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This topic contains 73 replies, has 10 voices, and was last updated by  Charles Nester 4 months, 3 weeks ago.

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  • #16755
     Brittany Foster 
    Keymaster

    Lately I have noticed that my body NEEDS more rest. When I have over exhausted my energy or have done too much through the week, I spend most of my weekend taking longer naps during the day to catch up on sleep or to just give my body what it needs to stay as healthy as possible. During the week (which is a lot busier for me) I try to avoid napping because it can disrupt my sleep schedule at night.

    Sometimes I will take a brief nap of 30 minutes if I have to. After just 30 minutes, I usually do not feel rested and have to force myself to not go back to sleep for a few more hours. The days that I can’t help myself from doing this, I usually end up either falling to bed very early and waking up at the crack of dawn or the witching hours ! Or, it becomes hard for me to fall asleep at all and I end up reading until 1:00 AM before waking up around 6:00 to start my day.

    Do you find it hard to strike a balance of resting/napping/sleeping? Does your body give you warning signs when you are too exhausted and need sleep? How do you successfully nap without it disrupting your sleeping schedule at night? Do you try to avoid naps for this reason?

  • #16769
     Valerie 
    Participant

    Brittany,
    I see many similarities on this topic! Sometimes it’s hard for me to sleep, too, even if I’ve worked hard during the day. It happens that during sleep I suddenly stop breathing and I Wake up abruptly (but this is rare, for example, if I eat a little more food in the evening). I’m trying to fluff the pillow so my head is higher. I tried to sleep on an orthopedic pillow, but in the middle of the night my head becomes heavy, as if “cast iron”, I sleep worse, and go back to my usual soft pillow.
    I never sleep during the day. Even if I am very tired during the day, I try to endure until the time when I usually go to bed. In such cases, I try not to even try to lie down or snuggle in a chair. I paint, take care of flowers, do a leisurely business, not giving the opportunity to sleep. If I fall asleep before my time, I’ll wake up in the middle of the night and feel broken. Especially if I sleep during the day. Sometimes I feel so tired in the evening that my eyes close themselves, and I think I’m “dead tired” literally. I think I now will just shut down and I won’t even be able to breathe.
    I allow myself to sleep a little longer (two or three hours, but no longer) on weekends, this is the only time I get a little more sleep. But I still go to bed at the same time and during the day I do not even allow myself to lie down on the bed half an hour.
    I used to try to fall asleep by reading or watching TV for a while, but the ophthalmologist forbade me to read in bed (due to changes in the vessels of the eyes associated with PH), and the neurologist forbade me to watch TV in the dark (due to migraine). As a result, I just try to do the same actions before going to bed, and go to bed almost at the same time (a little later, to get a little more tired).
    I use a trick I read once: to sleep better at night, you need to be surrounded by light during the day. If it is dark outside even at noon (for example, in winter), I turn on more light. And go to sleep in complete darkness and silence.

    • #16773
       Brittany Foster 
      Keymaster

      Valerie,
      Thank you for sharing all of this information. I really like the tip at the end about making sure that you are around sunlight or some type of light during the day. The dark is what really makes me tired and I am really effected when the weather is dark and rainy outside I tend to sleep more on those days! So there is definitely a lot of truth to that.

      I also try my best to stay occupied when I really don’t want to sleep or know that I shouldn’t sleep or nap during the day to save my sleep for nighttime ! It’s weird because after waking up from a nap if it’s anything more than an hour I actually feel MORE tired than before waking up.

      My sleep pattern could also be disrupted recently because I haven’t used my BIPAP and have been unable to use it for months. It really helped me a lot at night and it gave me more energy and even more color in my face during the day! I would use it something during the day as needed but all the time at night because of my central apnea. I’m sure we have talked about this before, but you mentioned the pauses in your breathing, do you also have sleep apnea? Have you ever been tested for it?

      • #16785
         Valerie 
        Participant

        Brittany, I know what you’re talking about. I wasn’t tested for apnea, of course. But I don’t think I stop breathing when I sleep, I only experience it sometimes when I fall asleep. I think it’s always about some wrong food, so I try not to eat anything at all a few hours before bedtime.
        About the fact that you need more light in the afternoon, I read a long time ago. If I’m not mistaken, if you spend enough time in the light during the day, melatonin is produced better at night.
        If I understand correctly, “BIPAP” is an oxygen machine with a mask? If she’s really helping you sleep, it’s a shame you couldn’t use it for a while. Although I read recently that sleep is not a full relaxation, but as if “a slight decrease in speed”, but it still helps the body to recover.
        By the way, I thought of one more thing. Maybe it’s just a psychological thing. I try not to read such books before going to bed and not to watch such movies where there is a lot of terrible, pursuits, adventures, explosions and other action. Then because of this I have stupid dreams-militants and do not give sleep, lol.

