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. 

This Whole NFL Deflategate Debacle

Let me start out by saying I am not a fan of professional sports (unless they are equestrian related). I hate baseball and basketball. I can tolerate football, but only NFL, and only because of the video game Madden 64 for teaching me how the game works. I live in NH, so the "home team" is the New England Patriots. 

As you all know at this point unless you have been living under a rock as it is all over the news, the Patriots were involved in a "scandal" about using deflated footballs in the playoffs. Supposedly, less air makes the ball easier to grip, I'm not sure, I know there were scientific studies done, because there aren;t more important things like cancer research that could be done...</sarcasm>. 

I was hoping it wasn't true, that a team as big and popular as the Patriots would not be cheaters. As it turns out, they were and the quarterback was aware of it. The quarterback that women seem to worship for some reason, I just don't see it, but whatever. To each their own. I know he is a very talented quarterback, and the fact that he cheated is despicable, when he has proven to have the skills to get the job done the right way. 

From my understanding of recent events, he was suspended without pay (boo hoo, not like he doesn't already have millions) for 4 games. Ok. That actually seems like a fitting punishment. He cheated, he was aware of the cheating, he deserves to be punished. I honestly would make him sit out the season, but that's just me. 

There is the graphic I posted to the left that shows other football players and their criminal charges. I realize in the grand scheme of things that cheating compared to physically hurting someone is a lot less severe in the grand scheme of things, but it is still wrong! Cheaters never win, well except in this case when they get some bragging rights, a pretty ring and a trophy...but as far as I know, the actual Super Bowl was played by the rules and was a good game. Had they not cheated in the playoffs, who knows? But they are a very talented team with skilled players, so they likely would have made it there anyways. 

My issue comes with where people are crying about how it's not fair that Brady was punished for cheating. HE CHEATED!

As for these other criminal players who have physically hurt another person or animal, they should not be allowed back into the NFL.

 I was driving the bus one day and the elementary kids were talking about football, there were only a couple left at the end of the route. One boy said that he thought Michael Vick was an awesome player. First, I had to ask if Michael Vick was currently playing, because I couldn't believe he would be allowed back after hurting those poor dogs. Then,  I had to put my two cents in and asked the boy if he knew what Michael Vick had done. I explained in a very simple sense that he had hurt dogs (this is elementary school mind you, so I didn't want to say too much). The boy said that was in the past and he thought that Michael Vick had a lot of skill on the football field, so I agreed to that, he may be a very talented player, but he is not a good person. Anyways, I was completely disgusted that Michael Vick was playing football again, making millions of dollars again after causing so much pain and suffering to those precious dogs. He should be in jail and never allowed in the NFL again. Sorry, that is just how I feel. He hurt helpless animals. 

The NFL needs to get their act together. So many young people look up to these "superhero" sports professionals as role models. They need to make sure that the punishment fits the crime. If a NFL player is convicted of any crime against a human or animal, they should never set foot on the field as a member of a team again. If they cheat, like Tom Brady did, then they should get a significant suspension, one that will hit them where it hurts, in their bank accounts. They should also have to talk to students about why what they did was a mistake. 

Let's hope some good comes from all this.