Temporary Hiatus

I'm sorry I haven't been posting much. Unfortunately, all this medical stuff is catching up with me and making even everyday tasks challenging. I have been on what seems to be a steady decline for the past year or so.

Turns out I have a bulging disc in my neck, which makes is very painful to sit for more than a short time (like 15 minutes...) especially to type on a computer, so blogging regularly has been kind of out of the question. I attempted physical therapy, but even they are at a loss of what to do with me. The medications the doctors tried seem to have no effect, I get better results from a combo of Tylenol/Advil. Unfortunately, my insurance doesn't like to cover medications either, so it really limits what the doctors are able to do for me.

It just sucks being "30" and being unable to do much of anything. I hate being a burden. I hate not having the energy to do even normal activities. I try to do things, but it just wipes me out so much it takes the next day to recover. I hate being broke all the time. This is not the sort of life I imagined myself living.

Day in the Life: Idiopathic Hypersomnia and Dizziness

I wanted to share with you what it is like to try and live with Idiopathic Hypersomnia and dizziness during a typical weekday day for me. Right now, I am unemployed and trying to figure out my future. I do have some medical evaluations that I am desperately hoping will help determine why the heck I am so dizzy, and determine exactly how severe my daily life is affected. 

How I describe what it feels like to have IH is to compare it to taking a sleeping pill or drowsy medication or stay up for over 24 hours and try to function. Add in the fact I often feel like the room is tipping to one side or the other, or often when I stand up I get lightheaded, often to the point of "blacking out" and losing my vision for a second, or just to the brink of that point. If I look around too much or at things that are moving, things start tipping. Although my heart has checked out ok so far, I have a rapid resting heart rate, and it skyrockets easily and often feels like it is pounding.  

More days than not I am dizzy. Sometimes lightheaded (like feeling like you are going to pass out), sometimes vertigo. I try to still get things done. Most days I don't want to drive. Unless I have an appointment I have to attend, I get nervous about driving just because I am dizzy or I just can't keep my eyes open anymore, at the same time I have struggled for years, so I know I am not actually a danger, and in my own car I can easily pull over. It's to the point 1/2 hour is intimidating, and an hour is very nerve-wracking. I just don't want to make a bad choice and hurt someone. Even going to the store has become a problem, just looking around shopping will make my dizziness intensify. Looking around makes me feel like the world is spinning very fast. I can easily become unbalanced and feel like I will tip over. I avoid aisles with fragile items, especially in antique shops. Forget about stair cases, especially ones that are open in a tight space. But if I am out and about, I try to get everything done in that one trip so I won't have to go at another time. 

Somedays, like today, I even have trouble focusing, not only my eyes focusing on the page, but my brain focusing on the task at hand. I forget why I went into a room, so I leave, remember,  go back to the room only to forget again!! I'll look up the date, sign a paper, then have to look the date up again for next sheet! From what I have read, it is called "brain fog" and is part of having IH. As I said, you can describe IH as how you feel if you stay up 24-48 hours in a row. I have never been drunk, but the slowed reaction times and forgetfulness and all can probably be compared to that as well. 

MY DAY

Between 7:00AM and 8:00AM- "Wake up" well, that's what is supposed to happen for most people. My eyes will open and I will be in a semi alert state. I sync my Fitbit Charge HR to see how I slept. Sometimes, I end up falling back asleep while it is doing that. Then I check my Timehop, Instagram feed, email, and Facebook, once again, sometimes falling back asleep. It is incredibly hard to keep my eyes open.  I am just as tired, if not moreso in the morning after a decent night's sleep as I am when I go to bed. I have absolutely no idea what it feels like to be refreshed when I wake up. It has never happened in my entire life. Ever. 

I have had two overnight sleep studies, both showing absolutely no reason for me to not be rested. No apnea, no excessive movement. Nothing. Just a basically normal sleep pattern. 

