My Diagnosis of M.E/C.F.S
I have been living with M.E/C.F.S now for 9-10 years. It all started with a bout of Swine Flu in 2009 which left me bed bound for about 4 or 5 days. I remember feeling paralysed after I came home from being out to the park, I wasn’t able to move or speak so my mum instantly called an ambulance. The ambulance came straight away and within a few minutes they diagnosed me with Swine Flu and I was recommended isolation from the rest of my family and lots of bed rest. I recovered, or so I thought I had, after around a week or so but I seemed to be a lot more fatigued than usual. The fatigue went on for years and so did countless doctors appointments who put the extreme tiredness and my really bad immune system down to what they thought was depression or me simply “being a teenager”. I knew and so did my mum that there was so much more to what I was going through but the doctors did not listen to me at all. It wasn’t until I was 19 that I officially got diagnosed with M.E/C.F.S (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome).
I went to the doctors for the same problem over and over again and I just seemed to go round the full doctor’s surgery getting different opinions until I took my mum in with me to the head doctor in the surgery and she suggested to them that it could be M.E. The doctor that was examining me said “Yes I have thought that for years now but best to just not let yourself get unfit, you should try going for a walk”. My mum and I were speechless but a week or so later went back and FINALLY got somewhere. A doctor wrote a referral for me to be seen by a Neurologist at the local hospital stating that they think I may have M.E/C.F.S or Fibromyalgia.
I was invited to attend an appointment around 3 months after the referral and I went along and it wasn’t what I expected at all. I expected scans on my brain, monitors that you would see in Sci-Fi movies when aliens abduct people; but no, none of that at all. I was asked to walk in straight lines, point my finger to my nose, arms in the sky, it seemed odd as I was in a brain doctor’s office but nonetheless he came to the conclusion that I did in fact have M.E/C.F.S.
I find that since getting diagnosed it has helped in terms of what professional input I get towards recovery but it made no difference to how I felt as I knew after much research that I had M.E/C.F.S way before I was officially diagnosed. I am currently under the care of an occupational therapist in my local home visiting team REACH NHS Forth Valley which the Neurologist kindly referred me too. I have underwent Graded Exercise Therapy (which I shall be writing a full blog post on, if you know about it you’ll know it won’t end very positively) but now focusing on Pacing and listening to my body.
M.E/C.F.S for me means no spontaneous trips or days out, it means no late nights without horrendous payback, no drinking alcohol at all now. It’s tough and does feel out of control at most times but it makes me appreciate my good days and reminds me that I really should listen to what my body needs or doesn’t need rather than listening to what other people suggest.