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!!

Faking it

Today has been tough...

Battling with my strength & just found out that I have gone over on my leave for the year - as well as not having any sick leave until 2017.

So many emotions flying around & tried to get them out as simply & quickly as I could.

You ask me if I am ok

I say yes

And smile for you.

I turn to walk away

The smile falls

And I don’t have to fake it anymore.

Inside is a battle

Fighting against myself

Still keeping up a front.

Every day is unknown

Concern and fear

Getting weaker – emotionally and physically.

Know the real me

Beyond what I put on for the world to see

I am a fighter.

Getting through the day

Always trying to be strong and cope

Falling into bed – at last.

Why did this come?

When will it end?

Why me?

Communicating with Aliens

 I have just returned home after an 8 day hospital visit, & boy oh boy am I happy to be back!  In my own bed, with my husband & furry creatures - life could no get much better than this.

I had a slight set back about 2 weeks ago & I just felt like I was slowly being pulled down into my dark hole again.  Rather than risk a huge setback, my doctor & I decided to tackle it early on & go through 5 sessions of plasmapheresis.  All the arrangements were made, more time had to be taken off work & we set off for Durban bright & early on Monday to be admitted.

I went straight into ICU where I was welcomed back with open arms!  The nurses know me by name now & have become like my second family.  We even laughed because I went into the same bed I was in last time - they joked they were going to get a plaque installed that read "Megan Hunter's Bed".  My doctor came to visit me, ordered blood to be taken & then I had to wait for the anesthetist to come to put my pipes in.  The nurses battled to find a vein to put a drip in, so decided to wait for the doctor to do it when he came as well.  I generally have very low blood pressure & my veins go into hiding the moment a needle is mentioned!

The anesthetist arrived & told me exactly what he would be doing...
Drip in, pain medication & something to make me "float" would be given through the drip.  Then he would give me a few local anesthetic injections in the area & the the feeder wire would be fed through my jugular vein into my heart, before the CVP tubing would follow & then the wire pulled out, & the tube stitched in.

Me, miserable after having the CVP line inserted.

It is painful.  It is not pleasant.  It is most certainly not the worst thing I have been through, but it is not a walk in the park!  Plus these were put into my neck, so looked like an antennae that I was using to communicate with extraterrestrial life!

Desmond (the chap that does my plasmapheresis) arrived to start my first treatment & gave me some terrible news...  The wrong pipes have been put in!  Somehow there was miscommunication or a misunderstanding & the anesthetist had put in a CVP line, & this was meant to be a dialysis catheter.  Very different.  The CVP line is a lot smaller with 3 heads coming off it, whilst the dialysis catheter is thick with only 2 pipes showing.  I was horrified!

2 hours later the anesthetist arrived back to insert the correct lines.  He apologised profusely, held my hand & talked me through what was going to happen.  A feeder wire was to be fed back through the CVP line, this was going to be removed, & then the thicker dialysis catheter would be pushed down.  He explained this would be more painful as it is a much thicker tube, & my body is already injured from the first time around.  He gave me more pain medicine, as well as something to help me relax; & then the correct line was inserted.   

Me, tearful & fed up.

We also discovered I am allergic to the OpSite plaster they had put over the previous pipe, as I had gone red & itchy with tiny pimple-like bumps forming just in that time.  

The nurses held my hand through both procedures & cried along with me.  They brought me cool drinks, spoke kindly to me & phoned my doctor as soon as everything was correct.  The X-ray department came down to check the pipe was in the right place & then they left me to sleep.  No plasma for me on this first day as they decided my body had been through enough & they just wanted me to relax & get over what had happened.

My sweet husband & mum came to visit me that day to cheer me up & keep me positive.  They were there for me almost every day; taking it in turns to come visit.  Unfortunately the hospital I go to is about an hour from home, & half an hour from mum so not close enough for anyone to just pop in anymore.  Also I think friends & family no longer think me going to hospital is such a big deal.  I have done it so often & am in every year at least once that I think it has become boring for them!  I remember having masses of visitors when I first used to get admitted, as well as cards, toys & flowers galore.  Now that I am a regular, this has tapered down a bit & some visiting hours it was just the nurses there keeping me company.  It is understandable though & it doesn't upset me - it is simply the norm for some people that I am back in hospital.  Almost like I am going to stay with a relative.  I do appreciate those friends that could make it through to visit, as well as all the lovely messages & encouragement I received throughout this time.

