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    • #32090

      Hi Everyone, 

      I was recently invited to be a guest on a podcast for another rare disease community. There were four guests total, representing various rare diseases and the topic we were discussing was mental health and chronic illness. This podcast topic was particularly focused on women for this week, but a lot of the advice can be applied to all patients. You can listen here.

      One of the questions we all contributed an answer to was about advice. More specifically, we were asked what advice we’d give someone who is newly diagnosed with a chronic illness to take care of their mental health. Our replies were so varied, but they also overlapped on a few different themes. I look forward to highlighting those themes and sharing the advice I gave in an upcoming column on PF News.

      My question to our forums community: based on your experience with IPF/PF, what advice would you give to someone wanting to prioritize or take care of their mental health? 

      Has anyone shared a piece of advice with you throughout your journey with IPF/PF that was particularly helpful?

       

      I look forward to hearing from you!

    • #32143
      Steve Dragoo
      Participant

      I would urge all newly diagnosed or longer-term to know it is a physical and mental struggle but you are not alone.

      Few, maybe even close family, understand our disease. Knowing that means we can get closer on our forums and share, share, share, – read, read, read, and engage. Even during the tough times don’t give up – that leads nowhere. Sometimes you will even get better for a while, smile and move faster when that happens. There are many supplements that may help you, research, investigate and try them carefully.

       

      If you are a Christian, walk closer to God. If you are not a Christian walk closer to God.  We have a hope and a peace that passes understanding and we can share it…

      • #32309
        denise anton
        Participant

        Beautifully stated! Thank you and may God bless us all. Find strength in His Divine Mercy! 🙏🏻❤️🙏🏻

    • #32145
      Kathleen Ryan
      Participant

      Support groups like this are so helpful to me!  I think that counseling should be a consideration.   I often feel guilty about talking to my son about my disease.  I don’t want it to define our relationship. It’s a tricky road for me.

      • #32153
        Steve Dragoo
        Participant

        @kathleen

        Hi Kathleen,

        I know what you mean, I try to explain to my wife from a “what’s coming perspective” but it is mostly only us here that know the true inside story. Grief has 6 general stages so I cover it by prayer, reading the Bible and knowing I have this great Hope…

        Stay well…
        Steve

        • #32159
          Kathleen Ryan
          Participant

          Thank you, Steve.  Good to know we all have this group and God!

      • #32192

        Hi @kathleen,

        Thanks for sharing your mental health and chronic illness advice following my post. I agree with you; counselling would be a piece of advice I’d share with others and encourage them to give it a try as its so hard to navigate our feelings in the presence of our friends and family members sometimes. Sorry to hear sharing with your son is hard for you, and I hope that relationship remains strong.

        Kind regards,
        Char.

      • #32367
        Brenda
        Participant

        I too, feel that I share too much with one of my sons. My husband died 5 years ago so he’s really been a help to me. He also goes to my Pulmonary doctor appointments. I feel like I  have to try to make my breathing seem normal around friends. It sounds silly but adjusting to this diagnosis is hard. I am on oxygen. My number drops to high 70’s to low 80’s when I have to stand and walk. I do go to physical therapy. My therapist keeps in touch with my doctors because she thinks my oxygen should be raised. Good luck with talking to your son. I think you have to when none of your friends understand this disease.

        • #32368
          Kathleen Ryan
          Participant

          Brenda, thank you!  It’s a balancing act at times. It’s not silly trying to adjust to this new way of life.  For me, it’s a daily task.  I’m glad your son is involved. It’s not easy to accept help, but it’s good to know we have someone. Good luck!

    • #32277
      Tonya Worley
      Participant

      I am late as usual lol… I am still trying to figure the forum out as far as the notifications so I will not miss the new posts it seems I still am late or I just accidently run up on a post such as this one.

      So many illnesses affect us emotionally and it can throw any dormant mental health issue into fast forward if they had mental health issues prior to the chronic illness diagnosis and/or chronic illness in itself with someone that has never had mental illness issues can precipitate a newfound mental health diagnosis/issue.  The words chronic and/or terminal at best most assuredly can create grief, frustration and stress leaving the perfect platform for a mental health breakdown and/or breakthrough even, therefore, any person dealing with such Chronic and/or Terminal illness needs to “check themselves” to make sure there aren’t any mental health issues unchecked iyswim.

