• This topic has 4 replies, 4 voices, and was last updated 1 year ago by Terry.
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    • #29877

      It has been eight months since I was diagnosed and put on macitentan etc. and lately I have been feeling pretty good. Up until 2017 I was a keen golfer and had a handicap of 14 on a Championship Course. Have not played since until today. I agreed with old golfing buddy to have a game (9 holes) using a ride on buggy for old times sake.
      Hhmm. Aside from having more strokes than I used to for eighteen holes and losing 7 balls by the sixth tee I was a little dizzy , puffing like an old steam train and my legs were killing me.It was so obvious my partner old Merv. (84) who has one eye two knee replacements and one hip replacement said he was not looking forward to giving me mouth to mouth and did I want to give it away. Mate I’ve got to tell you neither was I. Na, I said she’ll be right. Well we finished the nine holes slowly and I was so exhausted I had to gather myself to step out of the buggy and not fall over.
      One just has to accept things are not the way they were.

    • #29879
      Susi Steppins

      Hi @terry.
      It can be very frustrating to discover you cannot do the things you once could.
      I have often repeated the latin phrase “non sum qualis eram”, meaning I am not what I once was.
      It is true for everyone as life goes by, but for those of us who struggle with PAH it is especially true.
      I tried very hard to continue working full time after my diagnosis last year.
      It was very frustrating to find I could not physically do it.
      I truly loved my job and I miss it.
      The good news is that you have not lost your lust to live life.
      That is the most important thing.
      Instead of golfing 9 holes perhaps you can find something else you enjoy that you are able to do.
      I wish you the best in finding other things to enjoy.

    • #29889
      Colleen Steele

      @terry when it involves something you really love and enjoy, reality checks can be so cruel! I’m so sorry, Terry. Sometimes we learn to accept self-limitation the hard way. Like @s-steppins suggests, maybe you can find a pleasant alternative?

      I hope you don’t mind me saying though, you had me chuckling when you described Merv and how he wasn’t lookin forward to giving you mouth to mouth!

    • #29910

      @terry, I’m right there with you. I’ve been able to continue mowing my lawn, which I love doing, because I use a small riding mower. My rider isn’t working right now, and the repair shop can’t get to it for another couple weeks. I’ve been feeling pretty good, thought to myself ‘I can do this’. I mowed the entire yard with a push mower for the first 22 years I lived here. Turns out it’s all I want to do to keep the area my two dogs have fenced in taken care of. I was so shocked and disappointed finding out I couldn’t do the entire yard by hand. I had to stop numerous times, and pushing the mower felt like pushing it through quick sand. I gave in two years ago to having someone do my fall clean up for me, and luckily they will do the yard for me until I get my riding mower back.

      It’s hard realizing & accepting those limitations, especially when we’re feeling better than when we were first diagnosed with ph. I agree with finding something you can enjoy that isn’t quite as taxing. If golfing is a big love, perhaps fewer holes played – just to the point before you start to feel negative effects. Sending wishes that you find something you enjoy, and that doesn’t aggravate your ph.

    • #29923

      Well I suppose we can all look on the bright side . For me I wont be coming home in a crap mood from having a lousy round anymore and I do have my sailing (fair weather only) so life’s good.

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