This illness is so unpredictable. My usual mantra was “Carry on regardless”. I physically can’t do that anymore. My body won’t allow it. Because of this I am always, cancelling, rescheduling even forgetting about plans that I have made with people. Some people understand this and others just or won’t get it. I find it extremely difficult to go from being someone dependable to becoming “the girl the always says she will but never delivers”
The hardest thing for me to have as a chronically ill person isn’t just a “normal” day-to-day life or a “normal” job it’s having and keeping friendships, having a social life and being able to be fully committed to my Roller Derby training. I had a shaky start and then a really good run of being well enough to attend both sessions a week then slowly bit by bit my health deteriorated and I was down to 1 session a week this past week I didn’t manage any training at all. It’s just another way of this illness punching me in the guts. I am stubborn and nobody tells me what I can and can’t do but this illness is a full-time job 24/7, 12 months, 365 days a year – NO DAYS OFF – NOT EVEN ANY PUBLIC HOLIDAYS. Sometimes I wish I was a scientist so I could discover a cure. This illness has become me, it’s taken my life, my job, my freedom, my memory, my best friend, relationships with friends, my ability to be the mum I want to be, my ability to be the friend and human being I want to be, it has stripped me of all my ambitions. This illness is a parasite that I will never ever be free from. It is like being in an invisible prison, with no inmates and no visitors. It’s like waking up and being tortured every day of your entire life. Who would want that – I don’t. It’s not my ambition to be a professional ill person. I have never ever wanted to be more “normal” in my entire life,
Orkney Fibromyalgia Sufferer 