      • #16786
         Brittany Foster 
        Keymaster

        Hey Valerie,
        That is good that you are picking up on some possible patterns that might contribute to your sleeping patterns and your breathing patterns being altered. I agree about the scary movies!!! I definitely can’t go to bed right away after seeing a scary show or movie, especially ones that are psych thrillers that could happen in real life. Not like the ones that I know wouldn’t happen like with zombies and all that LOL that doesn’t really scare me, but the ones that mess with my mind do! Here is some information about bipap . If you want to read more about what it does and how it works for people like me with sleep disorders and breathing disorders during the day and night. it helps with my central hypoventilation which is what contributes to my PH and limited lung capacity.

      • #16879
         V.R. Peterson 
        Participant

        Valerie, when was the last time you had a CBC (complete blood count)? It’s something that most doctors will do at an annual physical. I learned that larger than normal red cells is an indication of apnea. If you test positive for that, the doctor will normally suggest a sleep study.

        • This reply was modified 5 months, 2 weeks ago by  V.R. Peterson.
      • #16881
         Brittany Foster 
        Keymaster

        That’s really interesting information about the blood cells. Maybe because they aren’t getting the oxygen that they need or something? Is this something that showed up on bloodwork for you? Did this prompt an evaluation for a sleep study?

      • #16891
         V.R. Peterson 
        Participant

        Yes, this showed up in my blood work (the MCV part of the CBC), and I had to get a sleep study. It showed that I had apnea, but it’s mild enough the doctor didn’t recommend CPAP.

      • #16901
         Brittany Foster 
        Keymaster

        V.R.,
        I’m sure they will keep a close eye on things though. And I bet you know your body well enough to monitor your symptoms especially if you ever feel like it’s getting worse. I am an advocate for this because I was dealing with central sleep apnea for years before being properly diagnosed and given a bipap and treatment for it and I feel blessed to now have the medical team that I do.

      • #16907
         V.R. Peterson 
        Participant

        And I bet you know your body well enough to monitor your symptoms especially if you ever feel like it’s getting worse. I am an advocate for this…

        Definitely. I’ve got to be a good example for my son, showing him that it’s necessary to speak up for oneself.

      • #16913
         Brittany Foster 
        Keymaster

        V.R.,
        I’m glad that you have that motivation of setting a good example for your son. I always try to be my best version of myself around children because they notice EVERYTHING and really do pick up on our habits and actions both the positive and the negative. So I try to stay conscious of letting the positive side out more around them. How old is your son ? I have a nephew who is almost 5 who sometimes feels like my own child !

      • #16920
         V.R. Peterson 
        Participant

        He’s 30. I have two other children, but the youngest is the one with CTEPH.

      • #16926
         Jen Cueva 
        Participant

        VR,
        Your son is lucky to have such a positive example!

        Brittany,
        I can’t imagine cooking and not even being able to taste it!i tend to taste as I cook, but even my hubby noticed when I’m not feeling great, I dint even taste and cook things , well that’s not my faves, lol .
        Does it bother you or do you mostly cook things that you don’t really love anyway ? I eat great at restaurants, lol 😂 I know you’ll be excited to eat once your surgery is done. Send the snacks your way, right ?

      • #16933
         Brittany Foster 
        Keymaster

        Jen,
        It bothered me at first when my desire to eat food was just SOOOO strong because it was so abruptly taken from me. As the months went on, I just came to accept it and just became numb to it. As the surgery is getting closer though I am starting to get that desire for food and to be able to eat again! Which is a good thing and a bad thing at the same time because now I just need to stay distracted until this surgery date! And YES BRING ON THE SNACKS hahahaha!!

      • #16939
         Jen Cueva 
        Participant

        Brittany, I can’t imagine food being taken away so abruptly, but I’m sure that made it tough at first . You must be doing a great job. By now, I would have a huge list of my fave foods I’ll be wanting post surgery. Definitely private message me the hospital info and your fave snacks, so I can send you a few 😜 when you’re in.

