Got up at 07:00 on the day of my appointment. Went back to bed at 09:30, got up again at 10:15, so I was as rested as I could be. Walked to the clinic, arrived 25 minutes early, introduced myself at reception and handed in my GP referral, health insurance card, and neatly ordered copies of results of all appointments I’d already had with specialists to exclude everything else, including 2 sets of blood tests, 2 visits to the sleep specialist, cardiologist, gastroscopy, endoscopy, radiologist (3x MRT of head because they “found something”), endocrinologist, urologist, neurologist and psychiatrist (the woman who followed me down the corridor, hit me in the knees with a hammer, and then expected me to prove it was me who wasn’t crazy …). I had also added a summary of the progress of my symptoms over the last 2.5 years, reduced to one page of A4.
The receptionists were friendly and welcoming, and printed out a sheet full of small stickers with my name, address, date of birth etc on. There were a lot of stickers, I hoped each one wasn't for another vial of blood.
I was handed a clipboard with 12 sheets of paper to fill in, containing various descriptions of symptoms to tick and cross, fatigue questionnaires, the Bell CFS Ability Questionnaire, the CCC etc etc. All in German. I filled them in with my wife sitting next to me. At one point I’m afraid I had another tourette’s outburst, when I turned the page to find myself looking at the “Chalder Fatigue Scale”. “Do you know who that woman is?” I demanded of my perplexed wife. She didn’t. I decided that screwing up the page, throwing it at reception and storming out would probably be a futile gesture and not in my best interests after having waited 9 months for this appointment, so I filled it in with an air of distasteful contempt.
In one way I found some of the questions hard to answer, for example was I supposed to describe my symptoms as they were now, or as they had been before I started pacing properly and would be tomorrow if I tried living normally? For example at the moment I’m sleeping well, 6 hours or more, and wake up feeling ok. But I have had periods of months where I couldn’t get to sleep, then woke up throughout the night with an unsettled stomach, and dragged myself out of bed in the morning feeling exhausted with a headache. I’m sure I could recreate this situation within the next 24 hours if I wanted just by going for a short jog, and that it would last for weeks.
The Bell scale contains a few sentences in each category, some of which apply to me and some which don’t. I decided that I’m at best 50 points and at worst 30 points, so circled 40 points. On the whole I tried to choose a middle path, and tried to avoid minimising my symptoms just because I’ve been doing well for the last couple of weeks.
I had nearly finished the last form when all of a sudden the Dr appeared …
The receptionists were friendly and welcoming, and printed out a sheet full of small stickers with my name, address, date of birth etc on. There were a lot of stickers, I hoped each one wasn't for another vial of blood.
I was handed a clipboard with 12 sheets of paper to fill in, containing various descriptions of symptoms to tick and cross, fatigue questionnaires, the Bell CFS Ability Questionnaire, the CCC etc etc. All in German. I filled them in with my wife sitting next to me. At one point I’m afraid I had another tourette’s outburst, when I turned the page to find myself looking at the “Chalder Fatigue Scale”. “Do you know who that woman is?” I demanded of my perplexed wife. She didn’t. I decided that screwing up the page, throwing it at reception and storming out would probably be a futile gesture and not in my best interests after having waited 9 months for this appointment, so I filled it in with an air of distasteful contempt.
In one way I found some of the questions hard to answer, for example was I supposed to describe my symptoms as they were now, or as they had been before I started pacing properly and would be tomorrow if I tried living normally? For example at the moment I’m sleeping well, 6 hours or more, and wake up feeling ok. But I have had periods of months where I couldn’t get to sleep, then woke up throughout the night with an unsettled stomach, and dragged myself out of bed in the morning feeling exhausted with a headache. I’m sure I could recreate this situation within the next 24 hours if I wanted just by going for a short jog, and that it would last for weeks.
The Bell scale contains a few sentences in each category, some of which apply to me and some which don’t. I decided that I’m at best 50 points and at worst 30 points, so circled 40 points. On the whole I tried to choose a middle path, and tried to avoid minimising my symptoms just because I’ve been doing well for the last couple of weeks.
I had nearly finished the last form when all of a sudden the Dr appeared …
