Monday, 11 July 2016

The mysterious giggle

Reading over my past couple of posts has made me realise that I seem to have been a moaning misery lately, & that is not me at all!  So today is just a quick post to show the lighter side of MG & share some of the giggles I have had through the tough times :)

Recently I had to go to a GP for a quick consult as I felt like I was coming down with something...
She told me she hadn't heard of MG since she was studying & couldn't remember exactly what it entailed - so I had to give her a quick lesson before she got anything wrong or prescribed me something that I am not allowed.  She also read up info in her little book that she had to ensure she was on top of everything.
I have now learnt to carry little cards with basic information that I give to the pharmacy & new doctor's that I go visit.  Oh the joys of a chronic illness!

I have realised I will never be able to stop taking medication (shake, rattle & roll baby!), & I will probably have to see a doctor for the rest of my life.  Majority of the time I eat my meals just so I can take my medicine & ensure I am getting the nutrients & chemicals I need to survive.  
So when I saw this next image, I couldn't help but giggle.  Who needs money when you can get scripts for life-saving medicine?  Yay!

This final picture was sent to me by a very dear friend who is a nurse at a government hospital.  We only met due to my health concerns, & now I can't imagine my life without her.  She always knows just what to say, & makes me laugh constantly.  She is the most caring person; & going into the doctor's rooms & seeing her there can turn my day around completely (for the better).
She saw the below on a ward chart of a patient, & sent it to me to see if I could make out what the diagnosis had been that the nurse wrote down.

Can you make it out?  Every time I think about it I start chuckling to myself.  As she said, it describes the symptoms of Myasthenia Gravis quite aptly!  We are rather mysterious...

I have had my illness called by many names (my-ass-is-thinner gravis; my-as-ta-hernia gravis; my-ass-theee-nya gravis); but never mysterious gravy as above!

And that's it for today.

Short, but just to hopefully bring a smile to your face as it did to mine.

Thank you for all the love, concern & messages that have been poured out over me during this trying time.  I really appreciate it (& you!)

Friday, 8 July 2016

MG from a sister's point of view

I recently asked my sister to wrote a guest post for my blog, to show another side of MG - that of what the family goes through.

Our very first picture together!

With my sister & brother

MG does not just affect the diagnosed member, but rather the family unit as a whole.
My sister has been there since the very first day that I was diagnosed (in fact I remember squeezing her hand as we were finally told what was wrong with me), & has not left my side throughout this journey.  She has made me laugh throughout & kept my spirits up through the darkest times of my life.  She has researched frantically to see if there is anything else that could help; she has done fundraisers overseas for MG & joined a support group in the UK.  She has never ever doubted me or put me down, but rather encouraged & loved me throughout this entire journey I have been on.

I could not imagine my life without my sister & I am truly grateful to have her in my life.  She is my best friend; my go-to-girl; my own cheerleader & an irreplaceable blessing in my life.  She always makes time for me & seems to know when I need a hug/message.  Throughout my life she has been such an example & someone I have looked up to as a role model since I can remember.

Thank you Katie for taking the time to write this (and for making me cry just reading through it!).  Katie I can't wait to make more memories with you.  You are one in a million xxx

P.S.  My sister is better than yours!

Isn't she just beautiful?

Living with Myasthenia Gravis - My life, as a sibling

Diagnosed in 2004, when Megs was only 15, after quite a few misdiagnoses … initially thinking it was a form of anorexia as she was struggling to swallow so eating VERY little, then diagnosed with depression as she started withdrawing and didn’t speak to us very much and finally we came across Dr Judy Green who instantly diagnosed our precious baby with Myasthenia Gravis and told us we could have killed her, had we left it any longer.  Poor Mum felt dreadful as we had been to about 6 doctors already in the past 4 months and the common diagnosis was “globus hystericus” so the mixed emotions of having a proper diagnosis was one of relief but the severity of that one comment was massive …. Little did we know what lay ahead!

At least Megs was admitted into hospital immediately for further tests and medicated so that we could start seeing some relief for her.  It has been an absolute roller coaster ride ever since but I cannot be prouder of my little sproglet.  She has faced everything head on with guts and determination.  From chemotherapy, major surgery, the list goes on … The doctors and nurses know her by her cheerfulness and something pink as she literally does brighten up a room.

She used to have plasmapheresis and asked for day passes to go shopping or when she was at school, to go to be allowed to matric balls – nothing was going to stand in her way!  She was discharged the day before her 21st birthday after having had heavy doses of chemo, was lying on the couch, feeling dreadful, but pulled herself together as Jane Linley from East Coast Radio had organised The Big Favour for her, so we went to the Sharks match in a stretch limo and then onto Suncoast Casino for a Black and Bling party.

Megs always looks on the bright side and so facing her operation where they were going to remove her thymus gland, I stayed over with her the night before as I didn’t want her to be anxious… we watched America’s Next Top Model and so she decided to model the surgical underwear they provide, to make light of the situation – and is now quite proud of her “cleavage implant” she has from where they cut her ribs.

I have never come across someone who is as positive and makes as little fuss as this little angel.  She frequently can’t swallow and has to toss her head to help the food go down. Speaking is an effort, so has to rest her head so her body focuses on less muscles, yet she oozes love and positivity.  People don’t understand and frequently say hurtful things such as “at least you don’t have cancer” or “you’re so miserable and never join in conversations.” My heart breaks for her as she needs drugs to survive every single day. Breathing can be an effort. Her own body is attacking itself. There is no cure. She relies on hope. Hope for the future that there will be a breakthrough. I want to wrap her in cottonwool and protect her. I want to preserve her positivity and shower it over everybody. I want people to understand and give her a break. I want people to live a day in her shoes. I want people to be patient. I want people to be kind and loving. I want people to feel free to ask if they don’t understand but don’t judge – just because she looks beautiful doesn’t mean there isn’t a war going on inside and she’s struggling. So don’t hurt her emotionally as well – she’s dealing with enough!  She’s been coping for 13 years and it’s not getting easier. I have the greatest respect for her – I would be worn out by now, but she’s going strong and trying to raise awareness and still keeping her chin up!  She is truly remarkable and I have the utmost respect for her – my little source of inspiration.

Monday, 4 July 2016

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.