Under the effects

Yesterday I was re-admitted into hospital to have a new permcath fitted (it was taken out last month after it was constantly blocking during treatment & giving me all sorts of hassles - let me tell you, being free of it for a whole month was better than I could have ever expected!) & a fistula for future treatments.

We were at hospital bright & early, & did my admission so they could start prepping me for surgery.  The idea of going under anaesthetic is never something I look forward to.  With Myasthenia Gravis your muscles are already so weak, that going under & getting certain muscles relaxants causes huge stress to the body & it can be fatal. So even though it is just a small operation, I always start to panic when I know what is coming.  I signed all the necessary forms then waited - and waited.  I was starting to get hangry (angry from the hunger, as the last meal I ate was 7pm the evening before!) & the longer I lay there the more my thoughts started going crazy.

Eventually they wheeled me into theatre at about 1pm & started scanning my veins to see where they could insert the fistula.  It was not good news.  My veins are so tiny & run away the moment I come into hospital so the vascular surgeon said it is impossible to do a fistula as my veins wouldn't hold.  The vascular surgeon scanned both arms & even in my neck but none wanted to participate.  The anaethetist even said I have baby veins & took about 15 minutes just to find a vein that she could put the drip up into.  But, she got one in eventually!

I woke up after the op feeling good & my permcath in with no complications.

They have inserted it more along the side of my chest, rather than down the centre. So movement is a lot easier & the only real pain I am battling with is in my neck.  I think the surgeons are a lot more rough on us when we are under anaesthetic than we realise.  Plus this is the original incision site & where they insert the pipes so its expected to be sore!

My doctor who oversees my plasmapheresis came to see me & she said she hasn't seen me this good in ages, so it actually looks like everything is working now!  She was ok with the fact that they couldn't do the fistula as we are now hoping I won't need this on such a long-term basis.  Wouldn't that be great??  So this permcath will stay in for another 3-4 treatments & we will reassess to see if we think I should get a fistula fitted, or just come in every couple of months for a 'top-up'.

For now though, I would like you to meet my new friend...

Every day I now have to squeeze this stress ball - not only to help get rid of any stress I may be fighting, but also to try strengthen my veins & build them up in case I need a fistula to be fitted.  So it really kills two birds with one stone!  Hopefully this will help make it easier to take blood as well, as this is never a pleasant experience.  I'm telling you, my veins know when it is hospital time & go running to their secret fort, only to return once I am home safely...

Be safe, be kind, be strong xxx

I am more than MG

Almost 2 months ago I landed my absolute dream job – helping with administration for Rare Diseases South Africa.  It has relit a fire within me & reminded me about my passion for helping others.  It has woken up my brain (it was starting to turn to mush not doing much at home since July) & really made my heart happy.  I feel like I lost a part of myself over the past few years & was simply floating along doing what society expected of me, & I was allowing others to squash me & my dreams.  I allowed negativity into my life & was more focused on the “sick” part of me, without realising I needed to take care of myself as a whole!

Last week we travelled to Stellenbosch for RareX (an international conference on Rare Diseases – the first of its kind to be held in Africa) & I feel like I really learnt so much.  I met people from all over the world; was privileged to listen to speakers from different areas of the rare disease society; & medical professionals, patients & pharma companies were intermingling without any feeling of “not being good enough”.

  

Our welcome to Spier conference centre

The Rare Diseases SA stand with some of our "Rare Bears"

"Support in a Shoebox" explaining MG in simple terms - of course lots of snowflakes, a spoon, a ragdoll, an explanation of MG, & some of my medicine containers.

Although I pushed through long days, was on my feet for hours & chatted to everyone I could; I was happier than I have been in ages.  Every night we had something going on – dinner with friends, a cocktail party, a gala dinner, or just an evening in the bar.  I made new friends; drank wine; danced like a crazy person & laughed until my stomach & cheeks were sore.  My endorphins were out of control & I finally felt like the old Megs was back!  I allowed myself to have fun instead of just being boring & responsible – as per usual.  It was also so amazing telling people I had Myasthenia Gravis & they knew exactly what I was talking about, & could even offer some advice/encouragement.