        Just message me the info and some of your faves , lol
        Seriously !

      • #16942
         Brittany Foster 
        Keymaster

        Thank you Jen!
        I will definitely messsge you when I’m settled into a room at the hospital! So great to have such good support.

      • #16908
         Jen Cueva 
        Participant

        I agree with Brittany, we have to be in tune with our bodies as well as advocate for ourselves! I know with some doctors it may be harder than others to make them understand and have them order tests or meds based on our own symptoms. I would say for anyone, don’t g e up m even if you need to change doctors! A great team to work with is a huge blessing, I’m blessed with a great team as well !

      • #16896
         Jen Cueva 
        Participant

        Wow, VK, I’ve never heard that in regards to the blood cells and apnea. I’m wondering if you would have to have a certain level of apnea that correlates with the blood count reading. I’m now going to look at my CBC from last week to see what I can see on my breakdown. I don’t have apnea so I’m thinking it maybe normal. I’m anemic, though !

        Thanks for sharing, I want to read more into this!

      • #16898
         V.R. Peterson 
        Participant

        Jen, anemia is one of the other things an abnormal reading can mean. That would likely be confirmed by other numbers that would also be off. If you’re concerned, you should ask your doctor about all the numbers that are abnormal.

      • #16899
         Jen Cueva 
        Participant

        VR,
        Yes, I see a hematologist ( blood doctor) for my anemia and receive iron infusion therapy several times per year! Thanks for the concern.

      • #16902
         Brittany Foster 
        Keymaster

        Jen,
        I am also anemic and my counts are normally low. It’s considered my “normal” but I do get symptoms. I try to find good iron supplements to take but sometimes iron can be constipating for me.

      • #16910
         Jen Cueva 
        Participant

        Brittany,
        I’m sure you’ve already tried SlowFe then? That was what I was using but I do know most all iron supplements have side effects of constipation. For me, the SlowFe was the best but then my body stopped absorbing oral iron so I get the infusions, which are very costly.

      • #16915
         Brittany Foster 
        Keymaster

        Jen,
        I think that’s what it was. I took iron supplements like a vitamin as a child and it would constipate me a lot. I was given iron in the hospital a few times through infusion and I can remember it burning pretty bad through the IV. Does it burn you? If so, I hope they can dilute it and run some water through with it to get the burn feeling away or make it less.

      • #16921
         Jen Cueva 
        Participant

        Brittany,
        When I have the Iron infusions, it’s at the cancer center. It takes a few hours at the most and it does not burn. I did have one nurse in December set the infusion rate too high and I kept telling them it’s burning.

        Finally , once it was done, the regular nurse came to flush and disconnect and realized the fill-in nurse doubled the infusion rate . That’s why it was burning , but I was done that time in about 30 minutes, not worth the burn! It reminded me of the IV Potassium when they don’t dilute or infuse slowly.

      • #16930
         Brittany Foster 
        Keymaster

        Jen,
        I can relate to the IV Potassium experience. I would much rather drink that bitter and disgusting drink than get an infusion of it ! I would drink a whole cup of the gross drink just to avoid the burning sensation! I’m glad your nurse was able to figure out what was causing the discomfort that time but I hope that other nurse learned for her future patients too!

      • #16949
         Valerie 
        Participant

        V.R., hello!
        It’s very interesting, I haven’t heard about it.
        I even looked at the blood test I did two months ago. It says: “mean erythrocyte volume (MCV) – 81.0 femtoliter (norm 80.0 – 96.0)”. So that’s kind of normal.
        But I don’t think it has anything to do with blood. It is rather related to some food that is unsuitable. I try to eat familiar foods and do not eat before going to bed. So it bothers me quite rarely.
        More often me worries another thing. I wake up and immediately want to get up, because lying becomes difficult. How to describe it… It’s like shortness of breath, only appears on awakening. Like “hard to be in a horizontal position”. If I stand up a little, it goes away. Maybe someone had it, or someone heard about it?

      • #16950
         V.R. Peterson 
        Participant

        Valerie, my son always had trouble breathing while laying down. From what I understand, many PH patients need more oxygen while laying down. Sometimes it helps to put a wedge under one’s pillow. If that doesn’t help, you may want to ask your doctor about increasing your O2 while you’re asleep — or using it while you’re laying down if you’re not already on it.

        My son’s wife is an RN; before he had his PTE (Pulmonary Thromboendarterectomy) surgery, when they would visit my husband and me, she would always get on his case about not laying down because he hadn’t brought his oxygen with him.

