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    • #25999
      Jen Cueva
      Moderator

      When I ask you which words are most difficult for you to say, what would you say? This week in my latest column, I write about asking for help and how difficult this is for me.

      Give it a read and let me know what you think. What are the most difficult words for you to say? Do have struggle with asking for help? Let’s talk about this.

    • #26007
      Rhea
      Participant

      My three most difficult words are “I need rest.” When my husband is working long hours on our farm I feel guilty if I don’t work as many hours as he does. So I keep going and regret it the next day.

    • #26012
      Alfred Gronroos
      Participant

      I need help…. who said that? A 74 year old male veteran? It can’t be me. I have really been struggling with the knowing I have become very limited in what I can do. I still want to be 25. And run and walk fast. But it is not possible now. So hard to tell the nurse leading me that I can not go as fast as she goes. I have always been very independent, raised that way and poor folk so if you needed it done you did it yourself. And now it must be hired out. Life moves on.

    • #26021
      Carol Volckmann
      Participant

      “I need help.”
      Those are the 3 most difficult words for me to say. If I think about it, it really should not be difficult at all. I don’t think other people who ask for help are weak. Actually when someone does ask me to help them I feel they are taking responsibility for themselves and are not afraid to ask for help. I’m learning!

    • #26025
      Colleen Steele
      Keymaster

      @jenc as your columns often do, this one really hit home with me. Loved it! I think the best advice I have heard in a while is your last sentence, ““Another practical strategy is to reframe your request so it’s a conversation, rather than a transaction …”.

      “I Need Help” is a big one for me too. I wish I had a dollar for every time my husband has said to me, “Why didn’t you ask for help?”. I’m also really bad at saying no! I would rather run myself into the ground than to tell people I won’t do something.

      Great topic. It has me really thinking.

    • #26026
      Colleen Steele
      Keymaster

      @rclark I think those living with PH struggle with guilt a lot. To make matters worse, resting when you need to is so important when you have PH. I understand though how hard it is to say, “No, I need to rest.”. Does your husband notice when you are pushing yourself?

    • #26027
      Colleen Steele
      Keymaster

      @cdvol3gmail-com as I mentioned to Jen, “I need help,” is a tough one for me too. I’m trying to learn better habits in this regard too. Like you said, it’s more about taking responsibility for yourself.

    • #26029
      Colleen Steele
      Keymaster

      @alfredjohn I can imagine how difficult a transition it has been for you needing to ask for help more often. I would hope that you are met with understanding, especially from nurses. I remember several times when a nurse was leading us to a room and my son was struggling to keep up. That shouldn’t be. A good nurse will walk at a patients pace, not her own. Thankfully, our experience has been that most nurses are compassionate and will do everything they can to make their patients feel comfortable.

    • #26032
      Dawn
      Participant

      @jenc, ‘I need help’ has been my hardest since far before I got ph. I would do anything I could to help someone else, but find it so hard to ask for help myself. I try to remember how good I feel when I help someone, and let myself accept help in hopes that the person offering gets that same feeling. I’ve probably accepted more help in these past two years since my health issues were diagnosed than in many years (decades) combined before then. It has been extremely humbling to find out how many people care and offer their help.

    • #26053
      Jen Cueva
      Moderator

      Hi @rclark, wow, a farm must be a ton of work 24/7. Do y’all have help? I have another PHriend who lives on a farm, and she shares many pics on Instagram. I am in awe of all that she manages to do. It is a small farm but still looks busy. Is this farm something that y’all have always done?

      I can imagine how “I need rest” is on you when you watch your hubby working. I find myself feeling guilty and pushing myself when I think that my hubby is working too much at home. So, I can only imagine.

    • #26054
      Jen Cueva
      Moderator

      Hi @alfredjohn, yes, this must be frustrating and difficult for you as you notice that you need more help. I find that most nurses would not be running a race and should slow down. I often see at my PCP appt, when the MA comes to get me, she is like 5 mins ahead of me. I often remind those who do not slow down that I am slow. This cue will often slow most of them down.

