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  1. paul tinker

    paul tinker Well-Known Member

    There are common statements and topics posted on this site. The big ones are dealing with people who don't understand and are so uncomfortable with pain. The book It's is OK that you're are not OK. Deals with that topic and the author Megan Devine put some very well thought out sociological and cultural commentary that I have found useful. This book came to my attention from Michele Wood a grief poster I came to know on this site. I have tremendous respect for her. I would encourage anyone to go back and read her if for nothing else her tone of voice. Loneliness, the sense of being lost, pain, disorientation, are all topics or threads that could be discussed. The lack of sleep and days of insomnia we all have experienced. I will qualify a bit. My first three months I could not read. I will always say I do not live grief it lives me. At any stage, I could not have been any different. Many of the symptoms were what I would guess to have had a concussion. Forgetfulness, memory, unable to perform logic sequence and this list can go on. The topic that is often discussed is a sleep disorder. I have scheduled a sleep apnea consultation. I have used clonazepam, A form on Niquill for sleep, heavy exercise, and some limited alcohol, some pain pills. Sometimes separate or in combination. Also, cut back on stimulants, like coffee or nicotine. I have used melatonin and sleepy time herbal tea. My sister had watched a documentary that addresses this topic. Examples from her input are a dark room, sleep only in the bedroom, time out from electronics for a period of time prior to going to bed. There are more but I don't remember. My latest is banana, organic, sliced into rounds and boiled. Drink the tea and you may or may not also eat the boiled banana rounds. The idea is the magnesium and potassium will relax you enough for better sleep. Many "guests" come and go here. Some people read with no comments. I get that many are so drowning in grief that is all they have at present. I would request some interaction on either other ideas or if any of these were tried and people report back. We are all in the same boat, are we not? The more pharma and laboratory built sleep aid generally leave me dehydrated and hung over the next morning. So hence the more natural products. best to us all!!!
     
  2. paul tinker

    paul tinker Well-Known Member

    Forgot to mention Yoga. I take three classes a week. It is for over age fifty and over and light, gentle stretching type. Is it beneficial, Yes? It includes deep breathing, a series of postures and stretching to release tension. Each posture works on combinations of muscle groups. Life, in general, has stress and our bodies store that stress. Our minds also can magnify our life challenges in a negative way. Again stored in our body. Dr, Bessel van der Kolk has a book, " The Body Keeps the Score ". His work is on the effects of trauma and research into PTSD. A lot of his work is brain function and chemistry. My wife's long battle with cancer was horrific. My role as her caretaker and loving husband, that experience was the hardest thing I have ever done. We all know the sorrow of loss. That pain and the healing will be both resolved on its own over time. But also with the best tools and intentional use of those tools to facilitate our recovery. Up to the very end, she wanted to live and always thru her life did an exemplary job of living. There was that moment when she knew there was no tomorrow and she had to accept the end. The process of surrender and the preparation to leave is still so vivid in my mind. I do what we all do feel heartbreak and weep.
     
  3. Achelois2109

    Achelois2109 New Member

    Hi Paul,
    Amazing, I read exactly the same books. I have a lot of respect for Megan Devine, I am so sorry for the loss of your wife. I can feel your pain. I cannot even imagine what you must be going through. I have lost my niece in a tragic homicide at the end of July 2018. I will never forget the day my mom told me she is gone. My family is spread over 3 continents. Europe, the Middle East and my brother and my niece plus some extended family in Canada. I didn't make it to the funeral. I won't get into all the details, but thee was not enough time for me to fly from Germany to Canada, it killed me. I don't know who I am anymore, sometimes I feel I am going insane, have had the same things you describe here, memory loss, inability to focus, insomnia and more. Clonazepam is my best friend sometimes. I have advanced knowledge in psychiatry and trying to be careful with those,

    Magnesium helps a lot. Make sure it is Magnesium Bisglycinate or Glycinate, The others do not absord as well as this one in the body. Two before bedtime would help me sleep at some point. Then there is L-Theanine supplement. Did the same at some point, but started stimulating me instead later. If you want, feel free to drop me a private message. We are in the same boat. I feel heartbreak and weep too.
     