      • #16952
         Valerie 
        Participant

        V.R., thanks for the reply. I appreciate that. But I do not use oxygen, I have never been offered and I am unlikely to have such an opportunity. As for the fact that PH patients need more oxygen while lying down – I had a thought about that too. That’s weird, of course. I have an assumption that this is due to the position of the body (maybe the respiratory system is bent, or the heart is pressed by other organs if the person is lying on the left side). But that’s just a theory.

      • #16963
         Brittany Foster 
        Keymaster

        Valerie,
        I just posted a new topic today about this that you will find under the “activity” tab on the forums. Feel free to check out the link from Mt. Sinai hospital in New York about this topic.

      • #16974
         Jen Cueva 
        Participant

        Valerie,
        I, too , cannot sleep or lie flat on my back without having difficulty breathing. I use 2-3 pillows on my couch, often a wedge pillow, too. I am fortunate to now have an adjustable bed, that helps me so much! But I still sleep with 2 pillows , one lumbar and one regular .

        You are definitely not alone !
        Body pillows are also great if you’re a side sleeper , like it seems many of us are .

      • #16961
         Brittany Foster 
        Keymaster

        Valerie,
        I know that you’re not alone in this happening when you are laying down and trying to sleep. This is when my breathing becomes more shallow and for others watching me sleep it seems as if I’m not even breathing (which can of course be scary for whoever wakes up in the middle of the night and sees me sleeping this way) My doctors always recommended that I sleep with a few pillows and sleep at some kind of incline. This helps so that the lungs and ribcage doesn’t have to work as hard to expand when you are in a laying down postion. I can’t breathe well while laying flat on my back. Body pillows or a head rest pillow also helps !

      • #17005
         Valerie 
        Participant

        Jen, Brittany, I completely agree with you both. Another pillow is never superfluous))) As it turned out, such problems with sleep and rest haunt many of us.

      • #17013
         Jen Cueva 
        Participant

        Yes Valerie,
        I know that in the 14 years I’ve dealt with PH, I’ve had sleep issues. I also have met many others who also have sleep disturbances. We tend to use trial and error to see what helps . Hope you can use some of the tips and suggestions as well to improve your sleep. If you are like myself, I find my body cannot function well if I miss my “ beauty “ rest .

      • #17019
         Brittany Foster 
        Keymaster

        Jen and Valerie,
        It’s comforting to know that we are not alone in this. I hate to see people struggling with sleep , like me, but knowing that I’m not alone really helps, especially receiving such great feedback from this community.

      • #16951
         V.R. Peterson 
        Participant

        MCV = mean corpuscular volume. I got the information from WebMD.com

  • #16776
     Emilyrae Helfen 
    Participant

    Valerie. You mentioned that sometimes you wake yourself up because you have stopped breathing. Have you been checked out for sleep apnea? I was found to have sleep apnea in addition to my PAH. My oxygen now comes thru my cpap machine and I sleep so much better. I still nap on most days, but usually it is 30 or 45 min; I don’t get in a sound sleep I just kind of drift. It makes a difference for me. GOD Bless

    • #16777
       Brittany Foster 
      Keymaster

      Thanks so much for your response to this post. I would think of a sleep apnea test if she finds herself waking up and having pauses in her breathing during the middle of the night. Do they think that the sleep apnea is contributing to your PH? It made a HUGE difference for me when I wore my bipap mask and I hate to admit that I actually MISS wearing it because of the benefits during the day. I was definitely less tired and worn down and I woke up feeling rested for the first time in a long time. Seeing the benefits and thinking about how much it helps really motivates me to wear it even though it can be a pain in the butt to have to wear every night. I guess it beats the strain on the heart from low oxygen and not breathing !

    • #16788
       Valerie 
      Participant

      Hello, Emilyrae.
      I wrote above that I was not tested for apnea (I think that if I hint about it, the doctors will look at me as if I’m bothering them for no reason).
      I don’t think I stop breathing during the night. If even this happens during falling asleep, then I long not can fall asleep from-for this, but then fall asleep and sleep already quietly.
      You write that you do not sleep well. I don’t sleep well if I hear something (even birds singing) or if there is some light source (the moon, for example). So sometimes I have to close the Windows and draw the curtains. Also, sometimes some experiences (something like a job trouble) do not give to sleep, or all night dreaming about the boss, giving instructions. I cope with it by means of evening drawings acrylic paints.

