((I'm gonna get to one more thing tonight but I gotta go to bed sfdkjfd - I do want to write more, but I have two days off after tomorrow so hopefully I'll get some more done then!

My sleep schedule is flipped and I now sleep from 5 am to 1pm and I'm starting to blame my vampire F/O because I see no other reason! >:( I actually don't know what to do to flip it back, I've tried to sleep earlier and wind up sleeping like 12 hrs ;_; I have my last virtual class at 10 am today (it's 2 am now) and I think I'm going to have to stay awake LOL I'm going to bite my F/O for this - 💎

On topic with my sleep schedule oopsie, do you or any of your F/Os ever face this issue? How do you deal with that? Does one of you force the other to sleep or to wake the other early? - 💎

oh it’s GOTTA be the vampire F/O’s influence !!! no doubt about it!!!  i hope that trying to stay awake until your class helped at least a little bit and hopefully you’ll be able to get back to normal SOON !!! or else you’ll be stuck in this nocturnal phase with your F/O... which. actually. seems like it would be kind of cool? SO. I DON’T KNOW. I JUST HOPE THAT THINGS GET BETTER FOR YOU !!!!! 💗

i face this issue all the TIME so i am WITH YOU !!! i don’t remember a time where i had a completely normal sleep schedule... like even now i wake up at a normal human time because i have work but i still end up staying up too late and then dozing off in the afternoon so like. maybe i am just destined to be like this. but! it’s ok!!! sometimes Bucky deals with the same thing! sometimes he’ll have a hard night and he won’t be able to sleep, even if he has to be up in the morning! and the two of us have learned to roll with it!!!

sometimes we’ll just get a few hours of sleep in a night, and it will. not be very fun. but it is what it is! and a few hours of sleep is sometimes (usually) better than none, so we take what we can get! and then we rest when we need to! i love a good nap. and i love a good nap with BUCKY. so if we didn’t get a whole lot of rest, i’ll give him the puppy dog eyes and i’ll make him lay down with me. i used to really try to get a rigid and fairly normal sleep schedule but! for now! i just do what i can and it works! maybe one day in the future i’ll be better but! it is what it is and i try not to beat myself up about it !!! 💗

