M.I.A.

I do apologise...  I haven't been around for a while.  Life seems to have been on fast forward, with hardly any time to just sit down & relax.  Work has been hectic with month end reconciliations & trying to make sure we get out statements in time.  I have been working & getting home to just BLOB in front of my tv with my new puppy cuddled on my lap.  Thank goodness my husband is so understanding & gets home from a very busy day to cook us dinner & take care of me!

Lola - my precious pup

My MG seems to be under control lately - I know I am not getting any worse, even if I am not quite 'normal' just yet.  My facial muscles are 'melting' by the end of the day (best way I can think if to describe it - they seem to have met their match with gravity & don't want to lift up to smile or anything) & I do slur my words slightly; but I am not feeling as weak throughout my body & I can still cope with what is happening.  I have learnt to take things easy & am not pushing myself as much as I was previously.  No more late nights, no more going out after work to all sorts of places, no more hectic weekends going to visit 10 different people, no more thinking I am superwoman.  I have learnt my limits (thanks MG) & now have to stick within them.  I often feel like a boring old lady, but I have realised that my health is more important than a late night!  Friends & family are very understanding; & we make plans for convenient times.  They are also understanding if I cancel plans at the last minute - I definitely don't mean to but sometimes my body tells me I cannot carry on!

I went for a check-up with my neurologist on Thursday.  She is happy with my progress after my last visit (a month ago, where my medicine was increased from 4 tablets a day to 40!  Shake, rattle & roll baby...) & said we could try decrease my prednisone.  I was so relieved to hear this as I am beginning to look like the Oros Man - gotta love the side effects of cortisone, which include an increase in appetite (and yes, its bad.  I will eat anything that is not nailed down.  I am hungry THE WHOLE TIME.  I will finish supper & start looking for my next snack.  It's bad.); increase in water retention (hence the "moon-face" I have developed); insomnia (I will be EXHAUSTED, but not able to fall asleep.  Or I will fall asleep, but wake up every hour.  Yuck.);  increase in facial hair (anyone wanting to grow a moustache?  Go onto cortisone & one will sprout out of nowhere...  It's fantastic.  Thanks medicine - I have always wanted to look like a man!!); & thin skin (I bruise from bumping into the door!  People must think I live with a wife beater.  Let me tell you now that this is most definitely not the case!  My husband is the most gentle, loving, amazing man in the world.  I am just a clumsy oaf!  It also means that I should not have a wax as it can remove my skin, as well as cause terrible bruising.  But I do it.  I have the best beauty therapist ever.  You should try them.)  Anyways, back to my medicine...  I was so relieved to have the drop in my cortisone.  We are going to see how I cope during this next month, & at my next check-up reevaluate & perhaps stop it completely (when I am better), or have to increase it again (if it happens that my body is not coping on the lower dose).

The other medicine I am on is CellCept.  This is not a pleasant pill.

This pill is deciding for us that we cannot start a family until it is stopped.  I am the reason that we cannot have kids.  Growing up when people asked me what I wanted to be when I was big, my answer would always be the same - a mum.  This may be due to the fact that my mum is the most amazing, strong woman; but a huge part of it is also that I love kids & I can't wait to have my own little family.  It is not worth even risking falling pregnant.  There is a 70% increase in the chance of miscarriage, & it is almost guaranteed there will be birth defects.  I have heard that you cannot even breastfeed whilst on CellCept!  This has been the biggest blow to me ever.  I have shed many tears, & often cannot face the world with this on my mind.  My neuro has suggested we look into surrogacy or adoption - I don't even know where to begin.  Also how to you ask someone to be a surrogate?  "Sorry, would you mind carrying our child for 9 months, coping with morning sickness & more stretch marks, feeling it moving & growing inside you, & then handing it over to us quite happily?"  Also I want to be pregnant!  I want to feel my child moving & growing. I want to go through morning sickness.  I want to experience pregnancy for myself, & not just through stories told by other women.  I know this may sound selfish of me, but it is my dream.  I would love to adopt a little baby, but I still want a child that is a mini-us.

Me with my grandpa when I was little

And lately it seems like everyone around me is pregnant or just had a baby.  I am thrilled for them - especially one special couple that has had a really rough time last year.  All these people deserve kids & I am so happy that they get to be parents.  But I have to admit that this little green monster still comes out & I shed a few tears every time I hear of another one.  Maybe it is because I know we can't have kids right now that I notice it more, but wowzers, it is not easy!  Also people keep asking us when we are going to have kids.  Once you are in a relationship, there seems to be questions with the rest of your life; i.e. "When are you getting engaged?", then goes to "When are you getting married?", which ends up at "When are you having kids?".  How do I explain to others that I have a potentially life-threatening illness & am on chronic medication that hinders my ability to have kids?  Do I say it just like that & shock them into silence?  Or do I try give a long explanation?  Or do I lie & say we want to wait until we're a bit older?  People don't necessarily realise how much their questions can hurt.  I know they don't mean them to, but more often than not people who don't have kids haven't had them for a reason.

