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

Symptoms

Today I decided to write about my top 10 symptoms that I struggle with almost on a daily basis.  Remember, every person fighting Myasthenia Gravis experiences different symptoms - some people only get double vision in their one eye, whilst others cannot walk unaided & often end up on a ventilator.  These are what I fight through every single day...

1.  Slurred speech.  Have you ever hard a drunk person trying to talk?  Or someone with a mouthful of food trying to pronounce their words?  That's what I sound like every day from about lunchtime.  People often ask that I repeat myself, or write it down for them to properly understand.  Not only that, but I find it a great effort to actually form each word, so more often that not I will rather keep quiet & send emails if I have queries at work, or rather sms my mum than call her.  This is my most noticeable symptom, & probably my worst.  I used to be a very sociable person & I love chatting to others & getting to know them.  Now I rely on either my husband or family to be my buffer & keep the conversation going whilst I sit back & purely listen.

2.  Chewing & choking on my food.  I LOVE my food!  But I cannot remember the last time I was able to properly enjoy a nice steak, or really any piece of meat besides mince!  I have to cut my food into tiny pieces, ensure I have enough sauce to help it down & focus on chewing every mouthful.  The number of times I have choked on my food & had to literally stick my finger down my throat to pull it back up is unreal.  This is why I stay away from lettuce, peas, sweetcorn & the likes.  I have had a couple of instances where I have started going blue - because my muscles don't work properly I cannot cough the food back up, nor swallow it down; so it just sits happily in the middle of my throat causing numerous issues!  I even had to have the Heimlich maneuver performed on me when I just couldn't get a piece of lettuce down.  Again, this usually only happens from about lunch time, but sometimes on my bad days I even battle through breakfast.  I have found it much easier to eat soft foods, about an hour after taking my mestinon & nearly always add sauce to ensure I can get it down without making a huge spectacle.  Oh & did I mention that I HATE it when people watch me eat??  Oh my!  Must be my worst thing ever.  I know I look weird when I eat - I toss my head to the right to help get my food down; I sometimes have to prod on the side of my cheek to get the food into the middle of my mouth so it isn't stuck in its own little cave between my teeth & cheek; & I usually take over an hour to finish my dinner.  This is amplified when I notice someone watching me, & more often than not I will put my knife & fork down & feign that I am full & don't need to eat any more.

3.  Wonky smile.  I look at photos of me before I was diagnosed.  Photos pre-fifteen.  I had a huge smile that reached my eyes, & it was real.  Now when I try smile I look like I am either grimacing in pain; forcing it or snarling at the person.  I can't help that.  My cheeks just won't lift up, my eyes are tired & it just looks weird.  I love the days when my face looks 'normal' & I look like I did before MG hit.  I will often rather pull a funny face in a photo than have a weird smile captured forever.

Exhausted at the end of our wedding - my eyes were battling to stay open & I had to force a smile.

4.  Weak neck.  As I sit & write this, I have to keep taking a break to physically hold my neck up with my hands.  Lately whenever I bend forward for something my head flops forward to erst on my chest, & does not want to straighten up unless I use my hands to lift it back.  I find it easier to lie on my back to talk on the phone, to read a book and so on - just so my neck won't become all floppy & do it's own thing.  And I can't even try headbanging to music - my head would stay forward & I would have yo jerk my body around to try fit in!!

5.  Walking up stairs.  There are 2 flights of stairs to my office at work.  Every day I walk these up & down at least 4 times.  When I arrive at work, to take a message or parcel to reception, to take paper work to another department, to help with a query, to get a client to sign a document, to go out for lunch, & finally to leave for the day.  To a normal person they would seem like nothing, to me (especially by the end of the day) I call it the "walk of doom" - dun dun DUUUUUUUUUN.  I get to the top out of breath, exhausted, & have to cling to the banister to pull myself up.  There are days I have to physically lift each leg up to make it onto the next step, & when my sister is home she walks behind me & pushes on my bum to help me up - it all started as a joke but when we found it actually helped, she carried on.

6.  Carrying parcels.  Carrying groceries into the house, boxes of paper at work, or my school bag a couple of years ago...  They all equal the same thing.  My hands are not terribly strong, especially not my fingers.  I have lost count of the number of times I have dropped files coz my hands just couldn't hold on any more.  I can feel them getting weaker, but there is nothing I can do except watch my goods go crashing down to the ground.  I try help out around the office or at home, but cannot carry the heavier boxes, or do it for as long as everyone else.

7.  General facial weakness.  By the end of a full days work, I can feel my eyebrows starting to fall down & more weight being placed on my eyelids.  Often I have to push them back up again just for my eyes to be properly open - don't want those men at the office to think I am permanently winking at them!  As I have said before, this also affects my smile, swallowing & talking.  But when my eyes start sitting at 'half mast', then I know it is time to call it a day.

8.  Not being able to exercise.  The number of times I have been told to 'just exercise, you are just getting lazy by not doing anything'; or 'you need to exercise to strengthen your muscles'.  Yes dear, I understand where you are coming from, but us snowflakes have different rules for how our muscles work.  If I were to go to gym now & push through a whole class, I would probably end up in the emergency room unable to move or maybe even breathe.  And that isn't only because I am unfit, but also because if I overwork my muscles they will give up on me.  Or if I overwork my leg muscles, then I have no energy for my arm muscles to work properly to be able to drive my (automatic) car home.  On that subject, I am very blessed to have an automatic car as changing gears is no easy feat - I used to have to put all my weight behind my arm to change to third or fifth so now I am lucky that I can focus on getting to my destination safely & just having to steer.

