Hmmm, my shoulder is a mess, has been so sore for months, and I have no cheese, not allowed in my new regime...
But I do have a different perspective I can share?
I am not sure if the docs are being somewhat misleading if they continue to speak of "recovery". Chronic illness is life altering, for sure. I am sure you will make some "progress" and things will improve, but, unlike an injury that heals up good as new or the measles that go away, your illness, as you have seen, can change things. Some medications can make some things better, but can also make some things not quite the same, anymore.
Sleep can be restorative, and can help the body heal more.
When I was pre my illness- I used to resent sleep, resent taking time to eat- goodnes there was just SO much to DO. For decades I slept 3 hours a nite tops. I ate once a day (dinner) and was on the go the rest of the day. My work was very physically demanding and it seemed to energize me to work.
I now eat 5 small "meals" and sleep 5-7 hours most nites. For several years I slept 2 hours, was awake but immobile 2 hours- round the clock. I found it very frustrating. Turns out I used up my positive energies resenting my need to sleep, and in doing so, I blew off my opportuniies to enjoy my awake time. When awake I was either screaming in extreme pain or angry about being so ill.
My very very dear aunt then passed away and it made me even angrier. While I was busy being angry that she was taken from me, my best friend became ill and lived an even worse hell than I and then she passed away. That stunned me. (she was much younger than me) Before I could take a breathe from that loss, my mom became very ill and my son poked out his eye. And my husband landed in ICU, all at the same time. Mom died, so lost his eye and husband sorta recovered- relatively speaking.
All in about a year.
Gradually I learned that Life is constant change. Life is also too short. I have slowly learned to enjoy the cold and the nitetime almost as much as I enjoy a beautiful spring day. I slowly came to make my bed up in colors and fabrics and textures I love, -LOL- previously I had not even had any idea that there were fabrics I liked better than otthers, LOL, never thought about it before. For those times I MUST sleep- I now do so in a room I adore....for the times I must take things slower than I prefer, I have colors and patterns around me I enjoy.
Friday my difficult child began a new job- careing for a lady my age who was in a car accident 20 years ago and made her a quadriplegic. I am no stranger to such things, for I was a long term caregiver for years. BUT this specific lady lives alone.....my difficult child puts her to bed at nite.
This lady decided she wanted to meet difficult children mom, to assure the mom that her dtr was "safe"? SO she invited me in to her home. She is strapped in a wheelchair, in her one bedroom apartment......her living room has murals on the walls simulating a tropical beach, and her friends laid felt on the floor to look like a sandy beach, and laid seashells all around, and there are fake palm trees and real plants around. She has beach furniture in her living room. Her bedroom is done fairy princess style- complete with a pink & purple filmy guazy canopy over her bed.
It really hit home for me just how important it can be to surround ourself with things we like-----so that we can take advantage of pleasure.
when my oldest child had such difficulties in school, I had to slwoly readjust my expectations to fit what she was capable of. As my husband grew more and more mentally ill, I had to learn how to go with the flow and live thru that. ALl thru alll that, I held tight to my abilities, especially my physical abilities. It was such a giant shock when my body "failed me" becuz I built my whole life upon my body carrying me thru all crisises. I depended on my physical abilities to permit me to work incredible long hours at very physically demanding jobs, and all of a sudden BAM! My body let me down BIG time. Very very slowly I have been struggling to learn how to work in partnership with my body and it's new needs.....and of course, just when I think I have a good momentum going on, something new jumps on the tracks and tries to derail me. (The most recent is the diabetes and liver damage and Cushings and high blood pressure)
And just when I think I understand difficult child and she is on a good track, my easy child jumps up and begins to make me nervous about just what HER status is.
Yes, you might be sleeping more, and it might be inconvenient, but- I am sure when you ARE awake, you can begin to find things you love about the time you are awake, too. I know you miss golf, but I know you love your art. If you cannot be outside in the yard planting, can you get some sunflower seeds and pots and plant them inside? Do you have an indoor herb garden? difficult child got me a Chia herb garden for my birthday in March.
We brought a hanging planter indoors and put some impatiens in it for the days when I cannot handle going outside. (I love impatiens)
2 summers ago, I wanted so badly to watch fireworks, but was afraid I might fall alseep.....we took a comfy chair with us, and yes, I did doze off and on thru the events leading up to the fireworks, and I think I dozed off in middle for a short spurt, but--I KNOW I was awake for the start and end.....and the kids worked hard to make sure I GOT to our "spot" in plenty of time. (they carried everything across the field, while I used my scooter to get there) They even put up a beach umbrella and yup- I napped until it was time for my fav part of the day. (the fireworks)
Hang in there....right now your body is trying to do what it needs to do. Try to be flexible.....I know you are creative- you will figure out ways to cope and adjust. Maybe your husband has some creative ideas, too, to help? Think about what your most important personal goals are.....your top priorities, and figure out how to focus on those things. Use your time and energy for the things you find to be most important to YOU.
Yes, there are now days when my biggest priority is simply a nice dinner, whether I cooked it or it was ordered in. Or even just a simple peice of fruit, that can be my highlight of my day some days. Some days it is just a cloud formation I saw thru my window. Or just the taste of my first cup of coffee-------I am learning to relish and treasure such tiny things. Some days it is the sound of our smallest kitty purring beside me or knowing my doggie loves me unconditionally- it warms my heart, makes my whole day. Hmmm, back when I was working my job 20 hours a day, I had no idea just WHAT any cup of coffee REALLY tasted like for sure. And I doubt I ever stood still enough to even be aware my kitty purred at all.
SOmetimes I wonder if maybe I forgot to stop and smell the roses along the way so someone put up this giant brick wall for me to smash headfirst into to make sure I WOULD stop and smell the roses? Well, if so, it worked! LOL- some days that seems to be the ONLY thing I CAN do is to smell and smell and smell those roses cuz my face is sorta stuck there with those roses up my darned nose. LOL. I am slowly learing to be grateful it is roses and not........um......something else I had to stop and smell along the way?