  4. paul tinker

    paul tinker Well-Known Member

    Achelois thanks for the pharmacological report. Yes, our sense of self and well-being. I meet people and what they say or do is so confusing. I will as it where like a pinball machine go to tilt if pushed too hard. It can be overload to explain to our selves that thing that produced that event. I have spent months and hours asking why Kay did not get the medical procedure in 2009. She would be here most likely today. I am mostly to an understanding of maybe 80% and is most likely as close as I will get. Then as a wise woman suggested. Focus on the gifts you were given and I do.
     
  5. paul tinker

    paul tinker Well-Known Member

    Really both with not sleeping at all or sleep that is not of great quality. I did a sleep apnea test on Sunday. Woke up in the middle with three hours and with some pill aid was able to log six hours and that is the needed time for enough data and insurance will participate should a device be needed. A short story made longer is I am trying so many avenues of repair.
     
  6. Didee

    Didee Member

    Paul, I have tried both pharmaceuticals and herbal remedies for the sleep loss. I am currently using 30 mg of melatonin a 1/2 an hour before bedtime. I went back to work full time 2 weeks after my husband's death, but found it very hard to get back into my normal sleep pattern. I am 8 months into this new normal and feel like I am permanently sleep deprived. I get my best sleep on the weekends now that I am going to our boat. Maybe I need a rocking bed at home. I can relate to your loss of the ability to read it took me 6 months before I could read anything and retain it. I spent those 6 months listening to books on Audible. I think the best thing I have done for my overall well being is to participate in a Spousal Loss Support Group run by our local hospice. I still have flashbacks about Dave's year long struggle with Esophageal Cancer but they are subsiding on their own. It helped to know that I was not the only one experiencing them. I wish you nights of sleep and days of peace.
     
  7. paul tinker

    paul tinker Well-Known Member

    Didee great response. Nice, you have some humor intact, rocking bed!! I did go to a sleep apnea clinic with results pending. The doctor and I did discuss melatonin in the lower 3mg range but her advice was a small percentage of people actually have the brain disorder of not knowing when to sleep. I like your term the new normal. That is where we are. Thanks for the mention on the reading. As you say it is welcome to know some of our state of being is shared with others. I do better with Audio vis youtube. Groups may be the ticket. Ours meets on the second Saturday. I could use notes or the computer calendar to remember. Yes, the decline of our person. I to grieve that, especially in the recounting to others or some trigger. I am resigned to weeping over all that. Good post. Thanks.
     
  8. paul tinker

    paul tinker Well-Known Member

    Minor update. Sleep is being dealt with via sleep apnea and a CPAP machine. This is a physical condition. The gettin adapted to this device will definitely take some time. This a hopeful turn to a problem. Insomnia we experience is different. That I think is a highly reved mental condition as we try to process our loss and all that it means. Our thinking goes into overtime. To those who are sleep derived I feel for you. We need mental clarity but tuff to come by with being awake all hours. I will say it gets better just incrementally. I hope you all see some improvement no matter how small!!!
     
  9. David Hughes

    David Hughes Well-Known Member

    Paul,

    The biggest comfort to having a CPAP machine is the sleep. I was diagnosed with apnea about 15 years ago.

    Since those sleep apnea tests I have been using a CPAP machine each and every night. During that time I have gone through 3 different machines. My current machine can make the water it provides, to keep my mouth moist as I sleep, either warm or colder depending on your setting. It also can be setup to be automatic so that once you don the CPAP mask, it activates on your first breath and runs on the setting you programmed.

    Today that machine helps me sleep at night. My apnea came about due to not breathing, or holding my breath as I sleep. The CPAP machine basically forces me to draw breath so no more, waking up gasping for air, very scary indeed.

    The biggest benefit to using a CPAP machine, during winter when the air is cold, the machine is fed with warm air so my lungs always feel normal. To this day I have never caught a cold or the flu since I started using the CPAP machine. You could say to me that machine saved my sleep cycle.

    Of course during dry days, the water in the tank reservoir depletes faster so I always have a full bottle of distilled water by my bedside table to refill the water that I used as I might wake for one reason or another. By the way I use a full face mask, as I am a mouth breather.

    When I put the mask on at night I would say no matter how much my mind has been racing before I sleep it is like my friend, it almost literally puts me to sleep. It is as though since I am so use to wearing a mask at night that each and every night my sleep is restful. The only downside if you get up to visit the bathroom after a hours sleeping, you may find yourself reawakening.

