The night is the hardest time to be alive and 4am knows all my secrets.
Poppy Z. Brite
When we last visited this topic things were somewhat bad. I am not sure what they are now. Different is a non-negative assessment so let’s go with that. I am trying to make these more positive.
I am still using the APAP machine for sleep apnea, and it is no better. It doesn’t stay on all night, not that I sleep that much. At least it marks the time I lay down, so I know that much at least.
I did spend the entire month of May not taking sleep supplements to see if I could reset my brain. Predictably, I did not sleep much. It was between two to five hours, so basically not too much worse. The difference is that it took much longer to fall asleep. Several times, I went under two hours. Once or twice, I think I got close to seven hours. 42 hours without sleep is about as bad as it got, which is not bad. Anxiety has been bad for reasons unrelated to sleep since before May and has only gotten worse.
I thought for a brief time that I was on the upswing. A hypomania event kind of made my outlook unrealistic. Even without sleep and lots of unbounded anxiety, I was getting in really good shape and actually enjoying it. I was ecstatic that I improved my broken knees to the point where it was much better than before I injured it last summer. Like I did last year, I let my optimism take over, and the universe took note and knocked me down yet again. I don’t learn.
In June, I started up taking sleep aids. For a few days, I thought I had reset my brain. I was sleeping six to eight hours a night for about a week. The issue started because I wanted to try a different melatonin product. Huge mistake. This formulation was pretty standard. It has melatonin, L-Theanine, and passionflower. It also had Garcinia Cambogia, which I have not seen before in a sleep aid. Sadly, it took me a while to connect the problem with this supplement.
One day around June 10, I woke up extremely dizzy. The room was spinning. I was dizzy all day and the next night while I slept. I think I fell when I got up in the middle of the night. It might have been a dream. When I woke for the day, I was still dizzy but less so, but my left shoulder was aching, which is the start of something extremely painful.
Without exception, shoulder pain always begins while asleep. Is that a sign that I should not sleep?
My shoulder might be in worse shape than my knees, and that is saying a lot. I have a Hill-Sachs fracture, a repaired rotator cuff that is calcified, and a bone spur that is poking into it. The bone spur is from an area of bone that was shaved down when I had surgery to repair the tear. There is also tendinosis and arthritis. There are bone shavings stuck in my shoulder. There are also calcified pieces from my rotator cuff that break off and start to annoy the bursa sacs. Eventually, all of that causes extremely painful inflammation.
It is bad enough to start interfering with sleep. Normally, I go to the VA’s urgent care, but these are not normal times. They say to not go there unless it is something serious. I should have just gone. Of course, it got progressively worse over the next few days. I had to drive over three hours to pick up my grandson, and I almost didn’t make it. Driving with a bad shoulder was excruciating. I did make it back home. Things were okay. I was still sore and stiff, but I took my grandson fishing a few times, took casual bike rides with him to find dinosaurs, and went to my parents to help around their house. When I got back, it decided to get as bad as it has ever been. It felt like my shoulder was dislocated, and when this happens, it puts enormous pressure on my upper arm if I move just a little. It got so bad I could not drive to the VA, which is about a 30-minute drive, so I just went to the nearest ER.
The doctor asked why I was there, and I gave a complete description of the state of my shoulder and told him what the diagnosis probably is. He asked what the VA does for it, and he said what I told him sounded reasonable but said he needed an x-ray to confirm it. So he comes back two hours later and says it was exactly what I said. I am not sure if he was surprised or not, and gave me a shot of Ketorolac and a prescription for hydrocodone. I would have preferred a steroid anti-inflammatory drug which works much better, but they usually won’t give it to me. Ketorolac injections are extremely painful. Steriods feel like a normal injection.
The hydrocodone was a surprise. At the VA, one could arrive with their limbs torn off and all you will get is ibuprofen if you are lucky. A somewhat scary surprise, but when one is in so much pain, it doesn’t matter.
The shot they gave me usually works better. Despite being quite high when I went to sleep, I got less than an hour that night. I was in so much pain, the worst the shoulder has ever been in. That was eight days ago, and in the past two days, it is finally noticeably improved. Still hurts a little, but if I move slowly there is close to full range of motion. Four days ago, my range of motion was maybe 20%, so things are picking up. The problem is that this adventure probably caused more scar tissue internally, so who knows what it will look and feel like going forward. It is to the point I can stretch it without too much pain, and I will have a long path to loosen it up.
The slow improvement is new. Typically it would take two days after I get the shot to be back to normal. I am fearful that my shoulder has significantly degenerated.
I am keeping in mind that I thought my knee was done for. I can be positive.
