Must Stay Awake…

Today I tried something new with my sleep schedule. I have always struggled with getting to bed at a decent time, but lately it’s been worse than ever. It’s a rare and good day if I’m up by 3:30 (I can’t believe I’m admitting that on the internet). Lately I’ve been waking up closer to 8 at night. Part of it is because after 11 at night seems to be the only time I feel decent and I hate cutting back on that “good” time.  Part is because depression gives me the worst feelings of fear and loneliness when I try to sleep and I prefer to wait until someone else is awake so I feel safer and less alone. And part of it is so I can avoid my brother.  I hate admitting it, but it’s true. I’ve had a brother for almost a year now – my family chose to adopt a 14 year old. It’s been a real struggle due to his behavior and angry outbursts. He’s a good kid and I really want to be a good big sister to him, but it’s so hard. I feel like I can never say or do the right thing when I’m with him. It always ends with him getting mad or storming off or pouting. I know it’s selfish, but I feel like I have so little to give right now as I struggle to handle college part time with my health. Every encounter with him drains my energy. I just kind of gave up and started not leaving my room for the day until 9:30, when he goes to bed.

But I want to change. My current schedule is not good for my health or my family. Sometimes it seems impossible, because I feel like my narcolepsy controls me. I often spend hours at night trying to sleep to no avail, and entire days where I’m literally “stuck” asleep. I woke up for the day at 10:30 Sunday night, frustrated and angry with myself since I had planned to spend the day studying for a physiology test due the next day. I pulled an all-nighter in preparation and, instead of crashing in bed once the test was over like usual, I decided to try something new. My sleep doctor had the suggestion of falling asleep an hour later every night until I circled the clock and got to a decent time for bed. This seemed way too difficult to achieve, but I thought starting when my body was already completely screwed up would make it easier. After my all-nighter, I had my test and then therapy and didn’t get home until 4. I then ate “dinner”, got ready for bed, and took my sleeping pills. It felt REALLY strange, especially right after daylight savings, but waking up at 7:45 this morning with no alarm was incredible!

The rest of the day has, unfortunately, been not so incredible. My level of fatigue is so high even with my usual 12 hours of narcoleptic sleep that trying to function while sleep deprived is completely miserable. My emotions are in overdrive – sad things are so sad I could die, mildly funny things are the best most humorous things I have ever heard. My body feels like it’s trying to wade through a pit of tar, and it hurts even more than usual.  I’m so spaced out that I forget what I was doing 30 seconds ago. I prefer the days I’m in a crash and can’t sit up for more than five minutes than today. I can’t accomplish a thing under either circumstance but when I’m in a crash I have no control over it. Right now I know I could just sleep for a few hours and then I’d be able to do homework – that makes it really difficult to want to push to stay awake all day. I am also really lonely. I woke up when my dad and brother were gone for work/school and my mom was still asleep. I can’t see my mom during the day because she teaches and I’ll have to go to bed before she finishes. We normally hang out at night watching “our” tv shows and joking around. I’m wondering if it’s worth it to lose that and lose the one time of the day I feel alright. Ideally we could all be together as a family and this schedule should mean I can see other people more instead of less…I hope that’s the case. Right now the sleep deprived depression is getting to me and making it for a few more hours sounds impossible. I’m going to try incorporating a short nap into my day tomorrow to see if that improves things.

Very boring post, but as previously mentioned I’m barely awake.

Start Here – Where I’m at Now

My current list of diagnoses, drugs, and symptoms is as follows –

Diagnoses:

Dysautonomia (POTS, NCS)

Narcolepsy

Fibromyalgia

GERD

Eosinophilic Esophagitis (currently in remission due to diet)

Nystagmus

Suspected IBD

Tested as Hyperthyroid

Generalized Anxiety Disorder

Depression

Most likely PTSD (I’m doubting this diagnosis as I wonder if it’s just the messed up fight/flight response)

Possible OCD

Current Symptoms (well, as many of them as I can remember):

Inability to sleep at night (example: it’s 9AM. haven’t fallen asleep for the “night” yet.)

Need to sleep at least 12-17 hours per day

Nausea (to the point that I sometimes start gagging out of nowhere)

Extreme fatigue

Inability to focus at times

stiff neck and back with knots and cracking

joint pain

“crashing” after an activity – needing to sleep for hours after and then spending days with worsened symptoms

electric shock like sensations

brain fog/ feeling “out of it”

feeling of floating and spinning

numbness and tingling of extremeties

shaking

overall weakness

feelings of being stabbed in random parts of body

back pain

chest pain

difficulty breathing

feeling of painful poison in veins

feeling of limbs/body being stuck and crushed under heavy concrete

muscle pain and sensitivity to touch

dizziness

trouble walking, standing, or sitting for more than 30 minutes at a time

black outs

headaches, especially after attempting to sit up too long

deep sense of anxiety and loneliness, racing thoughts occurring at night

occasional bouts of extreme restlessness and overexcitement

muscle weakness

depression/sense of hopelessness over situation

lethargy

easily tired muscles – cannot use mouse on computer for too long without switching hands, etc

confrontation leading to extreme sense of being in danger, hiding and crying

bleeding from throat (currently not happening)

blood in stool (currently not happening)

diarrhea ranging from severe to occasional

abdominal discomfort

abdominal pain which can get severe enough to lead to blacking out

abdominal spasms

visible muscle twitches in any/all muscles (currently thought to be myoclonic jerks)

anxiety, mild to severe depending on situation

sensitivity to heat

sensitivity to cold

dark line around mouth previously not there

fever which has so far persisted 7 months

sensitivity to light, sound, overstimulation of any kind

 

Current drugs:

Midodrine

Mestinon

Ocella

Thermotabs

Hyocyclamine

Cymbalta

Pantoprazole

Diphenhydramine HCL

Melatonin

Digestive Enzymes

Probiotic

Fish Oil

Multivitamin

Vit. D

Vit. B12

Occasional adderoll (prescribed for narcolepsy)

 

I’m sure I’m missing some more random symptoms (I have a LOT of random symptoms), but this is the majority of what is going on with me. I’ve been sick for just under 8 years and it’s been a constant struggle. The POTS came first and was diagnosed after 2 years, the Narcolepsy 2 years later, the Eosinophilic esophagitis 2 years after that. It’s very frustrating feeling like I am getting more and more sick instead of better – the abdominal pain episodes started 3 years ago with the bleeding and GI symptoms beginning less than a year ago. It scares me watching my body decline and seeing my mental health suffer as a result.  I wish I had words for just how soul crushing the fatigue is – everything suddenly becomes SO DIFFICULT and overwhelming because of it. If I wash my hair, that’s the day spent. I have managed to make my way through high school and community college while battling health issues, and at 23 am hoping to attend nursing school in the fall – but I need a change in order for that to be possible. I’ve been desperate for health and answers for years and have tried just about everything you can imagine. So often I am sick of dealing with arrogant doctors and crazy naturopaths who end up doing more harm than good, but I can’t give up. My next attempt at achieving better health? The POTS treatment center. At this point I’m doubtful that my symptoms are all caused by Dysautonomia, but I don’t know what else to do. I want to find an underlying cause for everything but no doctor seems to want to help. I am hoping and praying that the treatment center can at least help with the fatigue and blacking out and “riled up” feelings, which would most certainly be an improvement.  I just don’t know if I can handle more false hope and disappointment.