       

       

    • #32300

      So true Tonya, I can imagine many others can relate to this post like I can! It almost seems impossible to me that a diagnosis like this can’t erode some mental health difficulties so its so important to take care of ourselves and each other! Thanks for writing and keep in touch.
      Char.

    • #32303
      Phil Ryan
      Participant

      Surprisingly, I have never had any mental health issues as a result of IPF.  Since I’m in the last years of my life at 76, I may have had more difficulty with it if I were younger.  We’re all mortal, even though some don’t seem willing to accept that.  IPF just gave me more clarity about how much longer I have.  That means, get your affairs in order, clean out the clutter to save someone else from doing it, buy something nice if you can afford it since you don’t have a lot more years to support yourself, etc.  Finally, look to your religion for solace and support.  (I was quite surprised that Noah Greenspan’s recent book does not once mention religion.)

      • #32334
        Gordon B Sandmire
        Participant

        I’m pretty much in agreement with you. I too, at 81, am in the final stages of my life and it hasn’t affected me much mentally. I am grateful to have lived this long and feel more sorry for those much younger having to go thru this horrible disease.

      • #32342

        @philipryan

        Hi Phil,

        Thanks so much for sharing your thoughts on this topic, and for your insightful perspective. I know some people will find it comforting to read your words for sure 🙂
        I was the facilitator for Noah’s new book and we discussed religion a lot. There are some references to it of course in some of the chapters written by authors who are very religious but because the book is intended for anyone, we had to be really careful with our mentioning of religion to be inclusive to all. Thank you for reading it and we hope you found it helpful!
        Char.

    • #32320
      Debra Lowder
      Participant

      Trying to keep that healthy balance between acceptance and being thankful for “good days “, is a challenge. Each step (like needing oxygen for the first time), brings a new level of acceptance  that things will get worse. All families are different, but I think mine is typical in that some members are more accepting than others. It’s frustrating when some family members are still in denial and have not accepted the inevitable. My challenge is with my husband of 11 years. I am a “young ” 68 year old, and I’m dealing with intimate issues in my marriage. It’s hard to tell when my spouse is disinterested in intimate relations because of his age, and when it’s related to my IPF. He  treats me like a delicate flower and doesn’t touch me like or as often as he used to. I know I am blessed that I still have a spouse, but I would love for things to remain the same for as long as possible. Of course he always says “nothing has changed ” but I feel that it has.

      These are just some of the mental health challenges that everyone with a terminal illness must face, but as my uncle said recently, we’re all terminal.

      There’s one thing that we all seem to agree on, and that’s faith. I’m extremely blessed in that I have walked with the Lord all of my life, and answered His calling when I entered the teaching profession. I  got to enjoy an amazing career before I got sick. I think the worst thing at this stage, would be to have regrets about one’s life and choices.  Maybe younger people might read this and decide to make a life changing decision while they still can.

      I appreciate this forum and the amazing job that you do, Charlene. We are truly thankful for all the hard work you do keeping this site meaningful and relevant. God bless you in your journey, and keep up the good work. You are definitely answering His calling.

      Sincerely, Debra.

      • #32339

        Hi Debra,

        Thanks for contributing your thoughts to this thread. It certainly is hard to find that balance of acceptance and being thankful; it’s a process that sometimes I feel like I’ve done well and other days not at all. Everyone processes things differently, do you think you and your husband could work through it with the help of a counsellor? None of us should really be expected to figure this out on our own. Full disclosure: I am a therapist so I’m a bit bias in terms of how helpful it can be, but just a suggestion.

        I’m so glad you have found comfort in your faith, that is important on this journey and I know many others have as well. Thank you for your kind words; I would never have picked this path for myself but I appreciate the opportunity to provide support to others. Take care of yourself and thanks for writing.
        Charlene.

      • #32346
        Phil Ryan
        Participant

        I note that Noah’s new book seems to have no problem discussing yoga and meditation.  So why the concern about religion is still beyond me.  On another note, I missed any discussion on healthful procedures on supplemental oxygen.  When I received by first concentrator, the delivery person made no mention that (1) the intake areas should be cleaned periodically and kept free of dust, dog hairs, etc.  If not, you’re just breathing that into your lungs.  Also the cannulas should be replaced regularly.