9:00AM- To try and stay in a "healthy" routine, I force myself out of bed. I get up, make my iced coffee and take my medicine, which is a handful of vitamins, one I am deficient in, and several others that are supposed to help with energy and two prescriptions, one to try and make me happy, one to try and keep me awake for the day. Usually I sit down on the computer. Do a little job searching, follow up with any email, things like that while I have my coffee and let the wake-up meds kick in. 

10:00AM- Noon- I try to get on with the day and do something productive.   A couple weeks ago I was full out making model horse props in preparation for my first vendor experience (I will go into more detail in another post about that hobby of mine I'm trying to turn into a successful "business".) Yesterday I worked on a commission T-Shirt design for a friend (which btw came out great!). Somedays it's just chores around the house. I'm very slowly learning how to be a better housemate. Sadly, it took making a chore chart for myself and forcing myself to pay more attention to my surroundings. I have an awful tendency to not notice things until they become glaringly obvious, like chunks of cat fur on the carpet...or the strainer full of clean, dry dishes. 

Noonish: Lunch time. Usually a short text conversation with the boyfriend. The hardest thing is trying to decide what to eat. These days as I don't do a whole lot, I'm usually not hungry, but if I don't eat I will feel even worse. I will either turn into a super mega crazy bitch or become extremely weak and dizzy. 

1:00-4:00PM - I try to continue to do something productive, chores, work on my Etsy shop inventory,  do something, anything. My thought is if I can try to stay busy then maybe my symptoms won't be so noticeable. Nope. No such luck. Sometimes I just can't, especially when the dizziness is bad. I have to give up and sit on the couch and try to watch TV. By 3:00PM I am usually struggling to keep my eyes open. I try not to give in as if I were to take a nap, I just feel worse afterwards. Other times, I just have to close my eyes if I have any hope of continuing the day. I can at least reset the severe desire to close my eyes. 

4:00PM - 6:00PM - By now, the boyfriend is usually home. I am trying to be more open to leaving the house and going for a motorcycle ride (as a passenger!) or doing basically anything besides sitting on the couch and watching mindless TV. He is just not that kind of guy, and I don't blame him. But I have to struggle to do anything. At this point, all I feel like doing is laying down and sleeping. I am trying though, and I notice we are closer and happier. He shouldn't have to suffer from my condition as well and miss out on living. Luckily he does understand I have no control over how I am feeling, and has been really great as the severity has increased in the past year. 

6:00 to 8:00 PM - Usually my best time if I get to have a break from my symptoms. Happens maybe twice a week. The dizziness will subside, and I won't be falling asleep. It doesn't last long or happen too often, so it's a nice break. I guess it is closer to how a "normal" person feels? 

8:00-10:00 PM- Right back to the normal dizzy/sleepy feeling. Watching TV then it's bedtime. I usually have no trouble falling right to sleep. 

Then it's morning and the whole cycle of misery starts over again. 

I'll cry if I want to...

Some say turning 30 is a big deal. It's the start of a new decade of your life. You have officially been an adult for 10 years. I fail to see the significance. Age is just a number to me. It means nothing. Supposedly these are the best years of my life.

Part of my life is going great. I have an amazing boyfriend who always makes me laugh even when I don't want to and has been extremely supportive throughout this awful time in my life. We have a beautiful little mobile home that we are slowly making our own. I wouldn't trade him or our life together for anything.

The rest of my life is not, and runs the risk of jeopardizing the only thing going well. He deserves so much better, someone who can keep up.

Ninety nine point nine percent of mornings when I wake up, I feel like crap. The Idiopathic Hypersomnia causes me to never feel rested, no matter how I much or how long I sleep. I get dizzy randomly for no apparent reason. Don't even get me started with my digestive system. If I don't eat regularly, I get either crazy angry or weak and shaky. Everyone else I know has no problem if they skip a meal once in a while. Of course, when I go to the doctor, all my test results are normal. I even made a real effort to start exercising. No improvement. On paper I am technically healthy, so why the *explicative* don't I feel it?

