When I move on from this world, they will have to pry three things out of my cold dead hands – my Coop pillow ($$$ totally worth it $$$), my Lunya sleep mask (fyi-I don’t look near as sexy as the site model but it’s still amazing), and my weighted blanket. Then again, I may just take them with me.. they’ve helped that much.
Quality sleep for me is ever elusive. Often I wake up several times on a good night and almost always around 3 am (ish).. what’s up with that? Once awake, any minute noise keeps me that way.. which makes the long drive to work that much more fun.
I have tried many things – failures being earplugs (ouch), sound machine (please refer to minute noise reference above), and even wine.. okay the wine works but one can’t drink every night. Currently I am exploring – hot tea, aromatherapy mister, and a set bed schedule that includes thirty minutes of down time. That last one though hasn’t really been kept to.. working on it. If you ask me, I am finding these mythical tales of “waking up refreshed” a bit suspect.
Here’s what loads will tell you but that I stubbornly disregarded about living with chronic pain – it takes a toll on every facet of your life. I was so busy soldering on that I failed to notice (and I tend to be a bit self-centered, which I hate but there it is). I slowly stopped doing much of what I enjoyed. I lost friends, depression took my self away, I aged more visibly, and I stopped taking care of myself.. hell, somehow it became too difficult to even wash my hair most days. I stopped interacting as much and often when I did, I was interacting negatively. I was tired all the time and all I really wanted to do was sleep.. which escaped me because the pain kept it at bay. This was me existing and honestly, part of me was resigned.. plus, my bed is super comfy.
Then came the reactions, post diagnosis, and not all of them stellar. I think it really made me stop and adjust my attitude a bit. I am fortunate for the support that I do have in those closest. To the others, though, I started out guarded. I tend to be a private person. Then someone made the offhand joke that now I have a free ticket (workwise). I silently wished for them to have to live a week in my place while I politely directed them to read up.. no one wants this ride. My better self whispered to be kind, they just do not know. I decided then to be more forthcoming in future in hopes for better.. but a fire was lit. I will do what I can to feel as healthy as I can. I will not back down or give up on myself. I don’t need someone to judge my pain, I live it everyday. It would be nice to encounter open minds and understanding.. otherwise I kindly request them to step aside. I am on a journey and need all of my energy about me. I choose not to waste it. I made my peace with the fact that this was my new normal and the rest would just have to be figured out along the way.