This has been a large extent of my day today….sleeping or resting on the couch, as my vessel sails into another storm, and I must ride it out.
I knew there was a high chance that I was about to go into another bad flare when, 2 nights ago, I had terrible insomnia accompanied with cold sweats and spot fevers. Today I went about my regular morning routine; was in pain but it was manageable. By 12:30 I hit the wall. Thankfully I was back home by that time.
The fatigue was so bad I couldn’t keep my eyes open, but the pain was such that it was uncomfortable to rest. The fatigue, only worsened with the pain and it finally won. I drifted off into a state that is not a deep restful sleep; a place that I’m still aware of the pain, but no longer can stay awake. It’s an in between place. A place I cannot control.
Its beyond frustrating because I have so much I needed to do, but my body, systematically, shut down. My body had different plans than my mind. This, I now know, is no longer something I can barrel through, like I did for years. It is progressively getting worse, but all I can do is take it a day at a time.
When I woke up, I could barely move. My hips, shoulders and elbows to forearms felt like there were sharp metal skewers piercing through them. My bones ached and my skin hurt. My head was dizzy and my body unsteady. How can this be…I was the dancer with a 10 turn pirouette. I was the firefighter who scaled rooftops and beams. How indeed.
The dangerous question is “why me?”, therefore, it is a question I refuse to ask, because the truth is, if you ask “why me?”, you better follow it up with, “why not me?”. Disease and illness don’t discriminate for discrimination sake, and I certainly don’t believe that this is somehow a punishment from God. It blows my mind that people still believe in that sort of thing. No answers to the ‘why’ question would suffice anyway, so it’s unproductive to ask unless used in a scientific hypothesis, formula or equation.
The things that really bother me are how this will eventually impact my children. It already has in many drastic ways, but my kids are troopers. I’m a lucky woman. I also think about my adventurous spirit. I am becoming aware that my solo hiking adventures may become more risky. I’m not ready to give it up yet, but it is something I think about. I need to be responsible where my kids are concerned, however, I also feel that it’s my responsibility to be the example that says, just because shit doesn’t go your way or seem fair, doesn’t mean you lay down and die. Life is short and it’s meant to be lived in a way that is meaningful, fullfilling and inspiring.
Does this suck? Hell yes it sucks, but I still choose to see the beauty in it. In fact, there are moments when I feel like I “get it” on a level we all strive for, but self inflict obstacles. I’m learning that what may appear as the biggest most tragic obstacle, may in fact be my key to something very deep and meaningful.
Do I ever look forward to flares? Hell no! I’d do almost anything to make it go away, but I am finding reserves of strength, Inever knew I had.
Do I pray? You betcha. However, I don’t pray for my will and for it to be gone. Prayers aren’t meant to be like throwing pennies into a wishing well. No, I pray for strength, courage, bravery, and personal love, kindness and compassion. Of course it depends on the day, but so far, my prayers have been answered. For this I’m grateful.
Thanks for letting me share my vulnerability on this difficult day.
As always, love, light and freedom.
💚The Crazy Celt