They tried to give me pain tablets to take, but I battled to swallow them.  This was especially difficult as I usually toss my head to get food etc down when I am battling, but now I couldn't move my neck properly given the position of the pipes.  So it was kiddies syrup for me!

My first plasma treatment started early on Tuesday morning...

It is such a weird sensation, & I always get freezing whilst it is happening - hence why I am all bundled up under about 5 blankets!  But these new machines are wonderful.  It only takes about 1 & a half hours to complete it; compared to the old machine which used to take 4-5 hours.  It isn't painful, but you can feel the vibrations of the machine - my lips feel like they are buzzing...

Midway through treatment, & after all 5.

Last photo as an alien!

I love how quickly I can see results with plasmapheresis.  In the photos above, you can see how initially my smile was lopsided, & my one eye was more open than the other.  The other 2 photos are after all 5 treatments & show both my eyes open properly & my normal smile!  It is always so exciting to see these results; to hear myself talking clearly; to be able to brush my hair without having to support my one hand with the other; to lift my head off the pillow without having to physically lift it off using my hands.  It is the small things that bring me so much joy, & the nurses & doctors celebrated along with me in every small victory!

The biggest concern was my blood pressure through this.  I usually suffer with a low blood pressure, but it dropped right down to 80/40 (healthy BP is 120/80) & I often felt faint & dizzy; & the nurses had to help me to the bathroom.  My doctor came to check on me at least once a day, & even came in on her weekend off to bring me a flower & show off her new haircut.  She is my other mum & I am so grateful for all she does for me!

When you are in ICU it is not easy to escape.  You are constantly connected to heart monitors, a blood pressure cuff & a thing that goes around your finger that measures oxygen saturation.  I called this my ET finger as it glows & makes for good entertainment!

After all my treatments were completed, my pipe was removed & I was kept in for another day for observation.  They always prefer to be safe with us snowflakes & ensure we are the best we can be.  No chances can be taken!

Then I was transferred to my old home, Medical Ward 2.  I have been coming to this ward since my diagnosis.  The nurses know me, my family & my husband.  The have seen me through my good & bad times.  They have been there to help me bath when I am too weak, they have held back my hair when the chemo made me sick.  They have fed me when I couldn't do it myself, & given me more hugs than I can even count!  It was like seeing all my friends again.  They made a plan to get me a private room (due to my lack of immune system I can pick up any illness very easily) & quickly settled me into a room fit for a queen!

I changed out of my hospital gown as soon as I could & put on my normal clothes!  What a good feeling...  I could now also wash my hair, which after a week of doing nothing was looking pretty grim!  I had another reaction to the plaster that had been put on, so the nurses helped me change this to a smaller one & I was set to relax, sleep & recover.

Itchy itchy!  The reaction to the plaster

The lady who brings the meals around remembered me, & knows I like tea with no sugar throughout the day then a hot chocolate at night.  She knows I don't have dessert, but do like yoghurt with my breakfast.  She was so sweet & it was so lovely being able to catch up with her & learn how her family has grown since the last time I have seen her.

So although this was a horrible experience with the pain, low blood pressure & being in hospital longer than expected; it was lovely being able to see all my friends again & make some new ones.  I hope I don't have to go back any time soon, but if I do I know I am in the best hands ever & will be looked after.

It was dreadful when the 12 year old boy next to me who was waiting for a heart transplant died in ICU, & it reminded me that life is short.  We never know when it is out last day on earth.  We need to live every day as if it is our last.  Be kind to others.  Smile as often as you can.  Make friends.  Never give up hope.  And pray every day.

Little bit of a squiff eye - I hadn't had my morning nap yet!  Otherwise all muscles working perfectly.

I am home now, relaxing with my animals & my sweet husband is waiting on me hand & foot.  I feel strong.  I can talk well & even managed to do some loads of laundry this morning.  I am going to cut my hair this afternoon (long hair with MG is not easy - there are times I cannot even brush my hair, let alone tie it up) & other than that I plan to take it very easy.  Tomorrow I go back to work & hopefully can catch up on some of it that I have missed.

Thank you to everyone for your love, support & kindness through this awful time.  May the next time I have to go into hospital be when I am giving birth to our miracle baby!

