This topic contains 14 replies, has 3 voices, and was last updated by  Jen Cueva 2 months, 3 weeks ago.

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  • #19373
     Jen Cueva 
    Participant

    I realize living with PH on it’s on, is tough. Planning ahead is not easy. We have to remember plans can change rapidly. Some days I’m less productive than others, this is expected living with PH.I’m sure y’all can relate.

    I’m more that ” type A” personality in this areas. I have always preferred organization and planning. Keeping an agenda is beneficial to me, to hold myself accountable.

    Despite dealing with my illnesses, I’ve learned that if I make a plan for my week, I feel more accomplished. I have a small ” to -do ” list calendar and I try to add at least one thing that I hope to do. Some weeks, I have more appointments than others. Those weeks, I add-in my yoga, meditation, calls, it maybe just taking in some Vitamin D.

    Although it may sound minuscule to others, this is effective for me. Feeling accomplished can be complicated with PH.

    Do you plan your days/weeks? If so, how do you keep track of your plan? I know some prefer digital lists versus paper.

  • #19377
     Brittany Foster 
    Keymaster

    Hi Jen,
    If I have multiple things to get done in the day, I make a ” to do list” checklist that I like the manually check off when things are accomplished. But for keeping track of my appointments, my mom usually writes them on her home calendar and I end up just putting it in my phone. I used a home calendar before but ended up not referring to it as much as the one in my phone. The good thing about phone calendars too is that I can share my calendar with others that have google and they can see when my appointments are. Helps to keep track of when people may need to take days off or something.

    • #19385
       Jen Cueva 
      Participant

      Hi Brittany,
      Thanks for your feedback. I, too, enjoy manually checking off my ” to-do” list. I have been slower to catch on to the digital world. I’m sure you’ve noticed. I do have a few appointments on my phone. ( 2, actually) Haha

      I am working on trying to transition myself to more digital life. I’m sure that I’ll continue to utilize my ” old-school ” paper ” to-do” list. But, who knows, then again, I may surprise us all, Haha

      • #19400
         Brittany Foster 
        Keymaster

        Jen,
        I definitely have to structure my days out too an a lot of my “free time” or time to do online work, my columns, etc revolves around doctor appointments. I can’t wait until some of this maybe eventually slows down so I don’t immediately have to think “do I have a doctor appointment that day?” I feel like I can never just SCHEDULE something without checking in to make sure I don’t have a conflicting appointment. It makes it hard to get in personal time for ME, time for friends and a social life. It’s a hard balance for sure and is honestly like a full time job. Some days feels more draining than that too.

      • #19416
         Jen Cueva 
        Participant

        Hi Brittany,
        I can imagine that these last few weeks have been even more hectic. With all of your appointments, the flu, and pneumonia, as well.

        Planning is tough some days, although I’ve always been one who needs to organize and plan things.

        If certainly can seem like a full-time job, just managing our time somedays. I don’t know how you accomplish all you do, and do an amazing job, at that! I know it’s not east, that’s for sure! You’re a Rockstar!

  • #19392
     Colleen Steele 
    Keymaster

    Guys sometimes have a different way of planning things. My son plans in his own way. A lot of his life revolves around what times he takes certain medications. He tries to plan things around those times when side effects are at their minimal. Physical therapy is the same way. He doesn’t like scheduling it later that 3PM because he’s always a little sore afterward and if he does it too late in the evening then he has trouble sleeping at night.

    When he is taking classes he will make that his priority and make sure anything else that could interfere is take care of days prior. That way if he isn’t feeling well he can use all his energy on what is most important to him, school work.

    Since transplant he can be more relaxed in planning things. I think out of habit he still feels the need to carefully plan important things to him in a way that will be do-able if he is having a bad day.

    Personally, I’m like you ladies. I make to-do-lists.

    • #19396
       Jen Cueva 
      Participant

      Haha, Colleen! So true, I think most guys plan differently, in their own way.

      Like your son, I tend to try and schedule my appointments between 9 AM and 2 PM. I find that I don’t like to rush to get dressed. This helps when I’m not feeling the best. Most days I am awake by 8 AM, but I enjoy my coffee or tea and devotional before I start my day. These are my most productive times. Although, I may be up at 5 or 6 AM some days.

      I think it’s only natural that he continues to carefully plan his days. Post-transplant, I’m certain continues to drain him some days.

    • #19401
       Brittany Foster 
      Keymaster

      Colleen,
      Prioritizing is really something that I have learned to do with having a chronic illness. It wasn’t something that just came naturally for me though. There has been a lot of trial and error (mostly what felt like error on my part). Like I said in the previous comment, finding that balance and realizing the top most important things and what comes first is hard. I hate the days when I have to admit that my health comes first and put other more FUN things to the side. But unfortunately it just “is what it is” and I have to just go with it.

      • #19417
         Jen Cueva 
        Participant

        Hey Brittany,
        I just wanted to mention, that what I see you accomplishing, is awesome. Whatever trial and error you do works. I realize that every day is not the same and plans change.

        I can relate and agree, as the ” fun things” are often at the bottom of our list. It’s not enjoyable and I get frustrated and angry with this issue at times. But as you mention, ” it is what it is”. I say to my friends and family ” it’s just what I do”, it’s my PH life, unfortunately. I know some days it’s harder to accept than others.

      • #19444
         Brittany Foster 
        Keymaster

        Thank you so much for the encouragement here, Jen! I really appreciate it and you always have a way of helping to lift up my spirits when I need it the most, so thank YOU! You’re right that it can be frustrating for us when things change. Sometimes I feel like it can be hard to actually look forward to something or like I don’t want to get my hopes up and then be let down by my health and how I feel. That has happened a lot in the past and I never get used to that “let down” feeling.

  • #19464
     Jen Cueva 
    Participant

    My pleasure, Brittany! You are an amazing and inspiring young woman. We are here to support one another. Please remember that as I know you’re huge to support for so many of us.

    I can relate to the ” let down ” feeling, you never really get used to that feeling. It’s not fun to live with either. We just do what we can each day. Hugs to you.

    • #19494
       Brittany Foster 
      Keymaster

      So true, Jen. All we can do is exactly what we CAN do in a day. I have been pushing my body after being sick and I am beginning to feel it. I usually get the mid week tiredness around Wednesday and then I try to get back a little steam for the weekend. When I plan out my weekends, I have to usually just stick to doing one fun thing that weekend and it’s usually a Saturday night (or Sunday nigh if there is a long weekend coming up like this one). Doing too much just sets me up for failure and I try to remember that so I either consciously make the decision to DO IT anyways or I tell myself to STOP. It could go one way or the other haha!

      • #19511
         Jen Cueva 
        Participant

        Oh, Brittany, this is definitely an ongoing battle! I, too do good at times and others I feel ” my other voice” telling me to go out and enjoy. It’s never easy, for sure.

        I hope that you have an awesome remainder of your week and weekend. I know you have one busy weekend planned. I’m cheering you on, Haha

      • #19515
         Brittany Foster 
        Keymaster

        LOL thanks for being a great cheerleader, Jen! I hope my weekend goes as smooth as possible. I am driving to my cousin’s wedding the same day as the wedding and it’s a few hour drive. Looking forward to the wedding but NOT the drive there. Driving always seems to leave me so exhausted. I usually don’t need my o2 with sitting down but on the ride up there I just might use it to catch my second wind!

  • #19540
     Jen Cueva 
    Participant

    Ughh, drives can be tough. I am excited for you busy and exciting weekend. I agree that wearing your oxygen on the drive may offer a little boost. Enjoy and pace yourself, Brittany.

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