I don't know what to title this one. My illness? That sounds like I should be in a bubble with no human interaction. My condition? Maybe, but it's a bit clinical sounding I think. Also, it makes it sound like I have a parasitic twin growing from my abdomen. I have gain weight around my middle, but no. The "poor me pity party" post? A close second.
I am not going to write this time about my journey so far. Suffice it to say it's been a very long 15 months. If this was 5 years ago I would have been labeled with chronic fatigue and fibromyalgia with a pat on the head and a "Good luck with that". Several years before that it would have been all in my head. And even before that I, being a women, would have "the vapors". It took four doctors and I lost count of how many visits, but a doctor finally said "something isn't right here" and took me seriously. In one week I went from running 5 miles in preparation for a 10K to barely being able to walk up a flight of stairs or do yoga. The doctor was correct, something wasn't right.
So after much poking and prodding and scanning and sticking we've discovered that I have an automatic nervous system that is on the fritz and a something called mast cell activation disorder. That latter probably is causing the former, but who knows. The consequences of both of these are a plethora of seemingly disconnected and nebulous symptoms, including, but not limited to, dizziness, migraines, fatigue, tummy issues, out of control stress response, memory problems, fatigue, brain fog, swelling especially in my extremities, TMJ, and did I say fatigue yet? Yay for me!
I might write more on this subject later. Perhaps a more educational post about what happens when your automatic nervous system stops functioning properly (spoiler: everything goes to shit). or when your mast cells decide to start degranulating for no damn good reason (another spoiler: everything goes to shit).
But for now I just want to write about why it sucks to have these conditions and still have to be an adult with bills and a mortgage and crap. So a normal, full time office job can not happen anymore. My nervous system won't allow me to sit up at a desk for 8 hours. And my stress response is totally out of wack too. I worked at an oil and gas company until November of 2015. Low oil prices do not make for a low stress work environment as a petroleum geologist, believe me! Since November I have been navigating the wonderful world of disability, working on getting contract geology work I can do from home and getting this website and my etsy shop up and running!
Recently I have been working on a new shawl on my loom. I am super excited about it and I want to work on it all day. But my body won't let me and that is super frustrating. I can work on my loom for about 2 hours and then I have to lay down. Sometimes I can lay down for 20 minutes and be good to go. Sometimes, especially in the afternoon, I lay down and really can't get back to work. I am just done.
I have good days and not so good days. Lately have been not so good and it sucks because I just want to finish warping my loom so I can start weaving. Or I want to try a new dying technique I read about, and test some new color ideas. But I know that will have me standing in the kitchen for hours and I don't have it in me right now. I have to wait until the right day. Then when I do have a good day or two I have to be careful about not overdoing it. I try to get weaving or dying done as well as do some of the household crap that my husband does most of the time because I can't. I'll make dinner or do the dishes or try to clean up a bit. But that, plus dyeing or weaving might mean that I have nothing left in the tank by 7pm or that I will be dead the next day. Throw in socializing or traveling and I am useless.
Now I know that it sounds like I am cranky because I can't work on my loom all day and I have to go lay down. Most people would donate a lesser organ to be able to craft and nap all day. But that's like a person standing up being jealous of someone who is about to get their hand cut off because they are allowed to sit while it happens. I'd rather not have my hand cut off, even if there is a side benefit. A stranger recently asked me what I did and I was honest and said that I am on disability, so I am home. She said "Oh that must be nice"... ... ... I had no idea how to respond. I know they didn't mean it like that, just that they would rather not be working at the cash register at the grocery store. But at least she COULD work the cash register at the store. Because that girl can also travel to Europe on a whim, or take up jogging, or have kids, or any other the other things that people do when not at work. I can do all those things too, but with considerable difficulty and much more planning/money spent.
Yes, this post is just me complaining. I understand that there are people younger than me with worse health issues. I try to remind myself of that all the time. It could be worse. And most of the time I actually do have that cheery, lemonade outlook. However, right now, this week, I feel SO shitty that sometimes I can't maintain the cheerful attitude. I just can't. This week I am looking at the rest of humanity as if through a window; it's something I can't participate in. I just want to be able to work at my loom, or go for a run, or spend time with my husband, or help cook dinner and I can't right now and it sucks and I hate it. I do allow myself to get sad or mad or frustrated. I have to because, even though it could be worse, it still sucks. Plus my therapist has given me permission to be mad!
BUT... even after all that... there is a silver lining. I lay down in the afternoons especially and that happens to be when our cat is taking his afternoon cay nap. So I usually have some good company! Yay for cute cat pictures!