I have been absent from the forum for quite awhile… I had an unexpected family death and then a debilitating surgery, it’s medications were horrible and of course juggling PFS.
I sold my home in Arizona , and moved to coastal Oregon. I moved to get in a living situation that would be easier for me to take care of myself for the rest of my life. That is the goal. I knew from the beginning of PFS 9 years ago, that I would need to simplify my life and do this one day. So I moved into a senior community by the ocean and I have easy access to grocery stores, Hospital/doctors, and exercise. I am a blessed man. I am a man of faith.
In June 2024, I had severe PFS symptoms for continuous four months and off and on for four more. I have no idea what set it off, but I haven’t had symptoms that severe since the beginning. They eased off and I’ve been doing everything I can to maintain my life the best I can. And I am.
I still have what I call down days (crashes), mine are occular migraine type headaches that require a dark room, feeling like crap, total fatigue, memory loss, and ringing ears mostly. I even have trouble forming words on those days. I don’t know when they’re coming, but they normally don’t last more than a day or two at a time now, but of course that can change. I love my life and I’m so glad that I’ve made it easier for myself to take care of myself and live the best quality of life that I can.
I go to the beach regularly. I swim for an hour three times a week in our community pool, I try and live strictly on a keto diet. Kimchi I still attribute to helping me with PFS.
I stay to myself for the most part. As much as I would like to do volunteer work or join a church or be more social I cannot schedule anything because I am not in control of the calendar, PFS is.
I cannot make a date to do something because PFS is absolutely unpredictable.
PFS is unknown to the majority of the world. I don’t like having to explain my compromised life. I don’t deal with a lot of people because my inability to make plans frustrates them and actually, I don’t want to deal with that. I am managing my life easier now. Having had a life of service to others, I don’t mind the solitude.
I have a lot of really good days. I’ve had a good run for a month now with only 2 down days. I take the winnings of those good days. I get work done on my house and yard on those days.
I do read the Bible every day and read a devotional. They give me strength, they always have. I have peace.
I’m older now, I’m 68. My family’s gone. My extended family are busy with their own elderly lives. Throughout my nine years with PFS I have lost so much, but it is still not conquered me, nor will it. If there was one message, I can share with anybody out there. It is to keep pushing forward, never give in, never give up. There is good life to live out there, even with PFS. Be kind to yourself and others.
It was this forum that helped me to form my own life forward. And for that, I am so very grateful.
I still have so much joy in my life. I wish the same for all of you. Do try and take it easy on yourself and my advice is to make your life easier.
