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    • #18432
      Jen Cueva

      I know that many of you deal with exhaustion much more often than I do. I am just wanting to know how you deal with the frustrations and guilt of not being able to do the things you want and need to do.

      I feel like it takes me longer to “ bounce back” and that scares me as well as frustrates me. I know that when we are exhausted that this can take a toll on our mental health as well.

      I know that tomorrow is a new day and I am blessed for all that I can do, I still get frustrated when I can’t! I am sure that I am just having a day and I need to vent and then move on. Tomorrow my daughter and her hubby are coming over to help make our Fam Dinner for tomorrow that we postponed last night because I was drained. I felt guilty for that but when my daughter called she quickly told me that I needed to rest.

    • #18440
      Colleen Steele

      Jen, it sounds like you are blessed with a compassionate family who loves you dearly! I hope you enjoy a wonderful dinner tonight with great company!

      I know my exhaustion doesn’t compare to what you and other PHer’s experience but as a caregiver with some health issues of my own I do understand a bit about what you are going through. One of the ways that I deal with the frustration and guilt from days that I’m not accomplishing a whole lot, is by making sure I mention in my journal every night all the things I did that day. I write about the trip to the supermarket, refilling prescriptions, organizing the pill box for the week, watching a movie with my family, etc.. The benefit of doing this is on days that I just can’t…I go back and read what I had been doing up to that point and it somewhat validates my right to a day of doing nothing!

      I know it takes it’s emotional toll on you but the only thing you need to listen to and worry about when you feel tired, is your body. Those who love and understand, like you husband and daughter, will be there for you when you are feeling up to it, and those who fail to recognize your need for down time, aren’t worth your time.

      I’m glad to hear you took time for yourself yesterday. It’s shows how strong you are by allowing yourself to do that!

      • #18449
        Brittany Foster

        Jen and Colleen,
        I totally understand where you both are coming from with this topic. It can feel really hard at times and sometimes I find myself questioning what I’m contributing and have to remind myself that I DO a LOT for someone that is going through so much. We all deserve the same kindness and compassion that we show others. We deserve to give ourselves the same kindness ! If I only took my own advice a LOT more I feel like I would be WAY better off LOL wouldn’t we all though!? So many people whether chronic illness or not will find themselves questioning what they’re doing, if they’re doing enough, etc. It’s only normal and it gets overwhelming to think about. The journal idea that Colleen mentioned is really great. You should get a journal just for daily reflections of what you DID in the day. Make this a separate journal from the others. I’m going to give this a try too. Even the little things add up!

    • #18453
      Jen Cueva

      Colleen and Brittany, thanks for your support and understanding. I definitely love the idea of my daily accomplishments as you mention, Colleen, it all adds up. I have a gratitude journal that I write in at night. This will be a separate journal. I need to buy a new, cute one,

      I agree with you, Brittany, if only we would take our own advice, lol I know I need to be more patient and understanding with myself.

      My family is awesome and supportive. My daughter cooked most of the dinner. I have a fold-up stool for me to sit as I cut and prep veggies. After dinner, my hubby and family kicked me out of the kitchen again. Lol

      , being a caregiver and having your own medical issues, I’m sure is exhausting, too!

      Thanks to you both for your love and support. I enjoy sharing and hearing more about your perspectives as well. Hugs🤗

    • #18470

      New to group but not the condition, diagnosed about 7 years ago. Just recently returned from a Maine trip that included a lot of walking with the family (spouse plus 4 young children) and it’s incredibly hard. Our kids know daddy gets tired, and the older three kind of know, but the daily effort albeit with my wife’s incredible support, is frustrating. Fortunately, I work from home and can rest as needed. Business travel is off the charts hard, but manage to keep well. I had to learn to take breaks, take support and listen to those trying to take care of me. I did make a nice hike up Acadia National Park (moderate trail) and did feel it the rest of the day. The cold Maine sea water helped the recovery.

      • #18471
        Brittany Foster

        Hi Paul,
        are you from the New England area? I am from Rhode Island and am familiar with the Acadia National Parks. They are quite a hike in some spots. I have been to some of the moderate trails too and couldn’t imagine doing anything more difficult than the ones I did that were only a few miles. I was really exhausted for the rest of the day too. I am glad that you have the support at home but I know that it must be hard to feel like you can’t keep up the same way that you may have once been able to. How old are your children? I don’t have children but I am 28 years old with a 4 year old nephew. It was hard when he was younger to understand my limits, especially when I was on oxygen, but growing up around it he has been really good with it and sympathetic towards illness. It sure teaches them a lot of patience and understanding !

      • #18483
        Jen Cueva

        Hi Paul, welcome,
        It sounds like you have an adventurous and supportive family! I’m impressed with your hike and I’m sure it was exhausting. Although my daughter is grown now, I know that a family requires a ton of energy, it’s often tough and frustrating too, to find that balance.

        I suggest that you enjoy these vacations and making memories as you take breaks for yourself. I’m sure that working from home is helpful although I realize working requires energy and time as well.

      • #18489
        Colleen Steele

        Thanks for sharing Paul. It sounds like you are maintaining a good balance, although I understand you probably wish you could do more. You have a supportive family, you enjoy what you can when you are able and allow yourself the needed rest afterward. You even appreciate what nature has to offer, like the cold Maine sea water. I think what you have shared is a positive example of how living with PH is not easy, but enjoying the little things in life can still be possible. The ability to work from home is a big plus, I know. My husband was able to work from home to help care for my son when he was having a bad day, and now with health issues of his own, working from home relieves a lot of stress. I can imagine how hard business travel would be. How understanding is your employer?

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