Today’s been very uneventful. I have been on bed rest all day because I have a family function tomorrow and what you will come to learn about spoonies is that all spoonies need to sort of bank some of those spoons, we would normally use during daily routines, for another day when we know we have a big day ahead of us.
Today my brother-in-law had a party for his twins for their birthday that’s coming up and I was able to come out and wish them a happy birthday and give them hugs and kisses and socialize for a couple of moments with some of the party guests, but for the most part I spent most of the day in bed.
It gets to be a little lonely, this constantly having to rest so that you don’t over exert yourself. There a days where all I want to do is cry because being trapped in a bedroom almost 24 hours a day tends to weigh heavy on your heart. You think about all the world that is passing you by and all you can do is look out from your bedroom window, from you bed shaped prison while everyone else around you is going about their days with their mundane tasks, their pressing errands, their lunch dates and just life in general.
I guess what keeps me feeling not as blue today is the simple fact that I get to spend the day tomorrow with people I haven’t seen for so long and I get to catch up with one of my fellow spoonies who is just going through so much and I really have not been able to be there for her the way I want to be because I’m sick too.
It’s important to know spoonie darling that while we do spend a lot of time in a sedentary lifestyle, there will be days when we will be able to feel that sun on our faces. If you take nothing else from my post please remember this one thing, please remember that (I promise you) there will be days when we will feel the sun on our faces. We have to take care in remembering that while we don’t get to experience life the way we used to before we took sick, we do get moments where the fibro fog lifts and we get to enjoy the moments of pure clarity; the pain eases back a bit and we get to enjoy the moments of practically no pain; moments where no longer are we sidelined that we can walk around the mall just simply because the energy’s there.
Those are the moments that make our spirits soar. I know that sounds very cheesy but I mean think about it; how many reruns of Charms can we possibly watch day in and day out while we lay on the sofa waiting to regain our energy to continue cleaning or to continue cooking or to just simply have the energy level to walk the dogs around the block or be able to help our children with homework? I’d like to close this post with a message for the uninitiated into this little club that we all call personal hell. I ask you to just simply remember that we’re human too, we didn’t ask for this.
While it may be frustrating for you to have the burden of running the entire household or running all the errands or just simply not being able to take a day off from work because now there’s only one income in the home, it’s just as frustrating for us, the initiated, to have to watch you go through all of it by yourself.
We’re trapped in a body that day by day betrays us in the most inhumane ways. We get to remember who we once were before we took ill. We get to remember that we were able to run a tight ship in the household, power through every errand that was in front of us for the day, we got to make it to the PTA meetings remembering to bring the refreshments, too little Joey’s soccer games, we got to hold down the 9 to 5 job and bring home that bacon at the end of the week, and now… now we only get to just remember what it was like to be able to accomplish even one of those things. We get to fall asleep in as much pain if not more than when we woke up that day. We get to go to sleep hoping that tomorrow we’re able to cross off more than just 2 or 3 things on the ever-growing list of things that is needed to be done around the house or needed to be done for week.
We get to hear about all the adventures that friends and other family members get to go on while we’re left on the sidelines. And while I know that deep down inside of you, it gets very tiring of hearing us complain about the pain and hearing us complain about being lonely or left out we are , it’s still a reality… still part of who we are in this hodge-podge of a spoonie army.
And I know that it gets to be a little much hearing us whine and complain and that there are really other illnesses out there that are so much worse and more horrible than what we may be going through, but we are still human and it’s not easy looking in the mirror everyday and not recognizing the person that is staring back at you.
And I know this seems like I’m asking for some sort of hall pass for bad behavior or poor attitude but I promise you I’m truly not, I just need to be able to reach out to you so that you can understand what your mother, father, brother, sister, son, daughter, husband, wife, boyfriend girlfriend ,classmate, or even best friend from kindergarten may be feeling but out of frustration would rather just suffer with the pain in their hearts (that sometimes can be so much worse than any one of these invisible illnesses could ever cause) than to reach out and say hold me I’m scared or hold me I’m affraid of loosing me.
So to you, the uninitiated, if you take nothing else from this post please all I am asking is just to remember we are human too and that while we may not be able to explain how lonely or how frustrated we are it doesn’t make it any less of a true statement. Well that’s all for now.
Thank you for taking time to peek inside this spoonie’s makeup bag. Until next time to all my darlings spoonies out there remember … hope is just around the corner hang in there kid and always remember save a spoon for a little lip gloss.