This should give you some idea of what it’s like to ‘function’ with CFS, when I’m ‘at my best’.
I went to York yesterday to look round the English department, and have a chat with a potential supervisor. That part of the trip went well, and even though there was a 2hr 20min train trip there, I still didn’t garble my speech / forget how to talk /collapse in front of the building / pass out in front of said potential supervisor.
The problem started on the way back. I got out of the meeting at twenty past four. I had eaten lunch around one, a chocolate bar around three, and a cup of coffee around five. My train left at 18:41, and was due in at Liverpool at 20:59. For normal people, that’d be fine, a little late, but fine. I told myself that if I felt faint, then there was a food trolley on the way there. But there was a tree on the line in front of Manchester Picadilly. No problem, the announcer said, this will merely be a ten minute delay caused by our not being able to stop in the main Manchester stations. Thirty minutes later and we still had not left Huddersfield. No announcements from the driver, no food trolley, nothing.
With my CFS, talking is usually the first thing to go. I forget words, they scramble in the process of being transmitted from brain to mouth, other people’s speech becomes nonsense, that sort of thing. The second thing to go is ability to walk. I’d already had to walk from the train station to King’s Manor in York, and I wasn’t really having a fantastic day energy wise to begin with – having only had 8 hours sleep. But I managed. I was tired and in pain, but I managed. Now, however, not having eaten properly for hours and hours, I was having difficulty sitting up.
Twenty minutes later, the train was still on the outskirts of Manchester. It had stopped again. There were ten minutes before we were due into Liverpool Lime Street, and – still! – no word from the driver. To be fair to him, he was probably just as clueless as we were, but for the sake of reasons, he’s going to be a synecdoche for the train company / English weather.
One hour after the train was due, we finally crawled in to Liverpool Lime Street. As we had left Manchester, the driver – audibly confused and exhausted – read out the new arrival times listlessly, as if he didn’t quite believe them either.
So now I was at the station, one hour after I was due to get back to Liverpool, and not having eaten for nine hours. All the shops were shut. I could get a taxi home, but that would be £8, and I had a cripple card giving me free travel. Buses late at night, however, aren’t much fun. Especially in a student city. Especially when your brain has got to the point where it can’t remember which busses go from the city centre to your street. Especially when you still have to walk for 10 minutes (10 minutes!) from the station to the bus station, only to see it there, and stagger/jog/topple forward in horrible pain before finally, somehow, getting on the bus.
I made it home. The interview went well – I just have to see if AHRC will fund me.