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    • #14456

       

      I hope everyone has had a wonderful week, and is enjoying the month of September thus far!

      I feel a little behind on my forum responses, but I am working hard to catch up now that my vacation has come to an end. I am slowly adjusting to reality again, and experiencing a little bit of the “post-vacation blues”. This isn’t new for me, as they tend to hit me each time I return home from vacation, but they’ve become progressively worse since my diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016. I think because there is always the threat that my lungs will rapidly decline, preventing me from travelling in future which would devastate me as I intend to see as much of the world as I can.

      I also believe that the “post-vacation blues” is tough for me because vacation brings with it a calmness that doesn’t exist in the daily life of a patient with a fatal lung disease like IPF. For an entire week:

      • I was not admitted to hospital
      • I did not attend clinic
      • I was not poked for bloodwork
      • I didn’t need any type of diagnostic imaging and,
      • I wasn’t coordinating any rehabilitation appointments for my lung disease.

      Instead, I was breathing in the coastal air that was not as humid as home and dipping my toes into the Atlantic ocean. I enjoyed every moment of my time out east and am re-evaluating why I live where I do when I am so much happier on the coast (more about that later). It was hard to say farewell to such great friends, and it has been a bit tough getting back into a routine as well.

      For an entire week, I was not a patient with IPF; I was a young adult enjoying vacation with friends who feel like family. To everyone I met there, my IPF didn’t matter and it wasn’t the sole focus of our time together — I was a person first, and a patient second. Sometimes when living with a chronic illness, especially one as serious as IPF, it is easy to forget our person-first needs when so many of our days are filled with hospital/clinic visits.

      I truly felt at ease on vacation, knowing that I’d prepared ahead of time if there were to be an emergency and I felt safe and comfortable with the people I was staying with. To me, it’s no wonder that I’m having a hard time adjusting to home and experiencing a very strong case of the “post-vacation blues”.

      Have you ever experienced this after vacation?

      If so, has it gotten worse since your diagnosis of IPF/PF? I believe mine has due to the constant threat of this disease and the potential of it taking away my ability to travel in future.

      I look forward to hearing from you!

      Please note: this is my personal photo while on vacation –  do not redistribute/share without my permission in advance. Thank you. 

    • #14463
      Patricia Hayden
      Participant

      Hi Charlene, Messing with the computer and went to the blog again and bam! there was an invitation to reply. YEAH
      First of all love you picture. You look powerful standing there by the Sea and vulnerable as well with your breathing machine.
      I also had a vacation a week ago and it was mostly bliss. Something I have been needing for a long time. My husband, Mike, kids came from Colorado for 12 days. They came to help us get our house ready in case we need to sell. Lots of work got done (not me)We then went to Port Ludlow and stayed in a nice condo on the water. I think water is so cleansing.
      Before we left the resort I wanted to go for a swim and my beautiful daughter Lacey, walked around a good size pool carrying my machine. I circled the pool twice and cried.
      I also received the gift of her being my caregiver along with my husband when they call me in for a transplant. More tears.
      Thank God I am gifted with this family. Lacey has committed 3 months to come here and take care of me.Her home and close family is in Colorado and she works full time.I believe her job will be waiting for her when she returns.She is amazing!
      OK, I got off track. Back to vacations.
      I cannot walk for long periods so we got me a little mobile cart. What freedom. Went all around Port Townsend. Had lunch outside with the kids and my dog, Buckie. We sat by the water. I had an icecream. We watched our grandson ride his skate board. He is really good. I got to keep up with them all in my cart. As long as I can I will do what I can because the opportunity may not come again. Like swimming in the pool.
      Since they left, I have been depressed. I hope this passes. I know it will.

      • #14501

        Hi Patricia,

        Thanks so much for getting in touch and I am glad you were finally able to access the forums. So glad you could join us! 🙂

        Thanks for the comment on my photo as well, I also really like it as it is a blend of exactly what you say …. strength and vulnerability. There is so much risk to travelling with a lung disease but I don’t want that to ever stop me as travel is my passion so I was also trying to show my strength too. I also just love the ocean and was taking in its beauty in this picture in Nova Scotia.

        So glad you got an opportunity to have some peaceful moments on your vacation with your family as well. Aren’t these so rejuvenating for us? I love being by bodies of water, but I live for the ocean so I’m not sure why I haven’t up and moved somewhere along the Canadian coast. I am certainly considering it, but the healthcare availability differs significantly out there.

        I am also so glad you have an amazing family. Your daughter and husband sound wonderful, and like a true gift to you! I’m sure they got their skills, caring and compassion from you 🙂 Doesn’t it feel amazing to do things again that we once took for granted, like swimming? I also had some tears when I was able to walk in the ocean with a friend helping me balance and who was carrying my POC.