Shevaun, Kelly & myself on day 1

 I have realised that for so long I didn’t allow myself to have fun because I was so scared of the after-effects on my health; but also I allowed other people’s unkind words to control what I could & couldn’t do.  I realised people aren’t judging me when I start slurring, & friends will always laugh with me – not at me.  I felt like I was floating throughout my time there, & it has continued since I returned home.

With my new friend, Christina, from Kenya

It was a great reminder that Myasthenia Gravis isn’t all there is to me – I am still Megan Toni & I need to take care of all aspects of myself.  It is important to still have fun.  Take time to rest & take care of yourself; but still nurture every other part of yourself – emotionally, mentally & physically.  Make your heart happy; tell jokes; feel free to make a fool of yourself; don’t allow yourself to become a ‘plank’; laugh as often as you can; & make new friends wherever you are.  This will all help bring out the part of yourself that may have completely disappeared over the years of being chronically ill!

Chronically Ill

As I write this, I am lying in my hospital bed - for the third time in under 3 months.  And let me tell you, it doesn't get any easier no matter how often you come to hospital.  I still get butterflies in my tummy when I know I am coming here & dread the idea of more time away from "normality".  I am back for more plasmapheresis, & although I love feeling so much stronger, I HATE having to be admitted again & the fact that I cannot function as a normal person.

When you first get diagnosed with a chronic illness & have to go to hospital; you get visitors every day - flowers, cards, messages & phone calls.  After a while these begin to dwindle (understandable as it seems to be a frequent occurrence) & after 12 years it is pretty much non-existent.  We don't expect people to fawn over us & act like we are dying every time we have to be admitted, but please do understand that coming to hospital is never something we would choose to do.  It is not a fun place to be.  We know what is going to happen & the pain that will most probably accompany our stay.  We know what it is like to be away from our family & friends; & we still get nervous about coming in. It hurts when family/friends seem blase about our time in hospital or almost don't care.  The days & nights are long here, & every little message or phone call means more than you could ever imagine.  You may not get a response from us straight away, but it gives us renewed hope & our heart becomes slightly fuller thanks to your love & concern.

Being chronically ill means you still try to function as a 'normal' person, & then pay the price for it later.  Our lives have been changed forever & 'normal' for us is now numerous doctors visits; blood tests (& knowing which vein they should use!); finger pricks; & permanent ports.
It means calling your doctor by her first name & having her cell phone number stored for any emergencies; it means knowing more medical terms than some nurses; & it means hours of research into treatment options overseas.
Being chronically ill means you are covered in scars - each one a reminder of a battle you have fought & won.  It means you have had to grow up before your time, but still enjoy acting like a foll every so often.
Having a chronic illness means walking into High Care & having the nurses know you by name; it means never being able to leave the house without your medicine; it means planning for a night away to ensure you are covered in case of any emergency & have the necessary drugs.
Having a chronic illness means your medical savings are finished at least half way through the year - and that's if you have had a good, healthy year!  It also means the pharmacist knowing you by your name & having your medicine ready for you when it is time for your script to be refilled.
Being chronically ill means you have had pipes & tubes inserted into your body to help you function; it means the side effects of your meds leads to you needing to take more medicine; & it means you can't simply take over the counter medication without researching it thoroughly.
Being chronically ill means you most probably know how to connect your own heart monitors by now & can probably even attach your own blood pressure cuff  without a nurse's assistance.
Being chronically ill means you have probably missed your own birthday party; it means you have probably slept through a Christmas lunch with the family & it means you have been called rude at least once in your life - even by your own family.  It means owning more pajamas than normal clothing; & still getting excited when you get given more.
Having a chronic illness means you have to learn to be strong & understand that hurtful words more often than not come from a place of naivety & lack of knowledge.  You will learn that certain people always think that they know better - let them.


It means you know how to smile when all you want to do is cry.  It means you keep your brave face on until you can be alone & let the tears simply flow.  It means you never give up.  No matter what.

Fighting every day to stay alive is not easy & of course there are moments where all you want to do is give up.  Never lose hope.  Surround yourself with happy, supportive people.  And know that you are a warrior.  And you are amazing.

Through a mother's eyes....