Pull the mattress to the lounge!

This past weekend was a tough one.  It gave me a wake-up call, a shock & reminded me that I do still have Myasthenia Gravis – no matter how hard I try convince myself that I am Superwoman in regular clothing.

We have been quite hectic lately with so much going on – I work a full day, then on top of that we have been attending a marriage course; doctor’s appointments an hour away; engagement parties; baby showers; birthdays; kitchen teas; farewells; weddings and just general life.

I have been determined to have a social life & not miss out on everything around me; but I think it has just been too much for me.  I noticed that my talking was going down last week, but I thought it was just perhaps because it was THAT time of the month.  It usually does affect me, but this month was worse than normal, with a definite lack of energy & I was battling to talk & swallow.  I just felt pap!

There were many plans for this weekend & I was looking forward to each & every event that I had been invited to.  Unfortunately, by Saturday midday I could feel my body starting to give my signs that it wasn’t happy.  I was slurring my words quite badly, & eating my lunch took me over half an hour.  I couldn’t smile properly & I felt a bit faint.  I thought maybe it was just due to the late night on Friday & fell asleep at our friends’ house whilst “playing poker”.

Sunday was an early start as we were on duty at church & we are in charge of the breakfast team – i.e. we couldn’t be late!  I could feel I wasn’t myself & really struggled to talk to the patrons that I was serving.  My legs felt terribly weak, & I had to physically pick them up in order to go up the stairs.  I couldn’t pick up anything heavy, & when I did I felt like I was going to drop it almost straight away as my fingers couldn’t get a firm grip.  It was awful.  There is no way to explain it to anyone, except maybe those who have had a really hard workout & have fatigued their muscles beyond what is “normal”.  Even that doesn’t properly explain the weakness associated with MG – and it gets progressively worse the harder you try to just “push through it”.

I also hate letting on just how grim I am feeling.  I try so hard to keep a smile on my face & not let people see my weakness.  I tell my husband & he is also good at helping me & covering up my lack of abilities at that moment in time.  We tried to have breakfast at church but after what felt like an hour of battling through, I eventually gave up & had to throw my cold food away.

We got home (with me almost falling asleep in the car – something that hasn’t happened in ages) & husband pulled our mattress into the lounge so we could watch movies together & just chill.  I don’t think I even lasted 20 minutes before passing out!  I woke up 2 hours later to have a quick snack then climbed straight back into bed & woke up 4 hours later – with husband gently stroking my face & telling me I need to take my medicine as it was already overdue.

I missed out a kitchen tea & baby shower this weekend which makes me very sad.  But at the same time, I don’t think I would have coped with these events & it would have ended badly.  I honestly feel if I hadn’t slept away the whole of yesterday I would have ended up back in hospital.

It is so frustrating knowing I am not coping.  And that I cannot keep up with “normal” life.  I hate the fact that Myasthenia Gravis dictates what I can & cannot do.  I am worried because I know that CellCept helps me & does make me stronger & able to cope with life, but then I cannot have children for at least 6 months after stopping it.  I have to decide on my priorities & listen to my body.  I need to be strong & healthy to have a baby, & husband & I have said as soon as I have had a baby I will go back onto CellCept & build up my strength once more.

I wish I was strong & healthy.  I wish I could cope with a full day of work without wanting to collapse on my way home.  I wish I didn’t have to miss out on major events in my friends lives & that I could have a normal conversation without people without struggling to form every word.  The struggle of daily activities is getting to me at the moment & I sometimes feel like curling up in a ball & having a good cry.  I feel like I am not coping too well at the moment, but yesterday’s sleep made the world of difference to me.  Perhaps that’s what I need at the end of every week?  Maybe I need to slow down & take a step back from life for a while.  I wish that I could cope with a full day of work.  I wish I could actually talk like I used to – without the slurring, problems, & difficulties.  I wish my hands were strong, my legs able to walk & my eyes able to close.  I wish I could smile a full, happy smile; & not look like I am snarling at people.

I am trying so hard to stay positive & keep a smile on my face.  I don’t want people to worry about me, or to simply see me as “the sick one”.  What should I do?  What CAN I do?

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.

Damn flu - turned into something positive

The flu has made its way around our office over the past 2 months & it has not been pleasant...

