I am more than MG

Almost 2 months ago I landed my absolute dream job – helping with administration for Rare Diseases South Africa.  It has relit a fire within me & reminded me about my passion for helping others.  It has woken up my brain (it was starting to turn to mush not doing much at home since July) & really made my heart happy.  I feel like I lost a part of myself over the past few years & was simply floating along doing what society expected of me, & I was allowing others to squash me & my dreams.  I allowed negativity into my life & was more focused on the “sick” part of me, without realising I needed to take care of myself as a whole!

Last week we travelled to Stellenbosch for RareX (an international conference on Rare Diseases – the first of its kind to be held in Africa) & I feel like I really learnt so much.  I met people from all over the world; was privileged to listen to speakers from different areas of the rare disease society; & medical professionals, patients & pharma companies were intermingling without any feeling of “not being good enough”.

  

Our welcome to Spier conference centre

The Rare Diseases SA stand with some of our "Rare Bears"

"Support in a Shoebox" explaining MG in simple terms - of course lots of snowflakes, a spoon, a ragdoll, an explanation of MG, & some of my medicine containers.

Although I pushed through long days, was on my feet for hours & chatted to everyone I could; I was happier than I have been in ages.  Every night we had something going on – dinner with friends, a cocktail party, a gala dinner, or just an evening in the bar.  I made new friends; drank wine; danced like a crazy person & laughed until my stomach & cheeks were sore.  My endorphins were out of control & I finally felt like the old Megs was back!  I allowed myself to have fun instead of just being boring & responsible – as per usual.  It was also so amazing telling people I had Myasthenia Gravis & they knew exactly what I was talking about, & could even offer some advice/encouragement.

Shevaun, Kelly & myself on day 1

 I have realised that for so long I didn’t allow myself to have fun because I was so scared of the after-effects on my health; but also I allowed other people’s unkind words to control what I could & couldn’t do.  I realised people aren’t judging me when I start slurring, & friends will always laugh with me – not at me.  I felt like I was floating throughout my time there, & it has continued since I returned home.

With my new friend, Christina, from Kenya

It was a great reminder that Myasthenia Gravis isn’t all there is to me – I am still Megan Toni & I need to take care of all aspects of myself.  It is important to still have fun.  Take time to rest & take care of yourself; but still nurture every other part of yourself – emotionally, mentally & physically.  Make your heart happy; tell jokes; feel free to make a fool of yourself; don’t allow yourself to become a ‘plank’; laugh as often as you can; & make new friends wherever you are.  This will all help bring out the part of yourself that may have completely disappeared over the years of being chronically ill!

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!)

Happiness is...

Going through the last (almost) 11 years battling with Myasthenia Gravis hasn't been easy. I have been down; fought as hard as I could; missed out; cried; given up on occasions; and questioned why this has happened to me.

There have, of course, been many amazing times filled with laughter; excitement; growth; and enlightenment.  Below I have listed some ways in which I have kept up my levels of positivity and made it through.  Maybe you can relate to some of these, or maybe you hadn't thought of going out of your way to look for things to make you happy & lift you out of your current slump.  I am hoping that some of mine will make you smile & perhaps point you in the direction of finding your own happy things!

1.  The Bible.
This book has the answers to every question you could possibly have - plus more.  So often God has spoken to me in my darkest hour through His word.  It has given me hope & pulled me through when I was so close to giving up.  An example is Jeremiah 29:11 which says: "For I know the plans I have for you, declares the Lord, plans for welfare & not for evil, to give you hope & a future."  God wants the best for us, & sometimes we are put in situations to discover how strong we truly are; as well as showing us that we need to give all our troubles over to God for Him to deal with & help us cope.

2.  Happy Song
There is always that one song that gets you going - and if you don't have one, then find it!  It may change from one week to another, or it may be "your song" for a couple of months.  My last few songs have been "Waves" by Mr Probz; "#Selfie" by The Chainsmokers; and currently it's "Shake it Off" by Taylor Swift.  (Watch the music video here & you will understand why!).  It doesn't matter if you don't know all the words, or what other people think about it.  It can be an amazing rhythm or have words that seem to speak to your soul - but most importantly is that it should make you want to get up & dance.  It should make you forget your problems (in my case, maybe I had a day of slurring my speech & feeling really weak) & just want to bounce around the house belting out the tune!  I even have little 'parties in my car' when happy songs come on & dance like nobody is watching - I have been caught by a few of my friends (and probably strangers), but is it not better to be seen having fun than sulking & feeling sorry for yourself?  I think so!