Now, it is just a matter of getting better so I can go off the medicine again.  A professor of neurology that my doctor has been consulting with says he wants me on CellCept for life.  This is shocking news.  And I don't want to believe it.  I will not believe it.  God has a bigger & better plan for us.  We cannot see it right now, & don't understand the reasoning behind having to go through this.  But one day we will look back & understand - hopefully!

Thank you for all your understanding & patience with me through this difficult time.  And thank you for not asking me when we are going to have children of our own - when it happens believe me I will be shouting it from the rooftops & celebrating every day.

Much love & happiness to all of you xxx

Going Backwards

I am sorry I have been quiet for a while...

As you read in my last post, I ended up in hospital last week Friday on a treatment called Solumedrol.  This is a very high dose of cortisone & is meant to make my illness settle further into remission, or at least make me get some of my energy back & feel slightly more 'normal'.

On Saturday I still wasn't feeling fantastic.  I thought perhaps I was going backwards, but didn't want to admit that to anyone - least of all myself.  I slept majority of the day but this didn't seem to make a huge difference.  My doctor wasn't on duty over the weekend, but luckily the doctor who was knows me & my history, & could see that I wasn't doing well.

It was my mum's birthday on Sunday.  Again I stole all the attention!  (By the way, this is a joke...  I didn't really do it on purpose, & we joke around that I do this for attention - easier to joke & laugh so please laugh with me when I say this.)  Mum came to see me at about lunch time, & somehow with her amazing mum telepathic knowledge, she arrived with some soft foods for me & a big pink cuddly bunny rabbit.

My talking was shocking.  I was really battling to get my words out - if you have ever tried to talk after having gone to the dentist, or with a really large grape in your mouth, this is what it feels like for me.  Well, it is the easiest way to try & describe it to others.  It is difficult for people to understand me, but it is also very difficult to get my words out.  And then I start getting agitated, which in turn makes my talking even worse.  It's a vicious circle of "thspecialness".

And then there was my swallowing...  My talking is always the first thing to go down & that's how I know when I am having a bad day or going backwards.  But when it gets to my swallowing then I  know it is slightly more serious.  I battled to chew & swallow my bacon I had ordered for breakfast, & ended up choking slightly on this.  So that quickly went to one side & I managed to finish a small container of yoghurt before my muscles were exhausted & it was time for a nap.  When mum arrived at lunch time (just as my drip was finishing), I had just taken my medicine & I usually have to wait at least an hour before eating anything as the medicine helps my muscles remember what they should be doing.  So we sat trying to talk & celebrate her birthday until I could try my lunch.  I had ordered a pie with mash & veggies - sounds pretty easy & soft to swallow right?  Wrong.  Mum cut my food up for me & spread the pie sauce in with the mash, but nothing was going down.  It kept getting stuck so I was constantly clearing my throat & coughing to try get it down.  Thank goodness for the baby food mum had brought!  It was just the right consistency & I managed to finish this just before the rest of my family arrived for mum's birthday lunch.

By the way I just have to say here - how amazing is my family that they all came to hospital to make sure I was included in mum's birthday celebrations?  Truly blessed.

My facial muscles weren't working too well either - I looked like I was snarling when I was really just trying to smile.  I couldn't frown, & trying to lift my eyebrows made it look as though I was trying to make my eyes pop out of my head.  It is the weirdest sensation to try & explain to someone.  You think you know what your face is doing, but your muscles are just lazy.  And when you see yourself pulling a face, you realise just how silly you look & that oftentimes you look nothing like what you were imagining.  Surprised, cross, confused, or upset; they all just look like you are devoid of emotion.  And as you all know - I am one big emotional ball!  I wear my heart on my sleeve & often cry for the slightest thing.  So not being able to show other people how I am feeling, or even properly express it, is one of the worst things for me.

We had a lovely lunch with my mum, husband, brother, sister-in-law, nephew & sister (via FaceTime - thank you technology!) but I was finished.  Done.  I didn't even have the energy to sit up straight & keep up a positive front.  I was exhausted, emotional & just wanted to go home to my own bed & away from the hospital.  It was fantastic being able to spend that time with my family & it certainly helped lift my spirits.  My family are amazing.  The biggest blessing ever.  I don't know what I would do without them.

My family at our wedding.

