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.
Mother’s Day always creates such a barrage of mixed emotions for me. There was a lot of trauma, abuse, mental illness, and foolish decisions that marked my childhood. My mother was far from a perfect parent. Luckily, she does admit to that and seems to be really trying to be a better person now, but being around her always triggers so many memories, thoughts, and feelings – some good, some bad, some funny, and some tragic.
I think part of the issue is that my brain has a tough time seeing how she acts towards me now and reconciling it with memories of how my sister and I were treated while growing up. I do believe in forgiveness (within reason), and I do love my mother, but I doubt there will ever be a day in her company that doesn’t create confusion for me internally.
I write this post today to recognize those of us who struggle on Mother’s Day to even know how to feel…
It is strange how negative words can stay with us for a lifetime and hurt long after they are spoken. Today, I was reminded of a conversation I had way back in middle school. My friends and I were having a conversation about birth order statistics and how the oldest is often the smartest and most responsible in the family – which apparently was the case in all their families.
I mentioned how that hadn’t really happened in my family as I was the youngest and yet I was the one in the gifted program, the one who got straight A’s, and the one who was least likely to break the rules. My sister was very smart in her own ways, but not overly academic or intellectual.
One of my friends (or more likely a frenemy) replied, “Well, maybe your sister is the pretty one then.”
Before I could digest this insult or respond, one of my other friends chimed in assuring the group that my sister was no looker either, which made everyone laugh. I didn’t let on that I felt anything, but inside I was crushed. I felt ugly and I also felt bad that my friends had insulted and made fun of my sister.
To this day, remembering this conversation makes me feel ugly, plain, and rejected. I wish my friends had been more careful with their words.
Over the weekend my husband and I visited Indianapolis to see the Star Trek exhibit at the Indianapolis Children’s Museum. My husband was in heaven lol. I was there. I did find a few fun things to concentrate on though.
I annoyed my husband by sitting in the captain’s chair like this:
My personal favorite in the exhibit was this painting of Data’s cat from The Next Generation, I would hang this in my house:
My husband got assimilated and beamed up (along with a little friend):
I did get to ride the museum’s carousel (one of my favorite things to do at any museum, zoo, or park). Unfortunately, I threw my hip out climbing onto it. I think from now on I may need to sit on the little benches on the carousel like all the other old, broken down bodies:
I also got a photo op at Candyland:
Now I am back home, exhausted, sore, and will probably need a few days to recuperate.
That headline isn’t exaggerating. I had a horrible dental cleaning experience yesterday. Now to be fair, my teeth are extremely sensitive, just like everything else on my body (thanks autism), so cleanings are never fun for me anyhow. There are always at least a few painful nerves hit during the process.
However, yesterday the lady who regularly cleans my teeth was on maternity leave so I had a new lady who was incredibly slow, annoying, and seemed to manage to hit about every nerve on every tooth, at least on the front ones. I can’t recall the number of times I flinched from the pain. At least a couple times I teared up. I was starting to wish I was having a filling instead, because at least then I would be numbed up some.
I feel bad calling the lady annoying, but to be frankly honest, she was. She was one of those people who just talks and talks and talks, which drives me crazy. It was especially hard not to be annoyed when I was already having a bad experience. A few minutes into the cleaning I was tempted to get up and say “I’m sorry, but I just can’t do this today”, and reschedule for when my normal person gets back. I managed to tough it out though. Glad it is over and my regular cleaner should be back before my next cleaning!
It’s been a rough week physically. I had a CFS/ME flare-up, which feels a lot like mono if you’ve ever had that, or the worse flu you can imagine. During these flare-ups, I run a fever, my body aches horribly, I feel too exhausted to move, too exhausted to breathe, and if I sit up or stand up long, I feel faint. Trying to do the simplest tasks is overwhelming and can make me feel like passing out, even just putting up my dishes or trying to take care of my personal hygiene.
Yesterday I was finally feeling well enough to get out and since the weather was warm, my husband and I went for a picnic at a local park. We got subs and then after eating, walked the short distance to the lake edge. As you can see, it was pretty darn muddy:
I’m glad we went, because I needed the mental distraction, but now I am really sore and exhausted from even that short bit of activity. Trudging through the mud really wore me out because the mud sticking to my shoes made my feet feel like they gained 10 pounds, and I almost slipped and fell a couple times. It probably wasn’t the brightest idea to go, but mentally I needed to feel alive again, even if just for a little while.
I’ve been feeling rather sad and isolated the last few days. I think a lot of it comes from the stress of dealing with chronic illness and chronic pain. Anyone who has chronic illness is probably familiar with spoon theory, an illustrative way to describe why you have to choose carefully how to use your energy to do things when you have very limited physical ability.
In other words, sometimes you have to choose whether you would like to go out and socialize for a short period of time, spend that energy getting some much-needed housework done, work on a hobby or personal interest, or even simply take a shower…because you just don’t have the energy and the physical ability to do them all within the same day like a healthy person could.
Most of the time I end up choosing to spend my “energy” and limited abilities to either spend time with my husband, work on my art/writing/blogging, or take care of personal hygiene or light housework. Prioritizing these things leaves no extra energy or time to socialize on a wider scale or do much outside of the house, other than maybe occasionally going out for dinner or doing a little necessary shopping. Even the thought of going to a movie is often too exhausting to contemplate.
All of this makes me sad, especially when I remember how I used to enjoy so many other things I can’t do any longer. I used to love hiking, playing tennis, roller skating, bowling, dancing, working, swimming, being a foster parent, and going out to various activities with people I know or share interests with. I’ve pretty much lost all of that for good. And that is depressing.
Here are a few more Elfchen poems (5 line poems that have the following number of words per line: Line 1 = 1 word, 2 = 2 words, 3 = 3 words, 4 = 4 words, 5 = 1 word, the words on line 1 and line 5 should not be the same word).
open those cuts
and suction the blood
the orange gremlin
in the white house?
on the cover
of a paperback novel
(My apologies to any Trump supporters for #2 lol, as you can tell, I am not a supporter)
(For #3 I just had to write something because I love the name Potemkin)
I’m a paper doll
with third degree burns.
Dress me up,
make me pretty,
and please, simply ignore
all the raw, peeling flesh
falling onto the floor.
(Poetry by Maranda Russell, marandarussell.com)