Pacing so far

This week has been a mixed bag for me. It was my first week on my new pacing schedule and it has provided me with some positive signs. But, I also suffered from a few really hard days as well.

Having completed the free pacing course I mentioned in my earlier post, I can now tell you my opinion on it.

I think it’s a good tool in terms of learning a bit about this process and also for having access to information about this process that is free.

I researched a lot of pacing courses and counselling options. And usually for guided help, you have to pay.

The website that I used for this free course has a guided paid course option as well. But, the class doesn’t start until the end of January and you have to pay $20 for it. That’s still very cheap. For a counselor that will give you 6 guided classes that you can get started with right away, it’s gonna cost you $300.

I’ll also say this about the pacing course, it is really redundant. A lot of what it says, it says over and over again. But, buried in all the repetition are some very important notes and techniques. For example, one of the success stories that I read gives you a good starting place for creating a daily schedule for yourself.

I ended up using that sample as a guide for my own schedule. The basic schedule that I have used (or at least attempted to use) this week was to replace the 2 hour naps that I usually take with several 15 minute breaks spread out throughout the day.

The course also told me to take additional short rest breaks at any time that I start to feel really tired or confused or any time that I know that I am about to exert a lot of energy and any time after I have just exerted a lot of energy.

My schedule gave me mixed results this week. I’m still waking up tired and I’m still in a lot of pain. I still have fatigue. I still have brain fog. But, I seem to be doing slightly better with post-exertional malaise.

Post-exertional malaise is “fancy speak” for usually anytime that I do anything that takes up a lot of energy, afterwards I feel incredibly sick and like I’ve been hit by a truck.

Last time I overdid it, I was bedridden with nausea, vomiting, body aches, headaches, dizziness, confusion, weakness, etc.

This week, I had 2 days where I was very active. I cleaned my entire apartment and I also gave yet another interview to the press about long-covid.

I got through it all by taking several rest breaks between actions and I managed not to get horribly sick in the process.

There’s no way that I could have gotten through that before now without making myself sick beyond words.

I was so excited and hopeful about this sign that I suppose I was a bit too optimistic about how the rest of the week would go.

Wednesday, I spent most of the day in bed. I still managed to get a few things done using my phone, computer, and tablet.

I wasn’t really that surprised that I was weak and fatigued. I knew that I had been very busy the last 2 days and I also knew that I had additional aches and pains during the night that had made my already troubling sleep pattern worse than normal. But, I thought that Thursday I would be more productive.

I did start out very productive on Thursday. I got many things done and also had another positive development.

I discovered that a long-covid care site was just started in Atlanta. It’s not nearly as advanced as the ones in other states but there is also not a waiting list. So, I will have my 1st appointment with the care center on Monday.

All in all, things were looking pretty good on Thursday. But, then around 4 o’clock, I hit a wall. By Friday, I managed to do a few things but was overall feeling very tired, overwhelmed, and negative.

Today, my attitude is a little brighter. I am very much looking forward to a virtual game night tonight with my childhood friends in celebration of my birthday.

My energy is unfortunately still lacking but I am able to give myself some grace for that at the moment.

I want to have energy tonight. So, I am willing to sacrifice the morning. But, it’s still a very hard thing for me to not be able to get up and take care of myself.

It’s really hard to focus on the small gains when you still feel so far away from the person you used to be.

Overall, I think this week has shown me that there is a lot of possibility that comes with this new pacing technique. But, I am still very much a work in progress.

#longhauler #longcovid #disability #medical #cfs #chronicfatigue