The doctor came for my check up & decided that we should stop the drip.  Due to the fact that it is a high cortisone dose, this can bring on a relapse & this is where she felt I was headed.  In my mind I was scared of this too, but never want to admit that.  I hadn't felt so shocking for about 7 years.

My family left for the day, & husband walked me back to my bed where he helped me in & tried to get me to swallow some water so I wouldn't get dehydrated.  This can happen as I don't like to swallow anything extra when I am battling.  I got a wonderful surprise when my friend arrived to check up on me as well.  We chatted amongst ourselves for a while & they really helped lift my spirits again.  Thank goodness for friends, family, & my amazing support system.  Without them I think I would have fallen apart a very long time ago.  I am so lucky to have them in my life to lift me up when times get tough, they carry me through the terrifying times & support me through all this nonsense that has been thrown my way.  I know I am not always the easiest person to live with or to understand at the best of times, but there are some real gems in my life who have stuck by me through thick & thin, & have still loved me.

Warren & Miranda

I fell asleep that evening almost as soon as everyone had left & woke in time for dinner - which again I couldn't swallow.  I ate the gravy of the stew & some mashed butternut.  It wasn't a lot, but I needed to keep my strength up somehow & need some nutrition!

I slept straight through the night & the next day my drip was taken out.  They increased all my medications - I have gone from 4 tablets a day to 20.  This is still not too bad as I have been on many more than this, & I would rather rattle when I walk (from the meds) than go back to where I was with regard to my MG.  Monday was a constant improvement, & by Tuesday morning I felt almost back to my old self.  I was still a bit weak but that is probably from being a lazy bum staying in bed & not eating properly.  My doctor discharged me & I am now at home healing & getting stronger.  I am only allowed back to work next week Monday as I need to build up my strength, take things easy, sleep lots & allow the medicine to kick in properly.

I can honestly say that I am feeling one hundred times better than this weekend!  I was petrified & thought I was heading for crisis, but thanks to my fantastic doctor, the care at the hospital & all the prayers, I know that things will only improve & soon I shall be back to normal.

Our only concern now is having a baby.  The medication they have started me on can cause major birth defects & miscarriages.  Thus we cannot think about having a baby until I am off this medicine.  This has really broken my heart, as all I have ever dreamt of is being a mum.  Warren & I have spoken about having four kids & growing our family.  I feel like this is all my fault as if I wasn't sick I wouldn't have to be on this medicine, & then we could start our family immediately.  I want a Warren Jr running around the house like a hooligan, & a Megan Jr to play dolls with & plait her hair.  I want happy healthy children.  I know there are other alternatives & we are hopeful that I will come off this medicine & then can start trying for kids again.  But right now it is consuming my mind.  It is all I can think about.  I see all my friends falling pregnant & having babies, & I want that to be us!  I am ashamed to say that often the little green monster in me comes out - although I am very happy for them, please don't get me wrong.  All babies are a blessing & I am hoping that our day will come.

For now, I am sitting; waiting; healing; believing.  Every day gets a little easier & better with regard to my health & the magnitude of the consequences thereof.  And I have my cuddly pink bunny rabbit from my mum - because we all know that pink makes you feel better & happier!

Back to Boarding School

Yesterday I came for a check up with my neurologist as I have just not been coping with my steady decline with my health,  My talking, swallowing, smiling & so on have been getting worse almost on a daily basis - even after my plasmaphoresis exchange a month ago, & starting on prednisone 2 weeks ago.

She is not happy with how quickly I have gone down, & after consulting with a professor of neurology, it has been decided that I get readmitted into St Augustine's hospital in Durban (an hour away from my darling husband), & begin treatment.  We have always had a joke that I am "looking for attention" when I end up going down or coming back to hospital - it sometimes helps to make light of the situation & to not take life too seriously.  For surely it is better to smile, laugh & let your problems roll off you, that to let them control your life?

Initially they thought they were going to perform cyclophosphamide infusions monthly - this is a mild type of chemo & makes you feel rotten.  Another terrible side effect is the fact that I cannot fall pregnant whilst having this, & that is a scary thought.  As husband keeps reminding me, "he is not getting any younger".  In my opinion he is still a sexy man!  We know that God will bless us with children when it is our time, but it still an awful thought knowing that we would have to wait for even longer to add to our Hunter clan.  Currently we have our 2 furry children - Suki & Jun'ko - who we spoil rotten & are like our own children.

Our beautiful cats

But let me get back to my current treatment...

I was DREADING having chemo.  I have had it before, & although the results are amazing, it makes me feel rotten & I vomit for days afterwards.  You can't keep anything down so weight loss is another pro, but it is not worth the nausea that comes with it.  So many people have been praying for me since I heard, & I knew that God would pull me through it safely.  But I also know that I do need some kind of miracle to lift me out of this slump, so I would go through chemo if that was what I needed.

