Creating Awareness

Since I have been diagnosed I have been trying so hard to create awareness for MG as well as all rare diseases throughout South Africa.

I just had to share the following with you guys:

Maritzburg Fever Article

The Witness Article

Yes, my dream is finally coming true!  I have had such amazing feedback & already felt so much more understanding from those people around me.  Some people that I work with came to me & said they didn't even know I had anything wrong with me - this really made me happy as I don't want people to see me as "the sick one", but at the same time I am so thrilled to be creating awareness & letting people have a glimpse into my world.

This Friday is Rare Disease Day (visit www.rarediseases.co.za for more info) & we are trying in every way possible to reach as many people as we can, as well as inform the general public about some of the different rare diseases there are!

I will be giving a talk at my husband's work, as well as being interviewed by the amazing Jane Linley-Thomas on East Coast Radio on Friday the 27/02/2015 so please all pray & hold thumbs this will go well & I won't slur my way through it.

Love & light coming your way xxx

My little orange pill

One dose, taken 4 times a day

These little tablets have literally saved my life!  90 mg four times a day; usually an hour before meals to ensure I can swallow properly & won't choke on my food.

These are called MESTINON, & if you have been reading my blog you will see that I speak of them quite often.  Me taking one was part of my original diagnosis; as my doctor told me if it helped me to swallow & talk properly then that would help prove it was Myasthenia Gravis (the blood tests they took had to be sent away to be tested in order to prove I had MG & it would take a couple of weeks to get results).  Back then they had to crush it with a little water, & it took me 3 hours to swallow 5ml.  But there was a marked improvement & I managed to eat my first dinner in well over a month.

Now I can feel my body telling me when it is time to take it, & if I miss a dose or take one much later than I should; I can definitely feel it.  Usually my talking will be the first thing to go down & I will start feeling very weak.  My usual times are 6am, 11am, 5pm & bedtime.  My husband has got so used to me taking my meds that if I am slurring a bit more than usual, he will ask if I have taken my last dose at the right time!  Sometimes it frustrates me as I get very embarrassed when people can notice my bad talking, but I know it comes from a place of love & it is only because he knows me so well that he even notices there is something wrong.

One months supply of Mestinon

The tablets come in 60mg (the orange sugar-coated one pictured) & 10mg (little white ones) that dissolve the moment they hit your tongue!  I am so used to taking them now, as I have had to take them right since day one.  The dose has varied throughout different times of my life - I think my lowest dose was 60mg 3 times a day & I am on the highest dose currently.  The thing about this medicine is it is an exact science - too much or too little causes the same effect.  Often my doctor & I will try lowering the medicine to see if that will make me better, only to realise I actually need to take more in order to see me through my bad patch.

I carry my little pill jar with me everywhere I go.  I have spare tucked away in my medicine drawer in case the pharmacy doesn't have stock when I go to fill my script.  And yes, that does happen.  Because there are so few people that suffer from Myasthenia Gravis (especially in Pietermaritzburg - my hometown), the pharmacies do not keep a lot of stock on hand.  They have to do a special order in for their scripts they know they have & the one month I went there to get some & there was none!  I had no medicine for 3 days & ended up having to stay at home for those days as I could not even get out of bed.  Now they are a lot better at ensuring they have stock, as my husband gave them hell!

I cannot ever make last minute plans to stay with a friend as I need to have my medicine unless I want to suffer the consequences.  I usually only carry enough tablets for that day so I can see at a glance if I have missed a dose (sometimes when things get a little hectic at work this can happen).  I don't want to carry too much medicine around as well just in case my bag gets stolen...  I missed a dose this last Sunday accidentally & I felt awful.  I thought maybe I had been pushing too hard & was battling to swallow, talk, walk up the stairs at my mum's house & even my smile was all droopy - then when I went to take my 5pm dose I saw there were still 3 doses left in my container!  What a banana...  But it reminded me how vital it is to take my medicine timeously & that I cannot survive without it.

So how does Mestinon work anyways?  Mestinon is a pretty clever little pill...  It helps to prevent the breakdown of the acetylcholine in the body, so that then your muscles can function optimally.  I would hate to know what happened before it was invented, & perhaps this is why there were so many deaths recorded in the early years.

Some of the side effects include nausea, vomiting, diarrhea, abdominal cramps, increased saliva/mucus, decreased pupil size, increased urination, & increased sweating.  And yes, I have had them all.  If I bend over to kiss my husband goodnight, I often drool on him too (sorry babe - I don't do it on purpose I promise)!  Nausea, diarrhea & cramps are a daily occurrence; but I would take these any day over my muscles weakness.  You have to have the bad to appreciate the good - to quote a saying I found the other day "you can't have a rainbow without a little rain".

For once though I would love to see side effects such as "warning: may cause extreme sexiness over prolonged use of this medication", or even "there are no side effects, this will just make you all better!".

They have now brought it out in a syrup form which I think is amazing!  I am not sure if we have it in SA, but it is a brilliant complex.  When I am battling to swallow it can take me a good while to actually get the tablets down, whereas if it was in syrup form it would make things a lot easier as it could go down without choking or the tablets getting stuck.

Every week I will try write a blog on a different form of treatment - I have written at length about Plasmapheresis whilst I was having it, & will try blog about different things I have experienced.  Not all have helped, but some have literally saved my life.

Happy new year to all of you!  May 2015 be your year of happiness, love, good health & miracles.  Sending so much love always, & thank you for reading this blog.  I really hope it helps give an insight into living with this disease!

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.