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    • #30254
      Dawn
      Participant

      Something I find myself doing lately, really since my ph diagnosis and during the search for answers prior to the diagnosis, is ‘apologize’ for the changes I’ve seen in myself. Not having the stamina for more physical work that I used to have, the tiredness/exhaustion when I push things more than I should, feeling like I’m not as dependable to help someone out as I used to be due to the physical changes of ph. I tell myself I didn’t cause the ph, nor the other medical issues found during the search for a diagnosis, and there is nothing I could have done to avoid the major issues found. I know with physical activity now there comes a point where I’m just ‘done’, where before ph I could do many hours and I’d be tired – but not to the level that I get to with ph. I apologize for not being able to do what I used to do, for being even slower than I used to be, and for feeling that I’m letting down those who’ve depended on me for certain help in the past that I can’t do to the degree I used to any longer.

      Have anyone dealt with this? Or currently dealing with this? I’d appreciate any input.

    • #30257
      Jen Cueva
      Keymaster

      Hey there @dawnt. I am happy to see you post. This is such an important topic. Although, I hate that you are struggling with this. I have also found that I am constantly apologizing for being sick, slow, tired, etc…

      I work hard to apologize, but it is an ongoing struggle for me, and I bet many others. When I find that I am apologizing a lot, my anxiety kicks in full force.

      Reminding myself that PH and my limitations are not my faults takes a bit of positive self-talk and affirmations. Have you found anything that helps you?

      I know several columnists have written about this topic. Brittany wrote about this topic in an older column.

      Bailey has CF and here she writes about this.

      I am hopeful that knowing that you are not alone will help. Dawn, this is such an important topic; thanks for posting.

    • #30265
      Colleen Steele
      Keymaster

      @dawnt I blame society quite a bit for the way many of us, like you, feel the need to apologize for our limitations. Society makes us feel like we have to give 100% all the time and never drop any of the many balls we find ourselves juggling. I’m hoping that if anything is to be gained from the epidemic experience, it’s that it is ok to slow down and that we need to be more mindful of what is going on in the lives of others.

      I’m sorry you are feeling the need to be apologetic for things you can’t control, or at least you shouldn’t try to. Rest is so important. Pushing yourself does more harm than good when you are living with PH.

      You are very understood here and any time you are feeling this way, let us know. We will support you and help ease your mind.

      • #30273
        Jen Cueva
        Keymaster

        Well said, @colleensteele. I do agree with you. Society wants us all to go, go, and go some more. Even those without PH and other medical conditions feel this at times.

        Interesting that you mention rest. The next column that I am currently writing will be centered around rest. So, stay tuned for that.

        Just this morning with therapy, I was reminded again that self-care is not selfish, and I do not need to prove or apologize to anyone. My body requires that extra bit of care, just as yours, @dawnt.

        I realize that caregivers go through this, too, @colleensteele. Do you think Cullen is older that you find that you are not apologizing or taking that extra time to rest?

    • #30268
      Dawn
      Participant

      Thank you @jenc and @colleensteele. It definitely helps to not feel alone, knowing that others have dealt and do deal with this. I do pay for it when I ignore how tired I am, or can tell by how I’m feeling that I should slow down/stop what I’m doing but I don’t do it. As I’ve mentioned in other postings, I’ve always prided myself on my physical strength and ‘work ethic’. It’s hard to see that changing. I still have the willingness & desire to do what I used to, but the absolute exhaustion I feel when I push too much makes me feel like I want to sleep for days.

      I feel sure it’s part of the cycle of accepting the changes caused by ph & other issues, then feeling it’s more than I want to accept. Fighting against something I can’t change, but need to remember that I can adapt to.

    • #30274
      Jen Cueva
      Keymaster

      @dawnt, I can feel that pain and know it is so new to you and your strength and “work ethic”. I must say that although our physical strength may be lacking, we make up for it by being so strong in other areas. One area is the strength that we deal with daily to get ourselves motivated and moving throughout the day.

