ME/CFS Awareness
28 September 2015. When I look at this photo all I can see is the sheer exhaustion I was feeling at the time, not fully understanding why it was something that seemed to seep to the very core of my being.
I was 2 months post-op at this point, my body having undergone trauma as my femur broke after surgery, which then required further surgery. I was on a number of pain meds, including morphine. I thought it was just taking a long time for my body to recover, adjust to the meds and for my energy levels to come back up.
By Christmas I was falling asleep literally sat upright and mid-conversation with people and something didn’t feel right. I’d had 24 years worth of experience in operations, strong medication and post-op recoveries by this point and this was just … different. The seemingly most simple of tasks like having a shower would exhaust me to the point of sleeping for hours afterwards; I was losing threads of conversations and struggling to find my words; I couldn’t process or retain information like I could previously; I couldn’t cope with too many people all talking in the same room, especially if the tv or radio was also on.
A year of GP appointments and referrals to specialists later and I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. I now know that everything I was experiencing symptom wise has a name: post-exertional malaise, cognitive dysfunction, sensory hypersensitivity. They’re still things I experience, though not quite as often or, in the case of the PEM, to quite the same debilitating degree. It's definitely made more complicated when you have more than one condition going on to separate out the causes. Some of the symptoms of ME/CFS, such as PEM, muscle fatigue, joint and nerve pain, are things I had experienced for years because of my orthopaedic situation. I know the ME/CFS definitely exacerbated the PEM and made different things difficult. As I’ve gotten to understand the condition more and how it affects me I can now intuitively tell the difference between PEM caused by the ME/CFS and flares that include fatigue and other symptoms caused by the orthopaedic side of things.
Mentally and emotionally it’s still difficult to reconcile with some of the changes I’ve experienced. I wish I could read and retain information the way that I used to. That’s probably been the hardest thing to accept. I love learning but now find it quite hard learning new concepts and it’s often completely overwhelming when I’m faced with finding the energy to do all the courses and programmes I’d like to. I try to apply my pacing techniques but will admit the success is variable! I love that I’m now working again but found that full-time was simply too much, for both my pain and fatigue levels. For now I’m part-time. I’d love to see an improvement and change there and hope the day will come but back in 2016 working felt like an extremely distant pipe dream, so I know and appreciate how far I’ve come.
Today is International ME/CFS Awareness Day, and 10-17 May is ME Awareness Week. I count myself extremely lucky that my diagnosis only took just over a year: I know people can battle for recognition of their symptoms for years before a diagnosis. However the help available after diagnosis is still extremely limited and the understanding and knowledge around the condition even more so - both medical and public. I hope this post goes some way to helping people understand that ME/CFS is far, far more than just ‘feeling tired’. I hope it reminds people that just because an illness cannot be seen, it doesn’t mean it isn’t real. I hope it helps grow the understanding and knowledge of the condition even a fraction.