      I have always been independent and not wanted anyone to help me. These last 15 years have been a test on my marriage as I battled this. But my hubby is the most helpful and caring; I am grateful. Let’s not forget, patient, hehe.

      I find that I need to try and focus on what I can do and the others, I will either get help eventually or let it be. Have you noticed more limitations lately, or has this been slowing trending?

    • #26055
      Jen Cueva
      Moderator

      Hi, @cdvol3gmail-com, that is a great way to look at it. I do agree. I do not find others asking for help as weak. I find that I am grateful to be of help in any way. I am working on this, too. I am unsure if this will get easy for me. Easier, I am hopeful, taking responsibility, and making myself a priority is what I have been working on in therapy.

      Thank you as always, hugs from Texas. I hope that y’all are staying safe.

    • #26056
      Jen Cueva
      Moderator

      Thank you, @colleensteele, for your support as always! I had to laugh when I read about your hubby asking why you didn’t ask for help. I am so like that and hear that all of the time. I find that working on thee things in therapy is helping, but I continue to feel guilty more often than not.

      Just earlier this week, I felt like I had pushed myself. But rather than turn off my phone and rest, I made calls to a few friends and family to check in on them. I later passed out on the couch not long after my night meds. My Hunny often sees the signs when I am over my limit, he warns me, and most often the first warning I fail to listen to. It takes a few hints. But, I do feel that I am learning some to listen more to my body. This is not a constant, so an ongoing battle.

      I was told by my “som-in-love” this week about how all of my family talked about how much I care about others and do not always take care of me first. I have always been the “caregiver” in my family, so this makes things that more difficult. Do you find that in your family, too? I know it probably is at home and with your patents as you are an only child.

    • #26057
      Jen Cueva
      Moderator

      Thank you, @dawnt, I love that you remind me to think about how I feel when I help others out. I need to do this as I do tend to be the helper in my extended family, too. It can be humbling to know how much others want to help and just have no clue how to help. I am often reminded of this part when I have therapy.

      This and resting and knowing when to say No without the guilt is a huge process. Do you find that was as difficult for you?

    • #26059
      Alfred Gronroos
      Participant

      Jen, I was slowly fading away until last Sept. All of a sudden it was a crash. So short of breath and muscles seem to be getting less also. I can hardly carry things becuz the air that I need disappears even with oxygen 24/7.Start to really pant and gasp. Have to really concentrate on pursed lip breathing. My old pcp said I was her toughest patient- so much wrong. My new pcp told me I was lucky to be alive with everything that is wrong with me. Oh well I will just keep plugging away and torturing everyone I can. be safe every one.

    • #26061
      Jen Cueva
      Moderator

      sorry to hear about the sudden crash @alfredjohn. When that happens it does not offer much time for us to process this. As you say, it just is what it is. Carrying things over about 5 pounds is what my previous PH doctor told me to stay under. But, lifting my arms above my head, bending over simple things often “do me in”. I am grateful that I am much better than I was at diagnosis.

      As your PCP tells you, you are fortunate, too. You fought to get this far, I know. You can and probably are still the toughest patient that your previous PCP has seen. That tells us that you do not give ion and as you say, you keep”plugging alone”.

      I hope that you can rest well and find some relief on most days. That itself is positive if that happens, would you agree? Are you pain meds still working well for you?

    • #26077
      Dawn
      Participant

      @jenc, I’m working on being able to say I can’t do something and/or that I need to rest. That’s part of my overall struggle in accepting how my physical capabilities are already changed with ph. Since sharing that struggle here, though, it’s doing better as far as acceptance goes. I keep wanting to believe, though, that I can do what I used to. Sometimes I try to prove I can still do those things, but I pay for it big time afterward. As much as I love being at the farm and around the horses, those few hours each Saturday mean that I pretty much just rest Sundays. Nothing wrong with that, though, so it ends up being a win/win.

      Alfred, your wording struck me. A few months before my diagnosis I said to a friend of mine that I felt like I was just fading away, and they weren’t going to figure out what was wrong in time. I also love your ‘I will keep plugging away and torturing everyone I can’. Whatever keeps you going, go for it! Best wishes for things to get easier.

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