I'm here to tell a story

"Go blow your nose, Tiffanie. Your sniffling is getting annoying." This is something I grew up hearing on a daily basis. "But I don't have to blow my nose." That was nearly always my response. But what did I end up doing? Blowing my nose anyway. My nose would be red and dry from trying so hard to blow out what was never in there to begin with. This was the start of my journey with Tourette's Syndrome. On the outside I look pretty normal, if you look past the purple hair. But as a kid, there were never any major signs that anything was wrong. I sniffed a lot, I blinked a lot, but I also had allergies so that's what we assumed it was. However, there were other things that I was experiencing that were connected to Tourette's Syndrome that I had no idea about. Anxiety. Depression. Ocd. Sleep problems. Migraines. Sensory issues. Things that plagued my existence for as long as I can remember, that left me wondering why I was on this earth if all I was doing was suffering. Then in high school, things got worse. One night, I woke up to go to the bathroom but I couldn't walk. Now, any normal person would be alarmed by this and call for help. But I guess I'm not normal because I remained calm and dragged myself there instead. I then proceeded to drag myself back to bed. My mother took me to the emergency room where they told me I was just exhausted, gave me some aspirin and told me to get some rest. Later on, I noticed my head was moving like a bobble head would, but I wasn't doing it on purpose. I also couldn't stop it. I pointed it out to my mom, and she thought I was just trying to find another reason to get out of school. Eventually it stopped and I went back to doing my thing. After two years, my head started to move on it's own again, but this time it was different. I was making noises too. What I thought was just the chills was happening way too frequently for it to be just that. So again, I mentioned it to my parents. It wasn't until they physically saw it happen that they admitted something was out of the ordinary. So, I went to a neurologist and received my diagnosis. Usually Tourette's patients are diagnosed early on, but not I. I was 17 when I found out, and as soon as I had a name for it I did all the research I could to better understand what was going on with my body. Guess what. There isn't that much information about Tourette's Syndrome. And a lot of what was advertised about it was cursing. That tic, thankfully, I do not have. So I continued on with my life, deciding that since it was only a little uncomfortable and not debilitating that it was no big deal. Well, I didn't know it then, but I was wrong. College came, and with it the excitement of becoming an adult- responsiblity, independence, and freedom. I got good grades, I socialized to the best of my ability, I even did open mics and writing contests. For a while I was happy, and my tics were pretty tame. But like an avalanche, they started to form faster and faster with no regard to the environment being disturbed because of it. At the beginning of my senior year, I had to leave school because I couldn't concentrate, I was in pain from my body's constant movement that I couldn't control, and I also lost my ability to walk right again. So, back to the neurologist I went. Except this time, it was a different doctor. According to her, I should have been put on medication as soon as I was diagnosed to prevent it from getting out of control. Too bad my previous doctor didn't give me that advice. Grudgingly, I decided to take the medicine because I figured it would be better to try that out than to let it go untreated. The following months were filled with cold sweats, dizziness, even worse migraines than before, and the inability to sleep less than 12 hours a night without crying upon being awakened. It was safe to say this medication was adding on to my problems. I was switched to a different medication, and the results were much better. I started to feel hopeful again, especially since I was also going to therapy. I didn't go back to school yet, but I did go back to work. Oddly enough, it seems that every time things are starting to look up for me, I somehow hit another setback. That's exactly what happened. My body started to feel weaker, I was on edge. I knew that the storm was coming. Now 22, my tics can no longer be passed off as allergy symptoms. They result in me hitting myself, banging into things around me, making loud repetitive noises, clapping over and over again, and even falling to the floor. I spend hours having tics that prevent me from eating, drinking, or walking a few feet to the bathroom. I watch my mom rush to my side as my body shakes and jerks every which way, tears in her eyes because she doesn't know how to help me. She says it looks like I'm having a seizure. So much for the independence and freedom I mentioned earlier. This is my reality. This is what I live with every day, and will continue to deal with for the rest of my life. There is no cure. Only treatments and the hope that the tics will somehow improve. Once upon a time, I was an honors student. I would commute every day to another borough to make sure I could get my degree. Now, I'm lucky if I can even leave my apartment. Not a lot of people understand the impact Tourette's has on me, because not a lot of people really understand what it is. When I tell people I have it, they tell me I'll get better. Just try. Be positive. And that's probably the least motivational or inspirational thing you can tell someone like me, because I have absolutely no control over my body and this is a chronic disease. I'm not going to wake up one day and magically be better. So far it's only gotten worse. That's really hard for me to say because it sounds so negative. I'm used to feeling negative, but I'm not used to admitting it. When you have as many problems as I do, you learn to sweep things under the rug for the comfort of others, all while you decay little by little on the inside. On the rare occasion you do decide to open up to people, and you tell them that their advice isn't helpful, automatically you're made to seem like you just don't want to get better. That you make excuses. The thing is, all the stuff people tell me to do, I've tried already. I've known about my condition for six years now, so believe me, I have tried. My brain doesn't function properly and my body doesn't either, so at this point I sort of just sit there and think, did I miss anything? Maybe if I push myself to do this, it'll be okay. There goes the sound of the engine backfiring. Now I'm back at square one, stuck in bed because I pushed myself too hard and my body is convulsing again. I'm not a doctor, but I'm pretty sure Advil wasn't meant to be taken every day. Yet with the amount of pain I'm in, that is what life's looking like right now. Pill after pill, tic after tic, bruise after bruise. This is my life. It is not an easy one. But unfortunately it's the only one I've got. So I guess I've just gotta keep tic'n.