I asked my mum to explain what it has been like for her since my diagnosis - a reminder that a chronic disease doesn't just affect the person diagnosed, but also the circle of support around them.

This lady gave me life, is my rock & my best friend.

I couldn't have wished for better!

Meg’s Myasthenia Gravis- a mother’s point of view.

On the 16 May 1988 a very special and much awaited baby was born to Robyn and the late Antony Couchman. Yes, Meg’s dad passed away just 6 weeks before her birth. She was a delightful, easy baby- discounting the bouts of colic!!

When Megs was three we moved to a boarding school, where she quickly endeared herself to the staff and girls. She loved her fairies and spent hours making gardens for them. She was generally a very healthy little girl who had none of the childhood illnesses. She loved school and excelled academically. Half way through her grade 9 year, I realized that it was time for me to seek new pastures. However, something was wrong! Megs said she was battling to swallow and after taking her to a doctor who told me she had “Globus hysterics” which was like a psychological eating disorder. 

A psychologist suggested that I take Megs to a neurologist and mentioned Judy Green. I wondered if the stress of a move to a new home had caused this. Once we were in Durban we took the first appointment available. In the meantime her symptoms got progressively worse, to the point that she could not swallow her own saliva, she was battling to speak normally and her eyes never shut. I was desperate who could I turn to? Have I left it too late? I felt guilty because I may have caused this illness.

Judy was wonderful and diagnosed Megs with Myasthenia Gravis within minutes of seeing her. One of the questions Judy asked; had Megs ever had a Hepatitis vaccine!! Yes, she had and I had taken her for this, because she had come in contact with one of the staff members who had hepatitis and it was suggested that Megs had the vaccine. I felt so guilty for having done this.

Megs had her first tablet for MG within hours of seeing Judy- they had to crush the tablet and mix it with water and squirt in small amounts at a time. I think it took 3 hours to have one tablet, because she could not swallow. But she did have a positive reaction.

Katie, Megs older sister has been a wonderful support and even spent the night in hospital with Megs before she had her thymectomy. What can one do when you see your baby child attached to all sorts of machines, that beep and click; lights flicker and your child battling to wake up. There have been occasions when she has battled with her breathing and had to rush off to hospital for oxygen. Times where the incorrect line has been put up for plasma and the correct one refitted. You cannot cry in front of your child- you have to be strong as you are their support, but your heart is breaking.

I can’t tell you how many times Megs has been in hospital for different procedures and every time she goes in, my heart beats in my throat and my heart pounds– I know she has to be in hospital, so that she can get better, but the pain she has to go through when they insert the line for plasma. She never complains, instead she looks forward to seeing her other mother, ”Judy” , Marge and Margaret and her nurse friends- who all know her and spend time talking to her. I just wish I could take the pain away and know that she is going to come through each hospital stay with flying colours.

It has not been an easy road as a single parent, but I have some very supportive family and friends. However, there are many people who have passed some very negative comments, some thinking that this is “all in Megs mind”. I often wish that they would have to endure just one week of what Megs goes through- perhaps then they would have a better understanding and be more compassionate.

An unexpected addition

When I finally moved to Jo'burg to be with husband, (the short story is that I was not coping health-wise anymore, & could not even make it through a full day of work without feeling like I was going to pass out driving home & so came to our new home earlier than expected.  I was worse than I have been in years & was terrified of hitting full-blown crisis & thus being separated from my husband for even longer.) I had an appointment with my new neurologist in order to discuss our plan going forward.

She examined me after discussing all my previous medical history & treatments; & said weakness of my facial muscles is pronounced, with my talking very nasal & my uvula not moving at all.  I could not get off the floor without assistance; could not hold my head up against any resistance; my eyes do not close; i couldn't hold up my arms for any amount of time & I was absolutely exhausted.  She was concerned at just how bad I was & sent me for a battery of tests to see if we can get any further answers.

