Hi Fellow PMR Warriors!
I hope today is a glorious day for you!
I have been dragging a bit as I have a horrific cold, and the day is rainy.
I had planned to write about "small gains" in my PMR journey, which would have been a light and uplifting blog.
I am sorry to say that I changed my mind and instead chose to go off on a bit of a rant.
I apologize ahead of time if this is more of a bummer of an update. But as we all know, PMR is not fun, and we all have ups and downs with this condition.
Some days, we want to complain and tell it like it is. So be it! I promise to return to my original idea for today's blog on a sunny day :)
I have been fortunate of late to be able to plan a few great vacations for the next 2 years. As it happens, I have lovely friends, family, and co-workers who have invited us to tag along on various cool trips.
These adventures would usually thrill me and fill me with much anticipation of our great times together.
For those with PMR, you may very well be thinking along the same thought process as me as I begin to plan these trips.
Only someone with PMR or a chronic illness would be able to understand our feelings, as they are not the typical excited thoughts that accompany the anticipation of a fabulous vacation.
The truth is, I am scared to death that I will not be able to keep up with my friends and travel mates! The limitations caused by my illness have become glaringly obvious to me as we plan our trips.
I do not want any unnecessary attention about my illness, nor do I want to hinder or slow down the group.
Worse yet, I am scared that I will have a medical event and have to go to a hospital in a foreign country! My adrenal insufficiency from the long-term steroid use has added a whole new layer of travel anxiety for me :(
Besides fatigue, stiffness, and pain from PMR, I need to make sure that I do not go into adrenal crisis due to traveling in different times zones and trying to keep up with our tour schedule.
This is a LOT of pressure on me and is draining my joy for the trips. Only you, my virtual PMR friends, can understand this.
Potential scenic hikes with friends must be carefully mapped out to see how long and rigorous they are. Even for a short hike, I need to bring all my emergency meds and fluids. The timing needs to be perfect and coordinated when I feel strong and less stiff, which is usually in the afternoon.
Even if the "PMR planets align", I still do not have great stamina for physical activity. My friends are all in great shape and can hike the best trails, and I am dragging them down with all my "issues".
No more morning hikes on the beach with loved ones as I am too stiff and weak in the early hours of the day.
Packing my "Paleo" foods and a slew of meds takes its own suitcase. This is a problem for my first trip to Ireland, where we are limited with our luggage.
We are going with my husband's co-workers, so I pray that I do not embarrass my husband in any way due to my health limitations on this trip.
I do not relish being the "frail" wife. I have always been a healthy, self-sufficient woman, and I am embarrassed already about eating out with them and any unforeseen medical-related problems that I may have to deal with.
Instead of pouring over brochures and interesting facts about our trip to Ireland, I have memorized the emergency 911 number in that country just in case I need to make a quick exit.
However, I tentatively looked at the menus to see if there was food that I could eat and did get excited to see that there were whole, nutritious foods to select.
I also did breathe a sigh of relief for the days that have built-in "free" time. This time customarily utilized to explore nearby towns and pubs translates to "nap time" for me.
That is pretty sad.
I look at the travel brochure pictures of the elderly and frail folks on some of these planned trips. I figure that if they can make the trip work, I should be able to hang in there. However, I can't help but feel a little sorry for myself, as I did not expect to feel like this for another 20 or 30 years. My friends and family are not old or frail, yet I seem to act like I am.
And I can NOT keep up with them.
Even if I feel good one day and can join in on all of the activities, I know that the next day I will pay for it with fatigue and increased stiffness (or worse yet, if my adrenal insufficiency rears its ugly head).
I still am hoping that I will go into remission soon. My goal remains that this may occur by the end of this summer or early Fall. So maybe, just maybe, I will be able to keep up with our friends when we head out on our 2nd and 3rd planned trips over the next year and a half. I hope to one-day look at the literature about hikes of the gorgeous vistas with anticipation instead of dread and embarrassment.
Despite this doom and gloom post, I pray that I can report that my 1st planned trip of the year was fantastic, and all went well. I will take pictures for you and pass on any travel tidbits.
Take care, my friends, and thank you for allowing me this small rant. I feel better already!