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    • #35766
      Jen Cueva
      Keymaster

      Last week, a PHriend texted me. She was annoyed that a close friend said to her, “just breathe,” when they were talking. This was after she asked how she was feeling, so my PHriend was sharing some of her struggles, including an increased SOB and anxiety.

      She was so angry and told me it infuriated her. I think it was because she was already having a lousy day. I have those days, too.

      How do you feel when someone says, “just breathe,” when struggling with anxiety, SOB, or having a difficult PH day?

    • #35770
      ky
      Participant

      Oh NO I am the friend that will say it!!! Although I typically state to “stop, take a Deep Breath” and then follow up with a (hey are you still breathing text later) It might have been the Tone, if she felt dismissed… Being dismissed and not validated when Anxiety is flowing is a fast way to start a fire. Life is so hard and feelings are so complicated I hope your friend calls her other friend and lets them know how it made them feel so this can be fixed ASAP! I usually take the comment as oh okay I need to just breathe because I am fast talking about too many things at the same time… or I am spiraling again.  Anxiety can come on hard and fast I know it does for me and in the moment sometimes I am literally forgetting to breathe..  In the future I might try to say something like hey you can get through this whatever this is … as long as you keep breathing… Thanks for the reminder that everyone has their own perspective and we need to be clear on intention behind our words!

      • #35780
        Jen Cueva
        Keymaster

        Hi @kygon, I can relate to your description of spiraling out of control and anxiety flaring. I often feel guilty and forget I have meds to take if I feel anxiety piling on too quickly. Manny is usually who reminds me to take my Ativan. At times, I bet he could use one, too; LOL.

        But in this case, you mention you tell the person to stop and take a deep breath; that is important in how you approach and word that. I also think it depends on the state the other person is in at that moment.

        If I’m already struggling to breathe and hear “just breathe,” it seems to anger and frustrate me. This is because I feel like I’m trying to do that.

        Again it depends on who says it and how I’m feeling at that moment. Does that make sense?

        • #35858
          ky
          Participant

          @Jenc, absolutely as I was telling Colleen I am going to work even harder to say “I Need you to breathe… ” always working on those I statements. haha

          Sorry I have been absent from the forums for a spell we finally got the awful covid and in my haste to take the best care of Bryan, I got hit extra hard and ran fever for just over 5 days straight and managed to cough till I blacked out …  fun stuff.. (got a little taste of some of what u guys go through every day and I admit I DO not like it one bit, all the aches and not being able to catch my breath for days and i am the biggest baby in the world)  but we are fine it was just a quick reminder to take care of myself … or I cant be helpful to the ones who need me most LOL, Thankfully  Bryan only ran a light fever and slept two days .. no cough no sore throat .. and lucky me he recovered just in time to take care of me aka biggest baby .. hahaha

        • #35865
          Jen Cueva
          Keymaster

          Oh no, @kygon, I hate to hear that COVID has made its way to your house. I hope that you are starting to feel some relief after a horrible and frightening week. Thankfully Bryan didn’t get it too bad but still, it’s no fun.

          Well, it sounds like he recovered just in time to do what you do for him, care for and comfort you in your time of sickness. Please know you never need to apologize for missing here, it’s an open door, and although we worry and care about y’all, we also know sometimes the forums are the least of your worries.

          You bring up an important lesson for us all. Take care of yourself because you “can’t pour from an empty cup.”

          This worries me a tad more because I learned yesterday that a neighbor friend caught COVID. Manny had what we believed was a sinus infection last week. I’ve heard many with COVID lately.

          We all can work on using “I ” statements when communicating more often.

          I’m sending extra light, love, and prayers your way. How are you feeling today?

    • #35771
      Colleen Steele
      Keymaster

      @kygon I think reminding someone who is stressing out to pause and take a breath is a caring thing to do. I often need someone to remind me to do just that. So I think your take is on point.

      However, when I read @jenc question about “Just Breathe” I immediately thought of Cullen’s reaction whenever anyone has “consoled” him with “just breathe” whenever he was struggling with pain or shortness of breath.

      Most aggravating to him was the many times I said it to him. It has slipped out of my mouth during moments of crisis before I could stifle it. When there was a lack of anything I could say or do to help…that was my go to, in the most calming voice I could muster. Oh, but it was so NOT calming to Cullen.

      To make his point, he will still to this day occasionally remind me to…just breathe…when I have a migraine or feel sick in some way. He will smile, ask if that reminder was helpful, then proceed to really help me however he can. Do I find “just breathe” annoying as much as Cullen does? I would have to say yes, yes I do. Unless I’m panicking about something, then you can remind me to take a breath.

      • #35781
        Jen Cueva
        Keymaster

        Hi @colleensteele, Cullen sounds like me; I hate when I’m already struggling to breathe, and I hear this. Most who know me can tell when I’m having more trouble breathing or PH symptoms—hearing that at that moment angers me. I’m like can’t you see that’s what I’m freaking trying to do!!

        Unfortunately, those are usually when all I can do is frown or glare at them rudely because I’m saving my air to breathe.

        Cullen is so funny in things he now does or says to you. The tables have turned. He’s going to be a fantastic healthcare provider of some sort. How has he been with this heat? What about you?

    • #35774
      ky
      Participant

      @ColleenSteele, Yes I can see what you and Cullen are saying, and how you feel! I can even remember being told to just breathe when I was in labor… it was important to do, however it was not really welcomed information in the moment!  (lesson learned I only had One all natural) Perhaps it might not Feel helpful, but maybe it was … I mean he is still breathing after all; right? Perhaps using an I statement would be more productive in certain situations, such as “I Need you to Just Breathe okay”.

