I don’t want to promote my blog, but do want to share this experience. I am trying to make the most of things. Have you ever had something like this happen?
In April, we had planned a trip to Florida. For numerous reasons, including my recent diagnosis, we couldn’t go. We had taken a trip there exactly one year prior. That trip was cut short as my mother had become very ill and entered hospice care in my home. But we recently rescheduled April’s bamboozled travels. And, for the past several weeks, I have been very skillfully planning my execution of all that needed doing to pull it off this time.
PSC makes a person tired. All. The. Time.
But we got it all done, and we left the house at 4AM yesterday. I drove some of the way in the morning, but my husband did most of it. Thankfully. He and my son understand how I am and what this does to me. And they didn’t complain about my falling asleep for much of the last leg of the drive.
It looked like sleeping, but I felt like a cross between drunk, hungover, and dead. Other people with this disease know what I mean.
We arrived at this beautiful little rental home last evening. Blooming topiary trees welcomed us. The inside opened up into a space that the house didn’t appear capable of holding. Lovely. Absolutely lovely.
I was thankful for the peaceful surroundings when I began throwing up last night. Several times, I sat on the floor, hugging, crying at the toilet. I was pretty sure that God brought me here so I could die in a nice place…meaning no offense to my humble home.
But, I’m still here today. It is 4:30PM and I am not even dressed. My pee is almost clear. I am not vomiting. I feel like tomorrow I may be able to go out somewhere.
But, meantime, the bed here is the softest I have ever rested in. And it’s all good.
Thanks for sharing, so pleased you’re having a nice surprise on vacation. Still there, still enjoying, still getting to have some good rest. I hope you get to explore and go out too. You deserve it. Have a lovely weekend.
Hang in there MaryAnn. It’s bad now, but one day when you get that transplant life will be 100% the opposite. Enjoy every good moment, place, dream you can make. I’m very thankful for your understanding family. That’s so important for quality of life as a PSC patient. I hope you enjoy your vacation. Feel free to post a few photos of your lovely spot if you wish. Take care!
Mark
I take a prescription of antibiotic with me on vacation, just in case. The first signs of an attack & I start with the antibiotic. We went on an 11 day cruise & I had an attack one night. I took the antibiotic, then felt pretty good–but groggy–the next day. Luckily we were at sea that day.
You have the right view. Not letting the disease prevent you from doing something like your trip is good if you don’t put your health at risk. I travelled to Florida from northern Illinois two times with PSC. Not easy, but it was rewarding. Utter fatigue, pain and vomiting are enough to sour the average person. I am glad you found the beautiful surroundings and restful bed as things worthing of rejoicing. You must be self-renewing to defeat PSC and don’t let it make you a prisoner of a joyless life. Resist!
Thank you. <3