        Be gentle with yourself as you recover from vacation… this is the only part of travelling that I don’t like; the heartache that comes from saying “see you next time”. That is how I deal with it, I don’t think of it as goodbye but instead as see you later, so that it is easier to leave or have people leave. My post-vacation blues are pretty strong today, but I’m going to spend some time printing photos and reliving the memories! 🙂

        Take good care,
        Charlene.

    • #14475
      Anonymous
      Inactive

      Hey Charlene,

      i am currently on vacation at the Atlantic seaside as I read your post. I was at this same location last December and at that time experienced a lot more “freedom” from my iPF than I am at this time. So Expectations meet Reality.  😐

      I was surprised to find in December that I could take the short walk to the beach without my oxygen concentrator (Oscar), which I wear routinely at home with any outing and occasionally in the house. I attributed this to the lower humidity and the lower elevation at the beach. But this time it is not so – which is probably due to the high humidity and heat as well as some progression of my disease over the 9 months.

      After my December visit, I went through thinking similar to what you mention: could I find a way to live here?

      I also wonder whether this trip will be the last. But I am aware that I can dwell in the Past (how it was in my last visit) or in the Future (will I be able to visit again) OR I can enjoy the Present (time with my beloved dog and a dear, dear friend), the beautiful ocean and the support of Oscar to get me out and about.

      Thanks for offering this opportunity to share,

      Anna Kathleen

      • #14502

        Hi Kathleen,

        Thanks so much for getting in touch and I hope you’re enjoying the east coast as much as I did. Isn’t it just beautiful? I’d visited before (years before I got sick) and somehow, this time just seemed so much more beautiful and serene. Maybe because I focused on not taking any moment of my trip for granted! I had to be pushed out to this spot in a wheelchair, as my legs/feet wouldn’t cooperate to walk in the stones or up the hill along the walkway to this memorial. That said, I’m just thankful I could still get to this spot 🙂

        It was warm while we were there too, although the humidity was definitely not as bad as home. Did you find you had a better ability to breathe overall on the coast?

        I am still mulling over the desire to live there, instead of where I do which tends to focus on so much chaos, being busy and less on a slower lifestyle that is focused on friendships and connections. I really value the latter, especially now that I am sick. The healthcare is so different out there though, that I’m not sure I’d be able to have my needs met. That is the only thing holding me back from actively working for work out there…

        I sure hope you savour every moment of this trip, as you’re completely right: living in the present is so important for us (well, for everyone really) and embracing the moment can be so peaceful and ful-filling. There is a small fear for me too that I’ll never get back out there again, but I am trying not to think about that and planning by next trip to be by my friends again 🙂

        Enjoy every moment Kathleen and thanks so much for writing!
        Charlene.

    • #14513
      Katie Bagshawe
      Participant

      Hey Charlene! As much as I love the idea of home, sometimes you need to go on adventure to be revived, it’s just always a downer when you have to come back and settle back into the routines that stir up these negative emotions. Love the photos you shared and your honesty at facing post holiday blues. There’s something to be said for simply escaping, whether it be your surroundings or the everyday tolls of your responsibilities, your fears and your angst. It’s a weight that I feel can only be lifted in this way so any opportunity to jump in the car and drive should be taken to your advantage, it doesn’t even have to be far, just enough to feel that little thrill of being away from everyday life. As for the sea, well that’s a whole different ballgame. It has a funny way of calming and terrifying in equal measure, and perhaps for the same purpose; that in the big picture we are all infinitely small and only capture a tiny portion of whatever is going on in the world. I feel that sometimes we have to be humbled in this way to remember how to fight, it gives opportunity to reflect and to focus so that we can regain our strength for where it is needed. I know how you feel about wanting to live by the ocean, I think for some it lures them in, if you have the opportunity to move somewhere to feel that calmness and that safety then I wouldn’t hesitate for a second.

      • #14537

        Hi Katie,

        Thanks so much for writing and for all of your kind words!

        I really feel stuck in a position of how to proceed now with my strong desire to feel happy living by the ocean, but also with having the access to healthcare that I need. For example, there is no lung transplant program/center on the east coast of Canada so I would basically be giving this up if I chose to move there. On the flip side, I don’t want to miss out on an opportunity that I think would really make me happy. I just feel so much calmness and peace by the ocean. I’ve really been doing a lot of thinking this week. Maybe I apply for work there, and focus only on applying to jobs that I know I’d love and then take the perspective that if something comes about it was meant to be, and if not, then it wasn’t the right time. It’s the only way I can think of proceeding right now. What do you think?

