me almost falling asleep in the car –
something that hasn’t happened in ages) & husband pulled our mattress into
the lounge so we could watch movies together & just chill. I don’t think I even lasted 20 minutes before
passing out! I woke up 2 hours later to
have a quick snack then climbed straight back into bed & woke up 4 hours
later – with husband gently stroking my face & telling me I need to take my
medicine as it was already overdue.
I missed out a kitchen tea & baby shower this weekend
which makes me very sad. But at the same
time, I don’t think I would have coped with these events & it would have
ended badly. I honestly feel if I hadn’t
slept away the whole of yesterday I would have ended up back in hospital.
It is so frustrating knowing I am not coping. And that I cannot keep up with “normal” life. I hate the fact that Myasthenia Gravis
dictates what I can & cannot do. I
am worried because I know that CellCept helps me & does make me stronger
& able to cope with life, but then I cannot have children for at least 6
months after stopping it. I have to
decide on my priorities & listen to my body. I need to be strong & healthy to have a
baby, & husband & I have said as soon as I have had a baby I will go
back onto CellCept & build up my strength once more.
I wish I was strong & healthy. I wish I could cope with a full day of work
without wanting to collapse on my way home.
I wish I didn’t have to miss out on major events in my friends lives
& that I could have a normal conversation without people without struggling
to form every word. The struggle of
daily activities is getting to me at the moment & I sometimes feel like
curling up in a ball & having a good cry.
I feel like I am not coping too well at the moment, but yesterday’s
sleep made the world of difference to me.
Perhaps that’s what I need at the end of every week? Maybe I need to slow down & take a step
back from life for a while. I wish that
I could cope with a full day of work. I
wish I could actually talk like I used to – without the slurring, problems,
& difficulties. I wish my hands were
strong, my legs able to walk & my eyes able to close. I wish I could smile a full, happy smile;
& not look like I am snarling at people.
I am trying so hard to stay positive & keep a smile
on my face. I don’t want people to worry
about me, or to simply see me as “the sick one”. What should I do? What CAN I do?
