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

Quick Rant...

We had a long weekend this past weekend - Monday was "Youth Day" so we were lucky enough to be able to stay at home & enjoy time with the family - in my household this means husband, the 2 cats & the puppy.

It was very relaxed, low key & not much happened.

Then why did I go to work today with slurred speech & problems swallowing?

I didn't do anything hectic this weekend!

I slept most of it away, & only left the house for Father's Day on Sunday to be with the family.

Now I sound drunk/stupid/thspecial & have zero energy.

Not sure if it the stress of being back at work after my op; if my MG is just acting up again; or if I am just having a bad day.

AAAAAAH!

Very frustrating.
Yesterday everything was fine - I sounded; looked & ate like a normal person.  Now I go back to work & am around people & embarrass myself.

OK, rant over.

Sorry - just had to get that out!

Have a good evening, keep warm & take care of yourselves xxx

Going Backwards

I am sorry I have been quiet for a while...

As you read in my last post, I ended up in hospital last week Friday on a treatment called Solumedrol.  This is a very high dose of cortisone & is meant to make my illness settle further into remission, or at least make me get some of my energy back & feel slightly more 'normal'.

On Saturday I still wasn't feeling fantastic.  I thought perhaps I was going backwards, but didn't want to admit that to anyone - least of all myself.  I slept majority of the day but this didn't seem to make a huge difference.  My doctor wasn't on duty over the weekend, but luckily the doctor who was knows me & my history, & could see that I wasn't doing well.

It was my mum's birthday on Sunday.  Again I stole all the attention!  (By the way, this is a joke...  I didn't really do it on purpose, & we joke around that I do this for attention - easier to joke & laugh so please laugh with me when I say this.)  Mum came to see me at about lunch time, & somehow with her amazing mum telepathic knowledge, she arrived with some soft foods for me & a big pink cuddly bunny rabbit.

My talking was shocking.  I was really battling to get my words out - if you have ever tried to talk after having gone to the dentist, or with a really large grape in your mouth, this is what it feels like for me.  Well, it is the easiest way to try & describe it to others.  It is difficult for people to understand me, but it is also very difficult to get my words out.  And then I start getting agitated, which in turn makes my talking even worse.  It's a vicious circle of "thspecialness".

And then there was my swallowing...  My talking is always the first thing to go down & that's how I know when I am having a bad day or going backwards.  But when it gets to my swallowing then I  know it is slightly more serious.  I battled to chew & swallow my bacon I had ordered for breakfast, & ended up choking slightly on this.  So that quickly went to one side & I managed to finish a small container of yoghurt before my muscles were exhausted & it was time for a nap.  When mum arrived at lunch time (just as my drip was finishing), I had just taken my medicine & I usually have to wait at least an hour before eating anything as the medicine helps my muscles remember what they should be doing.  So we sat trying to talk & celebrate her birthday until I could try my lunch.  I had ordered a pie with mash & veggies - sounds pretty easy & soft to swallow right?  Wrong.  Mum cut my food up for me & spread the pie sauce in with the mash, but nothing was going down.  It kept getting stuck so I was constantly clearing my throat & coughing to try get it down.  Thank goodness for the baby food mum had brought!  It was just the right consistency & I managed to finish this just before the rest of my family arrived for mum's birthday lunch.

By the way I just have to say here - how amazing is my family that they all came to hospital to make sure I was included in mum's birthday celebrations?  Truly blessed.

My facial muscles weren't working too well either - I looked like I was snarling when I was really just trying to smile.  I couldn't frown, & trying to lift my eyebrows made it look as though I was trying to make my eyes pop out of my head.  It is the weirdest sensation to try & explain to someone.  You think you know what your face is doing, but your muscles are just lazy.  And when you see yourself pulling a face, you realise just how silly you look & that oftentimes you look nothing like what you were imagining.  Surprised, cross, confused, or upset; they all just look like you are devoid of emotion.  And as you all know - I am one big emotional ball!  I wear my heart on my sleeve & often cry for the slightest thing.  So not being able to show other people how I am feeling, or even properly express it, is one of the worst things for me.

We had a lovely lunch with my mum, husband, brother, sister-in-law, nephew & sister (via FaceTime - thank you technology!) but I was finished.  Done.  I didn't even have the energy to sit up straight & keep up a positive front.  I was exhausted, emotional & just wanted to go home to my own bed & away from the hospital.  It was fantastic being able to spend that time with my family & it certainly helped lift my spirits.  My family are amazing.  The biggest blessing ever.  I don't know what I would do without them.

My family at our wedding.

The doctor came for my check up & decided that we should stop the drip.  Due to the fact that it is a high cortisone dose, this can bring on a relapse & this is where she felt I was headed.  In my mind I was scared of this too, but never want to admit that.  I hadn't felt so shocking for about 7 years.

My family left for the day, & husband walked me back to my bed where he helped me in & tried to get me to swallow some water so I wouldn't get dehydrated.  This can happen as I don't like to swallow anything extra when I am battling.  I got a wonderful surprise when my friend arrived to check up on me as well.  We chatted amongst ourselves for a while & they really helped lift my spirits again.  Thank goodness for friends, family, & my amazing support system.  Without them I think I would have fallen apart a very long time ago.  I am so lucky to have them in my life to lift me up when times get tough, they carry me through the terrifying times & support me through all this nonsense that has been thrown my way.  I know I am not always the easiest person to live with or to understand at the best of times, but there are some real gems in my life who have stuck by me through thick & thin, & have still loved me.

Warren & Miranda

I fell asleep that evening almost as soon as everyone had left & woke in time for dinner - which again I couldn't swallow.  I ate the gravy of the stew & some mashed butternut.  It wasn't a lot, but I needed to keep my strength up somehow & need some nutrition!

I slept straight through the night & the next day my drip was taken out.  They increased all my medications - I have gone from 4 tablets a day to 20.  This is still not too bad as I have been on many more than this, & I would rather rattle when I walk (from the meds) than go back to where I was with regard to my MG.  Monday was a constant improvement, & by Tuesday morning I felt almost back to my old self.  I was still a bit weak but that is probably from being a lazy bum staying in bed & not eating properly.  My doctor discharged me & I am now at home healing & getting stronger.  I am only allowed back to work next week Monday as I need to build up my strength, take things easy, sleep lots & allow the medicine to kick in properly.

I can honestly say that I am feeling one hundred times better than this weekend!  I was petrified & thought I was heading for crisis, but thanks to my fantastic doctor, the care at the hospital & all the prayers, I know that things will only improve & soon I shall be back to normal.

Our only concern now is having a baby.  The medication they have started me on can cause major birth defects & miscarriages.  Thus we cannot think about having a baby until I am off this medicine.  This has really broken my heart, as all I have ever dreamt of is being a mum.  Warren & I have spoken about having four kids & growing our family.  I feel like this is all my fault as if I wasn't sick I wouldn't have to be on this medicine, & then we could start our family immediately.  I want a Warren Jr running around the house like a hooligan, & a Megan Jr to play dolls with & plait her hair.  I want happy healthy children.  I know there are other alternatives & we are hopeful that I will come off this medicine & then can start trying for kids again.  But right now it is consuming my mind.  It is all I can think about.  I see all my friends falling pregnant & having babies, & I want that to be us!  I am ashamed to say that often the little green monster in me comes out - although I am very happy for them, please don't get me wrong.  All babies are a blessing & I am hoping that our day will come.

For now, I am sitting; waiting; healing; believing.  Every day gets a little easier & better with regard to my health & the magnitude of the consequences thereof.  And I have my cuddly pink bunny rabbit from my mum - because we all know that pink makes you feel better & happier!