    The longer you stay up, your mind will then start to wander or race depending on what you are starting to think about. So be careful during those breaks in your sleep cycle and try not to be away from the machine too long for fear you might convince your body your sleep cycle is over for the night.

    If you feel like your machine is not operating at peak efficiency don't try to be a mechanic. Either have it inspected or replace it. My machine cost roughly $800 and Social Security picked up the entire tab for it, with me paying zero.

    One last thing. During days of high stress the CPAP machine is like the world champion, it protects and basically puts you to sleep. Eventually your mind will accept giving into the machine, meaning trust it to help you sleep and your days will seem so much easier to face. So your sleep is what you must always be aware of, lack of sleep is a killer in more ways than one.

    Paul, when I was in the military sleep was hard to come by, as your sleep was take it as you get a chance type of deal. I think back to shift work, all the different shifts and how enormously hard it was to force yourself to sleep, even when you were amazingly tired for whatever reason. I do believe even as a younger man that had a CPAP machine had been available my earlier days in life might have been more restful.

    So if you ever have a question, when it come to using the machine, or its' effectiveness, I am a firm believer that my life today is better for having been using one now these fifteen years.

    Take care Paul - Make your sleep come first, no matter when your time to sleep is.
     
  10. paul tinker

    paul tinker Well-Known Member

    Dave, I have friends and know of people that use this device and are glad they did. I will go into the sleep machine supplier and trainers on Monday. What type of mask are you using? This not currently working out. I am basically doing 90% use awake to try to meet the insurance minimum. I was not getting the mask to fit correctly and too much leakage. The bigger issue is when the time to sleep. To restless. There is no sleep cycle. Maybe back to walking and getting tired enough will help. But the little naps or a couple of hours here and there is not working. Thanks for the write-up. Most of the functions you mentioned I get. The fit and flow is a question I will take up in the clinic. The being ready and tired enough is another issue and I am not sure how to get that cycle working.
     
  11. David Hughes

    David Hughes Well-Known Member

    Paul, I use the Res AirSense 10 AutoSet https://helpmedicalsupplies.com/pro...I9-7W_4rO5QIVCbSzCh3gHQsdEAQYAyABEgJRMPD_BwE# Then you need the mask type you feel will work for you.

    If you have done a sleep study which Social Security required for me. You go to a specified sleep study location. You can be tested on either a nose mask or a full face mask, or even both. They hook you up to electrodes all over your face, chest and then you sleep, and they record all the instances (occurrences that you have of not breathing properly while you sleep). Based on this results, they recommend the mask type you should use.

    Over the course of my life I have had 3 sleep studies done. I use full face mask due to being a mouth breather, even when I run. The mask as I said is also a ResMed full face mask. When you don it, the one I have two straps come up behind the back of your head as you put the mask on. At that point, if the mask is new to you, activate the machine, and you can feel with your hand if there are any leaks.

    If there are leaks, tighten the back to straps to see if that eliminates the air leakage. If that still doesn't, there are additional locations on the mask to tighten. Each person who dons a mask has a different shaped head. so this beginning process is the most important. That is why, as you fit the mask to your head, turn it on, feel for leaks and tighten it accordingly.

    When I first started with a breather 15 years ago, everything was manual. The machine weighed a ton, the power supply was awkward, and the mask was something to get use to over time. As I found my comfort zone with the mask, it was absolutely normal to don the mask and be sleeping within minutes.

    My first machine was a bit loud, and see I also incorporated using a small fan for noise cancelling the machine sound. Today my machine is literally soundless, and I still use the fan.

    Take care Paul, and I know you can do it.

    As for the 8 hour requirement that Social Security required for me to get my machine. My current machine has a clock on it. It counts the time I wear the mask and adds it to the onscreen counter. I just made sure until I qualified to get the machine free I had 8 hours a day of wearing the mask and using the machine. Also this machine above connects to the internet and sends my sleep pattern and usage via a little card that it has inserted in it.