BUT, God is good!

I arrived in hospital, got checked in & settled into my bed.  I was prepared for anything!  I even had my chemo survival kit - consisting of my Bible, coke, ginger biscuits, peppermints & dark chocolate.  These have always helped me through the previous ones, & were also suggested by a very special snowflake friend of mine (thanks Jojo).  Plus when I finally found a coke with my name on it, I took it as a sign that I needed to buy it!

Chemo Survival Pack

My doctor came to see me just after I was admitted & told me that after discussing me with Prof, they have decided to not go with the Cyclophosphamide but rather try Solumedrol.  I have never had it before, but  apparently results are good.  My doctor told me it is a very strong type of cortisone, so I will have this every day for the next 5 days as well as adding an extra 2 tablets to my current medicines - so  now I will be taking 60mg Mestinon 4 times a day, & 250mg CellCept twice a day.  I am a bit upset about the CellCept as I have only recently gone off that, & falling pregnant on the CellCept is not really advised - there is an increase in the number of miscarriages & birth defects with mothers on CellCept.  But I have faith & am trusting that all will be fine with us.  They think I will have to be on the CellCept for the rest of my life, along with the Mestinon.

The nurses came to put up my drip, & straight away my veins ran away!  I think the moment they hear that I am back in hospital they decide to hide away...  It is awful.  I know it's coming & I warn the nurses, but they have to battle through in order to set up a drip so I can start my treatment.  First poke - the vein just disappeared.  They had it, it was beautiful & showing nicely; but the moment the needle went in it just disappeared never to be seen again!  Second poke - the vein was big & strong after having the tourniquet being tightly wound around my arm, as well as the nurse squeezing to lift it.  Another nurse came & tried to stick in the needle, & straight away my vein blew.  It hurt like hell!  I know I am a wimp, but I started crying straight away.  My arm is now wonderfully bruised, slightly swollen & bleeding!  The poor nurse at this stage said she was nervous & would rather phone someone from the Trauma unit to come & put it in as they deal with troublesome veins on a daily basis.  Third poke - and it is in!  After plenty of time looking at my veins & trying to find the best one, they found a beautiful one in my right hand.  It went in first time & I think I may have even done my little happy dance.

Drip is in!

They have started my Solumedrol infusion & so far I haven't experienced any side effects, besides a positively awful taste in my mouth.  They have given me something for an upset tummy & nausea as apparently this is quite common.  The sleeping & relaxing in a bed is already making me feel better, but I am quite upset that I am away from home for another 5 days - I miss my husband, my cats & my own bed.  But I am grateful that I can come to hospital & that there is something that will help me & make me feel better.  And I am grateful it is only for 5 days & not for a couple of weeks or anything as extreme as that.  I also feel terribly bad about having to take more time off work - I was off for 2 weeks last month, & now another couple of days this time around.  I am not a sickly person usually, so I think they do understand that I am not putting this on, nor do I enjoy spending more time at my boarding school (aka hospital).

I am praying that this will be my last hospital visit for a while so our lives can start going back to normal.  This is not a pleasant thing to go through, & sometimes it does get me quite down.  I am trying hard to stay positive, & keep thinking of my drip as being my very own "Gummy Berry Juice: to give me back my bounce!  That does help.  Also all the support from family, friends, my doctor & the nursing staff here is simply amazing.  This will be the last of my nonsense, &  I promise to stop looking for attention now!

Vrot Day

Today has not been a good day.

I had great plans to write the most amazing blog, but I just don't think I can.

Today at work I had to phone a client & give them my email address - it is meganh@hh********.  I can't pronounce my h's when I am battling - so trying to get this across took quite a while.  She kept asking me if it was megan8@88 - eventually I just packed up laughing & told her I have a speech problem (my quick solution rather than a long explanation) & soon she was giggling along with me.  But it still sucks.  I really thought I was getting better - not hitting another "thspecial" time in my life.

I pushed myself a little too hard this weekend - visiting friends, a church conference, watching rugby, helping at church & then my brother-in-law's birthday braai.

Watching the Sharks vs Lions rugby with husband

The amazing friends that I worked with at church on Sunday

Brother Shaun blowing out his candles

So, today I am done.  My talking is slurred, eyes are blurry & while I am leaning forward typing on my laptop, my head just wants to flop forward completely.  I am battling to hold it up completely.

So I am sorry.  I will write a long blog soon - hopefully tomorrow or Wednesday.

I am going for a check-up with my amazing doctor on Thursday, so I am praying she will be able to give me some magic cure that will set me straight again.

