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    • #15133

      This past summer I felt the need to write a Pulmonary Fibrosis News column on finding happiness and joy despite living with idiopathic pulmonary fibrosis (IPF). Navigating a chronic illness isn’t easy for anyone, especially when the disease limits your ability to breathe; a very basic need for survival. Today I am in a bit of a sad place emotionally: it is grey and cold outside (and has been for days), I’ve been dealing with pain, nausea and I’m preparing to go to yet another funeral this afternoon. This time, it is for a 5-year old I knew and loved.

      As a result of feeling this way, I recently spent time reviewing my column on finding happiness and gratitude despite IPF. In that piece, I reminded others about the importance of focusing on little things that make you happy and I need to follow my own advice today. Some of the tips in my column are easy to implement into your day, and I will be focusing on doing the following to help lift my mood over the next few days:

      1. Write in my gratitude journal: no matter how tough things get, there is always something to be thankful for. In order to find that however, you may need to dig deep inside your mind or really reframe your situation. I know I can do this today because despite feeling crummy, I still have fresh water to drink, a warm bed to crawl into and a roof over my head. In addition to this, there are many other things I can add to my gratitude journal to be thankful for.

      2. Practicing mindfulness: sometimes I need to slow my mind down to really focus on what is important. On my drive today I will try to do this by putting on some good music and just letting go of all the thoughts causing me stress or anxiety.

      If you read my column here, I’ve listed other tips and ideas to help you find joy and gratitude despite IPF. Some days it is harder than others, but it is always possible.

      How do you find gratitude, joy and happiness on your tough days of living with IPF/PF? 

    • #18052
      Katie Bagshawe
      Participant

      Charlene, how tremendously sad for you having to deal with a funeral for such a young person. That can’t have been easy for any of you and I totally understand your negative mindset with all of this.

      I recently started a new job that involves working in Radiology and sometimes I come across sad cases in the Emergency Department, one minute we’ll be dealing with a patient on the table in the scanner and the next we’ll hear news from the medical team that they died shortly after. We have such a short interaction which I guess helps in coping, but last week we dealt with a major car collision whereby three teenagers were killed. It’s stuck with me for a few days so I’ve realized that it has affected me and have actively tried to find ways in which to move on.

      Like yourself I journal and have religiously and successfully written in my diary every day this year. I write about simple things like the weather, how I got to work, where I parked and the people I worked with. I learnt this from my Dad who did the same for years, mostly out of interest to reflect but I’ve found it a great way of expressing situations and cases I’ve dealt with without having to have them floating around my head for too long.

      Mindfulness is also brilliant. I drive to work so actively listen to music I love or find podcasts that interest me as it helps with the journey. I read where possible and take the time to slow down, make myself a cup of tea and if at work, do the same for my colleagues so it reminds us all to slow down and not get too stressed or wound up with difficult cases. I’m trying to be more active at hobbies such as knitting, sewing and getting back into swimming so that my life doesn’t totally revolve around work. It’s a work in progress!

      Mostly, I think we all have to accept that there will be difficult days and surrender occasionally to feel blue. My favorite thing to do when down is put my favorite PJ’s on, grab a tub of popcorn and sweets and watch an old favorite film or TV show (I can’t tell you how many times I’ve watched Gilmore Girls!). I do it as a little promise to myself that I can wallow for an evening, but then tomorrow I have to find a way to feel better and to get out of my mood. That usually helps me feel better for having allowed the emotions to roll over me but not allow them to consume me in the same instance.

    • #18078

      Hi Katie,

      Thanks for connecting on this topic, as always, it is lovely to hear from you.
      Yes, saying farewell to the beautiful 5-year old has been tough … of course, not near as tough on me as it is on her family but not a day goes by that I don’t think of her when I look at her photo on the fridge or framed in my living room.

      Thanks for sharing your experience, albeit very sad with the teenagers who died last week! It is never easy to say farewell or know that such young lives ended far too early. When this happens, it is important to find successful coping strategies or it can eat away at us. I like your idea of journaling the daily interactions of your job. I used to try to do this in a gratitude journal but I just found it too difficult to keep up with it regularly, although I truly love the idea of reflecting on one positive thing you’re grateful for each day…

      I also appreciate hearing about letting ourselves just feel the blue days! I try to give myself grace when this happens, because I find it is worse if I try to subdue it but sometimes I feel guilty for having difficult days. I need to remember about the importance of feeling those blue days, so thanks for sharing what you do during those tough days. I love curling up and just watching TV, and doing so with the attitude that ‘tomorrow will be better’ is important.

      Thanks again for connecting.
      Charlene.