      • #16789
         Brittany Foster 
        Keymaster

        Valerie,
        Just reading this too. I really like your idea of coping with painting. Are there certain things that you enjoy painting? I really loved painting in art class in school and loved working with acrylic paints it was as HUGE stress relief and definitely a good way to get your mind off things, especially if you need a clear mind to sleep.

      • #16809
         Valerie 
        Participant

        Brittany,
        Yes, I paint with acrylics, too. I calm down with the help of the texture of the paint and its color (I try to choose gentle and beautiful shades). I just sit and draw and don’t think about anything. It’s very relaxing before going to bed. We now have a very popular “paintings by numbers” (on the canvas, the contour is applied and the numbers are written, which need to be painted in different colors). Even if you do not know how to draw, it turns out a real picture. I don’t know if you have it.
        And thank you very much for the link to BiPap, although I’m not likely to be able to use it, but it will be useful for me to know.

      • #16810
         Brittany Foster 
        Keymaster

        You’re so welcome for the link! I hope that you don’t have to use it, but if there is a time when you do, it does help a lot. I am glad that you found something that relaxes you . I have heard of the paint by numbers set!!! I feel like that would be really relaxing for me and something I would also love doing. I’ll have to order a few. Where do you purchase yours?

      • #16817
         Valerie 
        Participant

        Brittany, I find paintings by numbers in stationery stores, toy stores. Even more choice in online stores. They turn out so beautiful that I feel like a real artist!

      • #16818
         Brittany Foster 
        Keymaster

        This is something I definitely need to purchase before my surgery date! I might even look into it at my nearest craft store, I’m sure they would sell them there. What a great idea and a great way to distract myself. I usually enjoy reading, but lately have needed to do something where I am using my hands to distract myself (like playing video games even though it sounds childish hahaha) But painting is also one of those activities that you have to be actively involved in and takes up a good amount of time. Thanks so much for the recommendation ! I have never heard of these until now.

  • #16778
     Diane Enriquez Chung 
    Participant

    Hey Brittany,

    I actually don’t fight my body’s need for a nap. I know when I am tired or run down from my activities during the day or previous days. So when I feel sleepy, I take a nap. The time varies every time. I try not to get into the habit of napping everyday, but if I need a nap, I take one. I think the longest I napped was 1.5 hrs. Hahah. Most days, even with a nap or even a long nap, I still sleep at my normal time at night. Every once in a while I will have trouble sleeping at night but I know I can’t help it if I had to nap from my activities. I just lay down quietly and then end up falling asleep eventually.

    • #16783
       Brittany Foster 
      Keymaster

      Hi Diane,
      To me, that’s like a super power to only nap a maximum of 1.5 hours. Sometimes I have gone to “nap” and have been so exhausted when I wake up after an hour and sleep another 2 hours. That’s usually when it starts disrupting sleep for me. I try to listen to my body if I’m feeling particularly run down and will allow myself this resting time. Do you do anything to help you fall asleep at night or do you usually just fall asleep on your own?

  • #16796
     VK 
    Participant

    Bad news on my end it feels like it’s a symptom of age. I almost told my pulmonologist that I only slept 7 hours a day until I realized I took a 2 hour nap after work as well.

    • #16797
       Brittany Foster 
      Keymaster

      VK,
      When I used to work full time as a teacher I used to come home, immediately nap and then fall asleep later in the night usually around 11 and wake up at 6. I remember NEEDING that nap though which made it almost impossible for me to get any extra work done after work hours

  • #16832
     Charles Nester 
    Participant

    Does your body give you warning signs when you are too exhausted and need sleep?

    Of course, my body gives a warning when I am too exhausted and need sleep. I entered earplugs to my ear and provide a deep sleep.

    • #16833
       Brittany Foster 
      Keymaster

      Charles,
      I’m glad the earplugs work for your sleep! I need a good pair to muffle the sound of my boyfriend’s snoring hahahaha!!! Do you have a specific brand that you use for ear plugs that work well for you?

  • #16842
     Jen Cueva 
    Participant

    Great topic!
    I tend to need naps some days, even if I try to nap, some days I can’t , as I just rest on the couch with my oxygen and my eyes closed or read .

    If I take naps, I fear I won’t be able to sleep at night. I tend to require varied hours of sleep depending on the day, seasons and just my body needing more vs. less. It’s often tough for me to balance the sleep/ naps as it’s always different.

