chroniclyme

When we were all in lockdown and everything was going so, so slowly... that felt like a pretty good pace for me. It was all kinds of other BAD things for me, but the pace of life was slow without a lot of physical demands on my energy.

Now that life is mostly back to normal where I live there is something that surprises me. The friends that I got to know during the covid crisis only know the me that seems 100% normal, like them. Why not? The pace was slow and it wasn't hard to hang onto my spoons. My mind, yes? My spoons, not so much. I was in a weird comfort zone physically. But, now that everything here is open they, being very energetic people, are constantly on the go. Suddenly I feel pressure to do this, do that, go skiing, ride in a boat on choppy water, hike, go go go go go ..... and it caught me by surprise. Why are my friends, who I know love me, trying so hard to convince me to do things with them that I can't do, and why don't they understand when I say no? They seem confused, and they push a little, thinking that I'm in need of a nudge. That's not it though, and I begin to feel pressured. The tiny red flag of resentment begins to stir and I do NOT want that.

I spent a lot of time trying to figure out why it was so hard for me to resist all the pressure. Why can't I just accept that they want to spend time doing things they love? Why are they so surprised? I haven't changed, so what has?

The time has come when I have to explain things to them, but I had no idea where this was all coming from. Then it hit me. They only know the me who can do almost anything, as long as we are all doing almost nothing.

Today I remembered the Spoon Theory and realized that I basically live according to the spoons every day of my life, without really thinking about it any more. I ration my energy carefully and consider the cost if I over do. I know what causes pain and what I can get away with. Sometimes it is worth it to push my boundaries a little, actually, so I ready myself for recovery time. BUT usually it is not worth it, so I try to live in comfortable awareness of my limits and abilities. I found a great video that I will use to help them understand what is going on with me in hopes of heading off ill will and, the dreaded "let's fix her" process of helping. I'll paste it down below in case you find yourself in a similar post pandemic pickle.

All this to say, the pace of the pandemic might have felt like a strange and hard to explain relief to anyone with chronic illness who limits their spoons. It finally makes sense to me, though, why re-entry is much harder than I thought. Everyone else sped up while I am basically just beebopping along at a little better than lockdown speed. So, be kind to yourself, and also to your friends who might be a little confused about the reality that you might not be able to keep up, you might have to say no, or you might not really understand what's going on either.... just keep on loving each other and try to explain where you're at. That's why I'm going to do. Wish me luck!

youtu.be/Hh59lPG5ifk

#chroniclyme #Spoonies #ChronicIllness #Friends

I’ve been trying to get out in the sun and fresh air to paint before the real cold settles in. Many days I don’t have the energy but a few days ago it was so nice out that I took out my water soluble crayons and played with them on my deck.

#Art #ArtTherapy #painting #distraction #DistractMe #Inspiration #ChronicFatigue #Fibromyalgia #IrritableBowelSyndromeIBS #chroniclyme #sibo #ChronicPain

27, I am 27 years old amd feel that life has thrown more then enough my way. I walk the path of being chronically ill and the path of being a care taker. Never once when I was younger think that I would experience so many things in such a short time. I feel I have so many stories that just fall on deaf ears, the desire to help others has just grown more with each life event I encounter. I dont know if there is any other way to release these feelings than to help someone else on their journey when it starts at a young age.
It feels like I have no safe place to go and share my life experiences or how I am truly feeling in our society today.
Thank you for listening.