      • #18271
        Katie Bagshawe
        Participant

        My Dad always felt the same with his down days, but myself having lived with depression ever since I can remember, it’s absolutely important that some days you have to accept you can’t fight the blues and just let them weigh you down a little bit. Of course it’s vital your life doesn’t always feel so down, and you find positive mechanisms to cope with these subdued periods, but equally it’s exhausting always trying to frame things positively or to force yourself to feel something that you just can’t. If he was having a bad day I would always tell him, it’s just one day. By tomorrow you might feel different again, and it’s better to believe tomorrow will be better than it will be worse. I’m sure it’s the same living with PF, some days he felt physically better than others and it is never a straight line, it’s a rocky road going up and down. I think even on the down days a part of you will believe it can be better than this, so as long as you have that thread of hope, you can feel a bit down all the while knowing that the next day will be a new one to enjoy.

        Journalling, writing, hobbies and all sorts are always going to be good distractions as well as active coping, encouraging yourself to stay active, to stay informed of your health and how you can ease symptoms. When I did my Psychology research I looked a lot into the coping mechanisms we have instilled and how it can go good but equally how it can go wrong. I did start writing a blog entry for a website about this but alas never finished it. I’ll break it down a bit below if it helps though.

        Active vs Passive Coping

        So, you might already be able to figure it out but there is a theory of coping called Active vs Passive. Someone who actively copes with a circumstance adapts by physically and emotionally finding ways to cope. This could be by altering tasks to make them easier to do, seeking new habits that can improve health or planning ahead better such as facing financial uncertainty so stowing away a bit of money. It could be seeking out information, attending support groups or even actively not completing tasks knowing it could make things worse. Passive coping is the opposite, it’s basically a bit like burying your head in the sand or even just giving up and accepting things without trying to make your life easier. As you might guess, the former is considered a better tactic than the latter, but it’s open to interpretation and of course varies depending on the circumstance on which we cope. This method is usually looked at when assessing chronic ill health, usually mental health as well but of course can be something to consider when looking at how you adapt to facing a diagnosis of PF, both as patient and as carer/loved one. I’ll attach some journals below for you to read if it’s interesting, but hopefully it might encourage a bit of active coping knowing this will benefit you more when adjusting your lifestyle and routines.

        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466354/

        https://healthskills.wordpress.com/2011/04/05/what-is-coping/

        • #18309
          Mark Koziol
          Participant

          Hello Kate, I have only been a part of this group for about a month but I can tell you; you are an integral piece to this forum. Your research based suggestions and compassion show through on all your posts. The suggestions for dealing with depression can and will help many of our members who are going through this. Thank you again for being a part of this forum. Mark

        • #18324
          Katie Bagshawe
          Participant

          Thank you Mark! I was fortunate in my time acting as a Carer for my Dad that I was able to study a Masters of Science in Psychology and focused my dissertation on the Psychological Impact of Pulmonary Fibrosis whereby I interviewed patients on the mental health impact. Learning about Psychology also helped me understand my own mental health a lot better so it feels less of an enigma, and more something medical that I can approach. I heartily recommend doing some studies in this area as it’s such a broad and interesting topic. I hope to continue my research in the future, I start a Diagnostic Radiographer course from September and hopefully will pursue research into Interstitial Lung Diseases from both a diagnostic and psychological point of view. Fingers crossed.

          This is an interesting blog to find easy reading about Psychology topics. I’ve written a few articles from them focusing on Health Psychology.

          https://www.psychreg.org/

          https://www.psychreg.org/katie-bagshawe/

           

        • #18327
          Mark Koziol
          Participant

          Thank you Kate for supplying the website link, I am sure this will be helpful to many of our forum members and readers alike. Mark

    • #18098
      Donna Murray
      Participant

      Hi, Charlene — You may not remember me, but I’m Marsha Harris’s sister, and I read the PF News because I want to stay connected and learn as much as I can about the disease Marsha has.  I suffer from COPD which is of course also progressive but not as rapidly as IPF.  I simply am moved to tell you how much you bring to everyone in this community.  It’s so important to remember that sadness is a part of all of our lives, and when we live in the moment some of those moments will be blue.  You are a joy to the members of this community and your work to keep this a vibrant site is appreciated.

       

    • #18169

      Hi Donna ( @djmurray )

      Of course I remember you, thank you so much for getting in touch with me! How are you? Marsha has been such a wonderful addition to our forums community, I am so glad she’s here and really appreciate you re-connecting with me and your incredibly kind words. They truly touched my heart on a tough day, as I’ve been at a funeral the last two days so thank you so much lifting my spirits with your words! Please let me know if I can ever be of any help in this journey you’re on or Marsha is on, we truly are better when we work together. Sending big hugs to you, and thank you again for writing.

      Charlene.

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