Humans of ME/CFS
I started feeling exhausted at 14. I couldn't get out of bed, struggled to get to school, and was wiped out all the time. My parents took me to different doctors, I had loads of tests, but no one could find anything wrong.
A year later, after being told I had a mental health problem and wasn't physically ill, I was finally told by a counsellor that I had ME/CFS. My aunt has it as well, so my family had a bit of a clue. I missed loads of school and lost friends because I was the girl with the weird illness.
Over the years I've managed by pacing myself and prioritizing resting. It affected what I could do when I was at university and I've had to change jobs to manage the fatigue.
In the last 9 years my health has got worse. I've now got other conditions as well as ME/CFS. These also cause chronic pain and chronic fatigue, so because all of my conditions have the same symptoms and none are curable they all have the same treatments.
I've got loads of health support now which is so different from when I was a teenager and ME/CFS wasn't known about. I go to a Chronic Fatigue Clinic and a Pain Clinic and get support from my GP, consultants, occupational therapist, sleep therapist, and psychologists. This help has been amazing.
When I was at my worst in 2014, they helped get me from being bed/house bound and unable to walk from the sofa to the bathroom to getting back to work in 2 months! Unfortunately, I couldn't continue to manage to work and after fighting for over a year I still had to leave.
I'm now focusing on my health, trying to pace myself, practicing self-care and spending quality time with my friends and family.
I try to find the joy in the little things and celebrate my achievements even when they're things like cooking a meal, having a coffee with a friend, or playing with my nephew for an hour or so.
I have a cleaner and I've moved to a ground floor flat because I can't manage household chores or stairs. I can't walk very far, so have to be really careful about where I go. I do loads of research before I go somewhere new. I've got amazing friends and family who support and look after me when I'm at my worst and celebrate with me when I'm having a good day.
Chronic Fatigue is so totally different to being tired. Its feeling drained, exhausted, heavy, and utterly useless. The brain fog is my scariest symptom and I hate not being able to think clearly and function for more than a few hours a day. The simplest of adult tasks can take me days or weeks to do and I hate it, but I stay positive and focus on things that make me happy.