Hello fellow spoonies and spoonie loved ones. I hope you all had a good weekend. Did anyone else over do it, over-indulge on Super Bowl food, run yourself down trying to take care of things for game day parties or appearance at a party? Ok, we can all raise our hands together…. ME TOO!
I knew I’d done too much on Saturday and should have quit when my body gave me all of the warnings it could, but I didn’t listen. I chose instead to push through the errands and get them done because ‘I was already out and my husband was already doing enough.’ I told myself I’d rest when I got home and I’d rest on Sunday…. HA! My saint husband got up with the kids and let me sleep in, but once I was up and of course NOT properly hydrated I started to try and prep food and get things ready for the game. He kept telling me to sit and just tell him what to do, but my OCD and need to pretend like I can still DO.ALL.OF.THE. THINGS. kept me moving. We even had a sibling visit for some of our kiddos that had to be done. Hubby offered to handle that too, but did I take him up on it??? Nope. He could see the exhaustion and pain on my face; he knows me and likely knows my limits better than I will accept myself. WHY??? That’s what I’m asking myself today. My BP is horrible, I’m dehydrated, my HR is either tanked out or through the roof, exhaustion/fatigue is extreme, the list continues… I will be getting hooked up for more IV fluids this afternoon before my husband has to leave for work so hopefully my symptoms will calm down and I can make it through the night and early part of tomorrow until he’s awake and takes over so I can rest and recover some more.
So, the question still remains, WHY? Why can I not just simply look at the to-do list and say here’s what I can handle today, could you please do the rest? Does it really matter if the cleaning schedule isn’t 100% done every day, or if he brings home the wrong brand of ketchup or forgets an ingredient I needed to make the things he wanted for Super Bowl or any other day? Does it really matter if I can only make it through Sprouts, but not Target, Sprouts and Safeway? No, it doesn’t. I should have been in bed most of Saturday and yesterday, but I kept pushing fluids and myself. Lying to myself the whole time that I was imagining things and I wasn’t really that bad… Just keep going, you can do this.
I spoke the other day of how I let all of the feelings in and decided that accepting my illnesses and my limitations was not the same as defeat. It’s not. I think the people who can say, “here’s what I think I can manage today, would you please help me with these things…” are the strongest of us all. They’ve figured out how to ask for the help without piling on the guilt, inadequacy, failure or whatever emotion we place on ourselves when we feel like we’re not handling all of the things. So, I think what I need to still work on and continue to try to do without accepting defeat is to hear my husband asking to take over and let him. I need to be constantly assessing my remaining spoons and quit before I’m out. If I wake up feeling like I have no spoons, I need to say that too. I don’t understand my brain’s clear ability to equate resting and doing what my body needs to total failure. But, I CAN work on changing. This may be the hardest lesson/task I overcome while dealing with all of these chronic illnesses piling on. But, I’m trying. I am committed to seeing it and doing my best to modify my behavior and thinking.
For those of you who are reading my words and are supporting those of us with chronic illness I would ask you to really look at your loved one. Take an inventory of their symptoms and triggers. Do they struggle with asking for help? Do they never ask for help and end up in the hospital or missing days/weeks of school or work? Do they have a hard time identifying or communicating their needs? Do you see them push through things and then crash? Sometimes it takes an outsider to help us see that we’re pushing too hard. Sometimes there are too many things. Even if they’re things we WANT/NEED to do, they may not be good for us long-term. If it’s your child, try the spoon analogy. There are some great visuals out there if you search ‘spoonie’ or ‘spoons per day’. Maybe a visual identifier would be helpful for both caregivers/loved ones and the spoonie… Whatever works for you or your loved one, that’s what matters; not what social media or a stranger who tries to be nice and says,”But you don’t look sick?!!” What works for you to keep journeying towards a better quality of life, better answers, the best version of yourself. Are you with me?? Let’s do this together friends… One spoon at a time.