With MS, you have to measure your "spoons" ahead of time and then sometimes re-evaluate your spoon supply throughout the day. (If you missed the Spoon Theory, you can read it here: http://wearingredshoes.blogspot.com/2008/03/spoon-theory.html )
For instance, I wanted to go to Target the other day. At the time I felt I had enough energy/eyesight/balance left to drive the 7 miles to Target, shop and drive home. About halfway through shopping I realized I was about to turn into a pumpkin (my latest catch phrase which reminds me of Cinderella, another lover of fabulous shoes!) So I am at Target and all of a sudden I find myself holding onto the shopping cart for dear life (in other words, my balance was beginning to fail me) and my legs felt as though they were pumped full of lead.
This type of scenario happens to me alot and when it does I have two choices: A) ignore my body, push on and finish what I am doing or B) go straight to the nearest register and get home to rest. Frankly, there are problems with both choices.
First of all, I want to be able to finish whatever I am doing: shopping for groceries, eating lunch/dinner with friends, etc. It is extremely irritating when the rude MonSter interrupts what I am trying to do!
On the other hand, if I keep pushing my body when it starts to give me these warning signs then inevitably I will have to pay the price in some way later on. It might be later that day (my pain level spikes or my vision gets worse to the point I have no hopes of driving or seeing anything worth a darn) or it might be tomorrow that I pay the price for what I did today.
The other thing about chronic diseases is that you have to take A Lot of medicine just to stay afloat. Some days I feel like I am 29 going on 89, certainly with the amount of my daily medicines. People with MS and other types of nerve damage don't have a lot of choices. They just don't make that many drugs to treat this kind of complicated disease and unfortunately none of these drugs come in XR versions. XR stands for Extended Release, meaning take one pill in the morning and then it releases little bursts into your body throughout the day. So sadly I have had to become a Pill Popper. I take pills 5-6 times a day in order to manage nerve pain and spasticity.
Last week I helped my stepdad do hair and makeup for his show "The Sound of Music". I had several kids assisting me in The Cave, as we affectionately call the makeup room. I would arrive around 4pm and help put on makeup and braid hair and put in bobby pins and during that time I would inevitably have to take a dose of pills. I was so afraid I would forget to take them, with the wonderful distraction of 45 teenagers, so I set my phone alarm to go off to remind me. By the end of the show's run, I had kids checking on me, "Caroline, you weren't in the Cave and your alarm went off. Be sure to take your pills," or passing them over to me while I braided hair.
I had worried so much about having to take all these pills in front of them, but it sparked all sorts of wonderful conversations, and the students opened up in new ways and shared things with me about their own lives. No one has it easy- everyone has some burden to bear, whether its a serious health problem or some other type of challenge to overcome. Everyone has Something.
I think what makes it so hard sometimes is that feeling of being alone in the world. I often feel alone in my disease. I am the only one trapped in this body, with these symptoms. It is easy to feel alone. But just the simple act of someone else reminding me to take my medications, or passing them across the room to me - those tiny gestures - they made me feel just a little less alone. To quote the cheesy "High School Musical", "We're all in this together..." and that means you have people on your side always. No matter what happens to you, No matter how many pills you have to take, Even if you run completely out of spoons and turn into a pumpkin right there in the middle of the Target!! No matter what happens there are Always people cheering you on, in large ways and in tiny ones, too. And sometimes it is those tiny gestures of love and friendship that keep us all going.