When we got back from our trip away we found a letter from Wellington Hospital.
He went from not even having a referral put through for and EEG the day before our trip, to having a letter saying that Derek needed to stay up until 1 am on the Thursday night/Friday morning, then get up at 5am Friday morning having had no more than 4 hours sleep, and then stay awake till 1pm when he had to have an EEG. It’s called a Sleep Deprived EEG.
This is hard for normal people, but Derek had had a bad week. Firstly we came home from our trip. We arrived home to find this letter, and while away Derek’s work laptop hard drive died.
There was also a Dr appointment on Monday after work. He was stressed before going to work Monday knowing he had to rebuild his laptop so he could work. Last time he did this, it took him several weeks to get most of the programs working to some level. It also caused a lot of stress when things wouldnt go well.
That was before loosing his adrenal glands. Now he had the added issue of no natural hormones and a brain that got tired easily, while doing this.
After a stressful day at work he headed down stairs at work to meet his driver who was picking him up 30 minutes earlier than normal, to get him to his appointment.
It was very cold, hailing off and on, very windy and horrible out. At 3.40pm I got a call from him. His driver hadn’t arrived. He was cold, and waiting outside. After some phoning around, the driver finally arrived at 4.00. Half an hour after his pickup time. We don’t blame the company, it was the driver, she hadn’t bothered looking at the pickup time.
He missed his appointment but I hadn’t. I went in to tell the Dr what we wanted, got everything, including blood tests and a script, and met Derek at home.
After a stressful day he got cold. When he got home he was pale, weak, and could not talk well. I sat him down, heated 2 wheat packs, got a blanket and a hot drink and started the process of warming him up. He was very fatigued but apparently, according to the Dr’s, we don’t need to stress dose him. And we all know that Dr’s know everything. After all, they are only one seat away from God.
The rest of the week was been spent in slow motion. Tuesday he struggled, got home from work and sat in his chair, not wanting to move from it.
Wednesday he worked from home. This week he worked from his bed, he didn’t have the energy to work sitting in his office.
So, on to Thursday night. He came in from work, sat down and said he just wanted to go to bed. He was exhausted and he looked it.
Going to bed wasn’t an option. I had arranged for a family tabletop games night, to help him stay awake.
I cooked dinner, we all sat around the table, and after eating, played Cards Against Humanity. This is a fun, politically incorrect game. There was a lot of laughing as we played. At some points there was too much laughing. Our youngest son has Cataplexy, so every time we laughed too much, he would become cataplectic. We have started learning to work around this problem, just as we have with Derek.
We finished the game just after 11pm and I went to bed. I only dosed until 12.45am when I went to the lounge where my eldest two were keeping Derek company. He was allowed to go to sleep at 1 am, so I told him to sort himself out and come to bed.
My eldest son went home, and my daughter went to bed.
Derek and I went to bed and almost immediately fell asleep. 5am came all too quickly as the alarm went off. I woke Derek and made us a cup of tea. We sat and talked until the 6am alarm when I got up for a shower. Derek decided to get a shower as well, then got dressed and started working in the office. He decided that even very slow working was better than sitting down doing nothing as that would cause him to sleep.
I went to work having arranged for Colin to bring Derek to the hospital around 12.00 for lunch before his EEG.
He didn’t want to take extra HC because we needed to see what happened when “stressed” so I had my daughter (who had the day off work) look after him, making sure he didn’t go to sleep, or worse, go into crisis from the stress of having to stay awake.
Colin, drove Derek to hospital. We all got there at the same time, sat down for lunch, then Colin left to do other things, and Derek and I went for his appointment.
We sat in a quiet area for about 10 minutes, then were taken into a room. Derek was put on a bed, and had the electrodes attached.
The beginning of the Electrodes being put on.
The testing began. Eyes open, eyes closed, eyes open, eyes closed. Flashing lights, eyes open, eyes closed. This continued for about 20 minutes. Now lay there and close your eyes for 10 minutes. Ah, sleep came very quickly. He slept for just over 15 minutes. The technician then gently woke him, removed the electrodes and it was over.
I wanted to drive Derek home for a sleep, but we had another meeting. We were getting the results of the neuropsychological evaluation he had before we went on holiday.
The results of that report in another post.