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Day 97 – Just As I Say

Just as I write and say how clear my head has been the spins came to see how I was doing. No sooner had I sent me last message did I have the spins and a headache that lasted for about three days. They weren’t too bad but I did find it quite ironic that I had just explained to you all how clear my head had been all week, which it was. So the spins and headache lasted for three days, which was a drag as I was forced to slow down from a week that saw me maintain a fairly decent pace. But I did wake up after my days of rest feeling a little better and proceeded to have perhaps the most active day since my Transplant and am feeling fine today which is a really good sign as usually I’m quite tired after a full day of activity. The head is clear and the body isn’t too worse for wear.

I have mentioned a few times, and certainly explained to many people the fact that my energy and head sensations come and go with no relation to anything this is a good example of just that happening. I wrote in my journal a while ago during one of my Wonderland peaks that my days run together and seem like one continuous time period, yet other times I will experience two days back to back and they will have no more in common than the fact that they meet for one second at midnight. Unpredictable is the word, and the unfortunate part is that it doesn’t allow for any type of extended planning, this is a day-to-day situation like I have never experienced.

I am still experiencing a collection of other pain and discomfort but it has been somewhat predictable and developed into a pattern thus my days are fairly consistent with regards to how I feel. Usually if I am feeling well and have some energy it will be consistent, and as long as I’m smart with what I have I can make it last for a substantial amount of time, that’s “my” substantial of course not “your” substantial. Most days I still have a nap in the afternoon but that is as much because it allows me to feel better for the nighttime hours as it is out of necessity. This increased consistency is nice and something I am enjoying of course due to my physical condition I haven’t been able to do a whole lot more than I was doing before. My legs are getting stronger but the stairs in my house are still a challenge so can’t get around my house as I would like, I am not quite a prisoner in my own home but there have been times when I feel that way depending on my energy. The other significant absence is my ability to drive, which is a self-imposed restriction. I have decided that my Wonderland head is too wacky to have me behind the wheel of a car, this is something that didn’t take much thought but something I have given a lot of thought. Personally I feel anyone who is taking Prednisone, or any other perception altering drug, and is experiencing sensations anywhere near what I have been shouldn’t be driving. Walking is enough of a challenge many days, and the fact remains that many people act as if they are normal as there are no formal laws or regulations relating to a persons conduct while taking these types of drugs, at least not to my knowledge. Anyway it was my decision to make and I have made it, although there have been many times when I wish I could hop in my car and experience yet another element of my lost independence. All in time, but as with many things the length of time takes it toll on your mental state and patience becomes the test.

So while it is great to be home, I haven’t quite sunk into the old environment that I left over 3 months ago. My perception bar has been adjusted, fairly automatically but still with significant effort, and I am content with my situation but still really looking forward to attaining the levels of independence and energy I knew just prior to leaving for Toronto. I don’t have a feel for when I’ll be in a position to start driving again as I figure I have at least a month of Prednisone left should I continue to reduce my dose at the present rate (5 mg/ week, I am presently taking 30mg/day). That said, I may stop experiencing side-effects prior to stopping the drug or I may be taken off the drug earlier than expected but for know the “bar” is set at a month or so and I will leave it there until I know otherwise.

I may be able to get some answers at my next clinic visit, you will hear from me sometime after my appointment.

Stay in touch,

Geoff
#4

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