I am just me most of the time. I don't pretend to be someone I am not, I don't pretend to be able to do things I can’t, I ask for help when I need help, I don't pretend to feel okay when I don't.
But when I go out into the 'real' world...
I become a Superhero. No one would ever guess my true identity. I am now a brave, fearless Superhero ready for anything. I appear normal. After all, I don't look sick, right?
To be a Superhero takes lots of skill and planning. To reveal my secret identify (aka RA) would have dire consequences. So many questions (and judgments) would come forth, and to honest, I just don't have the energy to deal with them, nor should I waste any energy on them. And once in a while, it is kinda nice to play dress-up and pretend to blend in just like everyone else.
So here are my…
1. Rest. If you know you have a planned outing or event, make sure you are well rested. Do not over exert yourself in the days (or hours) leading up to the event. Napping prior to getting ready is advisable.
2. Get ready. Make sure you have chosen your outfit wisely. It must be comfortable and hassle-free. Will you be able to remove any outerwear independently? Most importantly, pick appropriate footwear. Will you be standing for extended periods of time? Will you be able to sit and rest your legs/feet? Will you be required to remove your footwear? Can you easily remove your footwear without assistance? Should you bring indoor shoes (slippers) to help cushion your feet (especially if you will be walking/standing on hard surfaces)?
3. Survey your environment upon arrival. First, you must observe your surroundings with intricate detail. Do not overlook anything. Locate all areas to avoid or develop a strategy to navigate through or in these danger areas. Are there places to sit? Your legs or feet may need a rest. If you choose to sit, will you be able to get in and out of this furniture without assistance? Will you be required to use any stairs? Do the stairs have a handrail to assist you? Before using any stairs, check for alternates, they may not be obvious. Check for any wheelchair/disability signs before attempting any staircases, these signs may be clues to elevators, escalators or even ramps. Would someone notice if you needed to use the elevator to go up or down just one level? Where is the bathroom located? Is it easily located or does it require a long walk or stairs to access?
4. Medication. Develop a medication plan. Will you be required to take any medication while at the event? Could you do so discretely? Could you take your medication prior to or after the event?
5. Stay hydrated. Drink lots of non-alcoholic fluids. Dehydration can aggravate inflammation and pain. If drinking water is not accessible, please request it.
6. Avoid triggers. Do you have any known foods that could trigger a flare? If these triggers have a quick onset, it is best to avoid them. If you choose to consume a known trigger, you are accepting any consequences that could affect this and events in the near future.
7. Moderation. This is key, especially for a long event. Be sure to exert your energy at a constant (moderate) rate throughout the event. Or alternate your energy exerting activities with bouts of rest (but do not rest too long as joint stiffness may result). Listen to your joints and your body.
8. Enjoy yourself. This is one of the most important steps, if you want to be a successful Superhero. Enjoy your time. Good company and conversations always keep the secret identity in check. A happy time outweighs a little pain, always. Have a good time! And don't forget to smile!
9. Exit plan. Should the fatigue or pain prove too much? Do you have a polite strategy to vacate the premises without drawing attention to yourself or your secret identity? Does anyone that accompanied you to the event know of a possible exit plan? Debrief then prior to arrival at the event. Did you drive yourself there? Be sure to allow extra time and energy to allow you to safely drive yourself home. If you are unsure if you will be able to drive yourself, be sure to have an alternate method of transportation available.
10. Rest again. Upon your arrival home, it is best to take off the Superhero disguise. You have earned some rest and relaxation. Life as a superhero is sometimes tough.
Remember, anyone with a chronic illness knows that to appear normal requires great strength and bravery. Be a Superhero!