Just over a month ago I was notified at work that I only have 4.25 hours of sick leave left until January 2016.  This is because of my 2 hospital visits when I relapsed with MG earlier this year, as well as the time I had to take to remove my massive ovarian cysts that had developed.  I was very frustrated with this news as I am not usually a sickly person & I had not taken leave for a simple cough or upset tummy - they were legitimate reasons that saw me going to hospital (and even ICU for a short time).  To be told that I pretty much cannot get sick again until 2016 was not the worst of it; its that if there is another emergency &, God forbid, I have to go to hospital again or suffer any form of relapse I will have to take unpaid leave & truly suffer because of this silly illness.

When I got this letter, I could feel the start of a cold coming on.  I had a sore throat - but nothing to really write home about.  I was so determined not to get sick.  I stocked up on Vitamin C (it is a big joke in our family as Vitamin C is prescribed for everything & we would all rather take that than any other chemicals that a doctor prescribes) & multivitamins, as well as plenty of Berocca.  Now when I opened the email, I realised how serious this was & I really could not get sick.  Usually when I get sick it affects my MG as well, as my body is so busy fighting off the cold/flu that my MG worsens & I often start slurring my words & battling through daily activities.  This in turn can lead to me having to take time off to recover from the flu, but also to build up my strength with my MG & sleep lots so that I don't relapse.

I fought it as hard as I could, but unfortunately it got the better of me.  Eventually I ended up going to the doctor one day at work as my nose was terribly blocked, my throat so sore that I could barely swallow & I felt terribly weak.  The doctor diagnosed me with acute sinusitis & the start of pharyngitis, & put me onto antibiotics as well as booking me off for a day.  I went home, slept & took my medicine like a good girl but things did not improve.  (Note:  You have to be very careful which antibiotics you take when you have MG.  Once I had the wrong one prescribed to me & I ended up in ICU battling to swallow & breathe)

I felt grim.  There is no other way to put it.  I never get flu - usually just a cold & then it disappears.  This time I was getting all clammy & feverish, I had no appetite & was constantly nauseous, & I did not want to leave my bed.  However, knowing that I had no sick leave left meant I had to go back to work & attempt to push through.

My colleague had taken a weeks leave at the same time so I knew I couldn't afford to be sick as I was doing both of our jobs & couldn't let my boss down.  I tried.  Really I did.  I could barely concentrate & my nose was so blocked that I couldn't even swallow.  I was weak, felt faint & had absolutely no energy.  I was in bed by 8 most nights!  Eventually my husband told me he was taking me to another doctor as clearly the antibiotic was doing nothing for me, as I had finished the course 3 nights earlier & was just getting worse.

I walked into the doctors rooms & already felt better.  This was a doctor I had been to before & he knew my medical history.  He knows I don't make a fuss about nothing & he knows I try be Superwoman through everything!  He did all the usual checks & told me I now had sinusitis, flu & laryngitis.  I was put on a much stronger antibiotic & told to take 2 days off work to rest & not to really leave my bed for the weekend following.  He was very stern in this instruction - even when I explained the situation I am currently in.  He said if I don't take time off I will not get better & this will make my MG even worse.

I freaked out!  How could I take more time off work?  Would I lose my job?  Would they think that I don't take my work seriously?  What would my boss say?  Would they think I was making a fuss about nothing?

I got on the phone to my HR manager at work & asked her if I could take the time as annual leave - which was fine.  I still had a terrible feeling in the pit of my stomach, but felt too ill to do much except obey the doctor & allow my husband to take me home & put me to bed.  I also asked a very good Homeopath to prescribe me some drops to take in conjunction with my antibiotics.

This flu was awful.  I fought it for a good 2 weeks & still don't feel quite right.  My MG has gone down a bit too.  I am slurring my words & battle to swallow by about 6pm.  It sucks that a simple cold turns into something worse so easily - just because I have no immune system from my medications.  And it is so annoying that the moment my body is trying to fight off something else my MG flares up & shows its ugly head once again.

Now I am just taking things easy.  I am, however, trying to see all those people special to me & those that understand if I am talking funny or take an hour to finish my meal.  We are getting out more, as this past year we have been like hermits.  We have had wonderful special time together, but unfortunately have neglected a lot of our friendships.  We are lucky in that our friends have been compassionate & understanding to our situation, & still make the effort to see us or invite us out.  It means the world to me & I have finally come to realise that I cannot be ashamed of my talking as it is beyond my control, & my friends love me - warts & all!  I have always tried to hide it & would just keep quiet when out on public or hide behind husband & let him have the say for both of us.  This is changing - at last.