      We do our best, but sometimes our best needs a tweak! hahaha. Thanks for the reminder (and for my little trip down memory lane). Communication is something I am always working on!

      • #35776
        Colleen Steele
        Keymaster

        It’s amazing how a slight change to a sentence can change the emotion of it. ” “I Need you to Just Breathe okay”. Excellent advice @kygon thank you!

      • #35782
        Jen Cueva
        Keymaster

        Hi @kygon, I can relate to being in labor with our daughter. Hehe. It was not helpful at that moment; I knew what I was supposed to do.

        I love how you reworded that. I notice that Manny uses that at times. He said recently, “I need you to stay with me, Boo.” I think we tend to learn how to word specific comments over time at those most difficult times. Caregivers and patients both learn from each other daily.

        That’s why this is such an incredible place where we learn daily. We could all use some helpful tips. Life with PH is challenging. I’m incredibly proud to be part of this forum.

    • #35807
      Debbie Moore
      Participant

      I try to stop the person from saying anything with just a hand motion of “stop”.  If they are quicker than I am, I just think to myself – they just don’t know, it’s okay, they care.  Then I can block them out.  It is frightening when the SOB happens.  My daughter is the only one who knows how to react.  She will take whatever is in my hands if I am carrying anything and just wait.  She will not take her eyes off me until it passes. Knowing she is watching comforts me because I know she would call for help if I couldn’t get it under control.

      • #35819
        Jen Cueva
        Keymaster

        Hi @debbie, I like that you use the “stop” hand signal when you are quick enough. Your daughter is concerned and wants to be sure that mom is OK, so she is there comforting you as needed. I love how she takes things you’re carrying and knows the signs when you’re struggling to breathe.

        My daughter and hubby both tend to do this. I often try to pretend like I’m stopping to look at something for a few minutes, but they have caught on to that. Manny and KK usually ask if I need to sit and will find a place if that is something I need. It is so comforting to know that we have someone with us that can call if we need more help.

        My daughter also will say something to any spectators if they’re rude.

        What about when you’re alone? How does that make you feel? I know it’s much more frightening for me, and my anxiety shoots up quicker.

        Thanks for sharing this example, Debbie. I’m so thankful for your daughter and her support. How old is she again?

        • #35874
          Debbie Moore
          Participant

          My daughter is 34.  She has myasthenia gravis, so she’s the one who explained the “spoon theory” to me.  I love how you act like you’re looking at something – brilliant.  I’ll have to try this and see if anyone catches on.

          I’m great alone.  I always have my phone with me. Lot of good that will do me inside my house, but if I venture outside to the garden then it could be necessary.  I have learned to slow down and when to stop.  I know if I feel light headed to check my air first.  I’m a pretty strong minded person, so not much frightens me, and I handle emergencies well.  I don’t think I normally have anxiety problems.  I plan out my day and focus on the tasks.  Anxiety is not on my list.  Are you worried that you will have SOB and not get it under control?  Or another health issue?  I know that God is with me all day, and He can handle everything.  I’ll do my best, and I know what I can’t He can.

        • #35875
          Colleen Steele
          Keymaster

          @debbie I’m sorry to hear that your daughter has myasthenia gravis. How long has it been since her diagnosis? I’m assuming since she explained the spoon theory to you she has an appreciation for it.

          I admire your mental strength and your faith. I am and have always been such a worry wart. I wish I could learn how to check anxiety off my list and keep it off!

        • #35879
          Debbie Moore
          Participant

          @colleensteele She was 22.  It was terrible.  She had surgery to remove her thymus gland, hoping it would put her into remission, but no.  However, she is better.  Her worse days now are better than her best days before the surgery.  She understands and has helped me so much come to grips with having this disease.

        • #35887
          Jen Cueva
          Keymaster

          Hi @debbie, I’m sorry to hear that your daughter was diagnosed with MG at a young age. I’m grateful that the surgery has given her some better days. How did you cope when she was diagnosed?

          I’m grateful that you two can relate and teach each other tips. Your faith shines through in all of your posts. However, like Colleen, I tend to worry more than I should, even after I give it to God.

          You ask about what I worry about when I’m alone. I don’t unless I have an “episode” of some sort, either increased SOB or other and not close to home.

          Thanks for sharing such personal experiences with us.

    • #35892
      ky
      Participant

      Thank you for all the well wishes through our Covid adventure, thankfully we are on the mend .. (I just need to get the crazy cough under control now) Hot tea is my best friend. @debbie, I am so sorry to hear of your daughters illness, I had to google it because I have never heard of it before and it sounds Terrifying!  Prayers for you both! and Prayers for us all in this crazy world!

      • #35905
        Jen Cueva
        Keymaster

        Hi @kygon, I’m sorry that you continue to have that nagging cough after COVID. Hot tea with lemon and honey and a little whiskey or tequila usually helps me at night, especially.

        Light, love and prayers are with you my PHriend. You got that right, this crazy world needs all the prayers we can get.

    • #35918
      Jill Upshaw
      Participant

      It really irritates me, to say the least. I put it in the same basket as the man in the grocery line said” I bet you wish you had quit smoking earlier”. I never smoked. Also in that basket lives the people in the store that act like they will run over you if you don’t walk faster. It is hard for me to be nice to stupid people when I am struggling. Sometimes, I just don’t waste my precious breath……Preservation rules…..

      • #35928
        Jen Cueva
        Keymaster

        Hi @upshtcx, oh my- I relate to these comments and people trying to run you over. It is challenging to be kind when we are struggling and others are insensitive. I love your mindset about not wasting your energy.

        How have you been?

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