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. 

Mobile Home Living: One Year Later

A year ago we moved into a delightful little mobile home in a wonderful community (no, seriously, this place is awesome).

Overall, when we moved in the house was in good condition. It didn't need any repairs. Everything we have done has been primarily cosmetic, as the previous owner(s) had "interesting" taste. Pink floral wallpaper is not my idea of good design choices.

Our first major project was simple. Paint the living room. It had already been primed, so it was just a case of taping off the trim and picking a color! We went for a nice light-medium slate blue.

The second project was the bathroom. It started as an awful striped pink floral wallpaper. *shudders at the memory* We found a lovely medium green color (and one shade lighter for the bedroom when we get around to it). As I am a hater of faux gold, the knobs on the cabinets were quickly replaced.

In between project, we were able to replace the old, inefficient washer and dryer with a brand new washer and dryer (yay early Black Friday deal), as well as a new refrigerator we got a huge deal on as it was a floor model ($400 instead of $750!)

Our third project was to replace ALL the gold cabinet hardware throughout the house (see my post about 99centknobs.com and my post about how we got rid of the gold.). I told you, I really really really hate that fake gold! The new hardware made a huge difference in the kitchen.

Right now we are working on the spare bedroom, which is our hobby room (and the room the tree came through on Thanksgiving). It was painted a bright paleish yellow color, with a yellow and light blue wallpaper border. I found the exact grey color I was wanting on the mismatch shelf at Home Depot for $10! It was better than the paint chip sample I had selected. What I am looking forward to most is finally being able to bring home my 200+ Breyer model horses that I have collected since childhood. After the walls are painted, I'm going to get shelving put up around the perimeter of the room, about a foot from the ceiling to display my collection.

I'm looking forward to the warmer weather and seeing what grows in the garden. I planted some bulbs in the fall and it seems some are starting to grow. It'll be nice to see what comes up as I can't remember what I planted! We spent an entire day raking the storm debris and years of built up pine needles from the previous owner. Forty five bags later, we were almost done!

After a year, I am thrilled to be living here. I love our little mobile home!

Missing in Action

Sorry I have been a bit scarce around these parts lately. As I am between jobs at the moment, I thought I would take the opportunity to take a free 3 week class at my local community college to better my skills as an employee. The course is called WorkReady NH and it focuses on developing soft skills such as communication. It also gives you the opportunity to receive a National Career Readiness Certificate that shows your skills in Reading, Mathematics, and Locating Information. Both of these programs are designed to boost your resume.

The class takes up much of my day between the actual classroom hours and the minimum 5 hours I have to spend online a week preparing for the Certificate test at the end of the course.

In my now-limited spare time I am trying to restart my Hobo Cat Creations Etsy Store. I will be branching out from the cat toys I started with and including polymer clay figurines and hopefully Breyer and Schleich model horse tack and accessories. There is a good chance I may get to participate in my first craft show in June, so I definitely need to build up an inventory.

I have a couple blog entries in the works about getting "stuff" for free, and about life in the mobile home after a year and the improvements that we have made.

Stay tuned....class ends on the 27th so hopefully things will be back to normal and I will be back to having too much free time!

Review: 99centknobs.com

I LOVE Pinterest. Whoever came up with that site is an absolute genius! I have spent countless hours dreaming and planning. Being able to save all those ideas in one easy, organized area is perfect.

A couple weeks ago, a pin came across my board for 99centknobs.com. It was like Pinterest was reading my mind!. I have been trying to get rid of the fake gold that was all over the house for the past year. The cabinets were a large source of it. Between the old, discolored, broken hinges and those hideous gold and white cabinet pulls, it was time to update.  I had no idea how I was going to afford the replacements though. Then 99centknobs.com came into my life. Now, my kitchen, and all the other cabinets in the house are beautiful!

I was skeptical at first. What is the catch? How can they sell knobs for $0.99 when they are usually $2 to $5 a piece at the hardware stores? Are the knobs super cheaply made? Are the hinges going to fall apart in the first use? I tried to research reviews of 99centknobs.com with minimal success. Their BBB rating was good. There were no product reviews on their site, so it was a gamble. The only "expensive" part of my order was the shipping. They have flat rate shipping of $13.95, so if you only need a couple items, it's not really worth it, however if you need to order 27 pairs of hinges, 9 pulls, and 1 knob, then it is completely worth it. Those items are heavy!! (On a side note, I did order 20 pulls from Lowe's for the main part of the kitchen because I completely fell in love with the design, more about that in a future post.)

As I received some birthday money from my Grandma, I decided to use some of it to make this purchase. I was defiantly nervous as there was no information about this company. However, I was pleasantly surprised when 2 days later, my shipment arrived on my doorstep!

The pulls were very nice. They are slightly more grey in real life, but they are nice, solid and sturdy. I understand that computer monitors are not accurate in displaying colors. They did not include the screws, but I just reused the existing ones, so no big deal. Online, the hinges were listed as being manufactured by Liberty, and I found the identical product at Home Depot for three times the price (literally, listed for $2.98 per pair). I was very pleased to see that was the same product that I received. Everything was new in package.

I am thrilled with my purchase and would definitely recommend 99centknobs.com for large quantity knob, pull, and hinge purchases.

Sorry for the bad pic, but you get the idea!

(For the record, I did not receive anything in exchange for my review. I simply want to share this great company with you!
)

Tutorial: Scarf/Belt hanger

As I have been going through the entire house eliminating clutter and unnecessary items, I decided I wanted to make my closet just a little bit neater with a scarf/belt hanger. Money is tight, and while there are some very nice store bought options, I thought I would use some items I already had laying around the house.

SUPPLIES:
Hangers
Shower Curtain  Rings (cheap plastic ones are perfect)
Electrical Tape

Optional:
Yarn
Crochet Hook recommended on yarn
Yarn Needle


INSTRUCTIONS:

Step 1: Lay out the shower curtain hooks inside the hanger.


Step 2: Tape the Rings to the hanger and to each other. I found bring the tape up from underneath worked the best.

Optional:

Step 3: Single crochet around the outside perimeter of the hanger, going inside the rings when you get to them.  Don't crochet around all the rings in the center.

Step 4: Wrap yarn around the center rings. When you reach a section you have already wrapped, use your yarn needle to "tunnel" through it to the other side, then continue wrapping.

I made the crochet one for my belts. I felt that the yarn would help keep them from slipping.

For my scarves and pantyhose, I just used tape as I needed the items to slide and I did not want fibers from the yarn getting on my scarves.

On a side note, I used a belt hanger I had but didn't care for as a belt hanger to organize my tank tops. I am not much of a tank top person, but I have a few for layering. By using the belt hanger, I was able to free up precious space in my drawers.

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.

:'(