Me & husband at a dress up party

I am getting my confidence back & this has helped me to see who my true friends are.  There are those friendships that I have been fighting for for too long now & I am letting them go.  It is not worth the fight.  I have been hurt, burnt & dropped for better opportunities.  Friendship is a two-way street & the love I have received from those special people lately has shown me what I want in a friend - as well as what I actually deserve.  Getting my confidence back has done that for me.  I am not useless, & I don't deserve to be treated that way.  I deserve to be that first phone call, or the one that a friend wants to celebrate with.  I deserve to be invited out & spend time laughing & learning more about one another.  My friends don't care if I talk funny or if I go to bed by 9pm.  They don't care if I am an old lady now or if I don't eat dinner because I can't swallow.  They don't look at me funny or treat me any differently to a normal person.

With some truly special friends

Having my time off work to rest & recover has really made me see this.  And I am so grateful.  It has been difficult & I have had to cut some ties that I have been holding onto for too long now.  At long last, and probably for the first time since being diagnosed, I am comfortable within myself.  I have accepted my MG & the person it brings out occasionally.  I do have MG, but that is not everything there is about me.

Friends & family; thank you for loving me through everything & for accepting me for who I am.  I love you & don't know what I would do without you!  At long last the real Megan is going to come out; & you will just have to bear with all the slurred talking as I do have a lot to say & can't wait to spend more time with you making memories xxx

Love you guys!

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! 

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

Friendships - and the hardships

This week has been a very tiring one – both emotionally & physically…

It is my first week back at work since my op & I am finished.  I didn’t think I would be so exhausted, but my MG has been flaring up this week, with my talking going down by lunch time & sometimes I am unable to swallow my dinner.  I try keep on a brave face for those at work to not pity me, but I often find myself wishing for my bed.  It doesn’t help that it is so cold at the moment! Extreme temperatures are not good for us snowflakes – constant shivering means that our muscles are moving, which leads to muscle fatigue.  I also find I am battling more & more with the use of my fingers – typing can sometimes be a bit of an effort & making dinner is a bit of a chore currently.  Sometimes my hands just need to have a little snooze!

I have been thinking a lot about my friends this week, & how sometimes I feel it is easier to shut myself off from the world than to keep trying to fit in & just get hurt again.  Friends seem to be making plans right in front of me, without including me, & it reminds me time & time again how much I miss out on.  Just this week, I have had 2 friends make plans almost every night & talking about how much fun it will be – with no invite extended to me. 

Am I being oversensitive?  Perhaps. 

Are they sick of inviting me & I turn them down because of my MG?  Perhaps.

Do they think I am no fun because I am tired & slur my words?  Perhaps.

Do they presume I would rather just go home & sleep than spend time with friends who will make me laugh & cheer me up?  Perhaps.

I really feel like I have been missing out on a lot. 

Missing out on the fun evenings with friends; the dinners to celebrate the end of exams; the random braais or get-togethers; the gymming;  the nights out…  Sometimes I get so mad about having MG.  I feel like I have missed out on a lot, & I often feel that friends have given up on me.  Maybe they don’t have patience for me anymore, or the fact that I have often cancelled at the last minute.  I don’t enjoy cancelling, but I would rather stay at home & sleep than be out in public unable to talk or battling to swallow.

Sometimes I think it is my school friends who know me best & still love me.  They have seen me at probably my worst & are more understanding of when I cancel or stay at home weekend after weekend.  For example a very good friend of mine used to wash my hair when I was at hostel & didn’t have the energy to lift my arms.  There were plenty of giggles & we still joke about it to this day.  They were there for me to lift me up when I was down, to help me find something that I could swallow besides hostel food & to break into the kitchen to cook popcorn once I was finally able to swallow & was starving.

It is not easy meeting new people or having to explain why I am “thspecial” or why I am missing yet another social gathering; or why I have to ask to go have a snooze on their bed whilst there for a braai.  We have a wonderful couple who are so understanding with my sleeping the whole time – I think the very first night I met them I passed out on their couch, with all the dogs cuddled next to me.  I am lucky to have people like that in my life.

