How I earned my Zebra stripes (part 2)… the emotional roller-coaster of life.

An emotional roller-coaster, that’s the best way to describe being first diagnosed with a rare lifelong illness. The slow realisation that ‘this is the rest of your life’ can really hit you like a ten ton truck.

I was in my early twenties, newly married, and just starting out in my career. I had my whole life in front of me, had just got back from my honeymoon, and recently moved into my first house. Life was awesome.

Then the news…

My sister was the first to be diagnosed, and really I went into denial, and thought this was not something that could happen to me. I didn’t want to know about it.
Then there it was in black and white; a letter sent to me which was the results of the genetic blood tests… I had it too.
At first I felt angry. In fact, more than just angry, I was really pissed off!

I think in my heart of hearts I knew my life was going to be different and, yes, I had lived with the previous diagnosis of ME for a few years, so it shouldn’t have been such a massive surprise to me. But oh, how wrong I was.

I knew my life was going to be different than my peers,. But somehow taking pills, day after day, for the rest of my life was not something that came easy to me.
After the anger came the grief and the whole ‘Why me?!’ approach. I felt like I was missing, and grieving for, the life I once knew. Everything would change.

Then the denial slump came, and it came in spades, on and off (and sometimes it still does, although I never act on it now).
My irrational thoughts went a bit like this:
“I really don’t need to take my pills they don’t seem to make any difference to how I feel – I still feel crap.”

“If I don’t take my pills I won’t be that ill person any more” (completely weird and irrational thinking but still that’s how I felt).
The nagging of others only made made me want to do the opposite of what I should do, which was actually taking my meds.
I was rebelling against the diagnosis and working too hard, going out too often, drinking, and clubbing, overdoing it, trying to be normal and generally doing what every 23 year old was doing. I was on burnout and it would eventually bite me.

I used to look at my pills all lined up and just want to chuck in the towel, throw a massive wobbly, and bin them in desperation, knowing full well that as soon I had taken them the burning pain would start in my stomach for an hour or more.
I would not go and get blood tests done – what was the point? I knew they would be low anyway, and then there it would be for all to see – that I am ill. Stupid, I know!
It gets easier with time and it really wasn’t until the birth of my son that I realised I had really had got to grow up and deal with my health fast. I now had a small person who completely needed his mummy around for the long term. It was the kick up the backside that I needed.

I still have feelings of denial and anger.
This sod of a syndrome is cruel at times; it brings you up by the short and curlies, if you let it, and there is nothing like the agonising burning pain of a potassium intravenous drip to make you remember to look after yourself.

I’m not saying I don’t have down days. I do. But they are less and less. My support network keeps me from going under. I have lost friends in the past, solely due to my having GS (it’s amazing how, as soon as they find out you have a
chronic condition and can’t be social, they eventually they stop inviting you or calling you up). The good ones stick around though and, for that, I am truly grateful.

And so the roller-coaster ride continues…

Posted 23rd April 2015