    My settings on the machine. Set to Auto. The machine can push air up to a setting of 14, with the autodetect my goes to 5 once I start to breath in the mask. So I have a lot of growth still to go with this machine. Humidity level is set to 5 and can go all the way to 8. You set the mask next: Full Face (for me) Selectable by the dial Airplane Mode: Off

    Paul, even if I have coffee, and a soda or something a couple of hours before I plan to go to sleep, and my mind has been working overtime, once I don the mask today, it is as though I need it and the next thing I know I am out like a light.

    I would suspect because over the last 15 years I have gone through a lot of growth using a CPAP machine. I have used roughly 5 different masks, but it is as though my body has adjusted to wearing a breather and has fully accepted it, so I am at peace when it covers my face.

    Also, this is important. Today being older as we are, it is not unusual to take a nap once in awhile. However, my brain has convinced my body that when I go into the bedroom, and put the mask on, I am meeting my savior of sorts. He has comforted me in times of great stress over the last 15 years. All I can say it, you have to have a little faith in yourself, that you are helping yourself to a better nights sleep by using a mask.

    Corny as the above sounds, I am speaking from experience. It helped me through all the nights of the ups/downs of the cancer progression for Nadine. All the monetary worries as the bills piled up from all the treatments. Event after event that occurred I knew I needed sleep. I also knew that I was comfortable putting on the mask as I lied there with all that was present on my mind and in my heart. Just give it a chance and eventually you will swear by how much more rested you are once you use a breather.

    Lastly, two Xmas ago my sons bought me this https://www.cpapxchange.com/soclean...MI9-7W_4rO5QIVCbSzCh3gHQsdEAQYBCABEgJl8PD_BwE Keeping your mask clean is a must. Though the machine is pricey it is great for getting rid of many germs that are in the air. If you have to clean your mask my hand just go by your directions given for the mask you have.

    My machine can either heat or make cool the humidity setting I use. So of course in winter or cold climates at night using a warm setting is a must. In the heart of summer, perhaps a cooler setting is more comfortable for you. You have to decide.
     
  12. David Hughes

    David Hughes Well-Known Member

    Oops one additional word of caution. The straps that hold the mask to your face can eventually snap or break. There is nothing worse than trying to put your mask on and have this happen. So I always have an extra strap for whatever mask I use just in case it breaks and there is no way to replace it for awhile. This is also another hard lesson I learned over the past 15 years.
     
  13. paul tinker

    paul tinker Well-Known Member

    Dave the same unit you are using. The meeting went well with a better fitting pillow face mask. You have supplied a great deal of information and detail. Most I somewhat knew but you consolidated and summarised very well. Thanks for that effort. I am compliant with the Medicare requirements. Surprised to be that but good enough. The other issue that is not equipment it is the restless mindset at what should be the time to sleep. The cycle and pattern are not there. I will see the sleep doctor in a few weeks. Perhaps get more active and physical during the day. Somehow lower worry and obsessional thinking. I think your believe systems helps with that. Maybe just watch the videos you have provided one hour before bed. Good thoughts and valued contributions.
     
  14. David Hughes

    David Hughes Well-Known Member

    Paul, one other thing. Consider using the small fan idea. Think about it this way. The noise of the small fan, is a constant sound, light in nature, that your brain can focus on at first and then eventually it will become part of your setup. So when I go to sleep, on the table beside me, near my pillow area, is the CPAP machine, my cleaning machine and then the small fan.

    The small fan blows on my face, year round, hot or cold, it is sort of a distraction to outside noise, like cars driving by, or noise in the house, and with the sound always constant, very low sound, it is distracting enough to help me go to sleep. When I first started with a fan I used an overhead fan, not good enough, and a floor fan, too loud, so the small fan near my head was sort of like the perfect formula for me. I realize we all are different, and all have many thoughts at night, good, bad or whatever, but when you make yourself realize it is for your own health, your mind can be convinced to roll with it, so to speak.

    I can't stress enough how relaxing music can be to you, even those that help you feel emotional. It helps you release pent up feelings built up over time. Of all the music I have put in those two threads, there are favorites I will listen to over and over. I selectively listen to how I am feeling. I believe you will get the idea over time. One song in particular is amazing, it is a combination violin/piano by Allison Sparrow playing the violin. She is an accomplished trainer of the violin.

     
  15. paul tinker

    paul tinker Well-Known Member

    Thanks, Dave I will give it a try.