Yesterday, I went on my first bike ride for exercise on June 7. I have become super fat and out of shape. Almost everything I have done exercise-wise is wasted. I only went 10 miles (~16 KM), and it was pretty good, except my legs hurt from lack of exercise, but my knees are still okay, which is the lone good news this summer. With about two miles left, my upper left arm started to hurt, my bike is a crossbar handle, so it does not put as much pressure on my arm as the drop handle, but it still started to hurt. I will probably be cautious this week and try to go out every day but no further than I did. For a brief time, I felt good. It was hot, but I enjoy hot weather and was covered with a long shirt and long compression pants, but I never sweated. Everything is still cold all of the time.
As an aside, what I didn’t see was depressing. I hope it was because it was fairly hot, but the bike path was empty. During the shutdown, it was annoyingly crowded, with far more people than I had seen previously. I was hoping it would start people on a more healthy path, but it seems that people are reverting. *sigh* I hope I am wrong.
Last night, I was awoken by a popping sound and sensation in my shoulder. Why am I not surprised? A few hours ago, my range of motion was about 20% again but less pain than before, and now it is 75%, so at least I did not dislocate it again.
I have been on the verge of having complex partial seizures. They haven’t gone past twinges, but it is something to watch out for. It will probably hit once my shoulder is back to its normal sucky self. I don’t seem to be allowed peace or consistency or more than small dosages of happiness without having to pay dearly for it.
Anyway, it wasn’t until just before I visited my parents before I realized what is likely causing the dizziness. It seems that I am correct because the only dizziness I now have is mild and caused by the pain medication. I have tried a more basic melatonin formulation, and the dizziness is gone.
I only take the hydrocodone in the evening since that is when it is at its most sore, and also take ibuprofen. Don’t tell the universe, but I am hoping that the pain is gone by next weekend. It seems that I am a hopeless optimistic pessimist. Maybe it is pessimistically optimistic?
What I need is surgery on my shoulder again, and I was pushing hard to get it done last winter, but the VA does nothing quickly. Since things started to shut down, they are canceling all but the most critical and urgent procedures, and it seems that blinding pain doesn’t rate high enough. I guess it makes sense. I don’t want them to risk anything just because I am suffering. I was sad but understood when they canceled my dental appointments. Holding off surgery seems like an overly cruel thing to do. I am sure I deserve it but wish I knew why I deserve all this pain and agony.
I need to set up my physical, which will be done on the phone, so will be to extend my current prescriptions. They called last month to set it up. I told them I might call them to schedule it in a month or three. I know they will do nothing for my sleep, so nothing else matters, does it? I have enough of my prescriptions to last a few months. It might be time to withdraw from all medical care.
I didn’t want to wake up. I was having a much better time asleep. And that’s really sad. It was almost like a reverse nightmare, like when you wake up from a nightmare you’re so relieved. I woke up into a nightmare.
That quote showed up in my last rambling essay, but it is very appropriate here also. It does illustrate what suicidal ideation is like, and honestly, it would be so nice if that is what was going on. I haven’t really slept well in decades, but at least I enjoyed what little sleep I got. It was a nice respite from my waking nightmare, and waking up at peace for a split second before anxiety comes rushing in is worse than my shoulder pain.
In the past eleven months or so, my dreams have been mostly terrible nightmares. I feel fortunate that my waking nightmares do not often follow me into sleep, so at least sleep time is a different kind of nightmare. It makes for a more diverse life, I suppose. When it does follow, it is 1000 times worse than being awake.
I had been switching between melatonin and doxylamine. For some reason, I have not since I have been taking hydrocodone. I don’t think taking an opioid with melatonin would kill me, but I still don’t. I am such a lightweight that I cut the pills in half, so they last a long time. Last Wednesday and Thursday, I did not take the opioid at all, which bodes well for my shoulder. I had to the past two nights. I will be out soon, so all I can do is hope my shoulder continues to improve.
The funny thing is that my sleep has been roughly the same on opioids as it is on sleep aids.
I will go back to the normal routine soon. Sometimes, I do take both at night but never at the same time. At 11 PM, I will take one of them, and when I am still awake at 3 AM, I will take the other. That works well, and I sleep as comfortably as I can with that stupid mask on my face. I wonder if I could take both at the same time. It might be a reason to set up a telephone physical.
It is so strange. I can sleep three or four hours, stay relatively busy that day doing some work inside and outside, and ride my bike for 40 miles (~65 KM), and maybe walk 6k-10k steps. Despite that, I still have problems sleeping. If I can focus my mind, it feels like I should be more productive since I am up 18-24 hours each day. It seems like I don’t do enough. I read a lot as a distraction from the tiredness and anxiety, but it doesn’t help. Noisy mind, I guess.
I am not sure how my sleep and health issues lately are related, or even if they are, but it seems that if I could sleep like a normal person, it would at least not make things worse. I am not sure if a consistent eight hours a night would have any positive effect. The question is, how do I do it? There doesn’t seem to be any medical help available to me, and psychological help failed.
If I find an answer, I will post it in case anyone else is struggling like this and stumble onto this site.
I guess I do not know the answer to a seemingly complex question, but is apparently simple to nearly everyone else: how do people get enough sleep?
A ruffled mind makes a restless pillow.