The ugly face of MG

It has been a rough couple of months & we have been trying so hard to keep our heads up & put on a smile, but today I am broken.  The straw broke the camel’s back & the tears continue to flow with no way to stop them.

In April I was re-admitted into hospital for my usual plasmapheresis.  I was really not well, & my doctor admitted she hadn’t seen me this bad since my initial diagnosis.  I was unable to talk, swallow & even get out of bed on my own.  The anaesthetist said he would prefer to put me under when inserting my pipes due to the pain, but because I was so bad we could not take a chance with that.  I couldn’t even swallow my spit & really felt miserable.

I was truly blessed to have special visitors every single day of my hospital stay, & constant messages from some wonderful people.  Let me tell you, it doesn’t matter how often you get admitted to hospital, it is never fun.  It is not something I look forward to or enjoy, & receiving that little whatsapp or even a facebook message can change my day completely.  So thank you to everyone that took that time out of their day to contact me & make me smile.

I was discharged after 6 days in hospital & went straight home.  I was feeling amazing & again was blown away by the difference that the plex made to me.  I loved feeling normal & able to do things that a girl my age should be able to do without the huge effort.

Alas, 3 days after being discharged I was already starting to slur my words & battling to swallow.  Within a week & a half I was back to where I was before I was admitted.  I battle to bath myself, dress myself (doing up buttons is really tricky when your hands don’t want to co-operate) & at times even cut my food.  I am exhausted every single moment of the day.

I have always been one to jump out of bed excited for the day ahead.  I love every day & try so hard to be positive & find the good wherever I can.  It is not always easy, but it is something I have set for myself.

Currently I can barely drag myself out of bed.

I am on new medication that could take a while to kick in, so we are praying for results with that.  However after almost 3 months I am still not feeling much different to how I was before I began them.  I will never lose hope but I currently I am terrified.

My Myasthenia Gravis has now developed into a resistant strain – meaning medication that worked for me before is no longer doing what it should.  Hence why the plamsapheresis effects didn’t last as they should have.

My husband has recently relocated for work & I have been lucky enough to be able to stay with my aunt & uncle for the past month.  They are very understanding & do all they can do make my life easier – food goes into the magi-mix so I can eat my “baby food”; I get sent to bed just after 8pm & I am allowed to rest whenever I want to without being made to feel like I am lazy.  It has been so good for our relationship, but it has also reminded me how little I can currently do on my own. 

My talking is terrible from when I wake up, & although there is so much I want to say, I cannot physically get the words out.  It is an effort to talk & many times people cannot understand what I am trying to say.  Once I get flustered or stressed it makes it 100 times worse!

The same with my swallowing & chewing…  I choke on my food every day.  Sometimes I have to cough just to try get the food down.  When I sense that people are watching me, I often put my food to one side or feed it to my husband (thanks babe!) rather than have to answer any questions about if I always eat like that/if I am battling/would I like something else.

I am physically, emotionally & mentally exhausted.  I am not coping, & I cannot put on my strong face today.  I never let people truly see just how bad things are, but today I decided to be honest & let you in to my life.

Once I move to JHB I am going to have to change neurologists (GULP!).  My current doctor is like my other mother & she has been treating me for over 12 years now.  She knows what has worked for me & what has done nothing.  She knows I don’t make a fuss of what I am coping with until I can’t physically carry on.  Going to someone new terrifies me, although I am hopeful that the new doctor will have a brainwave with what may help me & maybe there will be a difference in my life.

The other thing I am terrified about is meeting new people.  Do I tell them about my MG when I meet them?  Or do I just act normal until they start giving me funny looks when I can’t talk?  Do I get husband to explain it?  Should I carry little cards with a basic breakdown of what MG is & hand these out whenever people need to know?  The people I have met so far were so kind & welcoming towards us, but I am scared of how things will change or if I will be seen as “the sick one”.

I am really battling with the lack of understanding being shown toward me currently.  I have been told I am rude for not talking, or that I overreact with what is going on.  I have been told I just need to eat, or have a smoothie if I can’t swallow food (NOTE: if my muscles aren’t working, that means I can’t swallow anything.  Sometimes I even have to mop up my spit coz it won’t go down).  I have been told I need to be more positive.  I have been told so much; & every single word is like a sword through my heart.

I am really trying to create understanding & am grateful for each of you who have shown me compassion, love & understanding during this very trying time.  Thank you to my friends who have cried with me when I am battling, & who have never given up praying for me.  Thank you for understanding when I cannot talk, & for sitting in silence with me or for being the one to chatter away.  Thank you for including me & for loving me, regardless of how “thspecial” I am at that particular moment.

My heart is breaking at the moment. 

I do not enjoy being sick for one single moment.

I hate having to explain myself & feeling judgement from people around me.

Please just love me through this difficult period, & understand when I can’t always join in.

Sometimes all I can do is hug you to thank you for all you have done for me, as I cannot get the words out.  Please know that my hugs are filled with every single word I wish I could say & I am sending constant love to everyone in my life.

Please pray for a miracle. 

Pray for a cure. 

Pray for hope.

Pray that I can feel “normal” again.

xxx