Wednesday, 31 August 2016

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.

1 comment:

  1. I am so blessed. Robs you have been incredible. A wonderful mother & the bestest sister-in-law. You are my inspiration. Never complaining but always upbeat! Hope now I can help in a very small way - share your load. I love, respect & admire you. Suzie