Humans of ME/CFS
It was during my mid-20s that I became unwell. ME/CFS was my initial diagnosis—much to my surprise. I didn’t believe in the diagnosis so ignored it and carried on with life. My health deteriorated over time, though I continued with all my usual tasks. At age 28, the glands swelled up throughout my body, and the doctor thought I might have glandular fever. I was used to ignoring symptoms at this point, and only went to see the doctor because my right thigh had swelled up so much it couldn’t fit in my pants any longer. Within weeks, I was flattened and serious unwell.
Firstly, I was diagnosed with overactive thyroid, but my levels returned to normal unusually fast (I’ve since been told by the head endocrinologist that he thinks I’ve experienced two instances of thyroiditis—not Graves’ disease as was my first diagnosis). Because I was still seriously unwell despite normalised thyroid levels, further testing was carried out, and I was diagnosed with dysautonomia along with the CFS/ME.
It’s been nearly six years and I am classified as permanently disabled now. My immune function has deteriorated, too. I miss the weekend adventures with my husband and daughter. Taking walks. Being able to go out by myself—and being able to go out when I choose or need to. Soon I will have been disabled for half of my daughter’s life. There were so many adventures for us to share that will never happen. That’s the thing about this illness. We get stuck, almost in stasis…but time marches relentlessly on. Children grow up; children we might have dreamed of are never born. Marriages and partnerships are changed forever. Sometimes, we become people we don’t recognise. Who is this disabled person? I still feel propelled, internally. I am still driven to live my life, to get out in the world.
Only in more recent times, after a fortuitous stabilisation of my symptoms (no hospitalisations for about two years—whoop whoop!) have I been able to see the value in my life once more. I’ve started reading again (difficult, but practice is paying off). I found a course to study at home, and the teacher even visits me here. Because I can no longer get up to play the piano with ease, I did what I never thought I’d do; I’m learning a string instrument–the ukulele. I’ve heard it said that a person can never be sad whilst playing the ukulele. I’ve managed it once—but mostly, I’d say this assertion is true.
There is a lot of living, learning and loving left for me to do. I hope that if I ever become extremely unwell again, I’ll keep believing that. But I just don’t know. At my worst, the GP said mine is one of the cruelest illnesses she’s ever seen. Life excites me, though. I enjoy my responsibilities and working toward goals. Please help us escape the confines of this illness.
