Today is International ME Awareness Day and this is Julie’s story:
Two months ago I experienced the greatest joy and despair all rolled into one when my first grandchild was born. For so long I had longed for a grandchild and had imagined myself baby sitting at every opportunity. Sadly that will not be the case, because ME/CFS has destroyed that possibility along with nearly every aspect of the life I once had.
Four years ago I was happy and independent, working full time in a job I loved. I enjoyed daily long countryside walks with my dog, now I only manage a ten minute walk twice a day. Sometimes I could manage further but will suffer for days after.
Three years ago after several months of feeling tired, I began to experience regular dizzy spells which affected my balance. Six months later I sat at work with a headache from hell, trying to make sense of the figures and words on the computer screen but only able to see a blurry muddle. This was the point that my GP first suggested that I had ME/CFS and advised me to rest more. Despite cutting my working hours my health continued to decline until two years later I had to stop work completely.
I used to enjoy a day out shopping with my daughter but so far this year we’ve only managed a necessary visit to the bank, and then she had to drive me to Ely and push me in a wheelchair.
I used to spend time reading, card making and making memory books. Now, on days when my vision is not so blurred that I can’t see straight, I can still only do anything requiring concentration for ten minutes before suffering increased symptoms.
I used to love spending time with family and friends, now if I chat for too long my brain will stop processing what I hear and I am unable to understand what is being said.
So, what are the symptoms? There are too many to mention, but for me the most debilitating ones are intense head, ear and eye pain, nausea and dizziness causing loss of balance and weak, aching muscles which mean I constantly drop things (hence no babysitting) and make my legs give way under me.
The worst days see me laying down in a dark room with no music or TV. If I sit up the nausea and dizziness increase and if I try to get up and move I fall.
Thankfully, after three years I am now getting proper help and advice and with careful management, consisting of short periods of activity followed by long rest periods, I am having much fewer bad days.
By meeting others in the support group who have been where I am now, i can see a light at the end of the tunnel but I am realistic enough to know it could take years to reach it.
When first asked I was unsure whether to tell my story because I don’t like to bore people with my problems, preferring to show a happy face. But there is very limited understanding about this condition and i realised that the only way to change that is by talking about it.