Straight away I went to have blood tests to check my antibody levels; liver function & all sorts of other things - they drew 10 vials of blood in total (yes, I almost passed out & had to sit quietly once they had finished - I am still a huge wimp when it comes to needles).
I then had to go for a CT scan of my chest in order for them to check if my thymoma had come back (I had my thymus gland removed 2 months after I was diagnosed, but if they had left anything behind, this can grow back & cause further antibodies to be produced).  With a CT scan you have to lie very still - you have to hold your breath whilst they are taking the "pictures" so that nothing moves.  They run a drip of dye in that helps them to see everything more clearly - this drip makes you feel warm all over; gives you a metallic taste & makes you feel like you have wet your pants.  Not something they always warn you about so it can give you a bit of a fright!

In my sexy hospital gown waiting for my CT scan

The doctor & I discussed our plan going forward to try get me back to some form of normality & hopefully give me some enjoyment of life.  She has decided that I need to have a permcath inserted as I will need to go for multiple sessions of plasmapheresis & I cannot always have a temporary line inserted - this has become very painful & I have extreme scar tissue build up on the inside that makes it more dangerous & difficult for the doctors.  I will not be able to work for probably the next year due to all my treatment, & the fact that I will be in hospital for at least a week at a time for my plasma sessions.  This places huge financial strain on my husband who now has to carry both of us, & this stresses me out a bit.  However, my CT scan came back clear which is fantastic news!

I was admitted last week Thursday & taken to theatre - right before I went under they were still discussing if they were sure they wanted to insert the perm cath as my MG was really misbehaving, & I am already a risk going under anaesthetic.  We didn't want to take any unnecessary chances!  However, the necessity of getting my strength up outweighed the risks & after a quick prayer I was told to count backwards from 10; & the next thing I knew I was in recovery coughing out the pipe that was down my throat.

The ladies taking care of me in recovery were lovely & took such good care of me.  They stick this amazing pipe under the blanket that blows hot air on you so you feel toasty warm!  They came to take x-rays of my pipe to make sure everything was in the right place, & then I was taken to High Care (where husband was patiently waiting!) where I would spend the next couple of days for my plasmapheresis sessions.

An illustration showing what was done to me & how the pipes work

I had no idea what I looked like, or how much was actually sticking out of me.  I had acted like an ostrich with my head in the sand beforehand & didn't research anything - in fact I thought I was having a little port fitted like what chemotherapy patients have done.  So I got quite a shock when I had a look down & saw all these plasters & 2 pipes coming out of my boob area!

During my very first plasma session after having the permcath inserted

I was very sore that first day & didn't want to move too much - luckily the anaesthetic kept me quite sleepy & the pain killers pretty much knocked me out after that had worn off!  I didn't try be a hero & cope without pain killers as I have learnt my lesson from this before.

The next day I could already smile!  One treatment down & I felt like a new woman!

The top plaster is where they went in - they feed the tubes from here into my heart, & then use a guide wire to feed the tubing under my skin & out a little lower down to attach the outer connections to.

Showing all placement - excuse the heart monitors but these are a necessary fashion accessory in High Care!  You can see some of the bruising already coming out.

After 2 sessions of plex (plasma exchange) I could already feel a huge difference.  For the first time this year pretty much I was able to swallow my supper without choking & wasn't having to toss my head with every mouthful.  The doctors were super chuffed with my improvement & decided I would have 6 sessions this time around & then I would come back in 3 weeks for another 6 sessions.  Having them closer together will help to remove all traces of my antibodies before my body stores up too many again & hopefully I won't head towards crisis again!

I was so lucky to meet a fellow Myasthenic who I have been chatting with online & is in a support group.  She has always been such a sweetheart, so positive & always encouraging.  In fact she was the one who recommended my new neurologist & made me feel safe about starting with someone new.  Dyanne  was admitted into the bed next door to me for her rounds of plasma & it was such a treat finally being able to meet face to face.  She had had a really long journey to receiving her diagnosis & had initially been misdiagnosed with all sorts of other diseases before her drooping eye gave the doctor her "aha" moment that this is MG.  It was so lovely meeting another snowflake & having someone I could talk to, knowing that I was completely understood & wasn't being judged.  We laughed together, bonded over our new book (both of us had bought "Harry Potter & The Cursed Child" to hospital with us to take our mind off things) & just chatted about life in general.  I am truly blessed to have made a new friend, & know that we would probably not have met were it not for our MG!

Dyanne & me showing off our ports!