Until then, I need to go have a long sleep.

I have been reminded again that I cannot push myself the way 'normal' people do - I don't bounce back as quickly & I do need my rest.  I sometimes get horribly despondent as I just want to be able to keep up with other people my age - instead I more often than not have to excuse myself & go have a snooze.

But, tomorrow is a new day.  It will be better.  I have some sexy new shoes from husband & I will go out ready to greet the day with a smile.  I will stay strong.  I will stay positive.  I will see all the good in the day, & not let my slurred talking get in the way of laughing!

Sweet dreams everyone - may tomorrow be a better day for you, & don't forget to smile x

Sisterly Love

This is my sister…  Her name is Kate Couchman.  And she is amazing. Actually, make that #amazeballs.

Kate, maid-of-honour at my wedding in 2012.

My sister & I have always been very close.  She has been my best friend throughout my entire life.  Although there is quite a large age gap between us (10 years to be exact), it has never felt that way.  We have shared many giggles, tears & memories throughout my life.

First photo together

At a rugby event before I was diagnosed

Kate was there by my side the day I was diagnosed & has helped to lift my spirits in every situation that gets thrown my way.  She has helped me to laugh through my tears, to see the positive & to realise that Myasthenia Gravis cannot control my life.  She is one of the people I can be completely honest with, & she will still love me.

Celebrating my hen's night.

I could write about 20 blogs with all the stories throughout our lives, but this one is to show how far sisterly love can go.  My sister (#amazeballs) is currently working & living in the UK (the rest of the us live in South Africa).  She moved there in 2011 & being away from her has probably been the most difficult thing ever.

 A couple of weeks ago, my sister had a bright idea to do some fundraising for the Myasthenia Gravis Association in the UK.  Unfortunately we do not yet have something like this in South Africa, but they use any extra funding for research & to help create awareness for this disease.  She has chosen to do 3 big challenges this year – the Thames Path Challenge 100km walk/jog/run; the Grand Union Canal Challenge; as well as the Yorkshire 3 Peaks.  This is all after never doing anything more than a 10km fun run previously.  She has been working so hard, even getting a personal trainer to help her through an injury obtained whilst training – and she managed to convince her boyfriend to join her on one of them!

All of this is slowly helping to raise awareness in the UK as she has been interviewed for local newspapers & slowly word is getting out about all she is doing for the snowflakes out there.

The article in which we appeared.

She is working so hard to raise funds for my disease, & so far has managed to raise £332.50 through Virgin Money Giving thanks to the support of friends, family & colleagues.  She is hoping to at least get to £1,000.00 before her first challenge.  All of this will go towards her chosen charity - MGA.

She has also had some amazing sponsorship for raffles that she is going to be selling – a whole week for 6 people to stay at Laggan Drey in Newtonmore (Scotland); a voucher for the highest restaurant in London for champagne & canapés (the Radio Rooftop); a case of wine; and I am so excited as Indieberries has very kindly sponsored a Doodle Book & Love Vouchers as another award.  Head on over to her blog if you would like a laugh - it is well worth it!

Laggan Drey in Scotland - absolutely stunning!

Radio Rooftop - London

Hopefully through all the awareness being created & fundraising Kate is doing that more people will know about MG, & one day soon they will find a cure for this currently incurable disease.  I pray that this will spread through to South Africa & that soon we will be as jacked up as the UK & USA.  My only wish is that I could be there in person cheering her on & encouraging her through everything, as she has done for me my whole life.

So this is my sister.  Her name is Kate Couchman.  She is a legend.  She is amazing.  She is #AMAZEBALLS.  I love you so much Katie & appreciate all you are doing - more than you could ever realise.  I miss our leg hugs (arms are never enough), lovebeams, cuddles in the morning & whispering secrets to one another on Mum's couch.  I love you so so so much.  Always & forever.

P.S. I am trying to organise an association here in South Africa – so if anyone has any advice on how to get one going, I would really appreciate it!

We would also really appreciate any other fundraising ideas to help my sister reach her goal - please comment below.  Thank you x

Are you drunk?

Yes, I have had people ask me this.  The reason – I slur my words.  Especially in the afternoon, or after talking for a while.  This is where my being so “thspecial” comes from.  I remember when I was first diagnosed, my family & I made up a little rhyme to ‘test’ my talking.  It went like this, “Let’s look at Doctor Judy eating boerewors & chocolate on Wednesdays” – these were a lot of the sounds I battled with & often struggled to form.  Plus Doctor Judy is my fabulous neurologist, to whom I owe my life.  I had to throw her in as a daily reminder!  I used to have to repeat this countless times every day & we would score it – 10 being absolutely perfect (in other words I sounded like any normal, healthy person), & 1 being shocking whereby even mum & Kate (my sister) couldn’t understand me.

