August 2021 – Page 2

Treatment #5

Holy shit. I don’t know why exactly but today has been, very likely, the most difficult day I have had in this whole process so far. The fatigue, of course, is hitting me like a ton of bricks and I’m having these ridiculous bladder spasms that are new and are bringing an extra level of excitement to the whole thing.

If you have never experienced a bladder spasm, they are pretty remarkable. I suppose it would be analogous to bad menstrual cramps, which doesn’t necessarily help to paint a picture for those audience members who, like myself, have never had a uterus. Take my word, though, that they are very unpleasant. The bladder spasms that is. My experience with menstrual cramps remains second-hand.

The urology clinic staff suggested I try Pyridium (phenazopyridine) for the badder spasms and I’m optimistic about potential relief from that. However, while sympathetic, they still don’t really have a whole lot to offer that would mitigate the fatigue. In fact they recommended that I cut back on my caffeine intake because it is an irritant and could be making the bladder spasms worse. So there.

The good news is that my manager at work could not have been any more supportive through this whole thing. She is looking in to some light duty options for me for the next couple of weeks, which I’m certain will be necessary.

This absolutely sucks. I am very much not having a good time.

Edited to add; I have found the answer to a question that the rational part of my brain has quietly been pondering in the background since this whole thing started. The question being “how bad do things have to get before I give up the pretense that I can just power my way through this like nothing is happening?”

The answer is: this bad. I cannot deceive myself anymore. I may not be “sick” but neither am I well. This is the limit. Merely human after all.

Edited additionally to add; You know what’s awesome? Bubble baths. I know we’re in the middle of another excessive heat warning but I am, right this very minute, soaking in a nice warm bath with lemon-ginger bath salts. It is really helping me feel less terrible.

Starting to feel like a broken record

Fatigue. Fatigue, fatigue, fatigue, fatigue. I really have difficulty trying to express what this is like. If anyone has had a car with a starter that failed, the feeling when you sit down, turn the ignition key and it just goes *click*, that’s kind of what it’s like. It’s not a dead battery exactly, everything is there and everything should work but somehow there is a connection missing that prevents anything from happening; “I think I’ll do some dishes.” *click* “Or maybe I’ll just sit on the couch”. “I have to go to work tonight.” *click* “Or I’ll go to bed”.

As I briefly mentioned, a couple days ago I decided to try kind of an experiment. I went to bed early and slept until I woke up. I stirred around for a little bit and then took a nap, and after I woke up I took another nap. Something happened that I can’t recall ever happening before; I slept until I genuinely could not sleep any more. Around 10 hours of sleep at night, two or three naps that lasted a couple hours each and I was wide awake. But I still felt exhausted and still didn’t have enough energy to do anything.

I suppose it would be like being on a strong muscle relaxer or a weak paralytic. Your brain is wide awake but you just can’t move your body.

I’m fully willing to accept that there may be a psychological component to this as well. This sucks. I’m not enjoying it. I can’t do everything I need to, let alone anything I want to, which is frustrating and upsetting which makes it even harder to try and muster the willpower to do anything.

Fortunately, as previously mentioned, I only have two more weekly treatments left (one after tomorrow!) but I have no idea how long it will take for my energy levels to get back to something closer to baseline. I suppose there is nothing for it but to wait and find out.

Basement Demolition: Complete etc.

The basement demolition is, as stated in the title, complete. We have a pump now that I have been assured will keep the basement dry during anything short of a Biblical flood. I’m trying to be optimistic about that.

The reconstruction will be in three phases. The first phase is wall reconstruction and painting which will start in about a week and take probably 5-7 days. Second phase is floor reconstruction which will take place at some point after the wall reconstruction and probably won’t take more than 2 days (if that). Third phase is unpacking which will start after the floors are done and take as long as it takes. I’m hoping that everything will be done by the end of October.

In other aspects of my life, the fatigue from my treatments is running roughshod. Last night I slept until I couldn’t sleep anymore and I’m still exhausted. I went downstairs to survey the wreckage and start making preliminary plans for reconstruction and that took all the energy I had. It’s really a good thing that I only have two more of these weekly treatments. I’ve missed two days of work this week and I’ll just have to see how I feel tomorrow.

It is enormously frustrating. I take stock of all the activities I’ve done over the last two days and the list is not long. At all. Somehow, though, I don’t have enough energy to do anything more and, while one part of my brain knows what is going on and understands, the other part of my brain will not shut up about how lazy I’m being.

As I believe I’ve mentioned, sometimes my brain is not particularly helpful.

Treatment #4; Basement Demolition days 1 & 2

This is something of a theme already but I feel moved to observe once again that the fatigue is real. I had planned to post most of this yesterday but the act of sitting down in front of a computer and trying to come up with words was going to take more energy than I had left at the end of the day. I messaged my sleep medicine doc regarding this whole fatigue thing and he said there were some things we could try but first he wants to check me for narcolepsy.

Now I’m all in favor of due diligence but I’m pretty sure there is a better explanation for my excessive daytime sleepiness than narcolepsy.

Anyway, the treatment schedule, as I understand it, is for two more weekly doses of BCG and then take 4-ish weeks off, do another scope and see what happens. This is good news in that it means I only have two more doses before I get some time off which will allow, hopefully, my energy levels to recover a bit.

Simultaneous to all this has been the demolition of the basement. I had more to blather on about with this but I’m kind of running down again so I’ll pick this up later.