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    • #29431
      Colleen Steele
      Keymaster

      In my recent column I describe living with PH as a paradox between hope and despair. There were so many good things in our lives but just as much bad because of the disease. It’s hard to recall exact moments of experiencing a happy medium. Hope and despair felt like a way of life. I was also working full time and raising two boys which made finding a middle ground even harder.

      As a PH patient or caregiver, do you feel like life has become a paradox between hope and despair? If so, how do you balance them out?

    • #29440
      Carol Volckmann
      Participant

      Interesting question. Never thought about living between hope and despair before but you’re right. Thinking about it I do live between hope and despair. To be candid, I am not sure I do balance them, certainly not well. Thank you Colleen for bringing this up. I need to work on finding a balance and more on the hope side. Thanks again.

    • #29450
      Jen Cueva
      Keymaster

      Wow, another column that gave me all of the feels, @colleensteele.

      Like @cdvol3gmail-com says, I need to balance a tad better, lol

      I think that we all teeter between hope and despair; depending on the day, I am more prone to feel despair. But little moments are what helps me have hope and keep PHighting. Maintaining a balance between the two would be idea, not sure what mode I am in at this second. Do y’all find these changes throughout the day at times?

    • #29507
      Jill Upshaw
      Participant

      Definitely trying to find a balance every day. I think my energy level has a lot to do with it. If I wake up and want to get up quickly for some reason other than the bathroom, it is usually a better day. If I just want to lay there and have no energy, the days are more of a struggle. I try to get enough rest and do things that produce energy. Some days PH controls me way too much. Some days, I feel that I have more control.

      • #29511
        Colleen Steele
        Keymaster

        @upshtcx just know you are not alone with this frustration. You can’t force balance when you are living with PH. You are forced to become a go with the flow type of person whether you are normally like that or not. Whenever my son forced himself to do something he would end up paying for it with extra days on the sofa, forced to relax. It’s best to listen to your body but I know how emotionally difficult that can be.

    • #29545
      carol keilty
      Participant

      Yesterday was a really bad day. My husband and I went shopping and I didn’t realize how humid it was or that it was going to get me. I have had it get to me so bad in the store that I get a panic attack which is very embarrassing for me or anyone I am sure. My husband got me out to the car and I started thinking how last summer was for me. I wasn’t even able to go outside. I got down so far that I get thinking of stupid things and how everyone involved with me would be better without me. I was feeling sorry for myself which sometimes takes over and hare to pull myself out. I think I will see if I can get something for my nerves. Have any of you done that? get medication for those days when you can’t get stupid thoughts out of your head? Today I was able to do some things around the house but when I am in that low state I can’t be content to do little things. I like to paint and that keeps me busy but when I am like that I can’t even think about creating something. Anyway just one of those great topics you guys I love how you think. thanks for listening

      • #29550
        Colleen Steele
        Keymaster

        Oh @carol I am so sorry to hear you have been having a hard time lately. Many of us have had struggles with anxiety too and can sympathize with what you are going through. I tagged you and added your question about anxiety medication to a topic @jenc started because it’s such an important topic. I hope members jump in and offer their experience.

        I started medication for anxiety 7 years ago when my son was listed for transplant. It helped! It helped so much I decided to continue taking it to this day. I would recommend discussing this with your doctor and maybe you could benefit from seeing a therapist as well. They can be very helpful.

        Keep us updated on how you are doing. You can confide in us any time. If bad thoughts keep happening I have sources I can give you for help. Please don’t let them linger.

    • #29554
      KRISTINE
      Participant

      Hey all,
      Hope and Despair? That is a really good topic. I teter back and forth. I started out trying to be positive to make the most out of the time on I have on earth. Well, it ended up being easier said than done. Sometimes facing and dealing with the entities and berueacricies that a person has to deal with is enough to cause feelings of despair. For myself I just arrived at a point where I just had to let go and stop allowing that stuff that I had no control cause so much stress and anxiety. Not much has changed other than I just take the hits as they come and no longer try to fight it.So I guess the only thing that has changed is me and the way I deal with certain things.

      Thanks hoping maybe someone will be able to take away the thought to just let go if anyone is bothered the way I was.

    • #29555
      Terry
      Participant

      I can only share what has helped me remain positive ,calm (most times) and accepting the last seven years having Prostate Cancer(Robotic Surgery) Mega Giant Cell Arteritis, LAD Stent ,Bilateral Hernia (Lapasco …..)and last but not least PAH. In fact it has been my ‘go to’ the last forty years even though sometimes the resulting action may seem selfish and cold hearted and that is the AA prayer .
      ‘Grant me the Serenity to accept the things I cannot change’ (So I have PAH, cant change it so don’t fret over it)
      ‘The courage to change the things I can’(adapt my life to to make life easier, not carry on about it, question what the experts say to get best outcome for me and most of all BE HAPPY ,I’m still alive .)
      ‘The wisdom to know the difference’ (Can I realistically change it, take it back or make things better ?YES ,well do so. NO ,well get over it.
      Ha ,Guess when I gave up the booze .

    • #29559
      carol keilty
      Participant

      Thank you for the help. I don’t do too bad it’s just when the days are humid and that happens a lot in our neck of the woods and that’s when I get down. It has started earlier this year then other years and caught me off guard. I will ask my doctor about something to help with this but today I got a reprieve we got snow and it’s cold. Lot’s of people really hate that but I find it calming I know I won’t get caught unguard today. I will keep watching and talking it helps. thank you so much everyone for your ideas

    • #29562
      Colleen Steele
      Keymaster

      I so appreciate your responses @kristine and @terry. It helps all of us to know that the struggle is real and we are not alone. I do believe using the Serenity prayer as a form of meditation can help build acceptance or at least encourage some emotional peace. Great suggestion!


      @carol
      it’s good to hear you aren’t always struggling but when you do it is for good reason. We get it and are here for you any time you need a PHriend(s). Enjoy the snow! I’m quite fond of the white stuff too.

    • #32176
      Colleen Steele
      Keymaster

      I don’t know about you, but as the weather changes it sometimes has an effect on my mood. Autumn especially makes me feel nostalgic and with that comes some memories of both hope and despair.

      So, I thought I would bring this topic up again. What are you despairing about these days and what is giving you hope?

    • #32185
      Jen Cueva
      Keymaster

      Hi @colleensteele, the weather certainly does affect my mood. Like you, fall is more nostalgic. But for me, I think this is because I recall Halloween-themed birthday parties as a child. It always is one of my favorites times of the year.

      In finding a balance between hope and despair, I think the fall season reminds us that things change. The changing colors of fall, the weather, and the falling leaves remind me that we are not stuck in one season for long. I tend to refer to specific life periods as seasons as I know a new season will soon follow if this season is difficult.

      I don’t think I answered your specific question. But hope that I did not confuse you as I typed this before my morning coffee; hehe.

    • #32193
      Colleen Steele
      Keymaster

      @jenc you are spot on! I too refer to different phases of life using Fall terms. As you know, I actually love Fall but it just doesn’t stick around long enough for me. I want to hold on to it and without getting too deep, I can connect that in many ways to life too.

    • #32201
      Jen Cueva
      Keymaster

      You get it, @colleensteele! I was hoping that I did not confuse you with my writing before my morning coffee yesterday hehe.

      Yes, the fall season never lasts long enough, but that too is true with many phases of our lives.

      Do you think that being your birthday is in the fall makes it more nostalgic for you?

    • #32211
      Colleen Steele
      Keymaster

      @jenc I’m sure being an Autumn child plays a part. A song I listen to a lot at the end of October is Barry Manilow’s, “When October Goes”.

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