My main issues have been with my facial muscles & the associated actions – i.e. swallowing, talking, smiling, closing my eyes & so on.  This is always how I can judge when I am going down & this is how my symptoms first presented themselves in 2003.  Here are a few more things my illness throws in my direction every now & again – often just to remind me it is still there & I can’t overexert myself.

Do not even try mouthwash!  Gargling is impossible.  When I tried to use it, I used to have to put a tiny bit in my mouth & shake my head around – had some good head banging moments, but half the time the mouthwash spilt out of my mouth as well.  Not attractive.

Chewing gum is another absolute no-no.  It tires out your mouth, which causes further slurring, drooling & trouble chewing food.  And it happens so quickly!  The same can be said for tough food (i.e. steak etc) so I rather stick to soft, easy to chew foods – even today.

The number of times I have choked on lettuce or sweetcorn is ridiculous.  And choking when you have MG is not fun.  Because these muscles don’t work you cannot cough properly, you cannot swallow properly, & you cannot even bring this up.  Lettuce was my enemy for many years.  I have turned blue, had the Heimlich performed on me & ended up being rushed to the ER because of this evil food.  The food just sits in your throat which prevents you from breathing properly & this progresses into pure panic.  So as you were taught when you were little – chew your food properly.  I still take forever to eat as I am so nervous of an attack to happen again – in fact I am often still on my first course when my family are dishing up seconds.

It feels like my teeth or the shape of my mouth has changed.  I often end up gnawing on the inside of my cheek, my tongue, or nothing at all.  And often food will just fall right back out again.  It has changed the way I chew completely, & sometimes funny little snorts/hiccups/noises just appear while I am eating, which gives me the giggles & makes it even more difficult to finish my food.  I am sorry.  My mother did teach me manners, my MG just sometimes takes over.

Birthdays are a big thing to me.  I mean, they are a HUGE thing to me.  I love going all out – for others & for my own.  We decorate the desk of the birthday person at work with streamers, a banner & balloons.  But I cannot blow up a balloon.  I can puff up my cheeks somewhat but nothing goes into the balloon.  I am not sure if perhaps I have a slow leak in my cheek that I don’t know about, but that air does not go into the balloon.  I just end up making a funny noise & handing over a limp, probably soggy balloon.  So rather keep me away – it is not pleasant. 

The same can be said for me trying to whistle – what a joke!  I cannot even purse my lips, let alone make some kind of sound come out of them.  Maybe you will hear a slight rushing of wind if you listen closely, & if I focus very hard.  I can’t even blow out candles, although all the little nieces & nephews love this as they get to help me.

I have developed little quirks to help cope on a daily basis.  I clear my throat often as this helps my saliva to go down if it is just sitting there, although I do choke on it from time to time.  As I said before, at my worst I had to mop up my spit as it was not going anywhere!  So it always, ahem, sounds like I have something very, ahem, important to say – but this is not always the case.  Plus it can be easier to write out what I am feeling rather than talking.  At work I prefer to communicate over email rather than picking up the phone to call someone.  Talking is an effort – let me stress that.  It feels like my tongue is numb & too big for my mouth & every. single. word. is. an. effort.  It’s like trying to talk with a massive grape in your mouth & still pronounce your words correctly.  If you can hear my talking has gone funny, it probably means I am battling to get the words out.

Another quirk is my trying to swallow, or get the food down.  I have learnt to tip my head to the left & toss slightly.  For some reason this makes swallowing easier & helps the food to go down safely – without causing a scene.  If there is food stuck between my cheeks & teeth, I have to use my hand to push on the outside of my cheek so the food can be swallowed.  All in all it makes eating an absolute experience.  I hate it when people watch me eat.  I would rather sit there & starve than have someone watching me eat.  It makes me very self-conscious & I can only imagine what is going through their mind watching this loopy child trying to get her food down – looks like some kind of new age dance craze that hasn’t quite caught on.

Building up breath is not easy (see above about my attempts to blow up a balloon), & so trying to blow my nose is tricky.  I can’t clear my nostrils properly & often the air escapes through that invisible vent in my cheek. This can lead to worse infections & a very stuffy nose!  Sometimes when I am tired I battle to yawn – that breath escapes as well & I just end up pulling a face that makes me look & feel like a complete banana.