    For us women, I tend to need more sleep around that time of the month as well. It usually tends to drain my body more, which is expected and my PH Doc has always said , it dies affects other women as well .

    Reading is my go to or a boring no movie, Althing often the light from the tv bothers me and I have to put the volume low, lol . A fan is always helpful for me and of course, wearing my oxygen.

    Great tips and thanks all for sharing !

    • #16845
       Brittany Foster 
      Keymaster

      Jen,
      I agree about the TV lights. My boyfriend and I used to have a TV in the room before we moved into our apartment together and I have a “NO TV in the bedroom” rule. I just don’t like it because I can’t fall asleep to talking. A fan doesn’t bother me and usually out A/C is pretty loud in our apartment which is good and drowns out any noise from neighbors.

      Oxygen and bipap definitely help me get a better night sleep an I wake up feeling more rested and less likely to take a nap during the day. Even though my body has been so tired lately I really have been trying to avoid taking naps and have been keeping myself busy during the day. Staying busy has also helped my mental health a lot too as I prepare for my upcoming surgery.

    • #17194
       Charles Nester 
      Participant

      Yes, I use some of the best earplugs for sleeping. Such as Lab Generated Solid Sleeping Ear Plugs, sleeping earplugs, Big Ear Custom Super Sleeping Ear Plugs, Best Earplugs for Sleeping on Your Side, Big Ear’s Super-soft earplugs for sleeping motorcycles or everyday wear, Super Soft Custom Sleeping Ear Plugs, etc. It’s helped me in napping during the day.

  • #16858
     Jen Cueva 
    Participant

    Lol Brittany ,
    My hubby watches the TV to go to sleep at night , so we do continue to have a TV in our bedroom. I often use my eye mask or turn the other way and have him keep the volume low. Before, I needed it really quiet to fall asleep, now I need some little noise.

    Staying busy during the day definitely helps you mentally and you’re not so focused on your upcoming surgery as well it helps to sleep better , well usually for me. The last year or so, I’ve made sure I have several things on my “ to-do” list everyday so I do not just sit and dwell on things I can’t do or stay online all day, lol . I must feel productive or else I feel worse . Is this how you feel ? Although I know your days are busier than mine.

    • #16861
       Brittany Foster 
      Keymaster

      Jen,
      That’s definitely how I feel too about the productive days. I feel like I have to “do something” with my days and I am NOT one to just rest an sit around. Even on my days when I don’t feel like getting up and actually going anywhere, I still do things like read (and usually end up finishing) a book which makes me feel like I did something, or I write for my columns and write a few extras to save for later weeks or I come onto the forums which is work but also something good for me to do for myself and others. I need to feel like I’m contributing to something.

      Before I got really sick and got my feeding tube placed I was a nanny in the beginning of the day before school and then worked with them after school. It was a great way to break up my day and gave me a lot of purpose to be around the kids especially because before I was on disability I was a teacher. It’s just something about having that drive to get you through the day that is so powerful when dealing with any illness. You have to find meaning or create your own!

  • #16865
     Charles Nester 
    Participant

    Do you find it hard to strike a balance of resting/napping/sleeping? Does your body give you warning signs when you are too exhausted and need sleep? How do you successfully nap without it disrupting your sleeping schedule at night? Do you try to avoid naps for this reason?

    Yes, when I become exhausted my body gives me a warning that I need to rest. For without disrupting I put an earplug in my ear so that the outside sound doesn’t make me noisy at the time of sleeping.

    • #16867
       Brittany Foster 
      Keymaster

      That’s a good strategy to avoid the noise, Charles ! Sometimes I like the sounds of a fan and it actually helps me to get to sleep, other times I need it completely silent. I guess it depends on the day! I used to be able to sleep with all lights on, a night light, closet light, etc. Now I need it almost pitch black in order to sleep.

      • #17345
         Charles Nester 
        Participant

        That’s a good strategy to avoid the noise, Charles ! Sometimes I like the sounds of a fan and it actually helps me to get to sleep, other times I need it completely silent. I guess it depends on the day! I used to be able to sleep with all lights on, a night light, closet light, etc. Now I need it almost pitch black in order to sleep.

        Yes, Brittany as you say that the sound of the fan helps you to get to sleep but not an only sound of the fan also the sound of the clock. It entirely depends on you, if you accustomed to staying in the light every time, so it doesn’t matter.
        Thanks

      • #17353
         Jen Cueva 
        Participant

        Charles, I find that to be true with myself as well. It really depends on the day but a ceiling fan is definitely usually always on.