9.  Exhaustion.  I get tired very easily.  A full days work is it for me - no leftover energy to go visit friends or sometimes even cook dinner.  I cannot have a night out with my friends & then function normally the next day.  I can't spend a day with my friend & her kids then eat dinner with no problems.  And this heat in Summer just about kills me!  I feel like I am melting & it saps all the energy out of me so quickly.  When it is hot outside I have to stay inside our little house, with a fan on & my feet on the cold tile floors.  I am not your normal 26 year old, but that's ok!  I am a snowflake - an individual in my own right & the strength I have today is because of the battles I have fought & made it through.

10.  Writing for long periods of time.  We are so lucky now that we can use computers so readily, & do not have to handwrite everything.  At school I even got special permission for the education department to do my final exams on a computer, as well as with extra time as my hands do not work well for long periods of time.  I have dropped my pen countless times, & sometimes even battle with typing on a keyboard for a full day.  My fingers just don't want to listen to me & go off in all sorts of directions or sit like limp rags at the ends of my hands, unable to do anything.

These are my tough times, but God is good. I have faith that I will be healed.  And I know that I am strong, because look at what I have overcome.  I am fighting a constant battle against a chronic disease.  Every day I prepare myself the best I can & go out ready to try my best & do everything I possibly can.  My body has sometimes let me down (like the time I wet myself out with my sister & mum because your bladder is a muscle too you know!) but it is still going.  And I will not give up!  Snowflakes for the win!!

Time

I haven't written a blog in what seems like forever...  I honestly don't know where time has gone.  Life seems to be so hectic at the moment that I have battled to find the time to sit down & write - without wanting to just fall asleep!

Life is good.  It is hectic but I am strong.  MG is not giving me too many issues, with only my talking letting me down occasionally; and this is mainly only after a long day at work.  My hands are working well, & my fingers don't want to constantly drop things as they did previously.  I haven't choked on any food in some time now (touch wood) & I have even managed to wear heels out in public without my legs collapsing beneath me.  So all in all life is pretty darn amazing!

Work has been very busy, which I enjoy.  It makes the days go by quickly & keeps my brain on top of its game, as well as thinking of other things rather than my health.  We have plans nearly every weekend, with baby showers;  birthday parties & time with family.  I cannot believe it is already August.  Where has this year gone??

I have been continuing with my appointments with Dr Colin (the fertility specialist) & so far things seem to be working.  This last month I finally had a healthy, good-sized egg & I am still taking all the tablets that will hopefully help us to have that baby we have so been hoping for.  My progesterone levels are also higher (i.e. I am VERY emotional!).  

Every month is difficult.  We wait & wait-then good old Penny decides to drop in for another visit.  Silly woman.  I am trying very hard to sound nonchalant about this, but inside it breaks me.  I feel like a failure as a wife.  It is our greatest desire to have a baby.  People keep telling me to forget about it & then it will happen.  Believe me, if I could I would.  But how can I when I have been told I have until the end of the year to fall pregnant before more drastic steps have to be taken?  How can I when every month is a waiting game?  How can I when it seems like every second person I talk to is pregnant?  How can I when it lies heavy on my heart?  How can I when people are always asking us when we are going to have that baby, or want to offer us advice on what works best to fall pregnant?  I know they are probably just trying to help, but it cuts right into my soul every time.  We have been praying over this & I have handed it over to God.  It is in his hands now, & I know that it will happen - in His time.  Mark 11:24 says this, "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours."

The ribbons I made for friends with a tiny snowflake in the centre!

I have so many ideas for different blog subjects that I want to write on, but to find the time currently & get my head around everything is proving to be very tricky.  I will get there & hopefully will get back on track with putting all my thoughts into action!

I just want to take a moment to thank everyone who helped me to create awareness for Myasthenia Gravis during the month of June, the international awareness month for MG.  Thank you to everyone who wore my ribbons, bought my car stickers & taught people something about MG.  I have had such an amazing response & really just want to thank everyone for standing beside me & supporting me in every way possible.  You guys are legends!  I am truly blessed to have an amazing support team & you are the reason I get up every morning, smile & get through the day.  Thank you for your support, for loving me (warts & all) but most of all for helping me to see there is a light at the end of the tunnel.

The car decal I have on my car to try create awareness

Car decal friends & family have bought to put on their cars

I am grateful for the tough times I have been through.  These have helped me to truly appreciate the good times; to live every day as if it is my last; and to be the person that I am today.  I have learnt to trust God completely.  He sees the bigger picture & I know He has an amazing plan for my life!  If I can help just one other person going through a similar issue, then I will be happy.  I am the person I am today because of my MG & what it has taught me.  It has helped me to mature; be more understanding & patient; love others for their differences/individuality; make the most of every opportunity; & also not to take my health for granted.

Our lives were given to us as a gift.  We should treasure every day, & treasure every person that crosses our path.  Maybe we can learn something from them; or maybe we were meant to meet them to cheer them up & help them see the good in laugh. 

So remember, be friendly.  Smile at the grocery packer & cashier.  Take the time to talk to the car guard.  Make friends with your colleagues.  Play with kids.  Spend time with your granny.  Support those less fortunate than yourselves.  You don't know what other people are going through & how much your simple smile or word could mean to them.  And hopefully one day if you are having a bad day, you will come across a stranger who will remind you how special you are & will give you a smile to brighten up your day! 

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!