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.