I am terrified as I feel so awful all the time that I will never be able to enjoy life; that feeling so awful day in and day out will never improve. I was hoping finally getting a diagnosis would help get me back on track, but the medication causes just as many problems as it solves. Is it better to be tired and sleepy all the time or dizzy and anxious?  I can't live with either of those. I want to function.

I'm trying to find a job. I want to be able to pay off my debt, contribute my share to the household, and be a productive member of society. I don't want to be a leech. The job search is going awful. There are plenty of local jobs I've applied to, but they always want someone with experience. Who's going to hire someone who used to drive a school bus and had to stop because they have a medical condition?

I just want to have more days where I feel good than days I feel bad. Is that really too much to ask? I can't keep going on like this. I don't know what to do anymore. Lately all I feel like doing is crying, but that won't solve anything either.

:'(

Idiopathic Hypersomnia: Journey to a Diagnosis

I had been a school bus driver for the past 7 years. On Friday, I was informed by my boss and human resources that I was to resign my position due to my recent diagnosis of Idiopathic Hypersomnia (IH) and my admitting to symptoms that could be dangerous; mainly the excessive daytime sleepiness. I was shocked and devastated. I knew my time as a bus driver was coming to an end, I needed more steady/stable hours, and the long days were really taxing on me. It was a daily struggle.  That day I was devastated. I had lost my job. Due to the reasons I had to resign my other bus driving job at the local city bus company. My DOT medical card was no longer valid without my neurologist signing off. I spent a lot of time thinking, and talking to my wonderful, supportive boyfriend, and came to the decision that maybe this wasn't such a bad thing to happen. I could not have lived with myself if I had ever hurt someone else because I was too sleepy to be driving a bus.

So what is this condition that ruined my career? Idiopathic Hypersomnia. Two big words that basically mean no matter how much sleep I get overnight, I do not feel rested or refreshed, and I can be insanely sleepy during the day. As far back as I can remember, I have been a tired person. This past summer, things really started to deteriorate. I was falling asleep as a passenger on a motorcycle. Not a good situation. It was time to dig into why I am 29 years old and completely exhausted all the time no matter how much sleep I got at night.

I went to my primary care doctor. They tested my blood, they tested my brain, they tested just about everything there is to test non-invasively. I had low Vitamin D levels. Even after a supplement and recheck, there was no change in my symptoms. I was finally referred to a sleep neurologist who ordered an overnight sleep study. All those wires later and an uncomfortable night in a comfortable Sleep Number bed (totally check those out, I would get one if I didn't have my awesome memory foam bed!) I got more normal test results. At this point when I hear "Everything came back normal" I want to cry. Something had to be causing my exhaustion. I had even tried going to a endocrinologist. She was awesome, she did in depth thyroid testing, adrenal and pituitary testing as well. Normal. I think I did cry after those results.

The sleep neurologist decided to redo my sleep study and follow it with a Multiple Sleep Latency Test (MSLT). More strange medical words. The MSLT follows an overnight sleep study so they can make sure you get a decent amount of sleep the night before. You are then left in a room all day (I had wifi and cable TV), given a nap opportunity every 2 hours for a total of 5 naps. The time it takes you to fall asleep and the level of sleep you reach in the timeframe is what helps determine your diagnosis. I fell asleep in all of the naps in an average of 6 minutes, after a "normal" night's sleep. See, I am not actually crazy, well at least in that aspect, I am THAT tired. Could you sleep a full night then fall sleep 5x during the day?

Eventually, I got my diagnosis of Idiopathic Hypersomnia because they ruled out basically everything else that could cause me to be so tired and unrefreshed. I did not have sleep apnea, I did not have narcolepsy. I did not have any "common" sleep disorders. I am just plain exhausted for no reason the doctor can find. There is no cure and no FDA approved medications. There are medications that I can be prescribed to promote daytime wakefulness. I am now trying a second one as the first one did not work and actually made me feel worse than just sleepy.

