Symptoms, Thoughts, Uncategorized

Sleep Sucks

I’m not sleeping. When I get to sleep “early,” I sleep at 11:30. A normal night is 1:30 or 2 am. Then I have to get up at 7 or so, and start my day. I go through my whole day exhausted, until about 10 pm, at which time I’m practically wide awake and don’t want anything to do with sleep.

I’ve. Tried. Everything.

I’ve stopped drinking caffeine after 4 pm.

I don’t take naps during the day, hoping that will help me sleep.

I get up early to do things, and make sure I keep doing things all day.

And

Nothing

Works.

I’m still not sleeping until around 1:30 or 2 am. I don’t really even know what to do at this point. Even Benadryl, which usually makes me so sleepy I literally cannot stay awake, doesn’t help me sleep. If anything, I actually feel more like crap the next day after taking it.

So, I’m at a loss. And I started googling to see if my exhaustion, and my sleeplessness is related to the ankylosing spondylitis, and found a study that seemed to conclude that fatigue is in fact related to AS. The study was, of course, comprised of all men, so I’m not sure what that means for me. Am I just some strange genetic anomaly? I have AS, but it’s as severe for me as it is for a man, even though I should be better off. My sister had problems with iritis, but never really followed up on anything. It’s possible she suffers from the same stuff, too, but she self-medicates so heavily that maybe it just doesn’t bug her anymore than her hangovers do. So where that leaves me, I don’t know. I feel like I’m in limbo, and it’s still another week before I see my primary care doctor and who knows how long after that before I finally see a rheumatologist. Hopefully it will be a quick referral.

Fingers crossed.

Thoughts

Thoughts on Experiences and How They Shape Us

Waking up every day is like a game of “What’s going to ache today?” It takes me a few minutes every morning to assess my body, my pain levels, and where the pain is coming from. Even if I had an achey shoulder for the last two days, I can wake up with knees that ache today, and a shoulder that feels perfectly fine. The one constant from day to day is my hips. Sometimes they don’t hurt much, sometimes the pain is so bad I’m not sure how to get out of bed in the morning, but there is almost always some pain in my hips.

I’ve been thinking a lot lately about how your environment can determine, to some extent, how you handle a chronic illness. I grew up with two parents who have always had some kind of illness. My dad has reactive arthritis, and my mom has multiple problems because she had cancer twice as a teenager. So I’m used to being around people who maybe can’t do as much. It’s been my life for the last ten years to take care of my little sister as much as possible because my parents can’t do as much. My dad hasn’t been able to drive since before she was born. So when I was diagnosed, I was already prepared to handle it. I immediately started forming a plan, and I knew I could live a rich life even with this diagnosis.

My boyfriend, however, having grown up with two healthy parents, freaked out. He was worried I would eventually go legally blind, like my dad (my dad is only legally blind because the doctors treated him wrong). He’s worried about me being able to walk (apparently, limping through the hospital going slowly so my hip doesn’t lock up doesn’t actually count as walking. I think it’s walking as long as I’m moving forward on my own feet under my own power). He doesn’t know what to do, he doesn’t know how to help, and he is freaking out about me probably being like this for the rest of my life. I realized it scares him so much because he has never really had to deal with this kind of thing before. In my house, illness is constant. Mom has diabetes, high blood pressure, high heart rate, a history of cancer, had 2 separate mastectomies. My dad has glaucoma, is legally blind, often aches in his back and hips. The worst at my boyfriend’s house is his mom’s allergies. He doesn’t know what to do with me.

Realizing this has helped a lot. Now I know I need to explain everything to him. I need to tell him the things I think of as being obvious. And it’s helped. He’s understanding more. And it’s better for us when I can remember to explain things so he understands. I’m not saying that you should always explain everything to everyone; strangers don’t have any right to question you about how you feel or why you’re limping. I do think though that it helps me personally to keep in mind that my boyfriend does need things explained so I don’t assume he knows what I’m going through and that he understands everything without me having to tell him. I won’t be extending this courtesy to everyone, but for him, I don’t mind doing it.

Thoughts

My Initial Thoughts

The iritis specialist I have been seeing has diagnosed me with Ankylosing Spondylitis. It’s kind of scary, to be honest. It’s an autoimmune disease that can cause inflammation pretty much everywhere: hips, back, neck, shoulders, eyes, skin, bowels….it’s a long list. It’s also degenerative, so it will get worse as time goes on. Supposedly, the symptoms are more mild in women. This is not the case for me. My pain is so constant, when the doctors ask me how much pain I’m in, I have to concentrate on my body to see if I’m actually feeling any pain, and my dad has still occasionally told me that I am probably underselling how much pain I actually have. When the pain is really bad, I can’t even get out of bed. Not in a “I’m in so much pain I don’t want to do anything” way, but in a “I can’t even make my body do the necessary movements to actually get out of bed” way.

Thanks to the internet, I’ve found out that I can help control inflammation with a low starch/low sugar diet. I write this with a desk covered in various types of junk food, including Doritos and Chips Ahoy. I’m gonna miss Doritos and Chips Ahoy.

But I want the inflammation to go away. I’m so damned tired of being in pain all the fucking time. It’s old. Even with 800 mg of ibuprofen 3x per day, I’m still in constant pain. That’s not how I want to live.

I think one of the most “fun” symptoms is the pain in my leg that makes my leg fail at walking. Have you ever had that feeling when you step off a curb you didn’t know was there? My legs do that to me, on their own, while walking across a flat surface. Sometimes, it’s so bad I almost fall. It has happened so often, I have a name for it: glitching (this came from me telling my boyfriend that it feels the way a Skyrim glitch looks).

And this has been happening to me almost constantly for 2 years. My doctor initially diagnosed me with sciatica and sent me to physical therapy. She didn’t look into why I might be experiencing sciatica, or why my back would be showing signs of arthritis at 25/26 years old. She told me to lose weight. Yes, being overweight and having an unhealthy diet can make symptoms and inflammation worse. I would think, however, that having a patient show arthritis at a young age would make you consider whether there might be something else at play. I’m not seeing that doctor anymore.