The last week or so has been a challenge. We got back from vacation where I had some really good days. Some aches but nothing major so I was feeling like “I’m okay”. The false security of being able to go back to the way I used to do things – constantly on the go.
Fast forward a week later. The aches have turned into not sleeping, exhaustion, tingling in my arms and legs along with the ever changing mood swings. Now there are more tests scheduled and the 6 month round of MRIs. Now there is talk of looking for a comprehensive hospital specializing in “difficult cases”. I just love hearing I am a difficult case.
I was talking with a friend who was truly trying to understand my struggles when I shared “the spoon theory”. The Spoon Theory written by Christine Miserandino was used to describe her battle with Lupus to a friend. It is a great way to explain those silent diseases. You know, the ones where we don’t look sick.
My days go 50/50. Some are great while there are days when I struggle. I walk a little slower. But don’t most people creeping towards 60. Breathing issues come with weight gain but really I didn’t have this much trouble when I was almost 300 pounds. Yes I was! Memory issues – we all have them, right? Senior moments have progressed to not remembering key events in my life. The unexplained mood swings and actually having to talk yourself into getting up in the morning because you just don’t have the energy to move.
There is frustration when people make comparisons to our struggles seeming like it is no big deal. Our struggles are real. Isolated symptoms are manageable but when they are all put together it is a nightmare. The difference in being sick and being healthy is having to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
So what is the spoon theory? Start with a handful of spoons (say 12)…
If you are healthy, you have a never-ending supply of “spoons”. But when a silent disease forces you to plan your day, you need to budget those “spoons” throughout the day. So you start with 12 spoons. You always have to be conscious of how many you have, and don’t drop them because you can’t forget you have _________ (fill in the blank with your hidden diagnosis).
Now, list all your tasks for the day, including the simplest one – the ones you don’t even realize take any effort to do. Each task will cost you a spoon. Yes, each and every one of them.
Crack open your eyes and take a mental assessment of your body. Getting out of bed is an effort because you didn’t sleep well (1 spoon). Get a shower (1 spoon). Wash your hair (1 spoon). Get dressed (another spoon). You are already down 4 spoons and you haven’t even made it to the kitchen. Two more spoons to make breakfast and clean up. You are down to 6 spoons and you haven’t gone to work.
Commuting to work (1 spoon). Sitting too long, one of the toughest things for me (another spoon), Lunchtime – skipping could cost you a spoon. Three more gone and half a day of work left. More long hours sitting or a hectic day at the office will cost you another spoon.
Commute home (1 spoon). We are now down to 1 spoon. Dinner to prepare, laundry, prep for the next day at work or maybe you were supposed to meet friends for a movie. You may not be able to do it all. OR, if you do it all, who knows what tomorrow will bring.
So, what happens when the spoons are gone? We are done – unable to push any further and it is time to rest or crash. Regardless of what your silent disease is, we live with the looming thought tomorrow may be a better day BUT it could be worse.
The hardest thing for me is slowing down. I want to do it all. I want my old life. I hate missing out on things. I get frustrated, I need to think about the whole day’s plans before I can attack any one thing. I miss the freedom of just doing. . I miss never having to count “spoons”.
I share this not for sympathy but so others can understand the challenges of those with a silent disease. I see this as a blessing just as I saw my addiction as a blessing. I am forced to think about everything I do. I am forced to be in the moment and not waste time or energy.
Do you know someone who is struggling with a silent disease? Take a moment and give them a hug to let them know you NOW get it.
Have a ThirtyOne-derful day!