        Lately, I’ve found I haven’t been able to nap much at all. I think it’s because it’s so bright out, plus when it’s nice I want to get some outdoor time and enjoy it before it’s too hot and humid.

        Hope that you’ll get some rest this week.

  • #16870
     Jen Cueva 
    Participant

    Charles,
    I’ve heard of others using earbuds, I know a friend of mine bought some really nice noise canceling ones to avoid hearing her hubby snore! Haha
    Glad you have found sne hung to help you !

    I’m more with Brittany, the light tends to bother me more now, but I have to have a little noise, just enough to help me get to sleep.

    I feel like a nap now , but I know it’s too late so I’m trying to stay awake until after my night meds. This is often my issue as well , plus I woke up earlier than usual this morning . Some days if I still still long enough, my body goes in and I just fall asleep. Do y’all notice that as well if you’ve overdone it?

    • #16872
       Brittany Foster 
      Keymaster

      Jen,
      I definitely notice when I have overdone it. My body usually starts to ache and I can feel the first signs of effects on my immune system. Usually I know when my body needs to extra rest because I will end up waking up around 9:00 AM. I am usually up by 7 almost every morning so if I slept a few extra hours it is my body’s way of telling me that I needed it. I also develop swollen glands when I am pushing myself too hard. Staying active but not to the point of overdoing it has always been a difficult balance to find.

      • #16874
         Jen Cueva 
        Participant

        Brittany ,
        I also notice that my body aches quite a bit when I’ve overdone it! I think today, the cause is I woke up a few hours earlier than usual plus I needed to do a few errands. I bet tomorrow I’ll sleep in a little later , unless my body just wakes itself up before my alarms. ( you know our bodies aren’t always cooperative, lol )

        This staying active and resting is another tough balancing act for us as well. Some days I feel like we should be in the circus with as much balancing we do, hehe

      • #16877
         Brittany Foster 
        Keymaster

        Jen,
        At this point I could definitely be my own circus act hahahaha!!!! Sometimes I feel like it when I go out in public to some places with my oxygen lol I should just start doing weird things like juggling for people or practicing handstands and really draw a crowd hahahah. I can just imagine it!

        I hope that you were able to get some more rest today and were able to sleep in a little later. I know that my body has some sort of internal alarm clock back from my days of being a teacher so I am always up so early! The weekend I usually try to catch up on some sleep though (I almost have to force myself to)

      • #16894
         Jen Cueva 
        Participant

        Haha Brittany,
        I’ve told my family the same thing ; at times I feel I’m a circus act, the oxygen, wheelchair at times and people tend to gawk! I feel like I’m an exhibit, lol

        Thanks, I did sleep better and didn’t wake up until almost 9, so that helped plus I haven’t been as busy as yesterday . I could take my time waking up and getting dressed. Some days I feel like the faster I try to rush , the slower I am.

      • #16900
         Brittany Foster 
        Keymaster

        Jen,
        Rushing around tires me out so much too! It’s a lot! The morning routine takes a lot of energy from me. I have been trying to save my showers now for the end of the day because they always leave me feeling like I could sleep right after. I’ve been trying to be more scheduled with my days and planning tasks out for myself and it has helped me a ton. I was never that great with time management but I’m working on it in order to conserve some energy too.

      • #16905
         Jen Cueva 
        Participant

        So true, Brittany!
        I tend to make a half day when I shower, shampoo, and dry and straighten my hair. My family laughs when I said, “ it’s shampoo day “ . That’s usually a “ pj” day and I take breaks in between each step. I don’t think so e realize just how much energy it takes to shower and get dressed some says!

        Time management is great, I have a list on my desk with daily tasks and I also set timers often on my phone to go to the next task or I’ll rest a tad then move to the next task. It helps to conserve energy although at times when making dinner, my hubby tells me to slow down. I rush so I’m done and can rest and often at times can’t eat much by that time. That is something I’ve been working on so I can eat once I’ve cooked.

        Ohh I’m not sure if I told you , but I love the Yoga with Adrienne videos. I’ve been trying to do one twice per week, even adapted versions , but enjoying it! Thanks for sharing !

      • #16911
         Brittany Foster 
        Keymaster

        I’m glad you are learning to time manage too! We certainly are in this together ! It’s all avout learning as we go and taking advice from others too.