One day mum spoilt me & took me to go have my make-up professionally done.  Everything was amazing – up until they applied the lipstick, & told me, “Just go mmmmm with your lips.”  Well, mum & I looked at one another & burst out laughing.  I cannot lick my lips, smush them together when applying lipstick, or even catch any food that is sitting in the corner of my lips.  My smile isn’t strong either – the corners of my mouth don’t lift up properly & people often think I am snarling at them.  This is not the case.  Unless you have made me very angry, it is probably me trying to smile at you!  So please forgive me.

Ladies & gentlemen I am a drooler.  Every morning I wake up with a wet pillow.  My mouth doesn’t close properly & this means it just slips out during the night.  It isn’t attractive.  It does however make us laugh as it is almost like I am having a second bath during the night.  Have to quickly wipe my face before getting up & jump in the shower before husband can see me!

Another thing that happens during the night is I cannot close my eyes properly.  This actually happens the whole time, but you mainly see it at night.  Husband has often said he has woken up to see the whites of my eyes shining at him.  The lids just don’t close.  I can try as hard as I want but my eyes just don’t close!  I have to put eye drops in continually so my eyes don’t dry out.  I don’t notice it, but I do apologise to others who have to get the freaky eye treatment.

I have run out of breath on countless occasions.  From laughing too hard, to having a good cry, to finishing a sentence, to climbing a flight of stairs.  I may be unfit, but it is not only that.  Any exertion on any of my muscles will have an effect on my other muscles.  My heart will also beat rapidly after any exertion, & I sometimes start sweating for no apparent cause.  Sunlight & other bright light affect me negatively, & sometimes exacerbate my symptoms.  I cannot go anywhere without my sunglasses, or else I end up like a vampire burrowed away & hiding from the evilness that is the sun.  I squint, pull funny faces & my eyes water like mad.  Maybe I am actually a bit of a vampire – this would explain why I am so pale as well….  Hmmm….

Drinking – it is not always easy, & I often end up seeing double.  And no, I am not even talking about the alcoholic type.  The easiest liquid to get down is a milky consistency, like a milkshake.  But don’t expect me to use a straw as I cannot suck – that shake will stay in the glass & more often than not I will end up drooling down the glass in an effort to get something up!  So I will pick up the big milkshake glass & drink directly from it.  It is not ladylike, but I am sure you would prefer to see me doing that than drooling back down my straw?  Hot liquids make me talk ‘funny’ almost as soon as I have one, & I have even had liquids come out of my nose whilst trying to drink.  Cool party trick or more freakiness?! 

Thank you for sharing my laughs with me – I am sure there are plenty more that you may have experienced yourself, or have been through with me.  Thank you for making me laugh at myself & not get upset when things don’t work out the way they should.  Thank you for keeping me positive & strong through all of this - & helping me to see the light at the end of the tunnel.  I will not give up.  I will get better & all of these have made a stronger person & helped me to become the person I am today.

But when I do cry, thank you for understanding.  Thank you for holding my hand, for trying to make sense of what I am saying & not getting impatient, for helping me around the house, for pulling me up off wherever I was stuck & for trying to understand what I am going through.  Thank you for not telling me to “pull myself together” or to “stop putting this on”.  I don’t enjoy being sick, & wouldn't wish this onto anybody.

Thank you for your support.  Family, friends, doctors, colleagues, & randoms – all of you are special.  Those little messages or pictures you send through mean the world to me.  Thank you for never pushing me, & for understanding when I say I cannot cope.  Thank you for organising things to make it easier for me.  Thank you for loving me the way I am – “thspecial” talking & all.

Thank you.  From the bottom of my butt.  Because that is bigger than my heart!

Daily Troubles

There are many situations I have found myself in, and sometimes still find myself in, that make me laugh out loud!  This is due to my wonderful illness that developed – out of nowhere I may add – in 2003 when I was 15.

Getting up off the floor is near impossible.  If I have to get onto my haunches or sit on the floor, it is often easier to crawl to a chair or the like in order to pull myself up.  If there is someone nearby then I will ask for their assistance.  Have to giggle at the fact that when I am down I am stuck there!  No squats for me – tried this once at gym & promptly fell on my bum before having to ask the instructor to lift me up again.

Getting off a chair, or even the loo is tricky at the easiest of times – trying this in heels is next to impossible without leaning on the table, pulling at the door, or having to call a friend in to help.  Note to self – do not lock the door to the loo when you are feeling weak; you could be stuck there for a while!

We love our church.  I don’t know what we did before it.  We have developed amazing relationships there & the service gets you ready for the week ahead.  However, the constant standing up & sitting down for an hour long service can sometimes feel like running a marathon.  I need a snooze after them.  And singing (not that I am any good, people tend to block their ears when I start) is near impossible.  I can’t get the words out, it is an effort, & sometimes no sound comes out.  Maybe God is saying its better I just praise him on the inside?!