      You mention work ethic. I, too, have always prided myself in that area. When I was first diagnosed and not working at all, This broke my heart. But I must ways, working with the people at BioNews, who owns PH News, I work with most rare diseases, and their work ethic has been huge compared to most that I have seen.

      I wanted to share that to let you know that often, those of us who have disabilities and health issues tend to work harder to “prove” ourselves. I bet that you can relate to that, too.

      I am sorry that you are hurting and dealing with so many changes. PH comes in like a tropical storm and keeps on pushing through.

      Rest, take care of yourself first, and the rest will fall into place. Yes, that is all much easier said( or typed) than done. PH does these things, but you will adapt, and once you do, you will look back on these difficult moments and remind yourself that you pushed through. Pushing through may mean resting more, but finding that new norm is difficult, especially when we realize how much things change.

      We are here to support you through this difficult time of change and adaptation. We all have been through these changes, and at this stage, you got this. Let us know how we can best help you. Have you talked to your therapist about the difficulties with accepting these changes?

      I do know that your depression will creep in easily, so take care of yourself, please. We care about you.

    • #30282
      john huebner
      Participant

      My experience mirrors Dawn’s, but I’ve tried not to apologize and simply explain my limitations—when the situation calls for it—to family and friends. And yes, it’s frustrating, but most everything about this disease is frustrating, but do we really have the luxury to give in to the annoyances? I’ve tried to work on acceptance in order to maintain my sanity.
      All the best to all of you,
      JJ

      • #30289
        Jen Cueva
        Keymaster

        Hi @johnjhuebnergmail-com, I can respect your approach. Explaining our limitations, although frustrating, is the best way to get it out there. Have your friends and family accepted these limitations, or do you find that they, too, may have a difficult time with acceptance?

        We do have to work hard to try and accept our new norms, which may be ongoing. But without acceptance, we will lose our sanity. Thanks for sharing your perspectives on this topic, John.

        How are you doing?

    • #30284
      Laura
      Participant

      I certainly understand about feeling the need to apologize. It’s almost impossible for someone who doesn’t have PH, or another disease that causes such tiredness, to have any idea what it’s like. You never know if tomorrow is going to be a good day or a bad day so you don’t want to promise to do anything. You may be going along fine and then just hit a wall. You have to sit down right this minute. For me, it has helped sometimes to tell people where they can find information about PH, and if they do look online, they are surprised and more understanding. Being old doesn’t have all that many advantages, but at least being 75 means I’m retired and not expected to be as energetic as I used to be. Just hang in there and remember it takes even more energy and determination to deal with PH than anything you have done before.

    • #30290
      Jen Cueva
      Keymaster

      Hi @haggis4648, so true! If someone does not have PH, it is difficult for them to understand our limitations. We do often do well, and then, bam, that wall, as you mention, pops up.

      You mention you are 75 and retired, so people don’t expect you to be energetic. I guess, that is one positive for being retired. But, I must say, I have met some in their 70s and 80s who are running circles around me.

      PH certainly does require much of our energy. That is an important reminder, too. I am happy to see you posting. How are you doing?

    • #30293
      Dawn
      Participant

      Thanks so much for the replies! Although I’m sorry that each of you are in the position to understand what I’ve been dealing with, I appreciate hearing from each of you.


      @johnjhuebnergmail-com
      , you reminded me that we really don’t have the luxury to give in to the frustration of ph – as with many other frustrations in life. I’ve done very well working with acceptance of many things in my life, so I can extend that even more to ph. I’ve said from the time of my diagnosis that I don’t want to give in to ph, but live my life as much as I can without letting it take more than I have to…it will do what it will do, but that doesn’t mean I need to just hand over my independence, activities, etc. I can accept what comes, but not just give over to ph any more than what it takes on it’s own. I hope that makes sense.


