The past few days have been rough. My back went out again, so my upper back and neck have been causing extreme pain again. I think the gluten free diet isn’t really helping much, as all the things I thought it was helping have suddenly flared up the last couple weeks. My GERD has been awful to the point I’ve had trouble swallowing again, the night sweats are back, and I seem to be having a widespread inflammation flare-up again.
I know I shouldn’t have put so much hope on the diet to solve all these issues, but I feel like I’m so desperate for something to make me better that I often put high expectations on each new treatment idea, hoping it will be “the one”. Of course, I probably need to accept that since I have Ehlers Danlos (a genetic connective tissue disorder), that nothing is probably going to be that cure-all I have been hoping to find.
How I wish that there was a cure to whatever is going on inside me. I often long for one of those scanners like they have on Star Trek that could easily pinpoint exactly what is going on and what the treatment should be without being invasive. I guess I was born too early for that. We might be headed that way technologically, but it is probably well off on the horizon.
Had my EEG yesterday morning. It wasn’t too bad. The flashing strobe light part was almost kind of like what I imagine doing psychedelic drugs would be like – all the swirling lights and patterns…it was kind of crazy. I was supposed to nap for like 15 minutes or so, but just couldn’t fall asleep. I’m hoping I won’t have to do the home sleep study, but I guess we’ll see what the doctor thinks. The gel they put on my hair to keep the electrodes connected drove me crazy, so I had to come right home and wash it out.
Other than that, not much exciting is going on. I am attempting to embrace a mostly gluten-free diet in hopes that it helps my digestive and chronic inflammatory issues, but it is hard because many of my favorite foods (pasta, pizza, bread, cereal, cookies, etc.) have to be eliminated or replaced with gluten-free substitutes which don’t always taste as good or have the same texture. As an autistic gal, food texture matters A LOT to me and it takes a good long while for me to get used to changes. Thank goodness a few mainstream cereals are already gluten free (like Cheerios, Lucky Charms, most Chex varieties, Fruity/Cocoa Pebbles, and a few more).
My mood today is rather blah. Just not feeling much of anything, except tired.
Hello everyone! Lately I have implemented a few things into my life that I do feel are helping my depression and chronic pain symptoms, at least to an extent. No, I am not cured, and I still have some really bad days, but I feel like these small changes have been for the better, so I wanted to share:
- My psychiatrist has been trying to get me to take Omega-3 supplements for months now, and I finally decided to make sure I actually take them on a regular basis. I have been trying to take 2 supplement pills a day, one in the morning and one at night. It is supposed to be really good for depression and inflammation, so it is worth a try. I don’t like the taste or how huge the pills are to swallow, but I am making it work anyways.
- I have read multiple places that people with fibromyalgia are almost always lacking in Magnesium when tested, so I started taking a daily supplement of that as well. I do think it has lessened the severity of the body aches and cramps I experience on a daily basis. I also started taking a Vitamin C supplement in hopes it will help boost my immune system and prevent some of the chronic ear infections I have. I am trying to eat healthier, more natural foods too.
- I have started practicing mediation on a regular basis again. I try to take at least a few minutes most days to meditate, focus on positivity, and allow the spiritual side of myself to shine. My husband and I have also been attending a once-a-week meditation group when we are able to. Having that time to connect with others on their own spiritual paths has been helpful. They all seem to be very open-minded and open-hearted individuals, which are the kind of people I would like to have in my life more.
- Lately I have renewed my dedication to my own creative process and have felt inspired to create art again, something I have definitely been missing in my life. I simply feel better when I can create beautiful or unusual artwork, even if others don’t always understand it. Honestly, I create for ME. Yes, I sell my artwork and it fills my heart with joy to know that others appreciate and collect my efforts, but deep down, I create simply because I need to express myself.
- Make it a priority to spend time with nature. Whether it is going to a park, hiking through the woods, sitting on a swing outside your own front door, or bringing plants, animals (pets), crystals, and other natural objects into your home, reconnecting with nature always seems to be healing and comforting for myself. Maybe it will be so for you as well.
So today I’ve mostly spent my time watching YouTube videos about Seroquel, especially videos about the side effects of taking it and the experiences of people who decided to get off of it. I’m not making any rash decisions about the medicine myself (which I do currently take). The medicine is a wonder drug when it comes to helping me get to sleep, which is the main reason why I am taking 50mg of it a day (which isn’t even a high dosage). I do like the warm, fuzzy feeling I get after taking the meds and the way it knocks me out within an hour of taking it. I’ve tried other sleeping pills and none of them worked nearly that well or dependably.
However, I am having some side effects that I assume may be from the Seroquel. I am sleeping at least 11 or 12 hours a night and still waking up groggy and just wanting to sleep all day. I normally get up, have breakfast, then lay back down on the couch and try not to fall back to sleep. I am exhausted constantly (even more so than just from my normal CFS symptoms). I am starting to feel a bit “zombiefied” as well. As I’m typing, I kind of feel disconnected from my fingers and feel like they are somewhat trying to do their own thing rather than what I want them to do. I wake up each day with a hangover feeling and often with a nasty headache that sometimes lasts all day. I am also HUNGRY all the time it seems, especially for sweets. I really fear gaining weight. I’ve been on the med about 3 months now and have gained a few pounds, but I fear I would gain much more if I lost my self control and ate as much as I wanted.
I guess the reason I am sharing all this is just to see if others who have taken it have experienced similar things? If so, did you keep taking it? I really debate whether sleeping regularly is worth all the side effects or not.
*Art by Maranda Russell
I wrote the following while I was pretty hypomanic. Thought I would share more as a glimpse into my life and hopefully educational about bipolar 2:
I AM bipolar, I’m officially crazy. I can’t seem to control myself, but on the medicine I feel SO much better, who cares if I’m hypomanic? Not sure I wanna tell the doctor the truth. Thank God I have my husband to keep me in check. I AM perpetuating the cycle. Thank God I never had kids. My muscles twitch and I can’t control them. I feel like I have Parkinson’s, but I’m good with that. I am stressed the fuck out, but I don’t care. I don’t want to sleep, but I have a magic bullet called Seroquel. I just worry I’ll get fat, but how fat can I get when I can’t sit still? Every dance in creation I think I’ve done today, even if it was spazzy. Some might look at me and say I’m a danger. I look at me and say I’m alive.