CFS / ME – Fighting for a Diagnosis

I was diagnosed with Chronic Fatigue Syndrome back in 2002. I’d come home from the gym and was so tired that I was physically unable to climb the staircase to get up to the first floor of the house. I dumped my gym bag in the hall and went to the den to sit down for 20 minutes or so to get some strength back. When I finally got to the first floor, I realised that had depleted whatever strength I had left and was physically unable to climb up to the second floor and to my bedroom so I flopped on the couch in the living room and rested. When my sister came home, she asked if I was OK and told me that my face had the appearance of a wax doll – not quite real. That’s sort of how I felt. It was like the precursor to a really bad bout of flu and that’s what I thought was going on so I eventually got up to bed and slept. The next day I called in sick and went back to bed and slept. All day. This was a Thursday.

This went on for the whole weekend and, by Monday, I realised that I wasn’t feeling any better, neither had the flu developed.  With no clear idea of what was going on I booked an appointment with my GP. That really was where the fight began. My GP was extremely dismissive and obviously thought I was a timewasting simpleton. I was told that the fact that I was shaking with exhaustion from the 500 yard walk over to the surgery was because I was overweight, the fact that I was breathless and exhausted after climbing one flight of stairs was because I was a smoker – he didn’t ask me about my general health or how I’d been able to do these things before the onset of my fatigue.

I stood (or sat) relatively firm and got him to agree to do some blood tests, sign me off work for another week and I made another appointment to review the blood test results.

I went back for the results, which showed nothing abnormal and I was, once again, dismissed. I went home and cried my eyes out – I knew there was something wrong but had no idea what it was and had no idea what to do if my own doctor was treating me like I was imagining my symptoms.

Luckily, I had private healthcare through my job and I called the company’s helpline. They suggested that I make another appointment with a different doctor and ask to be referred to a general medical specialist. I had no idea what this was at that point but I was willing to try anything. I did as suggested and made an appointment with the senior doctor at the practice and even thought she was almost as snotty as the stupid locum that I’d seen, she agreed to refer me on once she found out I had private medical insurance that would cover it.  When I finally got the appointment with the specialist, I was finally diagnosed with acute onset Chronic Fatigue Syndrome and the slow recovery process began.

I spent most of the first five weeks sleeping up to 20 hours per day. I could make it across the landing to the bathroom whenever needed but a trip downstairs to the kitchen required a bit of planning and a lot of effort. Slowly I got stronger. I was very lucky in a sense because I was still able to function, albeit slowly and carefully. Once I was diagnosed I found there were other people who were almost completely bedridden with the illness – a colleague of mine had a daughter who had been diagnosed and had to be carried from bed into the bathroom whenever she needed to go. I shuddered at the thought.

I managed to insist on getting referred to a fatigue specialist in London who was brilliant, although the trek up there was exhausting.  He diagnosed Hyperventilation Syndrome (which is extremely common, I found out) so arranged for my breathing to be retrained.  Unfortunately that had little effect.  He tried me with various supplements, the “worst” for me was one which seemed to complete disrupt my sleep – I was able to get to sleep easily enough but staying asleep was a whole different ballgame: I’d wake up approximately every 90 minutes to go to the loo and even when I was asleep it only felt like I was dozing.  Consequently, I was utterly washed out in the mornings – it took me nearly four weeks to figure out it was the new supplement causing the issue.  I came off them and my sleep quality improved slightly.

Gradually I started to be capable of doing a little more and went back to work part time (after consultation with Occupational Health) and did two half days per week.  I really don’t know whether I was any particular use while I was there – most of that time period is foggy at best for me.  I managed to get back to full time work within 18 months which I think is fairly good going, considering I had next to no help from the medical establishment.

Towards the end of my recovery I did one of the most stressful things you can do – moved house.  I made sure I gave myself plenty of time for the packing and started on it nearly three months before the purchase was complete so that I didn’t have to overtax myself.  My recovery seemed to speed up once I had moved into my new house, some 70 miles away from London and in the beautiful county that is Wiltshire where the air is much cleaner and life is much less stressful on a day to day basis.

Whether the move was coincidental or not, I’ve had no relapse and am extremely grateful for that.  In a way, I’m almost grateful for the struggle for diagnosis: it gave me strength and taught me a lot about my own self belief, self confidence and sheer bloody-mindedness and made me realise that GPs are not the all-knowing, helpful beings I’d previously thought.

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