This topic has 8 replies, 5 voices, and was last updated 11 months, 2 weeks ago by Charlene Marshall.

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    • #14028

      Regardless of what disease you’re dealing with, having a chronic illness is mentally exhausting. This was true for me following my own diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016 when worries, questions and anxieties were swirling around in my brain making it nearly impossible to sleep. While this has calmed down considerably, and I am better at managing my illness overall; it doesn’t mean that I don’t still have days that are mentally exhausting.

      On days where my mind is really full of information or questions pertaining to IPF, the first thing that suffers is my ability to sleep well. Due to IPF being such a physically demanding illness, the last thing I want to compromise is my sleep and unfortunately this seems to be happening more frequently lately. As a result, I’ve been exploring different ways to help my mind settle, especially at nighttime. Some of these tips have worked for me, while others haven’t but I thought I’d compile a few of them here in the event they are helpful for someone else:

       

      • White noise apps: this has actually been very effective for me! There are a number of white noise applications that can be found on our smart devices (iPad, phones, etc.) which are deliberately intended to help us with sleep by focusing our minds on unstructured noise. Most recently, I’ve actually used a fan beside my bed for this as opposed to an app, but the apps have been helpful for me as well.
      • Journaling: this is an ancient mindfulness practice and one that I hadn’t tried until just recently. Now, I keep a small journal beside my bed and spend ten-to-fifteen minutes writing in it before bed. This is in an effort to “let go” of my thoughts before turning off my light and trying to sleep. I intentionally write things down that are on my mind, and then focus on not thinking about them when I crawl into bed because I’ve left them in my journal. That way, the thoughts or ideas are written down if I need them for reference, and I am not at risk of forgetting.
      • Meditation: this is the tip I am least familiar with, however, it has proved successful a few times to help me sleep when my mind is continuously racing as I am lying in bed. While there are hundreds of different meditation techniques, what has proved helpful for me is to just imagine myself in one of my favourite places, and focus on the five senses I’d experience if I really were there. Usually I put myself on a beach somewhere tropical, and block out any other thoughts so that all my energy goes to the place I am thinking of.


      Do you have any additional tips to share about settling your mind or calming your thoughts in order to promote a better sleep? 

    • #14060
       Sheila Blanchard
      Participant

      Hi Charlene,my family Dr. gave me a prescription for Trazodone Hal for relaxation so I could sleep(since then have also been diagnosed with severe Sleep Apnea) have found this to be helpful, ask your Dr. if this could help you. So sorry you are having this problem I know it’s hard when dealing with IPF

      • #14066

        Hi Sheila,

        Thanks for your reply and contributing your thoughts on this topic. It certainly is a tough one, because I am thoroughly convinced that the physical aspects of this disease is not the hardest of them all. I find the mental and emotional exhaustion harder than the physical “stuff” so far! When my mind races, I get quite upset because I can’t compromise my physical health by messing up my sleep so it becomes this vicious cycle. Next time I meet with my family doctor, I might have to have a conversation about a prescription medication, as you’ve suggested. Thanks again for letting me know this, and wishing you well.

        Charlene.

    • #14067
       Sandra Koenig
      Participant

      For me this works. I grab my iPad and play games. Usually they are the video games such as casino reels. There is something about the repetitious reels spinning that makes me nod off. It’s mindless play and as soon as I start to feel like I’m about to nod off. I put my iPad away, turn off the light, connect to my cpap and oxygen and it’s nighty-nite.

    • #14071

      Great idea Sandra! I’ve heard that you’re not supposed to stimulate your eyes with electronic “lighting” by looking at a screen when you’re trying to sleep, but I’ve also heard a lot of people say that certain apps or games tire them out mentally. I should give this a try, seeing as it works for you – thanks for the suggestion 🙂
      Hope you’re doing well, and thanks again for reaching out and writing to us!
      Warmest regards,
      Charlene.

    • #14261
       Susan Howitt
      Participant

      I play *games* also, I am a night owl by nature and rarely go to bed before 2am. I sleep fairly well for about 5 hours. I also play some games to try and keep the old grey matter working as I am very aware that I cannot concentrate for long and seem to be losing the ability of hand/eye co-ordination. Am I making excuses and it is just old age catching up?

    • #14267

      Wow Susan, you don’t go to bed before 2 am? I don’t think I’d function the next day and definitely not on 5 hours sleep. I don’t think it is old age, because I am still pretty “young” and I can’t function well on little sleep! Hand-eye coordination, and focusing for long periods of time is lost on me since my diagnosis. I find it really hard now, along with following multi-step processes or instructions…. kind of embarrassing really!

      I just started a new medication to sleep and I took one on Friday, seemed to work really well and then forgot them at home this weekend so tonight will only be my second night on it. Hope it helps me with sleep initiation, as thats what I have the hardest time with. I’ll keep you posted if it works 🙂

      Cheers,
      Charlene.

    • #15835
       NanaJane
      Participant

      Hi Charlene –

      I use a smart phone app called CALM.  It provides guided meditations, white noise choices and music but my favorite piece is the Sleeptime Stories section.  It offers a large variety of 30 – 40 minute stories narrated by folks with calm, quiet voices.   You choose the story you want, snuggle into your pillow and covers, start the story, lock your screen, put the phone on the bedside table and close your eyes.  As the story progresses the volume level decreases.  When the story ends your phone turns off.  I rarely am still awake to hear the end of the story!   It also worked beautifully on my grandchildren on Christmas Eve  LOL !

    • #15854

      Hi NanaJane (I love the screen name by the way 🙂 ),

      This is really helpful information to know – I’ve not explored the use of apps yet to help with my sleep, because there are so many it can get overwhelming. However, I will definitely try the CALM one you suggested. I think listening to a story that fades away could be really effective in getting me to sleep, I’ll download it tonight and give it a try I think. Glad it also worked on your grandchildren Christmas Eve – it’ll be helpful to use in the line of work I do as well, so I’ll share it with my colleagues.

      Much appreciated!
      Charlene.

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