        One of my favourite quotes is: “home is a feeling, not a place” and I think this applies to my thoughts this past week. I’m not sure, just something I am considering I guess…

        In the meantime, I am looking at trips in the next few months to just hang onto that feeling of being alive vs. mundane/boring routines of work, hospital, appointments, home, etc. Maybe I can satisfy the craving of something more by just going on trips (even small ones) for the next little while. The unfortunate part is the financial situation, that isn’t easy given my anti-fibrotic medication costs, but I just know I need to feel like I did in Nova Scotia more often!

        Thanks for all your kind words, and I hope you’re having a great day!
        Charlene 🙂

        • #14553
          Katie Bagshawe
          Participant

          I totally understand your perspective, it definitely sounds swapping one positive for a negative by giving up access to certain tools that are so easily accessible where you are. If it were me I would perhaps look at the route you’re taking, just investigate and enquire and maybe that will help direct the path for you as to whether it is a feasible opportunity.

          Ever since Dad died, it’s not that “home” doesn’t exist to me, it’s just that it’s a bit of an alien concept and even this house that I’ve lived in since I was a baby feels like a bit of an empty shell in my life. It has wonderful memories of course but just like you say, it’s a feeling of content, of safety and of happiness that isn’t easy to replicate. Life has been uncertain since he passed as I’ve had no opportunity to settle into a job and quite frankly, grief makes you question everything you do so it’s difficult to feel happiness at falling into routines.

          Recently I’ve been considering a major change and just got back from Boston on a short holiday and honestly, it’s not so much that I felt home over there, it’s more that I realise home for me right now could be anywhere and maybe it’s time to make that change to find new happiness. Currently I’m applying for jobs locally but I’m also seriously considering moving over there to have a go, of course for me I don’t have even half the things to consider since I don’t live with PF, but perhaps I know how you feel when it’s reached a stalemate that you just feel lost even in the place you live in. It’s a restlessness, and if you know of somewhere that can ultimately make you happy then reach for it and everything else will fall into place. That’s what I hope for anyway.

          I tried to replicate this with Dad as it wasn’t always to travel and we regularly had problems with oxygen supply. In the end all we had to do was get in the car and drive, we usually stopped off for a coffee somewhere and just watched the world go by. It stopped both of us feeling trapped within the house and I really hope that it helped him feel his life was still worth something when he could no longer maintain his own independence. We all have to break free sometimes and only in time have I realised that the whole time as a Carer I was trying to give us control back, we lost so much in his illness that at any given opportunity to take back the reins I would go for it. Maybe this is what you feel, this control that is hindering you and making you unhappy because it feels like it dictates every little piece of your life?

    • #14515
      Patricia Hayden
      Participant

      Thank you Katie. Love what you shared. Thank you.

    • #14516
      Patricia Hayden
      Participant

      I too am looking at making a possible move to Florida from Washington State. Husband and I had dreams of going to a retirement community there. Dream has been ongoing for about 10 years. Of course this is an active retirement center and hope to participate after lung transplant if God is willing to have us there. I decided yesterday to contact the U of Florida Medical and inquire about their transplant program which was highly rated on the web. I figured it could do no harm to inquire. This is where we want to retire. In the sunshine. Not dreary, wet, gray Seattle.
      Hope to live our dream.
      I love what Katie said at the end of her post about” if you have the opportunity to move somewhere to feel that calmness and that safety then I wouldn’t hesitate for a second”.

      • #14520
        Katie Bagshawe
        Participant

        Hi Patricia! Thanks so much for your response. You said it perfectly yourself, it can’t hurt to enquire. One thing we all have to learn is being assertive and knocking on doors just to see if there is an option for us behind it. Having PF in your life makes everything so uncertain and losing control is challenging in so many ways, at the end of the day you have to step back from the bubble and imagine where you feel you can enjoy life even if it has to be restricted within certain parameters. Plus, sun and sea has a world of benefits to your psychological health. It’s never too late to make a change and if anything I’ve learnt from losing my Dad is this; don’t wait. There is no time to. Life is happening now so seek the sunshine and whatever that will give you happiness and I’m sure there will be people waiting with open arms to welcome you into their community.

        • #14539

          Love your reply Katie. Thanks for all of your kind words and sharing your experiences with us!
          Charlene.

      • #14538

        Goodluck with your inquiries Patricia! Do keep me posted, as I think you and I are on a very similar train of thought right now, in terms of trying to make our dreams of living oceanside become a reality. Life just seems too short, and I can’t “quiet” or subdue this desire that is inside of me right now to just live by the sea. Should I just also inquire, and listen to whatever it is that is telling me to move? I’m not sure. I’m glad you have your husband to help you with this decision 🙂

        Let me know what the Florida hospital says about their transplant program. This is one of the downfalls for me, as Toronto is the only lung transplant center in Canada and I’d be moving very far away from there. I think our healthcare differs, in that, you need to be referred to a lung transplant program vs. calling to inquire about the program without a referral. I like how the US operates in terms of this being an option…

        Keep me posted, maybe we can help each other!

