Sleep Apnea

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Sleep Apnea
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    # EDS, #Epilepsy , # Sleep Apnea and other Chronic Illnesses. We are our Main Source of Advocacy and Care. With Awareness we can Educate people.

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    What’s your take on comfort items?

    Mighties, do you know what I recently noticed? 🤔 I really need an endless amount of pillows, stuffed animals, and soft blankets to create a safe space when I’m trying to fall asleep at night 😅. Even if I find myself struggling to actually fall asleep, all my comfort items are helpful in my self-soothing process to eventually get to dozing off.

    What about you? Do you use comfort items to help you fall asleep? 🧸

    #Insomnia #ChronicPain #ChronicIllness #SleepApnea #Depression #BipolarDepression #Anxiety #MentalHealth #Disability #MultipleSclerosis #CheckInWithMe

    60 reactions 25 comments
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    Seemingly Never Ending Journey

    I have been disabled since 2003. An AVM ruptured in the back of my brain. I was 32 at the time and I'm 51 now. Long ago, I accepted what happened to me and everything I have to deal with for the rest of my life. It's not fun, but I can joke about my disabilities at this point in my life and I have learned how to incorporate them into my life. I found new interests and things I enjoy to keep my mental health positive.

    Aging creates new challenges on top of what I already deal with. I was diagnosed with sleep apnea couple years ago, I had skin cancer, memory issues, and all the preventative medical exams someone my age needs.

    I went and saw an ENT doctor because there is now an implant available to use instead of the machine and mask I have to wear every night. The doctor implied that I am borderline sleep apnea so he gave me some equipment to do a home sleep apnea test. I had to wear the rig in the picture. I was told that the best results come from sleeping on my back. This is extremely difficult for me, I sleep on my stomach to avoid having my head spin from laying in this position.

    I took the doctor's advice and tried sleeping on my back. That didn't work out to well for me. I woke up 3 or 4 times during the night. I believe I stopped breathing because I woke up catching my breath and inhaling a lot of air. That doesn't happen when I sleep on my stomach. It scared the crap out of me and I finished the 3 night test on my stomach.

    It really affirmed why I sleep on my stomach. My brain does not regulate some of the autonomic functions like breathing correctly.

    I can't say what things I will have to deal with as I get older and I can't say that I will enjoy them, especially with the things I already deal with in my disability.

    I will deal with any challenge as I always do. I accept the challenge and conquer it.

    #avm #Disability #challenge #MentalHealth #Trauma #Aging #autonomicfunctions

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    Migraine Update

    #Migraine #ChronicHeadaches #postconcussivesyndrome #SleepApnea

    my neurologist was very kind and prescribed me some vitamins and rescue medications. She also wants me to have a sleep study to rule out sleep apnea as a cause of worsening migraine and tension headaches.

    I'm having less headaches and migraines this week which almost makes me feel like an imposter. Does anyone ever feel that way?

    #BipolarDisorder #GeneralizedAnxietyDisorder #ComplexPosttraumaticStressDisorder #ADHD #Transgender

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    How do you know if a doctor is a good fit?

    We know good doctors when we see them. Maybe it’s their communication style or something they did that went above and beyond. Perhaps it’s a genuine bedside manner or a doctor who always returns your calls the same day you make them.

    In your experiences, how do you know if a doctor is a good fit for you?

    #Dwarfism #Achondroplasia #ChronicPain #SleepApnea #Parenting #Caregiving #RareDisease

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    I am new here!

    My name is Samuel. I have been diagnosed with 20 different illnesses and/or diseases over the years. The last one, early stages of Alzheimer’s. I am emotionally drained most days. It feels like my memory is being erased, besides having problems communicating and process thoughts, emotions, and ideas, etc. The other issues worsen the situation as these still need to be managed, but they have a severe impact on my mobility, comfort, and other human basic needs. Anyway, thank you for listening.














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    Well, there’s not much morning left, and here I am, dragging along both physically and mentally. I’m so tired these days, it’s painful. As I’ve noted in previous posts, I need to get back to my sleep apnea therapy (especially because I’m on a new medication that makes me drowsy!), but I haven’t been able to bring myself to do that yet. While I’m super grateful (and actually look forward to) therapy this afternoon, I worry (—there’s a surprise!) I’ll be too fatigued to really gain something from it. Furthermore, I haven’t completed all the tasks I’d planned to for said session, and that always makes me feel guilty. Anyone else dragging this last January Monday?
    #Depression #Anxiety #MentalHealth #Fatigue #Guilt #MightyTogether

    18 reactions 10 comments

    Finally Found My Happy Warning, this is a bit of a novel.

    I was diagnosed with EDS, Bipolar, severe sleep apnea and a few other lovelies about fifteenth years ago. I’m closer to sixty than fifty.
    I’ve lived my entire life with pain physically, mentally and emotionally.
    I spent my life being told I was a hypochondriac, just looking for attention, or I was bipolar (not in the proper context), I was nothing but a troublesome bother.
    I’ve lived a life full of anger, depression and frustration.
    Luckily I’ve married a wonderful man who understands me. He has done everything he can to support me and help me get through it all. My family is a distant memory. Yay! I’m feeling much better for walking away. I am trying my best to find at least one thing daily I am grateful for.
    I have also been “Adopted” by my best friend’s family and am not judged.
    I lucked into the best neurologist going when I had a stroke. He knew immediately that I had Ehlers Danlos and has. spent a great deal of time helping. He’s gotten me the very best of medical care I can get.
    He has ruled out everything physically possible. He believes I may have Dystonia. Possibly due to environmental issues. More testing is coming.
    I guess what I’m trying to say is that I am relieved and have finally found my Happy. Not every day is filled with Sunshine and Roses but I know I’ll be ok. That alone is worth more than I could ever imagine.
    I have finally found my Happy.
    I’m ok with that.

    14 reactions 5 comments
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    What do you wish others knew about your rare disease?

    One of the everyday challenges of living with a rare disease such as achondroplasia is explaining the rare disease to others (whether your doctor, family, friends, or strangers).

    What is something you wish others knew about achondroplasia? What is something you are just tired of explaining? Share in the comments below. ⬇️

    #RareDisease #Caregiving #Parenting #Achondroplasia #Dwarfism #SkeletalDysplasia #ChronicPain #SleepApnea

    4 reactions