How I use my spoons

I have a few very good friends. I’m so thankful for them! I also have a friend who cannot understand how I use my spoons.

I have fibromyalgia, degenerative disk disease, neuropathy from toes to knees and I fight depression, anxiety and agoraphobia.  Being a spoonie (someone with fibro) I have to be very careful how I use my spoons. What that means is I have to think about what I do well before I do it. Getting up = 1 spoon. Making breakfast = 1 spoon. Showering = 2 spoons. Picking the kids up from school = 2 spoons, etc. etc. etc. I only have 12 to start with.

I can, on occasion, borrow from the next day but that means that tomorrow I have 1 less. And that’s not counting doctor visits, therapy and anything else that comes up. Goddess forbid there’s an emergency when I’m out of spoons!

I still love going to the creek, Jans creek, and hunting for geodes and fossils. I love going to the park. I love walking the cemetery. I love to read. I can be very crafty with beads.

To do these activities I have to plan ahead. For example, if I want to go to Jans creek I have to take it easy the day before and plan to take it easy the next day. That way I can make it from the parking lot to the hill, down the hill and through the creek to the little beach. I then walk around, hunched over (all this with my cane mind you), picking up stones. Then I take a rest, then it’s back through the creek, up the hill, through the parking lot, back to the car then drive home. Once I’m home I have to shower, change then fall into my chair or bed. Because I am wiped out for the rest of the day, possibly the next as well.

This is NOT fun for me. I used to be very physically active. I loved basketball, taking long walks, long drives, playing with my daughter, working, having craxy sex. Yeaaaaaah, not so much now. My body has betrayed me so much in the past 7 years that I wonder how I’m alive.

This isn’t a bid for pity, stow that crap. Not interested. This is a brutally honest look at me. I cannot do what I used to. I can’t work. I can’t take long walks or drives. I can’t do much of anything I used to do. That gives me no end of frustration and upset. Which makes me tighten up, which can throw me in to a flare. I already feel like I have the flu and all over bruising, and a flare is like every ounce of physical pain I have ever felt hits me at once. And I’ve had A LOT of physical pain.

What’s really hard is trying to explain to people why I manage my spoons the way I do, or even why I have to do so. I know people cope in different ways. Your way is not mine. But do not try to shame me or make me feel badly because I handle things differently than you do. That’s old and tired. I’m thrilled that you walking 8 miles is worth you being bedbound for a week. It isn’t to me.

That doesn’t mean I don’t want to be asked to do things. Because I do want to be asked! Just try to understand and respect if I say no or limit how involved I am. It’s not a cop-out or being a victim, or being a whiner, or acting like a cripple (yeah that’s my favorite #sarcasm). It means I’m being careful with my spoons. Accept that I’m not who I used to be. And trust me, that hasn’t been easy for me to accept either. I hate it. I hate being limited.

I’m in therapy. I’m trying to learn to cope with past issies, health issues, grief issues. Part of me is doing this for Jan, part of me is doing it for myself. I know she would want me to be happy and as healthy as I can be. It isn’t easy by any stretch of the imagination. It’s damn hard work! And I don’t need people who are supposedly my friends giving me grief because I can’t spend all day at the creek or walking 10 miles. Cut me some slack. I do for you. I accept you have limits and I do my best to work with them, not around them. Because I love you.


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