      @haggis4648
      , you hit exactly what I was speaking of. I’ll be feeling pretty good, then seemingly all of a sudden I’m exhausted and just done. I need to remember, too, as you said, that I’ve never dealt with ph until the past 3 years. It does certainly take energy and determination, and it is a day to day thing of what kind of day it will be. Even on the ‘off’ physical days, I can still refuse to give in to ph by resting and taking the best care of me that I can.


      @jenc
      , as always, you are a great supporter! I am upfront with my therapist about my struggles with ph, and we’ve discussed some about my feeling I need to apologize, but it’s something I expect to discuss more in depth as well. It’s not the first time I’ve dealt with the apologizing too much for things I really don’t need to apologize for in therapy (ha!) so I’ve got a head start at heading this episode off some. It’s such a relief to be able to post here, honestly and openly, and find that I’m understood. I tell my family most of what happens with my ph, but don’t get too detailed about how exhausted I can feel or how the oxygen issues make me feel at times. I don’t want to worry them, and I don’t want them to feel they have to be checking in on me every day. I don’t feel like I’m at that point yet, not at all, but do get frustrated with the changes I see in myself from ph. It’s my choice, though, whether I let ph win by making me focus on what I’m losing or whether I hold tight to the control I have over ph to focus on what I’m still able to do. I’m choosing to focus on what I get to control, which is my attitude. I’ll have slips, I’m sure, but feel free to give me a nudge from time to time when I forget – a BIG nudge if it’s needed.

    • #30294
      Colleen Steele
      Keymaster

      So many deep, heartfelt responses to this topic. I’ve re-read what all of you have shared, @dawnt, @jenc, @haggis4648, @johnjhuebnergmail-com, and I just hope and pray that you have special people in your lives who recognize the conscientious, compassionate and brave people that I’ve come to know in these forums.

      I know many of us cringe when people call us brave but you know, it does take bravery to step out of your comfort zone in order to take care of yourself. It takes strength not to become emotionally strong armed into pushing yourself beyond your physical ability. It’s hard…I know it’s hard and I’m so sorry for the struggle it causes in your life.

      My son was a child when he had PH so his situations were different but the end result was the same…slow down as needed or force himself to keep up with everyone else. On the last day of his 8th grade year the class celebrated with fun outdoor activities, which included events like the traditional tug of war between the 8th grade and 7th grade classes. Cullen went to school that day with plans to push himself to participate, but he quickly realized there was no way. He had been on the transplant list for almost a year at that point and there was just no way he could be that active. I took him to the school office and we sat there crying together.

      When I read what you have all shared I think of that day and feel deep sympathy for how your limitations are affecting you.

      • #30309
        Jen Cueva
        Keymaster

        OMG, @colleensteele, I just cried reading about Cullen and his last day of 8th grade. I would have been sitting there with y’all crying too. As a kid, I did remember those days and looked forward to participating.

        Although Cullen was unable to do as he hoped, it sounds like even back then, he knew his limitations. That, to me, is impressive.

        I know with post-transplant life, he continues to have limitations at times. How does he do with this? Has he ever apologized for being sick? He is such a strong and brave young man.

        Thanks so much for your support, kindness, and compassion. You are such a heartwarming co-moderator that I am fortunate to not only work with but call a friend.

    • #30308
      Jen Cueva
      Keymaster

      Oh, @dawnt, please do not hesitate to post here anytime you need some support. We are always here.

      This statement, “It’s such a relief to be able to post here, honestly and openly, and find that I’m understood. ” makes my heart happy. When we share and are most vulnerable, it not only helps us but others, too.

      Just as you posted this topic, and so many have posted and can relate. Thats brave. It often takes a lot at times to share our deepest thoughts and concerns. So, know that you are never alone. I am so happy that you find it comfortable here and a safe place to share your concerns with others.

      Yes, a huge group hug is coming to each of y’all.

