React! Share your thoughts

How has your life been affected by a disability? (Yours or someone else’s.)

What experiences have you had with disability issues? What can you add to the author’s do/don’t suggestions?

Share your thoughts with your fellow members!

I had a sudden onset of type 2 TN with dental like pain coming from my front tooth and elsewhere. Eventually, lyrica was the primary medication for pain management. Sleep deprivation began about the same time. A sleep study was done. REM sleep apnea was the initial diagnosis. The sleep machine was bought but not effective. Any mask caused considerable pain so application was an issue, as well as efficacy. I never was a good sleeper but this was much worse. Easy to go to sleep. Hard to stay asleep and the quality of sleep is awful. This was over then years ago. Since then, I feel like i’ve been in a rut. Is it my fault? Is it the absence of quality health care? Am I bad patient? Whatever keeps me in this rut, my world continues to narrow and I suspect that it slowly will lead to something like dementia. From the medical world, I use 1mg of lorazepam every other night. If I did it every night, I would be wanting a higher doseage. Another sleep specialist looked at the data and said that the awakenings were not typical of a sleep apnea diagnosis. And, another sleep specialist wanted me to to down the path of cognitive behavior therapy. I was not interested. Being a retired clinical psychologist is part of the resistance and this encounter reinforced my bias that that the sleep specialist industry is driven more by money and patient desperation rather than by good science. From a hard data standpoint, the sleep discipline does not seem to have come further than what is done in a sleep clinic, which measures quantity of sleep more than it does quality of sleep.
And, this is even more true when it comes to home sleep studies and the various apps available to patients to use at home. I am 69 years old, and “look” very fit. But, when I figuratively look in the mirror, I see that the biggest issues have to do with lifestyle. Major change and minor change of habits are at stake. What is at the root of my sleep deprivation is both biological and psychological. The biological part is out of my hands. And, the psychological part just seems too challenging. I went to a therapist whom I knew and liked as a colleague from years ago. After one session, I thought otherwise and the 150.00 per 40 minutes session left me thinking that it would be like dating. Have to kiss a lot of frogs by the time I found one that I really liked for the long term. Speaking of which, I have been married for the past 16 years. There are problems there but far from enough to leave. Still, i know that it is an issue and underscores something that speaks to the cornerstone of any resolution. I sleep better when I am in bed with her, cuddling and loved. When, a sleep mate does not work it’s only because I have GI disturbance or physical pain (knee, back, hand pain). Unfortunately, my wife has genuine medical issues whereby she expresses the need to sleep in a separate bed. What is it about that physical contact that works where else it fails? This includes meditation, exercise, or cannabis. I could diet better and I could have better sleep hygiene but food and tv are my comforts, distraction, and escape. And, frankly, doing this or that better strike me as rabbit holes. I am tired of being obsessed with what I could do better when the end results are not necessarily life changing. Something at the core, for a lack of better words, is spiritual. We have awful neighborly relations (doesn’t help that we are the opposite of Trump and lovers of nature) but don’t want to move. While I use to have dinner parties, they are non existent. To be flip, I feel like I need to move to a pastoral setting with all the amenities of the city, and to be mormon where I get to keep my current wife and also have a sleep buddy. Well, that’s my confession. At the end of the day, I’m still in a rut and tired of looking under the next rock for help. People and my inner self hold the best prospect for a better life, yet I can’t access this life line and I really don’t believe that science will have much to offer in my life time. Courage keeps surfacing as a key.