Monday, August 25, 2008

A Different Perspective

When I think about what I want for this blog, I guess my most important goal is to get the message across that the disabled can lead full and happy lives. My pain affects my every waking moment, but not necessarily in a bad way; it just changes my perspective.

On a scale of one to ten, a seven is feeling good; a six is very good; even through an eight, I can have normal emotional reactions to the world. Most days I walk around singing with joy in my life, and reveling in living.This joy is touched off by something as simple as the weather, a good conversation with a friend, or an interesting homework assignment. My general "setpoint" is fairly happy, and I got there through pain and disability. Thi s mindset holds until I'm about at a nine out of ten.

I treasure the small things. A drama director allowing me to be late to rehearsals so I can swim. People helping me clean up when I spill my drink all over the floor. A hand on my shoulder when I need it most. These are the things that matter to me.

More Coping Strategies...

A continuation of last night's list:

8. Self-hypnosis. This is by far the most AMAZING thing I have ever discovered. It allows me to temporarily, partially mute my pain. I only notice that it's worked when the pain starts coming back, but still, it's very useful for those times when I just can't focus off it. Instructions can, no doubt, be found in many books. I learned from "Conquering your Child's Chronic Pain: Reclaimng a Normal Childhood". It's meant for parents whose children have pain, but I still found it immensely useful.

9. Swimming. If I can get in a pool and swim laps for half an hour to an hour, I can feel much better, though again, it's only temporary. When I don't swim for a while, I feel much worse--constantly.

10. I take each day as it comes. Today, right now, I am happy, for no reason other than just because I am. But I will not analyze my happiness or ask too many questions. I will just be, just live in the happy.

Sunday, August 24, 2008

Introduction

I am a high school sophomore at a boarding school in North Carolina. I have a small group of very close friends: five or six people to whom I would entrust my life. I love to read fiction for the eight-to-twelve year old age group, and I really enjoy listening to my favorite music on Youtube: with the lyrics, so that I can sing along. I dream of one day monopolizing the Broadway stage.

And I just happen to have a chronic pain syndrome. I am in pain every waking moment of every single day. Everything hurts me: if someone thumps on a table, I can feel the bench shaking, which causes my pain to increase. My pain syndrome mainly affects my feet, sometimes my hands, and very occasionally my knees.

It is my hope that this blog will inspire others--male and female, all ages--who are struggling with chronic pain. If even one person who reads this blog discovers a product that can help them, or a clever way to handle a sticky situation, my purpose will be complete. I'd like to start with a list of the products and coping strategies that help me live my daily life:

1. A pair of forearm crutches from http://www.walkeasy.com/. These crutches are lightweight and easy to use in a variety of ways, according to your needs. I have youth size crutches, which can be used by people who are up to 5' 2" tall. The cuff is three inches in diameter. These crutches are convenient because the cuffs keep them on my arms when I raise my hands to carry a tray in the lunch line, to hug a friend, or to grab a book. And mine just happen to be bright red.

2. A pair of handgrips, sewn by me. They are made of a double layer of cloth sewn into a tube that fits around the handle of a crutch. It got too painful for my hands to grip crutches; I needed the extra padding.

3. A blanket support, from www.comforthouse.com/blansup.html. My feet are extra sensitive to touch, textures, and sound, among other sensations. This symptom is known as allodynia (not sure of the spelling). Anyway, without the blankets touching my feet at night, I get a better night's sleep and wake up feeling more rested in the morning.

4. The biggest backpack I could find when I went to the store. If you use crutches, or another mobility aid involving your hands, it is necessary not to have to carry anything. This backpack just seems to keep expanding indefinitely. It is an eastsport brand backpack (brown).

5. Every night before I go to sleep, I make a list of reasons to be happy that day. If there are more reasons for happiness than for sadness (I do NOT write down my reasons to be sad), I decide that it has been a happy day, and I go to bed content.

6. I encourage people to ask questions, even sometimes by bringing up the subject myself. I know they're curious; human nature is human nature. Better that they get their information from me, the one dealing with this. It would be bad enough if they asked my friends; while I know my friends would give accurate information that portrayed me positively, I am not in control of how much they would tell. Now imagine if these people happened to ask someone who thought I was making up my pain. I don't even want to think about that; better that I just tell them myself.

7. I do not think of myself as disabled. I mean, I know that I am, but I fully believe that I can do anything I want. I swim laps every chance I get in order to stay active and fit. I will be involved with my school's theater program this year. I dream big and achieve the best.