Thanks for your comments and support to my previous post on pacing and my vacation. I read somewhere that someone referred to PMR as the "I don't know disease." I get this now. "I don't know how I am going to feel the next day." "I don't know to increase or decrease my meds." "I don't know what new symptom from the meds are going to pop up today." "I don't know what the doctor is going to say next." I think you get the idea.
First, I had a lovely trip. One of the benefits of pacing and saying no to activities is that I was able to just relax and enjoy the beach housecwe were renting. I've always found it frustrating to rent a gorgeous home and than only sleep there. Between me and my Dad we provided the revolving door for the families to roll in and out between activities, including several at the house barbecues. My daughter and her boyfriends are chefs and cooked up some wonderful family meals for 25 people. It was outstanding.
One of my favorite times of the trip was taking my early meds at 5:00 am. I had the back deck and beach to myself to sip on tea and watch the sunrise with the local wildlife. Priceless.
In regards to the GCA, the double vision and right temporal pain went away after a couple of days. The PMR pain was pretty constant and only felt better after resting. I only slept through one day, and that was right in the middle of the trip. It was a planned down day, so I was prepared. I think the family was surprised, yet they were off and busy doing their activities.
It saddens me a little as I think my nephews and nieces think I am crazy old auntie who can't get around very well. My brain was often a little fuzzy from pred head so it was a little overwhelming with 7 kids running around and 15 adults. At one point they thought I sent the 4 year old into a strangers house. I had sent him into the house with my Dad which was 4 doors away.
Key learnings from my trip include, pacing is a must - before and after, don't go for the marathon travel - schedule shorter trips over multiple days, take advantage of any assistance provided and don't worry about getting in folks way or holding up the lines. My dad got nervous and felt bad as he was in the wheelchair. The line or the people weren't going anywhere yet. They were just anxious.
Last take away is I didn't try to explain my disease or get into any details with the family. If they haven't googled it and asked earlier now was not the time. They have their own issues. My sister and husband weren't moving so well either. She has arthritis which is untreated. Her poor ankles and knees swelled tremendously. I hoped I convinced her to see a rheumatologist. I was surprised she is not under a physicians care and didn't even know what type of arthritis she has. Her husband has a blood clot in his lower leg and is battling diabetes. So I joined the ranks as limping, sleeping "auntie."
Overall it was a wonderful once in a life time trip. Thanks to everyone for your advice. It definitely helped me make better decisions for a better vacation.
Wishing you all a great holiday this year!