Currently I feel like I am all alone in the world.  I know it is just a phase.  I have had this feeling before & got over it.  I am very lucky with my husband who understands & knows to ask before making plans; or will happily leave a braai/party early so I can get home to sleep.  Same thing with my family – in fact they often encourage me to rather stay in than to go anywhere!  I can’t miss out on more than absolutely necessary though.  I have missed out on so much, & I HATE it.  I hate that I am not involved in planning of certain events; or that I am sleeping when that funny moment happens or when everyone is seeing the New Year in.  It hurts when I see yet another picture on Facebook or Whatsapp profile pic showing my friends out having fun.  Yet again I wasn’t included.  Yet again I was probably sitting at home watching a movie or sleeping.  Yet again I was thought of to be the boring old married woman (because yes, I have been told this is what I am!).  I have been told time & time again that I used to be fun & I used to go out partying – that was when my MG was co-operating.  Believe me, if I could I would still be doing it every night.  Sometimes just getting out of bed to go to work is enough of a chore for me, & going out jolling would probably be the end of me.

Thank you to my friends that have not given up on me.

Thank you to those that still continue to invite me.

Thank you to those that still come to visit & make me laugh.

Thank you for the memories.

Thank you for loving me even when I am not myself, but a melting snowflake devoid of all but the basics.

Thank you for including me.

Thank you for making me feel special.

Just remember, I am not saying “no” because I choose to.

I am not saying “no” because I don’t want to see you. 

I am not saying “no” because I don’t want to go out. 

I am saying “no” because MG has dictated to me that I will not be leaving my bed. 

I am saying “no” because I just don’t have the energy to say yes & put on a happy front.

I am saying “no” because I don’t want to draw attention to the fact that I am battling to swallow & talk.

I am saying “no” because I don’t want to ruin the fun.

I am saying “no” because I don’t want to take away attention from the guest of honour.

I am saying “no” because I don’t want to drag my husband from yet another event early.

I am saying “no” because I hate letting people down by saying yes first, then at the last minute realising I can’t make it.

Operation Time

Last week Thursday I was admitted into hospital to have some ovarian cysts removed, as well as to have my tubes checked out & ensure everything is in tip top order.

The day before I had to stay at home as I had to take 3 sachets of Klean Prep.  For those of you that have never taken this, thank your lucky stars!  It is grim.  There is no other way to put it.  You mix each sachet with 1 litre of water & have to drink that within an hour - sounds easy right?  Wrong!  The first glass isn't too bad - in fact I found myself saying, "This will be easy!  I've got this!".  That was until I had to start on my next glass, & my stomach was already full from the previous glass.  I finished the one litre & it started working straight away.  It empties your stomach.  Of everything.  The toilet was my best friend!  In fact I left a book next to the loo so I didn't have to really move.  I mixed up the next sachet with water & as I held the glass towards my mouth, I could feel goosebumps starting.  The smell, along with what I knew was coming, made me feel ill.  I managed to finish this litre with great effort, & even though I thought there couldn't possibly be anything left inside me, there was still stuff coming out!  I hadn't eaten since that morning so didn't have anything to add to what had to come out.  It was gross.  Thank goodness I was home alone that day!

We arrived at the hospital at 6am to check me in & husband waited with me while the anesthetist came to check me over & chat about what drugs he would use - as someone with Myasthenia Gravis, we should not go under anesthetic or have an muscle relaxants as our muscles are relaxed enough!  Luckily he told me had worked with quite a few Myasthenics so was confident & had this under control - this made me feel a lot better & a lot calmer.  The surgeon also came to introduce himself & let me know what he would be doing.  He said judging by the size of the cysts & all the drama that happened last time, they probably would have to do a big incision.  He would start with keyhole surgery & see if he could manage it that way, but I should expect a proper cut when I woke up.  I appreciated his honesty.  At least I knew what to expect!

I had asked friends & family to wear teal in order to raise awareness for Myasthenia Gravis on this day & also to show support for all of us snowflakes fighting an ongoing battle.  I am so blessed with all the support & love I received.  Here are some of the people who sent me pics showing their support:

I really felt the love that day & appreciate it more than you could have realised.  It really made me feel safe, secure, & honoured to have you in my life.

