I wish I could say everything is wonderful on the recovery front. It isn’t. We are not back where we were. We are in a holding pattern with very slight increments of improvement.
That being said, I do have a lot of positives to report. The most important is my husband has learned to pace himself with the stroke fatigue. We have accepted it as a real thing and we have adjusted to account for it. For example, Tuesday evening is my husband’s pool night with some buddies. In preparation for the evening yesterday he rested a lot during the afternoon, deliberately taking a long nap and spending a lot of time lying in bed with his laptop doing things that require little or no mental energy. The result was he was able to enjoy the evening with the fatigue only starting near the end of the last game. Now I realize that we are very lucky that he can even walk over to the senior’s centre by himself and play pool. Many people after a stroke simply could not. So I am grateful for that. However, if my husband has to miss his pool game because of post stroke fatigue or miss pool because he can not walk over there, he is still missing his pool game due to the stroke. So this adjustment is a major and extremely important one though it might seem very small.
It is the same thing with his work. He is retired but he loves continuing to do science to and mentor people. We recently finished a paper linking code biology and our differentiation waves. He did all the final editing of adding the references and numbering the figures and the process of submitting it. He did it at a much slower pace than he would have before but it did get finished. He did not stay up all night and push hard to get it in on time at the last minute. That would have been the old pattern. This time he deliberately got it done well ahead of the deadline so there would be no last minute crush. Other things were neglected in the meantime but it got done.
I am happy to report he is taking this recovery and rehab thing very seriously. He has been using his treadmill desk faithfully and dropped two inches from his waistline. That is the only risk factor he has for stroke that he has any control over. He doesn’t drink or smoke. He can’t control genetics or his age. He can control his weight and fitness. Plus he has started a ping pong club with his friend Frank Chen for Thursday evenings at the community centre. Ping pong is very good for working on hand eye coordination and forcing the body to use the slightly weaker left side. He was exhausted after the first session but it was a good kind of exhaustion. We even had a good turnout with seven people showing up.
We have both suffered a blow to our sense of invulnerability and immortality. He could have died. The feeling of shock is wearing off but we are still both looking over our shoulders watching for the grim reaper. We went out to view some property with a friend and his family that they are considering purchasing. We were having such a nice time on this rural property that we did not keep track of time and we did not hydrate. We abruptly had to leave because my husband had a dizzy spell. The drive home took forever and I was panicking while pretending I was not. I knew rationally that this was likely a side effect of the meds. We had been warned about that. It was most likely not another stroke. We got him home. The blood pressure monitor confirmed he had dropped too low, and we got fluids into him and he had a chance to rest and recover. I had my heart in my throat until he woke up feeling fine.
Afterward, everyone said how wonderfully calm I am in an emergency. I am faking it. Inside I was coming apart at the seams and I’m sure if I had used his machine to take my own blood pressure, I would have blown the thing up. Once it was all over, I had to go and vent to my good friend who is marvellous about listening and nodding sympathetically and just being supportive. Another lesson learned. No long hikes without hydration before, during and after. Hopefully, at the three months post stroke check up we will be told the artery is healed and we can begin cutting back on some of the more powerful meds or reduce the dosage.
We got a bunch of money back from our insurance plan for the drugs he’s on. To our disappointment we only got about half back. It turns out that in Manitoba pharmacists can charge all kinds of extra things like dispensing and counselling fees and there is no regulation on these. It is a free market. We found out our local pharmacy is among those who double the cost of drugs with those additional fees. Who knew? Next month, Manitoba will finally join the rest of Canada in regulating those extra charges. Meanwhile, we are looking for a different pharmacy. We will now be shopping around for the lowest additional fees instead of going where it is convenient and the pharmacist tells a good joke or two. Another lesson learned.
Now those slight increments I mentioned. Before the stroke my husband would typically join me at bedtime around 11:00 am and then get up about 1:00 am and work until about 5:00 am and then wake up with me about 7:00 am. When we first got home from the hospital, my husband needed a good sleep with no working at night and about eight naps, some of them two to three hours during the day. In other words, he was sleeping pretty much all the time. He is now down to about four naps a day and most are only about forty five minutes though there is usually one that is over an hour. He is working at night for thirty minutes to one hour. Part of the improvement is simply he needs less sleeping which is real recovery and part of it he is getting the knack of pacing himself and resting before he needs to sleep. That is our small incremental improvement.
In the meantime, our world remains much smaller. A trip to town for groceries we can’t get from Frank’s little store in town and a short visit, left him worn out the next day and unable to accomplish much even though he slept during the one hour drive there and back. We have a regular dental check up coming up in a couple of weeks. That is also a one hour drive. We have our son, his wife and three grandsons coming for an overnight visit. I am a bit concerned about managing. Trips into Winnipeg are basically out of the question. Our world is going to be centred as much as possible around Alonsa for a while yet. Given all the support and friendship we have been enjoying, I can think of no better place for us to be stuck.