Spoonies don’t follow the same calendar or clock that the rest of the world does. We have spoonie time! My calendar isn’t filled with outings or activities. At the most I will have four dates marked, but on average I try to only plan one or two activities or outings per month. It is during those outings that I feel like I am really living. I am not saying that the dates in between are not worth living, because they are just in different ways. But it’s the outings that take me from my bed and that give me the opportunities to interact with the world that make me feel alive.
My May outings were Mother’s Day at Disneyland and Disneyland’s 24hour party. Sometimes I am lucky to have a month like May and am able to follow through with my planned dates. Then there are months like March when my body forces me to cancel all my planned dates. I try to space my special dates out far enough that will give my body the opportunity to return to its normal pain level before the next scheduled outing. This doesn’t always help, considering that my body seems to have its own agenda, but it has allowed me to participate in 75% of the dates I had planned so far this year.
So what about the days in between? Well, that depends on my body and sometimes the activity. The reason the activity only factors in occasionally is that while I can sometimes predict how my body will react to certain situations, there are many situations in which my body can’t seem to make up its mind on whether or not it is something it hates or likes. I could do the same thing twice within a month and have two totally different outcomes. I could bounce back quickly and only experience a minor increase in pain or I could be stuck in bed with crushing pain for weeks.
Basically I spend the days in between recovering from my last activity and preparing for my next. Anything that I am able to commit to or attend during this time is just icing on the cake! In the past I would become depressed when my body failed to allow any in between activity. But with almost two years of medicating with marijuana under my belt, my amount of activity has increased! Instead of only enjoying one to four activities per year, I am experiencing that same amount monthly. I knew that attending the 24hour party would be hard on my body and because of this I made sure not to schedule anything important soon after. Thankfully I have six weeks until my next important date, which should give my body the time necessary to recover.
No matter how long it takes me to recover from my last hurrah, I will be smiling because of the memories I made. But most of all I will be patient!!! Instead of worrying about not being the first to post a picture or video from an event, I will take comfort in the fact that I was able to attend and will share when I have the energy. The smiles from my memories will help take the sting out of the additional pain that I am experiencing, making my really bad days not so bad. I no longer look back at what I didn’t do. At the very least I have memories from one activity each month, which thrills the pants off of me!!!
Over the next six weeks I will do whatever is necessary to give my body what it demands and not just because I want to be ready for my next big day. The main reason I want to cater to my body and its pain is to thank it. I want my body to know just how much I appreciate that it allowed me to have fun with friends and family. I want to thank it for the memories it permitted me to make.
Don’t let the number of your outings or activities get you down and never compare them to the calendars of your able bodied friends and family. Be thrilled that you felt brave enough to set a date! Living with chronic pain or a chronic illness means that you follow a different time table. I may not be out in the world as often as my able bodied friends, but when I am I make the most of it!!!
Speaking of listening to my body, it is hinting that it is time for me to take a nap.
May your downtime be filled with joyful thoughts and memories!
The Disabled Diva