MYASTHENIA CAME INTO our lives in 2004. I say ‘our lives’ because – with a condition like this – the whole family is affected.
Myasthenia is an auto-immune disease in which the nerve signals are attacked and damaged. As a result, there is a breakdown between nerves and muscles. This often results in a loss of effectiveness in the legs, arms and eyes. Symptoms vary from drooping eyes to slurred speech and muscle collapse.
In my case, Myasthenia came out of nowhere. One minute I was super mum. A few months later I was lying in intensive care unable to do anything for myself.
For someone who does not have Myasthenia, can you imagine waking up one morning and finding that the only part of you that is working is your brain?
You feel like your body has died but your mind is the only part of you that still works. If you are lucky to be able to get out of bed, you are probably breathless. Imagine trying to get dressed; you cannot lift your hand up to your mouth to brush your teeth; your hands won’t go up to your face to wash it; getting into the shower is almost impossible. This may give you an insight to ‘every minute’ struggles a person with Myasthenia has. A day in the life of someone with severe Myasthenia is too long to comprehend.
Something was wrong
In March 2004 I had my second daughter, Rachel. I was on cloud nine after waiting 17 years to have her. When my baby was just four months old I started feeling tired but initially I put this down to being an older mum. A few weeks later, I noticed I had double vision, but was told by the medical profession on two occasions that there was nothing wrong with my eyes.
While the double-vision continued erratically, I had no other signs of anything being wrong until the day I went out to the clothes line. I could not lift my arms up to hang the clothes on the line. Obviously, I went into a state of shock, I thought I was having a stroke or a heart attack.
My condition got progressively worse. Soon I couldn’t lift the spoon to feed my baby. Everyday things were now a problem until I eventually collapsed at home.
I thought I would die
I was immediately hospitalised. My condition deteriorated day by day. By Christmas I was in intensive care. This was one of my lowest points: I could no longer breathe on my own. The reality of the seriousness of the condition was now definitely kicking in. I was sure I wouldn’t be alive to have our first Christmas with my baby.
I stayed in ICU through Christmas until January and when all other medication and treatments failed, I had my thymus gland removed.
At this stage I had not seen my baby for four weeks. I was at an all-time low.
Slowly, however, I started to improve and after learning to walk, eat and breathe by myself again I was moved to a hospital ward. The happiest day for me was when my husband brought in Rachel, who was now 11 months. At this stage I had not seen her for nearly three months. She recognised me, but was very cautious. While I wanted to grab her and run away, I knew I had to tread lightly.
Recovery has been slow but steady
I was allowed home, but progress was very slow. I found it difficult to sit looking at what had to be done and not being able to do it.
Finally, my Myasthenia was manageable as long as I behaved myself. Having laid low for so long I wanted to return to my normal self, but as soon as you overdo things, the Myasthenia symptoms come flying back and you have to learn to pace yourself. Rest is very important and you do have to work out a new routine.
Since June 2006, my Myasthenia is totally under control, as long as I don’t push myself too hard. I have returned to work on a part-time basis, I’m back driving and doing all the things a mother has to do!
Christina spoke at the launch of Myaware, a new-look and expanded service to support people with all forms of the severe muscle weakening disease Myasthenia. Myaware builds on the work of the Myasthenia Gravis Association and is seeking to reach out to the 300+ people who currently have a diagnosis – or symptoms of the disease – but don’t access any support services.
For further information on Myaware, see: www.myaware.ie