The doctors & nurses couldn't believe the difference in my talking, swallowing & general strength after a few sessions of plasmapheresis.  I had some special friends come to visit me in hospital & they commented on how they couldn't believe it was the same person!  It always makes me feel so good hearing that other people are seeing a difference in me & when they can get excited with me.
The only thing that frustrates me is when certain people make out I am so much worse than I actually am in order to make use of the sympathy card for themselves; or when they tell my family outrageous stories that aren't true,but make it sound even more exciting - not cool guys.  I don't need any more drama/spice added to my health issues thank you very much :)

I was discharged & am now at home relaxing, taking things easy, but also loving the fact that I can crochet again & have a bit more energy to cope with life in general.  My bruising has come out a bit more since being at home & is now a beautiful dark purple (thanks cortisone for making this look even more dramatic!)

The bruise starting to come out a bit more

The pipe you can see under my skin.

These pipes can stay in for the next 2 years if I take care of them properly.  I am not allowed to get anything wet & have to go for a dressing change once a week where they will properly clean everything, flush out my pipes & replace the waterproof dressing (oh, did I mention that I have developed an allergy to this plaster, but just have to suck it up as there is no alternative!).  Showering is rather tricky & I am trying to figure out how I can wash my hair without getting any water down my chest, but I am sure that over time this will be something I can do without any stress.  I also can't wear a bra as my pipes are just in the wrong place & I can't risk moving them by having a bra rubbing against them throughout the day (#freethenipple was not something I ever thought I would be supporting!).  These are just a small price to pay to feel like I do & to have the quality of life I do right now compared to only a week ago.

Appreciate your health & never take for granted the miracle that your body is in its constant functioning.  It is only when things go wrong that you begin to realise how amazing the human body truly is!

Moon Face

One of the joys of having an autoimmune disease, is that you are more often than not put onto an immune suppressant drug.  One that will help your body stop attacking itself, but will also leave you susceptible to every little germ that comes your way.  This is why I try to stay away from large crowds, & often don't visit friends when they are ill.  It is not for lack of caring, but rather for fear of being bed-bound after a quick chat.

One of the medicines I have been put onto is called Prednisone (a type of cortisone).

These small white tablets are very deceiving!  They don't look like much, but boy do they come with a list of side-effects.

Long-term use of steroids may lead to bone loss (osteoporosis), especially if you smoke, if you do not exercise, if you do not get enough vitamin D or calcium in your diet, or if you have a family history of osteoporosis.

Others include:

• stretchmarks & scarring (due to thinning of skin)

• sleep problems (insomnia), mood changes;
• increased appetite, gradual weight gain;
• acne, increased sweating, dry skin, thinning skin, bruising or discoloration;
• slow wound healing;
• headache, dizziness, spinning sensation;
• nausea, stomach pain, bloating; or
• changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).

But, the positives often outweigh the negatives.  Being on prednisone seems to have given me strength again & helped get my MG under control.  However it has ruined my self-confidence (not that I had much to begin with).  I was never one of the popular kids, or one with lots of friends.  I never had guys after me, & I have never felt "beautiful".  I have never felt like I have fitted in anywhere, & have constantly felt like an outsider looking in on everyone else enjoying life.  This has allowed me to grow internally, & to try to be the best possible person I can be mentally & emotionally.  I still feel like the odd one out, & get very embarrassed walking into a busy room (even if it is full of people I know).  Add to that a "moon-face", pimples, & now my pipes sticking out of my chest; & I often wonder if it wouldn't be easier to remain a hermit??

However, I will not give up & I will not allow my insecurities to get the better of me.
I won't be on prednisone forever, & if it is saving my life then all these horrid side-effects are worth it.

Looking back over photos of the last 12 years, where I have been on varying amounts of prednisone have shown a huge difference in my face shape & size.

At my 21st with my fabulous neurologist - I was very bad at this stage MG-wise & could not even smile.

Last year when I wasn't on any prednisone.

Current moon face.  This is the most difficult photo to have to put up as I feel disgusting.  I have probably deleted it & re-posted it about 5 times.

I will get healthy, & I will get my self-confidence back!

