I Thought I Was Just Tired

I noticed how tired I was getting in March 2011. I never would sleep on a plane yet during one particular trip, I slept all the journey from Malaga to Manchester. I just thought it was late nights and the sun that had tired me out. Then, around late June, I started becoming aware that my vision was a bit blurry in the afternoons, even would nap in the afternoon and still, I slept through the night.

I thought I was just tired.

I observed that the after noon brought changes to my vision. I was getting worse and someone said my eye was closing yet I couldn’t feel anything. In the evening I noticed if I lay down in bed watching TV, I would see double. Again, I just brushed it off as tiredness. Eventually, it was no longer just my eyes that were being affected. Sometimes, I would walk up stairs like a toddler .

I made an appointment with the opticians to check and see what was happening to my eyes. I work at a computer with a bright light above me. I thought it was computer glare!! But the opticians were concerned. They asked me to head straight to my doctors as they thought I was having a stroke!

Luckily, my doctor was in reception and saw me straight away in which he said he would contact a neurologist but that it could take up to three weeks! I actually had to ask for a sick note until I saw the neurologist!

A week later I was lucky to visit the consultant who looked at me and said, “you’re either having a stroke or you have a tumor. What idiot didn’t admit you into hospital?! ” He then stopped and explained to me that his best mate actually is assigned specialty care to a rare disease and asked me if he could check on my strength. The doctor proceeded to say, “I think you’ve got Myasthenia Gravis”.

As I was being admitted to the hospital, my mind was whirling. “What the hell is this? Heaven knows how to pronounce it!”.

After being tested to check that I had it, (positive from a special medication and observation), I was allowed home after four days. Six weeks later I was back at work but found the stress of my job caused unwelcome changes in my body. Brain fog overwhelmed me all while trying to getting my head around this strange, new illness. I became depressed and alone. I had to give up work as I had no support there.

Now five years down the line I’ve had lots of different medications but slowly but surely I am learning how to cope with MG.

I still find it hard to explain why I can walk slowly one day but have to walk a bit faster the next moment due to feeling my muscles weakening.

To myself and others, it doesn’t seem to make sense. Standing still causes problems. Climbing stairs is hard one moment but easy the next. My face muscles are an obstacle that make up doesn’t cover. But I ignore what I can’t do and live my life the best I can.

After all, how can you explain to a two year old grandson that Nana just can’t do it as he saw you do it the other day?

– Louise Monk

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