        Cheers,
        Charlene.

    • #14525
      Patricia Hayden
      Participant

      I just wanted to let you know that I would love to take credit for Daughter (Step) Laceys wonderful attributes, but I would have to say it is her real Mother Kathy, who has taught her kids how to care.

      • #14540

        Sounds like Kathy is a wonderful woman, Patricia.
        Lacey sounds very lucky to have both of you in her life!

    • #14562

      Hi Katie,

      Thanks for writing and for such a thoughtful reply to the situation currently consuming my mind! I can’t “let go” of this desire to just re-route my life out east, although I know so much has to be seriously considered first. What I think I am going to do is take a close look at jobs (although, I wish I didn’t have to work and could just enjoy my time there, that isn’t feasible financially) and apply for ones that I’d only really be willing to more for, ie. they would have to be perfect for me. Then if something comes about, maybe it was meant to be and if not, that is alright too. No harm in inquiring, and I just don’t want to be thinking about the “what ifs”…

      I am so sorry to hear about the tough times since losing your Dad. You’re absolutely right – grief sure makes you question everything, and since it isn’t a linear process (far from it, actually) it can be hard to find that feeling of safety, security, etc. as you say. I really can relate to what you’re saying about the desire to just make a big change in seeking out happiness. I feel similar to you in that, I realize home could be anywhere right now and it doesn’t have to be among the mundane, feels-like boring life that I have right now. Lots to ponder!

      It is also to feel that desire to move when it comes to Boston, I sure love that city! Would you ever consider re-locating to Canada?

      I love just grabbing a coffee and going for drives as well. It is enough to lose that feeling of being trapped I agree, and I’m hopeful to do this more often with the changing of the leaves now that autumn is here. Fall is my favourite time to take a drive and see all the colours that have emerged after the summer. Thanks for reminding me of this, and I am glad you were able to do this with your Dad… such a wonderful memory! 🙂

      Write anytime, I love hearing from you!
      Charlene.

      • #14602
        Katie Bagshawe
        Participant

        I have always wanted to visit Canada actually, and you did just put the idea into my mind of leaving that open as a possibility as getting to the US can be quite difficult in terms of studying. I’ll have to do some research! I guess like you I just feel at a loose end and have realised there’s no harm in enquiring, I sent an e-mail to the Admissions department at Boston Uni to rectify some queries as being a graduate already I can technically apply for a shorter course and qualify within two years. It would be a total dream come true but I’ve seen a thoracic imaging fellowship at Boston Mass General so I’m pinning my hopes on getting there someday, but it’s a huge stepping stone for me moreso financially than anything else since I haven’t been earning a decent working wage whilst caring for Dad and struggling to get work in the aftermath. I do however a job interview this week so please if you can, make a wish for me!

        Just a thought, would you still be able to access the care services where you’re at currently even if you moved away? I know it’s different in the UK as we have the NHS, but basically all patients have the right to pick whichever consultant/hospital they wish to attend as long as there is room. Is that something that is feasible to do where you would be based even if you did tests at a local hospital to your new location and then liaising with your team for updates and the transplant journey ahead of you? I have my fingers crossed for you though as it really does sound like you need a good break from it all and a fresh start in a place that has a lot more positivity to offer.

    • #14631

      Hi Katie,

      Thanks for getting back to me. How is your week going so far? Today is a very dark, dreary and chilly fall day here which is reflective of my tired and lazy mood today I think. Hopefully it is nicer where you are!

      Yes, I believe it would be easier for you to actually look into studying at a Canadian Uni, given you’re in the UK. Definitely worth looking into anyways! You’re right, no harm in inquiring and I’m hoping to carve out some time this coming weekend to look at different job opportunities as well, and just see what is out there. I have faith (after so much that has already happened) that things will work out when they are supposed to. I hope this falls into place for your job interview this week too. I’ll absolutely send you good wishes and best of luck! When is the interview and if you’ve had it already, how did it go?

      No, the healthcare services out east are significantly different than they are here so my access to the stellar health teams that I have wouldn’t be possible anymore. Of course, this is a huge factor in my decision and the only “snag” that I foresee. However, I figure I’ll cross that bridge when and if I have to in my process of looking at other options. There is no transplant program out east either, and they’re not near as developed in terms of organ donation and awareness either. This would be a big factor in my decision…

      Hope you’re doing well Katie.
      Warm regards,
      Charlene.

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