3.  Something pink
This is something very personal but something that has helped me right from day one of being diagnosed.  I ALWAYS have something pink with me.  This is my favourite colour - it is bright, cheerful, the colour of love & most of all it makes me happy!  During all my hospital stays, I usually take my own pillow in a pink pillowcase; or wear pinks PJs; take a pink fluffy toy; or have pink flowers next to my bed.  At one stage my sister tied pink flower head bands above my bed as I was battling to move & at least that way I could still see something cheerful.  In fact my doctor would always know which bed was mine due to this fact, & the one time she came to visit me in ICU & I didn't have anything pink with me yet, she went out & bought me a pink unicorn stuffed toy!  Now that my disease is more under control & I haven't spent as much time in hospital I found I have lost touch with this little bit of happiness, but looking through my bag I still have a pink pen, a pink cover on my kindle & a pink notebook.  And I know when I have to go back next time, I will most probably take my pink bunny with me to keep me company.  Who wants to grow up anyways??

4.  Photos
I take a lot of photos.  I mean a lot!  People used to know that come Monday all the pics from our weekend would be up on Facebook for them to look through, & nobody else really had to worry about taking a camera out with them.  Photos hold a memory of a happy time.  So, often when I was having a bad day & hardly even had the energy to get out of bed, I could look through my pics & remember happy days.  I could look at some & laugh, or send an sms to a friend after remembering an amazing time we had together.  They pulled me through coz I would think about how healthy & well I was at that point in my life, & knew I could fight to get back there once again.  It was also good looking at the pics from when I was first diagnosed; having treatment; or just after my thymectomy - these all helped me to see my progress & how far I have really come in my journey with MG.

5.  Friends (and family)
I don't think I really need to explain this...  Friends are there to lift you up when you are in your darkest place; they love you even when you are unloveable; they call you up out of the blue; they make an effort; & also they make you forget.  They treat you like you are completely normal.  I have one special friend who just seems to know when I am having a bad day & will send me a bible verse out of the blue; or make me laugh when all I want to do is cry; & is teaching me to laugh at myself - as well as to have more patience with myself & my disease.  We haven't known one another for very long, but she just "gets me".  It is so amazing to have those people that you can be yourself with - no acts, or trying to be someone you're not.  I feel it is truly a wonderful thing to have people like that in your life - keep them there.  Work hard on your friendships.  Sometimes you will feel like giving up - on life, on going out, on your friendships & on fighting whatever battles you are in.  True friends won't judge you, & will be there to pull you up & out of the slump you are in.

6.  Reading
I will be the first to admit how big a nerd I am, & that I absolutely LOVE reading.  It transports me away to a magical place; a different world & allows me to escape from any issues I may be battling with.  It allows me to be a normal person, without battles or a disease that controls my life.  It makes me happy; calms me & allows me to live a different life.  Even when I am having a good day & not being "thspecial", I still love to read.  It is something I can do purely for myself.  I can have a lazy day of reading in bed, or a quick 5 minutes before bed.  Try it - you never know how much you may love it!

7.  Furry Friends
Animals give unconditional love.  I can be in the worst mood ever & come home from work to my "kids", & all my frustrations melt away.  Our little dog gives me kisses galore & just wants to play, & our 2 cats rub up against me asking for affection & purring loudly.  They can pick up on emotions & seem to know when you are not happy.  For example the other day I hit my head on the corner of a cupboard door & started crying - one of my cats cried with me & was winding between my legs until I stopped.  It really amazes me, & I cannot understand people who don't like animals or purposefully injure them.  I think those 'people' are really missing a piece of their heart by not knowing the love an animal has to offer!

These are just a few of the things that make me happy when I am down & battling to see the good through my MG demons.  I do still cry & have bad days, but having made this "Happy List", I know now where I can turn to change my mindset & improve my mood.  There are so many more I can add, but then this blog would never end!

If you know me, & would like to add anything else that you know makes me happy, or perhaps any ideas of your own that improve your mood, please comment below.  Lets make the world a happier place, & help one another through the tough times.

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!