The mysterious giggle

Reading over my past couple of posts has made me realise that I seem to have been a moaning misery lately, & that is not me at all!  So today is just a quick post to show the lighter side of MG & share some of the giggles I have had through the tough times :)

Recently I had to go to a GP for a quick consult as I felt like I was coming down with something...
She told me she hadn't heard of MG since she was studying & couldn't remember exactly what it entailed - so I had to give her a quick lesson before she got anything wrong or prescribed me something that I am not allowed.  She also read up info in her little book that she had to ensure she was on top of everything.
I have now learnt to carry little cards with basic information that I give to the pharmacy & new doctor's that I go visit.  Oh the joys of a chronic illness!

I have realised I will never be able to stop taking medication (shake, rattle & roll baby!), & I will probably have to see a doctor for the rest of my life.  Majority of the time I eat my meals just so I can take my medicine & ensure I am getting the nutrients & chemicals I need to survive.  

So when I saw this next image, I couldn't help but giggle.  Who needs money when you can get scripts for life-saving medicine?  Yay!

This final picture was sent to me by a very dear friend who is a nurse at a government hospital.  We only met due to my health concerns, & now I can't imagine my life without her.  She always knows just what to say, & makes me laugh constantly.  She is the most caring person; & going into the doctor's rooms & seeing her there can turn my day around completely (for the better).

She saw the below on a ward chart of a patient, & sent it to me to see if I could make out what the diagnosis had been that the nurse wrote down.

Can you make it out?  Every time I think about it I start chuckling to myself.  As she said, it describes the symptoms of Myasthenia Gravis quite aptly!  We are rather mysterious...

I have had my illness called by many names (my-ass-is-thinner gravis; my-as-ta-hernia gravis; my-ass-theee-nya gravis); but never mysterious gravy as above!

And that's it for today.

Short, but just to hopefully bring a smile to your face as it did to mine.

Thank you for all the love, concern & messages that have been poured out over me during this trying time.  I really appreciate it (& you!)

MG from a sister's point of view

I recently asked my sister to wrote a guest post for my blog, to show another side of MG - that of what the family goes through.

Our very first picture together!

With my sister & brother

MG does not just affect the diagnosed member, but rather the family unit as a whole.

My sister has been there since the very first day that I was diagnosed (in fact I remember squeezing her hand as we were finally told what was wrong with me), & has not left my side throughout this journey.  She has made me laugh throughout & kept my spirits up through the darkest times of my life.  She has researched frantically to see if there is anything else that could help; she has done fundraisers overseas for MG & joined a support group in the UK.  She has never ever doubted me or put me down, but rather encouraged & loved me throughout this entire journey I have been on.

I could not imagine my life without my sister & I am truly grateful to have her in my life.  She is my best friend; my go-to-girl; my own cheerleader & an irreplaceable blessing in my life.  She always makes time for me & seems to know when I need a hug/message.  Throughout my life she has been such an example & someone I have looked up to as a role model since I can remember.

Thank you Katie for taking the time to write this (and for making me cry just reading through it!).  Katie I can't wait to make more memories with you.  You are one in a million xxx

P.S.  My sister is better than yours!

Isn't she just beautiful?

Living with Myasthenia Gravis - My life, as a sibling

Diagnosed in 2004, when Megs was only 15, after quite a few misdiagnoses … initially thinking it was a form of anorexia as she was struggling to swallow so eating VERY little, then diagnosed with depression as she started withdrawing and didn’t speak to us very much and finally we came across Dr Judy Green who instantly diagnosed our precious baby with Myasthenia Gravis and told us we could have killed her, had we left it any longer.  Poor Mum felt dreadful as we had been to about 6 doctors already in the past 4 months and the common diagnosis was “globus hystericus” so the mixed emotions of having a proper diagnosis was one of relief but the severity of that one comment was massive …. Little did we know what lay ahead!

At least Megs was admitted into hospital immediately for further tests and medicated so that we could start seeing some relief for her.  It has been an absolute roller coaster ride ever since but I cannot be prouder of my little sproglet.  She has faced everything head on with guts and determination.  From chemotherapy, major surgery, the list goes on … The doctors and nurses know her by her cheerfulness and something pink as she literally does brighten up a room.

