The ugly face of MG

It has been a rough couple of months & we have been trying so hard to keep our heads up & put on a smile, but today I am broken.  The straw broke the camel’s back & the tears continue to flow with no way to stop them.

In April I was re-admitted into hospital for my usual plasmapheresis.  I was really not well, & my doctor admitted she hadn’t seen me this bad since my initial diagnosis.  I was unable to talk, swallow & even get out of bed on my own.  The anaesthetist said he would prefer to put me under when inserting my pipes due to the pain, but because I was so bad we could not take a chance with that.  I couldn’t even swallow my spit & really felt miserable.

I was truly blessed to have special visitors every single day of my hospital stay, & constant messages from some wonderful people.  Let me tell you, it doesn’t matter how often you get admitted to hospital, it is never fun.  It is not something I look forward to or enjoy, & receiving that little whatsapp or even a facebook message can change my day completely.  So thank you to everyone that took that time out of their day to contact me & make me smile.

I was discharged after 6 days in hospital & went straight home.  I was feeling amazing & again was blown away by the difference that the plex made to me.  I loved feeling normal & able to do things that a girl my age should be able to do without the huge effort.

Alas, 3 days after being discharged I was already starting to slur my words & battling to swallow.  Within a week & a half I was back to where I was before I was admitted.  I battle to bath myself, dress myself (doing up buttons is really tricky when your hands don’t want to co-operate) & at times even cut my food.  I am exhausted every single moment of the day.

I have always been one to jump out of bed excited for the day ahead.  I love every day & try so hard to be positive & find the good wherever I can.  It is not always easy, but it is something I have set for myself.

Currently I can barely drag myself out of bed.

I am on new medication that could take a while to kick in, so we are praying for results with that.  However after almost 3 months I am still not feeling much different to how I was before I began them.  I will never lose hope but I currently I am terrified.

My Myasthenia Gravis has now developed into a resistant strain – meaning medication that worked for me before is no longer doing what it should.  Hence why the plamsapheresis effects didn’t last as they should have.

My husband has recently relocated for work & I have been lucky enough to be able to stay with my aunt & uncle for the past month.  They are very understanding & do all they can do make my life easier – food goes into the magi-mix so I can eat my “baby food”; I get sent to bed just after 8pm & I am allowed to rest whenever I want to without being made to feel like I am lazy.  It has been so good for our relationship, but it has also reminded me how little I can currently do on my own. 

My talking is terrible from when I wake up, & although there is so much I want to say, I cannot physically get the words out.  It is an effort to talk & many times people cannot understand what I am trying to say.  Once I get flustered or stressed it makes it 100 times worse!

The same with my swallowing & chewing…  I choke on my food every day.  Sometimes I have to cough just to try get the food down.  When I sense that people are watching me, I often put my food to one side or feed it to my husband (thanks babe!) rather than have to answer any questions about if I always eat like that/if I am battling/would I like something else.

I am physically, emotionally & mentally exhausted.  I am not coping, & I cannot put on my strong face today.  I never let people truly see just how bad things are, but today I decided to be honest & let you in to my life.

Once I move to JHB I am going to have to change neurologists (GULP!).  My current doctor is like my other mother & she has been treating me for over 12 years now.  She knows what has worked for me & what has done nothing.  She knows I don’t make a fuss of what I am coping with until I can’t physically carry on.  Going to someone new terrifies me, although I am hopeful that the new doctor will have a brainwave with what may help me & maybe there will be a difference in my life.

The other thing I am terrified about is meeting new people.  Do I tell them about my MG when I meet them?  Or do I just act normal until they start giving me funny looks when I can’t talk?  Do I get husband to explain it?  Should I carry little cards with a basic breakdown of what MG is & hand these out whenever people need to know?  The people I have met so far were so kind & welcoming towards us, but I am scared of how things will change or if I will be seen as “the sick one”.

I am really battling with the lack of understanding being shown toward me currently.  I have been told I am rude for not talking, or that I overreact with what is going on.  I have been told I just need to eat, or have a smoothie if I can’t swallow food (NOTE: if my muscles aren’t working, that means I can’t swallow anything.  Sometimes I even have to mop up my spit coz it won’t go down).  I have been told I need to be more positive.  I have been told so much; & every single word is like a sword through my heart.

I am really trying to create understanding & am grateful for each of you who have shown me compassion, love & understanding during this very trying time.  Thank you to my friends who have cried with me when I am battling, & who have never given up praying for me.  Thank you for understanding when I cannot talk, & for sitting in silence with me or for being the one to chatter away.  Thank you for including me & for loving me, regardless of how “thspecial” I am at that particular moment.

My heart is breaking at the moment. 

I do not enjoy being sick for one single moment.

I hate having to explain myself & feeling judgement from people around me.

Please just love me through this difficult period, & understand when I can’t always join in.

Sometimes all I can do is hug you to thank you for all you have done for me, as I cannot get the words out.  Please know that my hugs are filled with every single word I wish I could say & I am sending constant love to everyone in my life.

Please pray for a miracle. 

Pray for a cure. 

Pray for hope.

Pray that I can feel “normal” again.

xxx

Symptoms

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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.

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!