More Life With Chronic Fatigue

So, here it is nearly 9pm, and I'm drinking a huge cup of coffee just trying to be awake enough to last until it's a decent hour to go to bed. And that's after taking a two-hour nap.

I've been dragging all day again. Grocery shopping really wore me out. Woke up sore all over just from walking around Costco. I'm that out of shape now after sitting and doing nothing since last summer (when I managed to still go for near-daily walks to Pokemon hunt).

From the moment I got up a little after 9am, I constantly considered just going back to bed. I drank about an entire 12-cup pot of coffee myself between then and 2pm. I was still exhausted like I pulled an all-nighter. Of course, having lunch made everything worse. I tried to watch Netflix and knit, but it was so hard to focus on both. I kept screwing up the pattern (which is pretty simple) and missing parts of the show. I also couldn't get my fingers to cooperate with the knitting so it was slow going on something that should be quick and easy to work on.

Finally, around 5pm, I gave up on staying awake. I developed a headache and literally couldn't do anything because of the brain fog and pain. So I crawled into bed and laid there, dozing off and on until 7:30pm. Got up with my head hurting just as much as when I laid down (and I took something for the headache before the nap) and feeling just as exhausted as when I went to bed last night and when I got up this morning. Over two hours of my day spent in bed with zero benefit.

So, I'm having another cup of coffee (and my preferred cup holds 20+ ounces so it's like 3 regular-sized cups of coffee) just so I can try to watch some more Netflix and knit until around 11pm when I can go to bed for the night.

This is how most of my days go. I spend the whole day foggy and barely functioning, fighting taking a nap because that's a waste of the day since it doesn't make me feel rested, just trying to make it to bed time.

I feel like I'm just wasting my life. I am wasting my life. The weather has been beautiful, but I just sit inside staring at the sky and trees from my bedroom window. I don't have the energy for walks anymore. No more meandering along the river or Pokemon hunting in the neighborhood. I don't even have the energy to go downstairs and sit on my porch. I miss going for walks. I miss so much of everything.

I've been on my new dosage of blood pressure meds for a week now with no difference that I can tell. My pressure was still 130/80 when I took it this morning before my meds. And was 127/72 just now after having taken my meds this morning. I mean, that's a lot better than what it was off the meds (in the 160s/90s) but I don't know if it's good enough to make me feel better. My doctor wanted it under 130/90 so I guess it's where she wants it but I don't feel any better. My legs and ankles and hands are all swelled up and hurt just like always. Still utterly exhausted. Still with the chest pains. My breathing has been okay today (anxiety seems to be the main trigger for that).

Doesn't look like I'm ever going to get better and this will be the rest of my life. My husband still doesn't get it. He's constantly suggesting things to do like hikes in the mountains or walks along the river or taking a day trip to the coast. He doesn't get that I can't do those things anymore. I probably never will again. Not unless he's pushing me in a wheelchair or something and even that would tire me out. I'd probably just sleep through it all. If taking a shower is so exhausting that I can't breathe and almost collapse while drying off, how would I spend the day at the beach where I have to keep an eye on a gaggle of kids so they don't drown? I wouldn't even trust myself in the water without supervision.

I honestly don't trust myself to do anything unsupervised anymore. I don't drive. I make myself nervous when I do go for walks alone because what if I get so tired, I can't go on? What if I just pass out? We luckily having railings on both sides of the staircase because I'm constantly afraid I'll lose my balance and fall down the stairs because I'm so drowsy all of the time.

And I'm rambling again because my brain is confused and forgetful. I don't remember what I was even talking about. Ugh.

*picture of my favorite coffee mug