Living with MG
At the support group’s coffee mornings and
in exchanges of e-mails the MG sufferers have
shared their experiences since diagnosis and
their coping methods.
Some of these are listed below in random order:
- Once my legs went on me and I leaned on the car. I was embarrassed as I
was sure people thought I was drunk. A friend saw me and knew that if I rested
for a while I’d be OK. I was.
- In the mornings I could move mountains so I usually do some preparation
for the evening meal at that time. This means that late afternoon when the
energy fails me a little, I can easily cook the dinner and enjoy my meal.
- I had a lot of trouble washing the car. I could drive a tractor but the
repeated up and down movement of cleaning fatigued me quickly. I now tackle
the car a little at a time.
- When I was first diagnosed I was shattered and didn’t know who to
turn to. I was grateful to find someone else who had been diagnosed and was
happily getting on with their life.
- I find the weather affects me. That is the extremes of hot and cold and
particularly humid stormy conditions. Solution. I just take it easy. The weather
- My pharmacist once dispensed the wrong strength of steroids for me - 25mg
instead of 5mg. I ended up in hospital. I now check the tablets not just the
- I buy all my prescribed medications from the same pharmacist. He understands
my condition and the effects the medications may have on me.
- My chemist understands my MG and helps me when I need over the counter
cough mixtures. I avoid anything with quinine.
- I have a list of drug which I know I need to avoid.
- I found that once I relaxed a little and stopped worrying about the MG
and lived within my limits I was able to enjoy my life.
- If you have an ACROD sticker don’t get fussed about those who think
you look alright. You know why you have the sticker.
- I’m on medication which affects my immune system so I try to avoid
crowded areas. My friends and family know not to visit if they have heavy
colds or flu.
- If you are a carer remember you must have a life of your own.
- When I was recently admitted to hospital with kidney stones I intervened
when they were about to administer a painkiller and let them know in no uncertain
terms that I had MG. The doctor was called. Then the correct painkiller selected.
All was well. It made me realise that in any emergency situation if I was
able I should let the Ambo or First Aider know that I have MG.
- When I get ‘worked up’ over something my MG seems worse. It’s
easy to say but hard to do, that is avoid stress. I understand stress does
not cause MG but once you have it, stress will exacerbate the symptoms.
- I told my dentist I had MG. He checked with my Neurologist about the anaesthetics
he was using. His nurse was instructed to be vigilant with the suction to