    • #32400
      Nina Merendino
      Participant

      Being a mental health therapist myself in private practice now for 15 years and 42 years as a psych nurse and a licensed mental health counselor I feel that anyone whatever age with a chronic illness or debilitating illness needs to live as they say in the moment. When I was first diagnosed in 2018 with interstitial lung disease or what they said was IPF, of course I was very upset because I had no symptoms at all. The first the first pulmonologist said that I had to have a lung biopsy on the operating table, then I had to quit smoking and that was about it. I went and saw the thoracic surgeon and he said you don’t have lung cancer but we think you should have a VAT. I’m sure you all know what that is. However my father was a famous thoracic it open heart surgeon and I did not want to get an operating table because there’s always a chance you can die. So I refused and then I decided to go to the University of Washington to the Interstial Lung Clinic and had even more trouble. Of course I had the breathing test and all the other nonsense as well as Broncoscopy with taking long tissue out and also that device that measures acid in your stomach that you wear for 24 hours. It seem like my doctor wanted me to have pulmonary fibrosis. I am not kidding. I also have fibromyalgia and anchylosis spondylitis which causes me pain all the time, I don’t sleep well, but when I found out in 2018 that both of my lungs were fibroid that they had ground glass and opacities , which I never would’ve known if I if my doctor hasn’t thought I had pneumonia. There are days that I wish she’d never gone that chest x-ray and other days when I guess I am glad. However they took a great toll on me in terms of thinking about dying just about every day. I live alone used to be incredibly active, dancer still and seeing my clients but I decided after I asked my dogs RTW how long I had left to live, and he said he’ll probably last until 2026 then I decided it’s time for another doctor. Who could possibly know the year you’re going to die ? Did you thousand 18 when I found out that I had interstitial lung disease decided to refinance my house and put in Swim Spa. It was the best thing I have ever done for myself in my life. I work out aerobically in the pool without pain every day, Swim, and ever since I bought the Swim Spa and had a new pulmonologist at Swedish hospital, who told me he has no idea how long I have to live because there’s so much research being done etc., that he just said Nina live your life! And this was after having the pulmonary breathing test again and actually I’m normal . I think a great deal has to do with the fact that I am breathing and swimming all the time at least every day for at least 30 minutes. He also thinks that even though I was a smoker for 40 years so this is not caused by my smoking but from the anchylosis spondylitis which is a rheumatoid disease. So now I’m waiting to get on another biologic which I don’t look forward to to see if that will slow down or stop the fibrosis in my lungs. So my new Doctor Who was trained by the University of Washington doctor said I don’t have pulmonary fibrosis or IPF but I’d interstitial lung disease whatever that means. So in terms of having his chronic may be fatal disease I’ve totally changed my outlook on life . I am less aware of how my lungs feel or worrying about my lungs I just do the best that I can every day and that’s it. I work out in the garden I just do everything I possibly can and I think that’s how all we should live especially those with chronic illnesses and I have three. I don’t feel sorry for myself I’m gonna be 69 in a couple of weeks and I’m grateful for the life I’ve had even though it wasn’t the life I’ve necessarily dreamed of. I guess because I have listen to so many horror stories of adults and their childhood and how it’s a fact that I’m on grateful that I escaped so many possible things have happened to other people. So I guess I just tell my clients you do have chronic illnesses to just keep on going and if they can’t go then rest but don’t berate yourself if you can’t there are days when I am extremely tired and I need to take a couple of naps other days when I feel like I don’t have that disease and I can actually walk through Walmart . So I guess I’m just telling all of you to be grateful you never know when research will bring a cure for those that have gone through long transplants you’re braver than I am because I just never would do it. I think my two sons who are 39 and 32 are feeling much better because I am feeling much better about my life . If you have children you don’t want to worry them and because I have the wrong lives and they shouldn’t have to worry about their mother they already lost their father. So that’s it, Nina

      • #32412

        Thanks for sharing your story with us, Nina! I’m glad you sought out a second opinion from another doctor as well as I was shocked to read one actually gave you a year you’d likely live until – that’s absurd in my opinion. Glad the second doctor was so helpful and that you proactively took care of yourself by doing things like putting in the swim spa, that’s amazing. If I could afford it, that would certainly be something I would install as well, as I love to swim and I think it would be amazing for my lungs. I hope you had a great birthday coming up and thanks again for taking the time to share your story with us.
        Take good care,
        Char.

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