So after a few days that were even worse than the past few weeks (because I decided to try and reintroduce more solid food into my diet), I finally had a decent day yesterday!!
The sad truth is that, for the moment, I feel the best when I have not eaten. I can have Boost, but too much of that or anything more substantial than that puts me back in bed and in tears.
Yesterday I had a Boost super early in the morning when I couldn't sleep (around 4am), and then another one at noon. I felt nearly normal... well... my normal.
So I pushed as hard as I possibly could and got some big things accomplished. I managed to do all of my Christmas shopping in one shot -> 2 stores only, using a cane and a rolling cart (brilliant invention). I refilled a prescription at the pharmacy, went home and threw the ball for Dex, ran the dishwasher, finished a load of laundry, and then finished two books I have been reading.
This was a massively successful day.
Of course I am paying for it... mostly through joint and back pain.
Here's the problem:
Whenever I feel well enough to cross some errands off of my 'to-do' list, I start to think of the thousand other things I would LIKE to get done. They pop up in my head on a day like yesterday because I finally had the energy to potentially accomplish those goals. But I can't do it all!!
So when I tried to go to bed tonight, all I could think about was the added checklists and errands and issues that need to be dealt with. Plus all the friends and family I would really love to see since I have not felt well enough for more than a couple of social engagements.
Luckily, my cousin introduced me to this new app called Insight Timer, which includes spa-like music and guided meditations to choose from. I put earbuds in and listened to an hour of a guided meditation for sleep, and it was working wonderfully... but the second it was over, Ryan started snoring. I was jolted out of my comfortable trance and my mind went haywire again.
I tried SO hard to get back to that comfortable near-sleep state, but it just wouldn't happen. So I moved into the guest bedroom and came up with a list of deadlines for all of these issues that need to be dealt with. Then, the more I wrote down, the more I thought of that needed to be added to the list. The longer the list became, the more stressed out I became.
So now I have this monstrous list, I can't sleep, I want to get started on some of these problems but I also don't want to wake Ryan up, and I am going to be facing an even bigger issue:
Time and energy.
On Berinert treatment days I wind up sleeping almost the entire day after the injection because of the toll that it places on my body. That is twice a week that I end up sleeping for nearly the whole day (which will include today once 7am hits).
I am also supposed to start a new medication called Cosentyx asap. I received my package on Wednesday and was initially supposed to start then, but because of my extensive history of allergies, I have to start it on a day I can take the time with Ryan to go to Urgent Care and do the injection there, in case there is a problem. Furthermore, Cosentyx involves two more sub-q injections each week for the next month, and then once a month after that. These types of medications - Biologics - also take a huge toll on the body, which results in more full days of sleeping. But I shouldn't do these injections on the same days as my Berinert injections because that might just be FAR too much for my system to handle. (Even doing Berinert and Methotrexate on the same day has proven to be excessive).
So for the next month, I will be doing my regular once-a-week Methotrexate sub-cutaneous injection, my two Berinert sub-cutaneous injections per week, and my two Cosentyx sub-cutaneous injections per week.
I will be mostly in bed with a very sore needle-poked stomach.
And an ever-growing 'to-do' list.
At least I can still manage to do these things... and now that my Christmas shopping is finished, I can wrap presents whenever I feel up to it (apart from a couple of gifts that have yet to be delivered).
These are good problems to have... I just wish I could sleep right now instead of all day during the day...
Oh well. Can't have everything. 😉