Yesterday felt hit and miss, at times. Good things involved an OBGYN appointment, getting mail for friends, and a trip to the grocery store for essential items. And then, I crashed. It was tunnel vision – I felt like I Just. Needed. To. Sleep. For two hours, I napped, opting to lay down (there really wasn’t a choice) over walking in the woods. Andy called on his way home from work, and I actually cried tears of frustration. I was still upstairs in bed when he walked through the front door.
Sometimes it is just so challenging, working through my fatigue. It’s like I wake up with a few different ideas of what I want to get done, and by the time I’ve worked my way through the “must do” things, I’m spent. Driving through downtown Hendersonville yesterday, I passed a beloved coffee shop and thought about stopping, but didn’t; first, because the caffeine kick wouldn’t work and second, GI sensitivity.
Andy listened and hugged me. It felt good to cry.
The other hard part is that I know this… I know that fatigue is a major part of post-transplant life, and every day will be different. I understand this in my head. Feeling the impacts in my heart, though, can be hard to accept as I was incredibly active in my pre-transplant life. Things that were easy then are challenging now.
I hearken back to one of my favorite Sesame Street clips, with the wonderful human and violinist, Itzhak Perlman:
That being said – I’m already stronger and can do more now than when I first returned home. Stairs don’t bother me as much (though I’m still winded), and tasks like laundry, general cleaning and non-pasta dinner making are becoming more second nature. Progress is progress, even if I can’t always hit a trail the way I want. Perhaps that’s yet another lesson: I’ll have to meet myself wherever I’m at, for that moment in time.
Speaking of where I’m at, my OBGYN appointment when great, really really well. My skin is looking so much better, and these sensitive areas appear much healthier after using Rephresh topical gel for the past month. Overall physical comfort is greatly improved, and I don’t find my skin itchy or sensitive as it was before. We briefly discussed adding Estrogen Cream, but don’t really think it would add any benefit (at the moment). For now, I’ll continue to use Rephresh, and follow-up with my GYN after my 6-month NIH check.
Also, something really wonderful and new yesterday – I had grapes for the first time in 6 months! Yes, they were soaked for 10+ minutes in my 1 part Vinegar + 3 parts Water solution – the wait was worth it. And, I had them later while watching TV with Andy…that was a case of my eyes were bigger than my stomach but they were so good and juicy and sweet. I went to bed with a slightly sour stomach and vowed to never eat grapes again. This is a lie, as I am alive today – grapes will be on my menu.
Aside from my power nap, the rest of my day and general things with my body were uneventful. I still applied all creams and lotions, and I enjoyed watching the cats outside (all 4 at once, which never happens). I continued to drink as much water and hot water and tea as I could manage, as I love my Kidneys and have a blood draw in approximately 39 minutes (which I may or may not be late for). Today, after my blood draw, I’m headed to Bent Creek for a walk in the woods – nature will be good for me and I’m looking forward to spending time on a trail. Later, I’m chatting with Jennifer, my social worker from the NIH for a check-in – I always appreciate her feedback. It has been so helpful throughout this transplant process.
With that, I’m off to make more tea and get dressed for my day. Make it a great day everyone!
And of course…kitty pictures. Because, you know, cats.
That whole business of intellectually knowing one thing and yet having your emotions get the better of you is a real challenge. You are fortunate to have Andy to provide comfort and reassurance. You handled yesterday’s fatigue well by napping, and I hope the walk today will bring some pleasure. It must all seem like such a delicate balancing act, but you are managing well.
Grapes, sweet and juicy. YUM!! My friend Lois freezes green grapes and uses them to keep white wine cold in the summer!! Your transplant recovery is a
yo-yo kind of thing. I’m sorry. If it would continue getting better, instead of this back and forth thing. Dad and I count the days until you can stop the immunosuppressant drugs and move on to a different phase. Looking forward to seeing you and Andy in early May.