    • #30321
      Terry
      Participant

      Not to sure about apologising for being ill but I’m getting pretty bloody tired of having to say ‘Sorry mate can you give me a hand I can’t do such and such any more’ or ‘am I puffing again? Or ‘what was that?’ I can’t hear what you said I’ve gone a bit deaf due to the drugs I’m on .’ Or to a young’un because of the those crickets in my ears all the time ‘Talk slower I can’t understand a word your saying ‘ Mind you as far as the talking too fast is concerned I reckon this young generation are developing a new language so us oldies can’t understand what they are saying . I feel sorry for young cashiers when I have to ask them repeat how much. They probably think I’m a stupid old man . Ha I think I am and I don’t care anymore. I was with my grandsons this morning having a meal after a sail and in the end I had to tell one of them to talk up , slow down and speak proper english FGS. I feel like Pa Kettle out of Li’l Abner most days .Don’t tell me , most of you lot are too young to know the comic . Now where is that corn cob pipe I need a smoke and a lie down.

      .

      • #30333
        Colleen Steele
        Keymaster

        @terry I am too young to have had the opportunity to enjoy the comic strips but I have watched the old Li’l Abner shows with my dad. Thank you for that image, it made me laugh! Anyone with a witty sense of humor like you have is far from stupid. I bet you make people smile everywhere you go!

        • #30338
          Terry
          Participant

          Aww Colleen mate I’m not trying to be anything but a normal bush aussie bored coping with this horrible affliction . Actually I’m pretty wild today. Just got notice the kangaroo insurance premiums are going up. We have a big problem with kangaroos kicking in front doors of an evening attracted to the lights inside hence the need for insurance. Its all caused by the advent of ipads etc and few people now buying newspapers so those kangas that carried the papers in their pouches and sold them on street corners are out of jobs and roaming the streets causing trouble. Those pictures advertising cuddly kangaroos are actually Wallabys to attract the Chinese tourists. Red Kangaroos stand over 6 foot. Here is a photo of Roger the Kangaroo https://www.google.com.au/search?q=roger+the+kangaroo&ie=UTF-8&oe=UTF-8&hl=en-au&client=safari
          Actually before I got this horrible PH I used to throw a saddle on a big red I had in the back paddock if he was in a good mood and hop into town to my part time job as a bananabender . You know bananas grow straight on trees and for spending money we retirees put the bend in them for a better grip when eating, Don’t you? I’ll tell you one day the story of when I was chased by a hoop snake. Na I talk too much.

    • #30322
      Terry
      Participant

      Oops ,should have said is not are in my previous post.

    • #30323
      Carol alexander
      Participant

      Yes I myself apologizing for no t being able to do certain things like walk at a pace to keep up. I feel embarrassed every day

      • #30346
        Jen Cueva
        Keymaster

        Hi there @carol-alexander; it is great to see you posting. But, I hate to hear that you are feeling embarrassed and need to apologize for your health. PH and other coexisting illnesses make it tough to do the things we once did.

        We may be slow, but as long as we move, I take that as a plus. Baby steps, my PHriend.

        How are you feeling lately, @carol-alexander? Again, it is so nice to see you post. I have missed seeing you and your contributions here.

    • #30332
      Colleen Steele
      Keymaster

      Oh no @carol-alexander, I hate hearing that you feel embarrassed every day. I wish there was something I could say to make you feel less that way. Our members here understand what you are going through, so if anything, just know that you are not alone.

    • #31009
      Jen Cueva
      Keymaster

      Hey @dawnt, how are you doing? I have missed seeing you here. I hope that your mental and physical health is stable.


      @carol-alexander
      , how are you doing? It has been some time since I have seen you post.


      @terry
      , you have not been checking in either. How are things going for you?

      We want to be here and support you all. Often we need a break. If that is why you have not posted, just letting us know that you are OK is enough. But we respect your time away as needed, too.

    • #31336
      Jen Cueva
      Keymaster

      This is such an important topic that I wanted to follow up and share this with those who joined us later.

      Also, how are you doing, @dawnt, @johnjhuebnergmail-com, @terry, @haggis4648, and @cdvol3gmail-com? How is your mental health? Are you learning ways to stop apologizing for being ill or your disease in general?

