Sometimes it hits me that I’ve been unwell for so long without a Doctor taking any notice at all.
My repeat prescription is up for renewal and it’s made me realise I haven’t seen a GP for M.E. related symptoms in years. Because what’s the point? Not the best, safest, or most sensible viewpoint but people here will understand it.
When I have been seen and been taken seriously, any referrals have led to being discharged when I don’t quite fit the bill.
In 2011 the CFS/ME clinic gave me all the information they could and sent me on my merry way under the illusion that full health would once again be mine. 13 years in, there’s nothing new they could tell me at this point. Most of it is common sense anyway.
Haematology when my blood wasn’t clotting? Discharged with my blood still not clotting…
Endocrinology when my adrenal issues were quite frankly ridiculous? Discharged issues still the same as they’d been when I was referred…
Neurology when I happened to get a new GP and mention my temporary paralysis? Discharged after I didn’t fit the bill for Periodic Paralysis, but still experiencing temporary paralysis…
When I relapsed back into Severe M.E. I was rushed through for an emergency appointment for suspected Diabetes. The tests were negative, but the symptoms remained. Did anyone bother to check? No. I festered in bed in a dark room at home where my husband and Mum were the only medical or care team I had.
Something that has stayed with me though, was the wobble in the voice of one Neurologist during a phone appointment. There was genuine concern that, despite the severity of my symptoms and the devastating impact on every corner of my life, I didn’t have a dedicated Doctor keeping even a casual eye on me.
Many others need frequent medical appointments. Their limited capacity is spent on appointments that may help with symptom management. I’m sure I could be seen more often, and I do go when absolutely desperate. But for the most part it is a complete waste of hope and time and energy in my particular case.
What a sorry state of affairs.
'M.E. myself and I' by Anna Redshaw 