Almost two years in bed is a long time. During the first few months I could not read, watch TV, use a computer, have visitors or do much of anything else for that matter. Memory and concentration were shot to pieces. It was difficult to think in sentences. The sound of the TV and radio were too much to bear. I just slept and ate and endured the pain and discomfort. I didn’t even realise what was wrong with me. I had been fooled by the symptom free taper and the six months time lag.
I had my first visitors on Boxing Day 2013, three months after becoming bedridden. It was the strangest feeling. It seemed as though I had only seen them the week before. In January 2014 I decided to call the doctor. A home visit was declined. I managed to struggle to the surgery and was relieved that a physical examination revealed nothing, nor did subsequent blood tests. The GP thought it must be depression. That is what every doctor has thought for 40 years. She came to my home and examined me again just to be sure and referred me to a psychiatrist. It was April before I saw him. He decided it was chronic fatigue syndrome, I have no idea why. I already had a copy of the Ashton manual and knew perfectly well what was wrong with me, I had benzodiazepine withdrawal syndrome.
I was pleased, however, that I had managed to go to the hospital and walk along the corridor to his office and we had agreed on one thing – I was no longer suffering from depression.
I made one more visit to the GP practice, seeing a different doctor of course. She was persuaded that my diagnosis was right or at least that is how it seemed to me. She offered to refer me to a CFS specialist but I declined, enough was enough, no more blind allies for me. I have not seen a doctor since then.
For a year I was practically numb from the waist down. This was followed by months of unbearable nerve pain in all previously numb areas. Along with the nerve pain came terrible head pressure and squeezing sensations in my brain. Sometimes I feared I might have a stroke.
However, these symptoms have gradually diminished and I am now virtually pain free. My cognitive abilities are slowly returning and in the past month I have been able to leave the house and walk outside the apartment complex where I live. Not very far, but such an achievement and such a wonderful feeling of freedom and independence. I can now go to the corner shop and I have recently had my hair cut for the first time in almost two years. I can even manage to go for a coffee with friends on a very good day.
I am optimistic that one day I will make a full recovery or at least very close to it. I just don’t know how much longer it is going to take.