At the hospital the nurse came in with my sexy (teal!!) hospital gown, along with one-size-fits-all disposable panties that I had to go put on.  The look on my husband's face was priceless!  I just got the giggles - especially when I opened up the panties to all their glory...  They could have fitted husband & myself in them quite comfortably!  Anyway I got dressed & sat waiting on the bed for them to come whisk me away.

Waiting to be taken away!

I think the waiting to be taken to theatre is almost worse than the actual operation!  Luckily my wonderful husband was there with me, holding my hand & calming me down.  He kept me smiling & helped the time pass.  Eventually 8am came & they gave me an injection for pain, to calm me down & prepare me for the op.  It knocked me out!  (I am not a great pill popper so even Panado makes me sleepy!)

Ready for action...

They started pushing my bed to the theatre & husband came along with me.  He gave me my final kiss goodbye at the entrance to surgery & then it was go time.  Into the theatre we went, & straight into the operating room where the Gynae, Specialist Surgeon, Anesthetist & nurses were waiting for me.  I climbed across to the operating table & they covered me with blankets.  They put my drip in & gave me something to make me feel sleepy "in a few minutes".  Well, they had hardly put the mask over my face & I was already off in la-la-land.  I am not afraid of going under - in fact it is probably the best sleep you can ever have.  Nobody should fear that feeling - the doctors are in control & you are blissfully unaware of what is going on.  Then you wake up like Sleeping Beauty - all fixed & less the weight of whatever was removed!  Amazing!

I woke up some time later (4 & a half hours to be exact) in Recovery - shaking like mad.  I was FREEZING.  They kept putting more & more layers of blankets over me & eventually put a hot air blower under the blankets to get me nice & warm.  I had to wear the oxygen mask for a further 2 hours as an added precaution.  As soon as they wheeled me out, husband was there.  He jumped up, gave me a kiss & walked me back to my room.  I was still very dozy & apparently told him the same thing over & over again.  He gave me the best news though - they only had to do 4 little incisions.  I was so relived & thankful that I wanted to cry.

I was very sleepy for the rest of the day & only woke up to take my tablets, go do a wee (they were threatening me with a catheter so I had to stop that before it went any further), try eat some food & when my visitors came that evening.  I felt amazing.  I had a slight bit of pain, but nothing too hectic & I could move around without experiencing any nonsense.  It was such a relief to be rid of that dull ache that was a result of my cysts, & I was allowed home early on Friday.

I still can't believe it.  That was my shortest hospital visit ever.  The doctors all said they couldn't believe how well the op went & how quickly I bounced back.  The left hand cyst was 10cm long, whilst the one on my right was about 6cm.  Not your average cyst thats for sure!  No wonder I was in such pain.  They also said my tubes were quite badly damaged & are very thick.  I may have trouble falling pregnant, but right now is probably the most fertile I will be as everything is cleaned out & ready to roll.  I also believe in miracles.  This will happen for us!

I went to see a very good friend of ours who is a fertility specialist & homeopath & he has changed my diet (no wheat, no sugar, no alcohol, no coffee) as well as giving me supplements to get me on my way, & hopefully help with my MG simultaneously.  Through all of this drama my MG has been very well behaved - in fact I would say it even deserves a gold star.  It hasn't reared its ugly head & has let me recover from the op completely without trying to take over & control my life again.

So for now I am still trying to raise awareness for MG.  June is the Myasthenia Gravis Awareness month, so I have made little ribbons to give to my friends & family & am posting something about MG on a daily basis on my Facebook, Twitter & Instagram accounts.  The more people who know about MG the better.  Hopefully this will lead to more compassion, love, understanding & patience shown towards us snowflakes.

I am also hoping to create awareness through local media - newspapers, TV, radio, magazines & the sort.  It is not easy & people are not always interested but I am going to continue trying!  There is a walk in our little town on the 22 June & I am hoping to have shirts made to raise awareness for MG, as well as perhaps getting some branded helium balloons to catch people's attention.  I will not be running, but I will try complete 10km.  I will beat my MG & I will stay a positive snowflake!

So please, if I can ask you a favour, help me to raise awareness for Myasthenia Gravis & all the snowflakes out there.  Wear teal, make a ribbon & research what MG is.  Talk to people about it.  Show an interest.  Stay positive.  But most of all, let all the snowflakes around you know that you are there for them & you love them.