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.

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.

Friendships - and the hardships

This week has been a very tiring one – both emotionally & physically…

It is my first week back at work since my op & I am finished.  I didn’t think I would be so exhausted, but my MG has been flaring up this week, with my talking going down by lunch time & sometimes I am unable to swallow my dinner.  I try keep on a brave face for those at work to not pity me, but I often find myself wishing for my bed.  It doesn’t help that it is so cold at the moment! Extreme temperatures are not good for us snowflakes – constant shivering means that our muscles are moving, which leads to muscle fatigue.  I also find I am battling more & more with the use of my fingers – typing can sometimes be a bit of an effort & making dinner is a bit of a chore currently.  Sometimes my hands just need to have a little snooze!

I have been thinking a lot about my friends this week, & how sometimes I feel it is easier to shut myself off from the world than to keep trying to fit in & just get hurt again.  Friends seem to be making plans right in front of me, without including me, & it reminds me time & time again how much I miss out on.  Just this week, I have had 2 friends make plans almost every night & talking about how much fun it will be – with no invite extended to me. 

Am I being oversensitive?  Perhaps. 

Are they sick of inviting me & I turn them down because of my MG?  Perhaps.

Do they think I am no fun because I am tired & slur my words?  Perhaps.

Do they presume I would rather just go home & sleep than spend time with friends who will make me laugh & cheer me up?  Perhaps.

I really feel like I have been missing out on a lot. 

Missing out on the fun evenings with friends; the dinners to celebrate the end of exams; the random braais or get-togethers; the gymming;  the nights out…  Sometimes I get so mad about having MG.  I feel like I have missed out on a lot, & I often feel that friends have given up on me.  Maybe they don’t have patience for me anymore, or the fact that I have often cancelled at the last minute.  I don’t enjoy cancelling, but I would rather stay at home & sleep than be out in public unable to talk or battling to swallow.

Sometimes I think it is my school friends who know me best & still love me.  They have seen me at probably my worst & are more understanding of when I cancel or stay at home weekend after weekend.  For example a very good friend of mine used to wash my hair when I was at hostel & didn’t have the energy to lift my arms.  There were plenty of giggles & we still joke about it to this day.  They were there for me to lift me up when I was down, to help me find something that I could swallow besides hostel food & to break into the kitchen to cook popcorn once I was finally able to swallow & was starving.

It is not easy meeting new people or having to explain why I am “thspecial” or why I am missing yet another social gathering; or why I have to ask to go have a snooze on their bed whilst there for a braai.  We have a wonderful couple who are so understanding with my sleeping the whole time – I think the very first night I met them I passed out on their couch, with all the dogs cuddled next to me.  I am lucky to have people like that in my life.

Currently I feel like I am all alone in the world.  I know it is just a phase.  I have had this feeling before & got over it.  I am very lucky with my husband who understands & knows to ask before making plans; or will happily leave a braai/party early so I can get home to sleep.  Same thing with my family – in fact they often encourage me to rather stay in than to go anywhere!  I can’t miss out on more than absolutely necessary though.  I have missed out on so much, & I HATE it.  I hate that I am not involved in planning of certain events; or that I am sleeping when that funny moment happens or when everyone is seeing the New Year in.  It hurts when I see yet another picture on Facebook or Whatsapp profile pic showing my friends out having fun.  Yet again I wasn’t included.  Yet again I was probably sitting at home watching a movie or sleeping.  Yet again I was thought of to be the boring old married woman (because yes, I have been told this is what I am!).  I have been told time & time again that I used to be fun & I used to go out partying – that was when my MG was co-operating.  Believe me, if I could I would still be doing it every night.  Sometimes just getting out of bed to go to work is enough of a chore for me, & going out jolling would probably be the end of me.

Thank you to my friends that have not given up on me.

Thank you to those that still continue to invite me.

Thank you to those that still come to visit & make me laugh.

Thank you for the memories.

Thank you for loving me even when I am not myself, but a melting snowflake devoid of all but the basics.

Thank you for including me.

Thank you for making me feel special.

Just remember, I am not saying “no” because I choose to.

I am not saying “no” because I don’t want to see you. 

I am not saying “no” because I don’t want to go out. 

I am saying “no” because MG has dictated to me that I will not be leaving my bed. 

I am saying “no” because I just don’t have the energy to say yes & put on a happy front.

I am saying “no” because I don’t want to draw attention to the fact that I am battling to swallow & talk.

I am saying “no” because I don’t want to ruin the fun.

I am saying “no” because I don’t want to take away attention from the guest of honour.

I am saying “no” because I don’t want to drag my husband from yet another event early.

I am saying “no” because I hate letting people down by saying yes first, then at the last minute realising I can’t make it.