She used to have plasmapheresis and asked for day passes to go shopping or when she was at school, to go to be allowed to matric balls – nothing was going to stand in her way!  She was discharged the day before her 21^st birthday after having had heavy doses of chemo, was lying on the couch, feeling dreadful, but pulled herself together as Jane Linley from East Coast Radio had organised The Big Favour for her, so we went to the Sharks match in a stretch limo and then onto Suncoast Casino for a Black and Bling party.

Megs always looks on the bright side and so facing her operation where they were going to remove her thymus gland, I stayed over with her the night before as I didn’t want her to be anxious… we watched America’s Next Top Model and so she decided to model the surgical underwear they provide, to make light of the situation – and is now quite proud of her “cleavage implant” she has from where they cut her ribs.

I have never come across someone who is as positive and makes as little fuss as this little angel.  She frequently can’t swallow and has to toss her head to help the food go down. Speaking is an effort, so has to rest her head so her body focuses on less muscles, yet she oozes love and positivity.  People don’t understand and frequently say hurtful things such as “at least you don’t have cancer” or “you’re so miserable and never join in conversations.” My heart breaks for her as she needs drugs to survive every single day. Breathing can be an effort. Her own body is attacking itself. There is no cure. She relies on hope. Hope for the future that there will be a breakthrough. I want to wrap her in cottonwool and protect her. I want to preserve her positivity and shower it over everybody. I want people to understand and give her a break. I want people to live a day in her shoes. I want people to be patient. I want people to be kind and loving. I want people to feel free to ask if they don’t understand but don’t judge – just because she looks beautiful doesn’t mean there isn’t a war going on inside and she’s struggling. So don’t hurt her emotionally as well – she’s dealing with enough!  She’s been coping for 13 years and it’s not getting easier. I have the greatest respect for her – I would be worn out by now, but she’s going strong and trying to raise awareness and still keeping her chin up!  She is truly remarkable and I have the utmost respect for her – my little source of inspiration.

The ugly face of MG

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

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

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

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

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

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

Currently I can barely drag myself out of bed.

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

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

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

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

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

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

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

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

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

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

My heart is breaking at the moment. 

I do not enjoy being sick for one single moment.

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

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

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

Please pray for a miracle. 

Pray for a cure. 

Pray for hope.

Pray that I can feel “normal” again.

xxx

My Hero

Do you remember in school how they would always get you to write an essay about the person you considered to be your hero?  I remember writing about Mother Theresa, Florence Nightingale & Racheltjie de Beer.  These were some amazing people that gave so much for others & put themselves second.

Now that I am older, I am blessed to know my hero personally.  This is my husband, Warren.

Taken the night we met

We met in 2011 at our local nightclub & I remember seeing him at the bar & my heart did a little jump-skip-hop.  I knew that this was someone special, but I didn’t realise the huge impact he would have on my life.  I did realise he was a keeper when he would travel across town every day to come visit me; bringing dinner, flowers & chocolate.  He made me laugh & brought out the very best in me.  We would have parties in the car when we were driving anywhere together & life was just more fun with him around.

2 months into our relationship I got very sick & ended up in a medically induced coma for a week.  I remember waking up & saying to him that this was his way out.  I understood if he didn’t want to be with someone with my issues.  I explained what MG is truly like & the issues it may bring.  He proved himself to me when he moved me in with him once I was out of hospital – he took such good care of me, cleaned my wounds & did everything he could to provide for us during this challenging time.

We got married in 2012 & I can still remember entering the church & seeing his face at the end of the aisle.  Again the jump-skip-hop & I wanted to run down to him (sorry mum for almost forgetting to walk slowly with you!).  We knew that God had brought us together for a reason & that He has an amazing future planned for us.

Fast forward to 2016.

This year has been tough (to say the very least!).

It started with us finding out on Warren’s birthday that our miracle baby had not made it.  Although he was breaking as well, he held me together & wiped away my tears.  He reminded me to not give up & kept me going through this very dark period.