Sitting up on a bed is not fun.  You try & try, but your neck just seems to want to stay behind.  Your head doesn’t want to leave the pillow as your neck has just given up – it is easier to roll onto your side & push yourself up that way.  And don’t even talk to me about those chairs at a salon where you get your hair washed!!  When the lady washing my hair asks me to “just lift my head for a bit” so she can wash the back, I have to ask her to give it a push.  Thank goodness I go to a friend of mine so we can chuckle about this together – it can be slightly embarrassing when it is someone who doesn’t know.

Standing in a queue, shopping, washing dishes, cooking dinner, & so on makes you feel as if you have run a marathon.  I often use a trolley as a crutch of sort so I have something to lean on & carry me around the shop/back to the car.  The one time my very sweet husband offered to push the trolley for me as he could see I was tired & I almost started crying – if I had had the energy.  Now he knows to leave me ‘pushing’, & he often pulls it slowly from the front to help carry the weight.

Climbing stairs is like mountaineering!  One little step takes great effort & concentration – a flight of stairs is like conquering Kilimanjaro.  So if you see me taking a deep breath in preparation, laugh along with me & let’s do this together – no really, I do much prefer walking up stairs next to someone.  In fact when I was very ill my sister used to walk behind me & push my bum – I think we laughed more than getting very far but I appreciated the gesture.

Following on from the above, I trip over the smallest thing.  A carpet, grass, stone, you name it.  My feet don’t follow where I tell them & I can’t pick them up higher than just necessary without extreme concentration & watching exactly where I am going.  Walking in heels has become a fine art, one which I am slowly learning to perfect as my husband is a giant next to me & I like to look at his face rather than into his armpit!

Now, I am a girly-girl.  I like to look my best & in fact studied Beauty Therapy after school.  Have you ever tried to put on make-up after working out at the gym, & your arms feel like they just cannot hold themselves up?  Mine are like that almost on a daily basis.  When putting on make-up, I support my right arm with my left, & often lean on a counter to ensure I don’t just blob it onto my face.  I also had my hair cut short for many years as I could not hold up my arms long enough to tie up my hair (especially when I was at school).  This is my early morning workout – gym, who needs you!  I can wash my hair & do make-up & get a workout like you cannot believe!

I am a nerd.  A complete & utter bookworm.  In fact I cannot sleep without reading before bed.  It drives my husband mad as I will climb into bed complaining I am exhausted, & then stay up longer reading my book.  But holding up a book takes extreme effort.  My arms tire quickly & I often have to rest them on a cushion, or sit up again & place the book on my lap.  After a couple of pages (especially at night), everything goes a bit blurry from the double vision, & this is when I know it is definitely time to go to sleep.

When I tried to go to school my first year I was diagnosed, I ended up dropping my files & books more often than being able to carry them.  When I went back to school in 2005, I had an amazing friend that would pick up my bag after every lesson & carry it to the next.  He was such a sweetie – he was a big tough man that carried a bright pink school bag with a little Piglet keyring attached.  I felt for him but he never let me down, he was always there to lend a hand.  Now I battle with carrying heavy dishes, boxes, groceries or the sorts & more often than not end up dropping these onto the floor.  It takes me longer to lay the table at dinner or carry things to & from the car, but rather that than drop it all & have to start from scratch.

Washing windows, holding the steering wheel to drive, changing gears in a car, or any other tasks that involve lifting my arms can be totally exhausting.  Sometimes I have to physically put my whole body weight behind my arm to change from 2^nd to 3^rd gear!

Extreme temperature makes me miserable.  Hot/cold food, hot/cold drinks, hot/cold rooms, hot/cold weather, hot/cold showers/baths etc.  They exacerbate my symptoms & often leaving me feeling weaker than ever.  A complete & utter drain of power.  They are my kryptonite.  Luckily these can be avoided majority of the time thanks to aircon, but if you see me slowly melting, please pull me to safety.

I hope you can laugh along with me at some of these – tomorrow I will post some different ones.

This disease has been a huge learning curve, & I have had to figure out different ways to conserve my energy & cope with the day, especially now that I am working.  Luckily my work colleagues understand & are very helpful in everything they can be.  Husband is a saint as he cooks dinner more often than not, especially when I am feeling pap after an extreme day (you know, an 8-5 day with temperatures reaching 30 degrees – that kind of extreme!).  Mum still stresses about me, but I always will be her baby.  I am slowly learning my limits & learning not to push too hard.  It is just not worth it in the long run.  I have missed out on a few things, but I also realise that I have to go through this to get to a specific destination in my life.  There is a bigger picture.  I can’t see all of it right now, but I know that something great is going to happen!