I have an appointment later today with my neurologist. I am excited about this because this is the longest I have gone without a seizure.
Today was a chill day. I hurt too bad to continue moving. I slept most of the day. Probably has part to do with the low calories or maybe the shitty diet? Or could be because I sometimes can’t stay awake.
I also think it has to do with the way I am eating. In order to get enough calories each day I am eating like crap.
So, starting tomorrow, I am going to eat how I want to eat and not worry so much about calories.
Stop worrying about calories
If the doctors are that worried about my diet, they can come to my house and fix my meals… or, I dunno, listen to me and figure out why I have no appetite.
Sorry I haven’t updated about the sleep study yet. Staying awake so long actually threw me off my schedule pretty bad. I keep thinking it is Wednesday because I lost a day somewhere. I’ll pick up on Wordless Wednesday next week.
Anyway, I did get to do the sleep study this time. When I got there, I had a one hour nap (maybe) in 28 hours somewhere in the afternoon. I couldn’t stay awake anymore. I thought I would sleep well but by the time I got to the hospital, I was wide awake and wired for sound.Continue reading →
Holy crap! Where did my time go? I swear I slept most of August. I think it’s mostly because of the heat. I got hot and then I start itching. Once the itching starts, I start to feel like my skin is burning… like someone poured acid over my skin. Then I get cooled down and I am just EXHAUSTED! I don’t mean “a little tired but coffee will keep me going.” I mean “Night ya’ll! See you when I wake up which will probably be two days from now!”
I spoke to the doctor about it. She is still new to me so she is still learning about me. She mentioned my medicines all can cause “drowsiness”, so I may just be tired. When she thinks of “tired” she thinks I am slogging along, drinking extra coffee, propping my eyelids open with toothpicks, and moving slowly through the house getting things done.
She pictures this…
But I am actually functioning more like this…
I started logging my sleep on my android phone using the sleepbot app to better explain this to my doctor. First, I have done this sleep thing for years, before moving to Montana, before sleep apnea, before all the medications, before anything drastic happened in my life. I’ve done this since I was 16 years old. Yep, I have done this for 23 years. I happened to get mono from my boyfriend. My mom knew something was wrong when she couldn’t wake me and keep me conscious. I slept for a week… or so. I don’t remember. It slowly got better and I went from 23 hours of sleep a day (not kidding) to a more normal sleep cycle of 10 hours sleep a day.
Well, I told the boys to not wake me during the last cycle and explained I was trying to document the erratic sleep cycles I have. So, My oldest son (who is an adult) took over and I just logged sleep. Here are some of the more impressive ones from my sleep log…
13 August: 14.4 hours of sleep.
14 August: 18.4 hours of sleep.
15 August: 14.1 hours of sleep.
16 August:23.2 hoursof sleep.
17 August: 15.1 hours
18 August: 3 hours. Yes, that is three. I am not missing a one.
19 August: No sleep
20 August: 25.8 hours asleep. TWENTY-FIVE!
21 August: 11.7 hours of sleep… not counting the 1.8 from the day before.
22 August: No Sleep.
23 August: 20.1 hours of sleep
24 August: 14 hours of sleep
25 August (my birthday): 7.1 hours of sleep.
It was that week of my birthday where I started coming out of the sleeping beauty phase and now I am sleeping more normal amounts of time again. Usually my sleep is between seven and ten hours. On days I take all my medication, it could be a 12 or 14 hour sleep day. Even without medicines, this has been my life for years. But the roller coaster sleeps that I get, it could be no sleep to three or four days of sleep. Although, I do set alarms to try to wake me. That doesn’t work though. AND I am a moody, starving, irritable person when I am awake. I try really hard to not be mean but I just can’t help it.
BUT, I don’t have chronic fatigue… says a long string of doctors I have gone to throughout the years.
This doctor though, believes I have Fibromyalgia. All of my symptoms suggest Fibromyalgia. Although, the sleeping beauty roller coaster ride I go through is a touch extreme. She is sending me to a Rheumatologist to make sure we didn’t miss anything. I like this doctor!
So, now that I am functioning more and awake, I will be updating more. I’ll try to remember to post if I am heading into a cycle so you guys don’t think I just fell off the planet. Sorry about that, Java.
I was hurting so bad the last few days that I could barely function. Today I finally broke down and took a muscle relaxer. I didn’t need it for my muscles though, I needed it so I could get some much needed sleep. It worked! I got 4 hours a sleep which has helped my mood wonderfully.