        I’m similar to you in the fact that I usually don’t eat what I cook (well right now you know that I’m not eating anything at all and being tube fed) but even when I could eat. The only time I would actually enjoy what I was eating was when it was a crock pot meal that my boyfriend made or when it was cooked at a restaurant or by my parents lol! I think a lot of people are like that though, when they are the chef sometimes they don’t feel like eating it. Lol

        I’m glad you are doing those yoga videos ! She is the best and I love her silliness and dedication at the same time. She just seems like a cool person too.

    • #17401
       Charles Nester 
      Participant

      Charles,
      I’ve heard of others using earbuds, I know a friend of mine bought some really nice noise canceling ones to avoid hearing her hubby snore! Haha
      Glad you have found sne hung to help you !

      I’m more with Brittany, the light tends to bother me more now, but I have to have a little noise, just enough to help me get to sleep.

      I feel like a nap now , but I know it’s too late so I’m trying to stay awake until after my night meds. This is often my issue as well , plus I woke up earlier than usual this morning . Some days if I still still long enough, my body goes in and I just fall asleep. Do y’all notice that as well if you’ve overdone it?

      Jen, this noise canceling earbuds must help you to go a deep sleep. As you say that a little noise is just enough for your get sleep. I think this noise canceling earbuds must help you in this field. The light tends to help me to get up from sleep. But now when I go to sleep, I give a shred of cloth on my ear. Jen give me some most excellent idea so that I become able to avoid the light tends?

  • #17047
     Randolph Reynolds 
    Participant

    Hello again:
    Now that I am on oxygen full time, I must rely on friends or my wife for transportation. Staying home I find that I am very anxious to get out. My night sleep has been terrible since I was put on a Remodulin pump. The site pain often gets too much to let me sleep unless I take a lot of medication. Recently that has gotten better as I was prescribed for an anti-depressant that tends to help and if I can stay ahead of my site pain by use of a mild pain medicine I sleep soundly. The backlash is that about two hours after I get, up unless I stay busy. I may get drowsy. How do you wake up from any sleep without the fact of your disability suppressing your motivation? Kind of a double edged sword.

    This forum has been informative and I am grateful for the inputs. We all wrestle with our demons.

    Randy

    • #17053
       Brittany Foster 
      Keymaster

      Hi Randy,
      you bring up a lot of really interesting points here. Sometimes it is really hard to stay motivated especially when we lack the energy or feel like we didn’t get a good enough sleep. Something that I try to do to stay motivated is make a list of things to do the next day. Having some sort of checklist (even if it’s something that you think is simple ) will get you up and out of bed. I’m always more motivated when I feel like I have something to “do” and it helps me get my mind off of how I’m physically feeling. Distractions and staying as busy as possible have been a huge part of what keeps me going. I guess you have to find that “thing” that makes you want to get up in the morning and motivates you.

  • #17159
     Charles Nester 
    Participant

    After a hard working at the day when I am going to sleeping my mind doesn’t give me the permission of sleeping. I am so tired but exhausted so much.
    I don’t know why?

  • #17165
     Colleen Steele 
    Keymaster

    Charles, in my opinion bedtime is when everything seems to become magnified. The mind has trouble resting, especially after a hard day of work or school. This is something that most people experience to a certain degree, but when you add physical stress (illness) to the mental or emotional, then sleeping becomes even more challenging.

    At night my son’s PH symptoms always seemed to worsen. Possibly this is because as he quieted himself down for the night he would become more completely aware of how he was feeling or how much he might have pushed himself too far during the day. He could be utterly exhausted yet not be able to fall asleep, which would then contribute to more napping during the day. I’m sure this sounds familiar to you and the others who have contributed to this topic. Charles, has your doctor ever recommended Melatonin to help you rest more soundly?

  • #17266
     Charles Nester 
    Participant

    Collen, I really feel better to know something to you. Yes, Melatonin must help me.

  • #17272
     Colleen Steele 
    Keymaster

    Charles, I hope you have enjoyed some better rest since your last post. Melatonin has helped my son in the past. Please make sure you check with your doctor first before taking it. Have a nice weekend!

  • #17344
     Charles Nester 
    Participant

    Colleen, as I know, the melatonin helped age-wise, and you say that it helps your son in the past. So I want to tell you that you don’t take any risk. You must contact a doctor at first. Haha! It’s really a great week for me. Thanks to all the best.

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