Now I am a state of limbo. I have applied for nearly 20 jobs and the only thing I ever hear is someone else was selected. I'm waiting to find out if I get unemployment, which I hate to do, but I have to have something for income, I have bills. Everyday now I sit home, filling with anxiety about those bills and not having the income or the savings to pay for them. I have decent credit, I don't want to ruin it. I am so lost, so hopeless. Right now it feels like I am completely and permanently screwed. When I apply to jobs I have to put down why I left my previous job, if I put down financial gain, why would I quit before I had anything else? If I put down medical, they will automatically think I am sick all the time and miss work (which I don't do).

Idiopathic Hypersomnia sucks.

Getting out of bed...

If you do not have to go to work, or have an appointment, or really anything to do, what gets you out of bed at a decent time?

For me, I can't seem to find any reason to get out of the bed unless I have work or an appointment. I will go to sleep at 10pm and wake up between 8am and 10am. Maybe I'll change out of my PJs into comfy clothes, but I am still in bed. I give the cat their meds (yes, for the next week both kitties are on meds...one oral syringe, the other ointment in the ear) but then back laying down on the bed. I watch TV.  I make a simple lunch which I then proceed to eat, you guessed it, in bed, laying down. I then lay in bed and watch TV until its time to go to work. I don;t even bother to get one of the dozen DVDs I have yet to watch, I just watch whatever show is on reruns that I feel like watching. Mindless stupid TV. I procrastinate any chores until the last minute and they only get done if assigned on the "chore board" I had him set up for me.

 I go to work. I feel ok, I enjoy my job. I'm lazy and don't walk any further than I have to most days, I have often called the office from the bus in the yard rather than walk back to the office (it's really not that far). I drive my bus, rarely do I get out of the seat unless forced to by a needy passenger or to assist a wheelchair passenger. Doesn't matter if the shift is 2 hours or 8 hours...I don't move unless I have to.

I am thinking, well I know, this is definately not a healthy way to live. Luckily, I don't just lay here and eat a bunch of food all day, I stick with lunch and dinner and maybe a snack for breakfast. But I don't move.

But how do I get out of bed? I have no where to go. Nothing appeals to me other than laying here. I am most comfortable laying down. I actually struggle to eat at home sitting on the table. My husband eats like a human at the desk, and I eat like I don;t even know, laying down in bed. It's pathetic. People my age should want to get out and do things. My new schedule has made this issue even worse as I usually don't go to work until after 3pm and am home again by 7pm. I don't feel like i have time to do anything before work, when I actually have hours, especially if I got my lazy ass out of bed.

I have been diagnosed with depression, and I am on a new medication which has made my relationship better and me more level with my mood. However it has not gotten my lazy ass motivated to get out of bed.

I dunno what to do. It's a pathetic, unhealthy existence.

Exhaustion

I like sleep, a lot. Actually I love sleep. Lately, it is all I want to do. When I wake up in the morning, I can't wait until bedtime, so I can go to sleep. I don't know why I like sleep so much, it doesn't make me feel better. I am completely exhausted all the time. It's not right.

I sleep all night. If I don't have to go to work I often sleep 10-12 hours. I wake up tired. If I sleep 8-10 hours, I wake up tired. I don't really snore, I do toss and turn. I am a heavy sleeper. We like to joke a bomb could go off and I would sleep through it. The fiancé goes to work early in the morning (between 2am to 3:45am) and I sleep right through it almost every night.

I never used to nap, now it seems I nap all the time, any chance I get. Anywhere from 15 minutes to 2 hours. They rarely help me feel better, usually I just get dizzy and crappy feeling. I am drowsy when I shouldn't be. My caffeine addiction is getting worse because I am trying to combat this constant tiredness. The caffeine doesn't really help much anymore. The drowsiness is a very persistent enemy. There seems to be nothing that can make it go away or prevent it.

Ugh. It is very frustrating.