Oops, I Disappeared

I haven’t written in awhile, because I’ve been going through a phase of not-so-great. I feel like crap, to be honest. Pain and fatigue are through the roof, and brain fog has been creeping in as well. I’ve stopped sleeping through the night, which is a very new development for me, I’ve always slept through the night, and been a somewhat heavy sleeper.

I’ve been having a lot of “painsomnia,” as my wonderful chronic illness internet forum calls it. I wake up in the middle of the night with searing hip pain that radiates down my leg. I prefer to sleep on my side, but the pain is too great, so I use a wedge pillow under my knees and sleep on my back. Either I wake up with horrifying back pain or awful hip pain. And when I wake up, I am awake. Fully awake brain. So I go pee, turn on a podcast, and try to find a comfortable position. Eventually I fall back asleep, but I’m often awake for more than 2 hours. One night I woke up at 3, and was awake until past 6. I’m so tired.

Out of curiosity, I decided to start checking the time when I wake up. I find it exceedingly interesting that for the most part, I wake up between 5:15-5:30 am. I take my pills at somewhat different times every night, depending on when I go to bed, so I don’t think it’s things leaving my system and waking me up. The house and world are very quiet at that time, so I don’t think it’s outside influences. I just wake the hell up.

Being so tired has affected everything. I’m injuring myself way too much. Burns, cuts and bruises are the norm at the moment. I sliced up a finger knuckle with a serrated knife the other night. Tonight I managed to burn my hand through my thickest potholder (I think it was wet). The other day I whacked the side of my ankle so hard it gave me an adrenaline rush, which then resulted in a panic attack. Ugh.

I’m also lethargic enough that I can’t get much of anything done around the house. Before this fatigue flare–crap, I just realized that’s what this is, I’m in a flare again dammit–I wouldn’t watch much tv during the day. I’d get up, play on my ipad, get a few things done, read or play on my ipad again, etc. The last week or so, I’m fatigued enough that holding up my ipad first thing in the morning is tiring. I’m watching my way through the entirety of Futurama on Netflix (no great hardship, it’s only the best show ever). I have been trying to leave the house once a day, but that’s getting challenging. I have three errands I need to do tomorrow, and I’m already overwhelmed thinking about it.

The brain fog has returned as well. I currently can’t remember one of the three errands I just mentioned in the last paragraph. That was about 30 seconds ago. What the hell, brain. I hate the fog. It affects my speech, I stare into space, I confuse words not just when I’m speaking but when I’m writing. I have stuttered over my words and erased and rewritten things more than you can imagine. (ooh! ooh! library books! That was the third errand.)

The diet is still going well, I’m over 5 weeks in! I’m really proud of that, and for the most part, it’s become normal. But I really don’t know if it’s helping in enough ways to be worth the hassle. I’m still going to complete the two months, and slowly reincorporate the banned foods to see what the problems actually are. But before the elimination diet, I had such great expectations for it–energy! Pain-free days! I feel like I’m more tired and in more pain than when I started the diet. Maybe gluten lubricates my joints?!

I see my doctor in 2 weeks, where we’ll discuss how and when to reincorporate foods. I’m expecting that I’ll bring one food back at a time, and bring the dairy back incrementally, so I can see if I can tolerate ghee, then hard cheeses, then butter, then yogurt, etc. Something in the dairy family, I think, is the culprit. I refuse to think it’s gluten. Yes, there are decent subs out there, but dammit, I want bread! For the last week, all I’ve wanted was a slice of toasted sourdough bread with butter. Lots of butter. Well, except for last night when I would have given my left arm for a slice of pizza. Damn. 3 more weeks.

A few good things: I bought a sewing machine last week. I’m really excited to re-learn how to sew. I took a sewing class in high school and loved it, but I really haven’t touched a machine since then. I bought a used-new machine. A woman bought herself a new sewing machine, but never got around to learning to use it. So it’s a much better quality machine than if I bought one new. It’s a quilting machine with a zillion stitches and features. I was playing with it today for the first time, and it’s really fun. I would love to learn to quilt, as well as to sew household things. Ultimately, it’d be really nice to be able to sew myself a shirt that actually fits well.

I’ve also been knitting like crazy. I just finished my latest sweater, which just needs buttons and ribbon behind the button bands. It’s very nice and simple, sort of an old fashioned classic cut. I’m very pleased. I’m currently working on socks and a shawl, and will probably start thinking about my next sweater soon.

I found a local bakery that is gluten free and vegan, and gorged myself on scones and cookies over the weekend. The scone was pure heaven. I love pastries. I also bought myself a mini cake, and honestly, it was too sweet. I haven’t been eating many super sweet things, no ice cream (except occasional Ben & Jerry’s sorta-ok vegan ice “cream”), no pastries, cupcakes, cakes, etc. Not that I ate those things all the time, but now I’m eating almost none of it. I think maybe the diet has helped to curb my sweet tooth, and that’s a good thing.

Also, spring is here! Everything is better when there’s more light. Even when I’m awake at 5:30 in the morning, I can hear the birds starting to chirp. Trees and flowers are blooming, and we’re having lots of days with sunshine in the afternoon, and highs in the upper 50s. It feels amazing.



1 thought on “Oops, I Disappeared”

  1. Hey Jenny !!!!! What you’re going through sucks !!!!!!! I understand what you are going through, although we might have different diagnoses, we share some very similar symptoms. For several months now, I’ve been experiencing brain issues, involving memory mostly, but also involving falling and doing weird things !! Moving to MA has opened up health advantages to me, in which I found a great neurologist. She ran the gamut of tests, turns out even though I do have some natural degeneration of brain cells, I was severely lacking in some important vitamins and minerals which can have severe impact on my brain cells. I have other issues ( ongoing auto-immune blood issues ) a lot of trouble walking up and down stairs because of bad knees, but I do what I can, a day at a time. I’ve been able to find docs for these issues…we’ll see what happens. I’m proud of you that been able to navigate through your diet and seeking out foods that are good for you and your health. Your mention of toasted bread with butter had me though….yum !!!!! I love you Jenny….always here if you’d like to talk or laugh !!!! Love you…xoxoxoxoxoxoxoxoxoxo !!!!!!!!!!!!!!!!!!!!!!!!!!!


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