Unpleasent, But Do-able

For those of you following along with my journey, you may remember that I was recently put on a stimulant by my neurologist. The hope is that, combined with all of the other things that I have been doing to alleviate my fatigue, this would help me stay awake and upright for long enough stints that I might be able to return to work.

Unfortunately, my first few weeks on the pill were rocky. The pill does keep me awake. But, it doesn’t really add any energy. Plus, sometimes, I still fall asleep anyway.

On top of that, it makes it harder to sleep at night and I was already experiencing sleep disturbances at night.

I recently had yet another follow up with my primary care physician. Back before the pill that my neurologist had put me on was approved, my primary care physician had come up with an alternative plan to put me on two other medicines that would perhaps provide the same stimulant effect. For more of that story, see this previous post. That plan was rejected by my neurologist, who instead pushed her plan through with my health insurance. So, at my follow-up with my primary, I explained how her plan was rejected by the neurologist.

I also explained to her the difficulties that I was having with the pill that I was put on by the neurologist. She suggested that I add one of the pills that she was originally going to put me on and then also talk to the neurologist about switching stimulants.

The pill that she had prescribed is an anti-depressant with a mild stimulant effect that also helps with neuropathy-the stinging and burning sensations that I was having in my fingers, toes, and in the rest of my body.

So, this past week, I added in the pill that she had prescribed. And, knock on wood, it does seem to be helping just a little bit. First off, my neuropathy seems to be better.

But also, I seem to have just a little bit more energy.

Being on just the pill prescribed by the neurologist, I ended up being awake, but still not really able to move around or do anything. With the addition of the pill from my primary care physician, I am able to get up and around.

I’ve experimented this last week by trying to wake up earlier and follow the pacing schedule that I had attempted to adopt. For more on pacing, see this previous post. If I am able to successfully do the pacing schedule, it would mean that I could work a full day.

I am happy to report that, for the most part, I was able to stick to the schedule and was awake and alert pretty much all day on most days last week.

There are still unfortunately quite a few drawbacks. First off, obviously, this pill only deals with the fatigue. I’m still suffering from all my other symptoms.

I’m simultaneously studying and coming up with a whole bag of tricks to help with my brain fog. But, more on that later.

Second, I still feel tired. At points, overwhelmingly so. In some ways, it feels like my body is in a tug-of-war with itself. I can feel my body screaming that it wants to be asleep and it’s like my brain is basically telling it “too bad.”

It feels very unnatural and in some ways, feels like I’ve made some kind of Faustian deal with the devil. The other problem is that is still is causing some issues with sleep disturbances and I’m having a harder time sleeping at night.

I started taking sleep pills to help try to counteract the effects at night. But, I can still feel that my sleep is not as heavy. I am also still waking up a few times a night. But that was always the case anyway. Also, I seem to be having more headaches.

Plus, it appears that I still have crashes. Sometimes, my body hits a brick wall and I sleep regardless of the pill. That happened once this past week and it disappointed me. But, as the week went on and I continued to do my experimentations with the pill, I came to understand more of what happened.

To counteract that effect, I started taking some days off the pill- the days that I usually would be off work, or at least not work a full day. Of course, the trade-off is that on those days, I am a zombie with hardly any energy at all.

All in all, there are still kinks to work out and I’m still facing some struggles with balancing it all (i.e-grooming, cooking, cleaning, etc.) But, these tests have shown that I can pull off a work day. And the strides that I made last week in terms of pulling my office and files back together have filled me with pride.

If that’s as good as it gets for the time being, then it’s doable. It’s unpleasant. But, it’s doable. And I can work with that.

#treatment #stimulants #pacing #recovery #longcovid #chronicfatigue