I’ve Been Tired

Or How I Stupidly Managed to Book Four Doctors’ Appoinments In Three Days This Week…

There was some concern over whether I might have sleep apnea that might be aggravating my fibromyalgia. I don’t sleep well. Never really have slept well. I’m a very light sleeper so I have to play a white noise app so little noises won’t continually wake me up all night. I use one with isochronic tones that’s meant to help induce sleep. I find it does help. I sleep better with than without and friends that I’ve recommended it to have said the same. Anyway, I digress… I was to do a sleep study at home. I had to pick up the equipment at the hospital Sunday night, learn how to hook it up and use it, and fill out and sign a bunch of paper work. I got no sleep with the equipment on. I was so afraid of rolling over that I would startle awake, I had a stuffy nose and couldn’t breath (which I made note of on the form), and a neighborhood dog howled all through the night. I woke up with dark circles and matching luggage under my eyes. That was appointment number one.

I’ve had a sinus infection that won’t leave. I’ve had it for weeks. Why don’t I take antibiotics? Well, those of you with autoimmune issues understand, you can’t always take antibiotics because our bodies already produce too many antibodies. It could make us worse instead of better in the long run so I have to be very careful about what I take antibiotics for. Thankfully, my doctor understands this and communicates with me. She asks whether I feel badly enough that I might need them or do I feel that I can ride it out. I love that we work together. I’ve never had a doctor like her before. She’s phenomenal. She was doctor appointment number two.

Later the same day, I went to appointment number three. My neurologist. Because my pain and my sleep had been getting worse he threw in yet another prescription into the pile. We shall see how this works. I really like my neurologist. I’m almost certain he’s an Aspy (Asperger’s Syndrome) like my son. I’ve gotten to know him over the years and now he’s more comfortable with me so he jokes around a bit and he’s wickedly clever. I appreciate humor. He’s also always been very compassionate with me and listened when no one else would. I really appreciate when people do that.

Today was my last appointment of the week. It was one of the doctors from disability to determine whether I’m fit or not. His work was psychometrics, so a lot of memorization and repeating things. I have no clue exactly what he was looking to determine so I have no idea how I did. I honestly was too tired and ill feeling to care. He even commented that I looked unwell, so maybe that was a good thing? No freaking clue.

I never really wanted to apply for disability. I cried for hours when I finally realized I had to because I simply could not work. My body would not let me. It was a very depressing realization. I like working. I felt useful and now I feel like a burden to everyone. They tell me I’m not, but it’s how I feel. I’m so used to taking care of everyone and I can’t do it anymore. I can barely take care of myself. A few doctors’ appointments completely wrecks me. I’ll be unable to function the rest of the week. This is my life now.

Sometimes a friend or family member will tell me to think positively, that things will get better, and I’ll want to scream. Because they won’t. Lately, more often, I just outright tell them that no I won’t get better so please stop telling me to get a better attitude, my attitude has nothing to do with it. I know they mean well but none of the things I have suddenly get cured. I only have one friend who totally gets it and only because she’s a spoonie like me. I don’t know if the denial is just an inability to accept what’s happening, but a lot of the time it feels like a lack of support. So I don’t talk too much about it and I’m careful about who I talk to. For my own sanity. I’m too tired emotionally to help people through my health crisis.

Need…coffee.

Welcome to Hell

Or How Am I Supposed to Survive Without Caffeine and Sugar?

For years now, I’ve been nagged by several doctors about my caffeine addiction. I know it’s bad for my fibromyalgia but how does one function when one isn’t able to open one’s eyes? Not to mention that I get pretty damn cranky when I’m tired and no one wants that. I’ve had people offer me Starbucks just to appease me, as if it were a virginal sacrifice to a sleep-deprived goddess.

When cortisol levels are wonky, as mine tend to be, you have to be careful about your sugar levels. You can easily tip over into diabetic territory, like my father did. Luckily, my blood sugar levels are decent, mostly thanks to my healthy diet, so I really don’t need to worry, but I still use stevia here and there to cut back a bit. I have to avoid corn completely, so no high fructose corn syrup for me. If I have to have a soda, I get the kind with cane sugar. It’s not healthier but I feel less sick at least. And Coke has a formulation with cane sugar and stevia in it, so I feel a bit less guilty drinking that. As you can tell, soda is a weakness of mine. Really, my only vice so my doctors can suck it.

Despite my addictions, I have been trying to cut out both lately. Again. I can cut out sugar relatively easily. That wasn’t so hard, surprisingly. The caffeine, however, is impossible. It cannot be done. I’m on painkillers and muscle relaxers on top of already feeling like I’ve gotten no sleep since my kids were born….19 years ago. I need caffeine. I know that it’s going to make me more jittery, prone to anxiety, and sensitive to pain but the alternative is me with a migraine, getting arrested because someone said something stupid and I hadn’t had a nap. I think, for the safety of all, it’s best if I have just a little tea or something to keep me going.

You’re welcome.

Malas and Mantras

Or Trying, With Some Help, to Inch My Way to Nirvana…

I’ve been trying to be a good little patient and lower my stress levels. Definitely not an easy task when you have two teenagers and health issues but I am an overachiever so I wouldn’t be me if I weren’t trying something ridiculously impossible. I’m okay with guided meditations…except when I relax so much that I fall asleep. That happens less often, but fibro naps sneak up on you when you least expect them. They’re like ninjas.

I was getting bored with the guided meditations and wanted to do my own thing but that’s not so easy with my brain. I’ll be all nice, relaxed, getting my zen on and then my brain is tapping me on the shoulder like, “Oh, hey! Um. Did you remember to set up that doctor’s appointment? Maybe you should write that down before you forget. Again.” Or, and I really love this one: “What was that noise? Was that in the kitchen? Who’s in the kitchen? Is someone messing up the kitchen? They better clean up after themselves or I swear I’ll kill…” And my zen is gone.

So I started using mantras and that seemed to help. You’re supposed to say the mantra 108 times. I’m not going to even pretend to know why. It’s some mystical Buddhist reason, I’m sure. I’d lose track of how many times I said my mantra so I would go with a time limit instead. But I found myself constantly peeking at the timer to see how far along I was on my time. Not peaceful. Not zen. So I’ve ordered some malas. Malas are prayer beads used for meditation. There are usually 108 beads, but there can be other amounts, and it helps you keep track of your mantras. I’m hoping this will keep me in the zone and focused. I can’t wait to get them in the mail! I’ll let you all know how they work for me.

No Degree Needed!