      I know so many times, I do find myself apologizing for many things. Being ill is a major one. Once I catch myself, I try to stop the negative talk and remind myself that there is no need to apologize.

      Stay tuned for my upcoming column this week as it relates to this topic a bit.

    • #31354
      Dawn
      Participant

      Hi @jenc, I’m doing pretty well. I just said to my therapist today that I’ve not been apologizing as I was for quite awhile. I still feel like I ‘should’ apologize at times, but I’m getting much better at catching myself.

      I tried to reply to your mention about still volunteering with the horses, but keep getting the message ‘your reply cannot be created right now’. I am still volunteering, and won’t give up being around the horses unless/until I would have to. Also in that thread were the portable concentrator posts. I recently tried the new inogen g5 because it has a higher setting than the portable I used before switching to tanks. It didn’t keep me in the 90-100% range, so I’m still on tanks and a recent walk test had my dr change me from 4lpm to 6lpm.  I actually had a rhc at Johns Hopkins two weeks ago, and my lung pressures dropped 6 points!! So blessed that the medications are working.

      • #31365
        Jen Cueva
        Keymaster

        Hi, @dawnt, I am sorry that you are having issues posting. Next time, try signing out, clearing all cookies and caches, and then refreshing and log back in if you have trouble. IDK what is going on, but I, too, have had issues, not with this site but others.


        @ripple76
        was having posting issues recently, too. I will let the IT guy know.

        I am happy that you are doing better with not apologizing. Ib saw my therapist today. It has been months since I saw her. She was impressed with some progress that I have made with boundaries.

        I also am grateful that your pressures have dropped some. I am sorry about the increase in oxygen. I hope that the increase helps to drops your pressures a bit more and helps your symptoms.

        Thankful to hear that you are continuing to volunteer with the horses. I know they are so dear and loved by you. Our new member, @indihomaaol-com, also has a love for horses.

        Thank you for sharing your update. I miss seeing your posts. Are you keeping busy working?

    • #31370
      Randolph Reynolds
      Participant

      This is a curious question but I have only apologized to my wife about what PAH has done to my energy and outlook on life.  Her reply is simple, you can’t live in the past, the future is not in our control so only the present is where we live.  I do envy people who are free to continue their lives as normal, or at least as normal as the pandemic has allowed.  At times I get angry.  My social skills, such as they were, suffer because I also deal with a sort of depression that brings on anxiety about things that wouldn’t matter in my younger life.

      However these responses indicate that my feelings and limitations are not exclusive to me.  One thing that has been evident is that I am more open to talk about them than I used to be.  Generally men don’t do that however I try to draw out what’s going on with my other male friends.  It is a different life.

      Thanks for the discussion.  To Jen and Colleen for keeping me in contact.

    • #30318
      Colleen Steele
      Keymaster

      aww @jenc you know I feel the same way about you! Crazy how we have become such close friends yet we have never met in person!

      This is going to sound funny but I think the only limitation I ever hear Cullen complain about is not being able to eat sushi anymore. That is a no-no post-transplant. He really misses it. Other than that he is so focused on staying as healthy as possible that restrictions don’t phase him. Even before the epidemic, if he felt like a large, crowded gathering would put him at risk of catching something, he would opt out. He has to be VERY careful in the sun and he is good about that too. Covers up, wears sunscreen and opts out if the sun is too strong. Those are some examples.

    • #30343
      Jen Cueva
      Keymaster

      Oh, @colleensteele, yes, you know that feeling, too. I am beyond grateful to have met you and so many others here in our forums. It is so amazing working with people who connect and want to help support each other.

      Funny, you mention sushi. I never was a fan of sushi until the last 5 years or so. I can see how Cullen misses that, especially if he gets a craving as I do for it.

      He sounds like such an awesome young man. He seems much older by your stories. I am grateful that he is careful and knows his restrictions. That can be tough, even for us older folks with PH.

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