When I officially miscarried; Warren was the man who was there holding my hand, crying with me & helping me cope with what was happening.  He put me in the shower & cuddled me in bed until we went to the hospital.  He was the last face I saw before I went under anaesthetic, & the first face I saw when I came round again.  It was breaking him as well, but he stayed strong for me.  He supported me & loved me.  We grieved for the loss of our baby, for the loss of what could have been & the loss of a future that was no more.

We had our second round of IVF.  We were positive & we never lost hope that this would be our time.  If one of us was having a tough day, the other would be strong & vice versa.  We never gave up on each other.  When this didn’t work, it was as though it had opened the floodgates of all our emotions that we had been hanging on to.  My health had been gradually deteriorating since the beginning of 2015 but I was determined to push through this. 

We cried, we screamed, we fought. 

But we still loved each other. 

Warren had the added pressure of false promises at his job & the pressure of providing for us in a tough environment.  I don’t think he ever really let on just how stressed he was, or what he was going through to ensure we made it through every month.  Then God showed us His plan & we were blessed when Warren got an amazing job opportunity.  It involves a relocation but we are trusting that this is where God wants us & we are excited for this adventure together.  It will allow us more precious time together & for us to grow together as a couple.

Warren is the man that stood by my side on mothers day this year.  He held me in his arms as I sobbed for the loss of our babies & the fact that I do not get to celebrate being a mother.  He squeezed my hand when we were out at lunch & the emotions started overwhelming me again.  He understood it was getting too much when all we were hearing was how amazing mothers are & I felt useless.  (Not taking away how amazing mothers are – gosh I have been blessed with the best mum & mum-in-law ever.  It was just a very emotional day.)  He just got me.

I don’t think people realise just how drastically my health has deteriorated this year.  We are often questioned as to why we don’t come out or aren’t more involved in things – well, here it is.

Myasthenia Gravis is not a fun disease.  It has attacked my body this year & left me feeling like a popped balloon – useless & flat.

I have had great difficulty making it through a full day of work – there are times I have climbed under a desk at lunch time just to have a nap to try make it through the afternoon. 

I have hardly any energy & getting out of bed takes a great amount of effort.  My muscles have been tired & weak, & there are times I cannot get out of bed on my own.  

Warren has had to help bath me, wash my hair, dry me & dress me.  That might sound very romantic, but believe me, when you feel like a baby & can do nothing but sit there & cry; it is anything but romantic!

I have been so exhausted when I get home that I simply plop onto the couch & either have a nap or watch some silly program.  Warren has been cooking dinner, cleaning the house & playing with our animals.  

For my birthday Warren cooked us a 3 course meal – one that he had googled “for people that have difficulty chewing & swallowing”.  It may not have been his ideal meal, but he always puts me before him.  He knows me so well – sometimes even better than I know myself.
I often cannot swallow or even chew food from about lunch time, so dinner parties & braais with mates more often than not end with us having to leave early or rather just not go - I get super self-conscious eating in front of any one.

He is a real life superhero!

He has been my “speaker” & translator on those days that my speech has been slurred & an effort (which seems to be every day lately).  He has never once laughed at me or told me I sound funny.  He takes the time to listen carefully & passes on any messages I may have for others – so please know that although I may not be talking to you, I am thinking of you.

Warren goes above & beyond what is ever expected of a husband.

We have been through more in our time together than most people have to deal with in an entire lifetime.  And he still amazes me every day.

He is my hero because of who he is, the person he makes me want to be, & the unwavering faith he has shown me throughout all of this.  For this I am truly blessed.

Babe, I know that I do not tell you enough, but I LOVE YOU.

There is nobody like you in this world.  I know for a fact that no-one could love me like you, & no other man could cope with what you have had to cope with.

Thank you for loving me through all the snot & trane.  Thank you for being my hands when mine give up.  Thank you for making me laugh when the tears have escaped yet again.  Thank you for supporting me, providing for me & ensuring I am never left wanting.  Thank you for teaching me unconditional love & for bringing out the best in me.  Thank you that every day with you is exciting & I am always learning something new about us.

I am forever grateful to God for bringing you into my life & for His perfect timing.

I can’t wait for this next adventure together & I know there are only good things ahead for us.

I love you – to the moon & back.

And you still make my heart jump-skip-hop - every single day xxx