ON 30th May the “Experiment in Independence” ended. At least that’s what we thought. This weekend is the first weekend since then that Derek has actually felt like he can “do things”.
Wednesday Derek had a meeting with ACC to discuss where they are at to date regarding the reimbursements, wage compensation etc for while he was off work for 15 weeks last year. I picked him up from work, and drove him to the meeting. He had just taken his 12 o’clock dose of HC and then met his CM. By 1. 40 he was starting to rapidly go down hill. He had to take extra HC. We put it down to the stress of the meeting.
Thursday he woke feeling OK. Not as tired has he was the previous week. The stress of the meeting the previous day had not had a major effect on him because he took the extra HC. This is how things SHOULD be.
Thursday we went out for 2 hours (in horrible weather) to watch our teenagers perform at a Music Presentation at school. Friday night Derek stayed up until 9.00 pm (normally bed for him is 7.30).
Saturday Morning he sat in the car while our Learner Driver daughter drove to her job, and he drove back home which is 3KM of driving. Not far, but the furthest he has driven in over a month. We went to the Hardware Store (me driving), took my son to band practice (me driving). He actually felt like coming rather than resting.
Saturday morning, where Derek would normally be tired, and want to rest, he felt like he could go out with me. I noticed that when 12 o’clock came round, he was surprised when his alarm went off to get his HC. In the last 4 weeks he was hanging out for 12 o’clock to come. 4pm, again he was happy to wait.
It wasn’t a lot, but it was a great improvement.
The biggest difference this week is that he has been getting a Taxi to work and home again all week. ACC came to the party, and it has definitely made a difference.
It was suggested at one point by someone, that “If you are too sick to get to work, perhaps you shouldn’t work.” This is not an option as it is the mental stimulation of working that keeps him alive. IF he didn’t have that, then I am sure he would not get well.
We have the Taxi for 3 week, then it will be re-assessed and they will see what they can do. It’s a start. It has given him a chance to recover from everything.
The weather was terrible this week (a major storm by Friday) but he survived it well and has now reduced his meds back to 10/10/5. Once he has leveled out some more, he may try going back to the 10/7.5/5 that is recommended.
Sunday morning came and he didn’t feel the need to roll over as soon as he woke to take his HC so he left it for 10 minutes. He then got a surprise when 12 came again. He didn’t immediately stop to take his HC, but finished what he was doing. 15 minutes later he was stopped. Again, he didn’t feel like he was running low.
Fingers crossed he will stay at this level for a while. We can only put the recovery down to having a lift to and from work in the cold and wet. It means I have the chance to relax a bit as well.
Getting a basic level of Fitness back is the next challenge.