Turn to Those Who Have Your Back

Written by Alissa Brown for the RSDSA blog.

How and when did you develop CRPS/RSD?

I turned around too quickly on a tile floor which resulted in a sprained knee and CRPS. This happened in January of 2010.

What has daily life been like since your diagnosis?

Somehow, every day is the same, but also extremely different. I am always in pain and struggle to force myself to get out of bed, but once I am out of bed, it is all up in the air. First, I will let my dogs out and figure out what kind of weather is going on outside, then I pop my pills and start to get ready. I have to decide what to wear based on weather and the kind of pain day it is. If I am burning hot and my leg feels like it is on fire, I will put on light pants regardless of weather. If I am cold and have more of a bone-deep pain, I put on something warmer, heavier, and softer.

My job, where I teach anywhere from 9-140 kids at a time, requires me to be on my feet all the time, but that is extremely hard to do on most days. I often teach while sitting on a chair if it happens to be a day where standing is rough. On days when sitting is harder, it is not so difficult to do, as long as it is not a game day or competition day, where I may have to sit on a bus for hours.

When I am finally home after a long 12 to 20 hour day, I am so beat that I just want to go to bed, but I NEED to have a shower before I go to bed. I will get home, greet my dogs, and head to the shower. Most days, I do not shave because I cannot handle it. When the day time takes so much out of you, you cannot handle being pushed over the edge by something like shaving. I already feel like I have a sunburn that is being scrubbed with sandpaper while my bones are being drilled constantly. Whether I shave or not, once I am out of the shower I am done for the day. I lay down with my dogs and either throw a toy for them or just cuddle until it is time for bed.

If I am lucky, I will fall asleep right away, but that is extremely rare. Usually I will lay there for a few hours, switching positions constantly, until I finally drift off into a restless sleep.

What is one thing you wish those without CRPS/RSD could understand?

Not every day is the same! I may feel well enough to do something (like go to an amusement park or something with my family) one day, but not the next. In fact, if I push myself one day, you can pretty much guarantee that I will be paying for that for the next week or so.

Also, please understand that sometimes when I snap at you, it is not about you. If you accidentally bump into me and I am having a high pain day, I may react rudely or just ignore you all together. Understand that once you walk away, I am beating myself up for snapping at your or reacting in a way I shouldn’t. Sometimes it takes everything I have to refrain from screaming and yelling from the pain as I go about my everyday life, so every once in a while I may be caught off guard and those walls will fall, resulting in everything I am feeling flooding out and coming off as rude. It is not because of you, it is because of Sparky (my leg lol).

What advice would you give to newly diagnosed Warriors?

Not everyone is the same, so try not to get frustrated when you hear about something that works for someone else, but is a complete fail when you give it a try. You will find something that works for you, but it may take many tries and fails to get there.

Keep trying and turn to those who have your back. They will never understand the pain, but if they are truly in your corner, they will try to be there for you anyway.

Be prepared for any and every kind of day, so pack whatever you need to pack. If you need to always have extra meds, blankets, jackets, etc on you, do it.

Do not push yourself to do too much. And if you need a cane, walker, crutches, or a wheelchair, use it!

Join every CRPS related group that you can so that you can get ideas from others.

What activities or treatments have helped you find temporary or long term relief?

I had a Spinal Cord Stimulator implanted back in 2011. It has really helped me to get some relief. The best part is that when the pain changes, spreads, etc., I can contact the company it belongs to and they will reprogram it for me.

Sometimes, the softer the material, the better. I find that silk helps me sleep if I wrap it around my leg since it is a softer material than my quilt. I also carry it around like a safety blanket in case it is unexpectedly windy outside or I have to sit somewhere where my leg may touch something or someone.

My heating blanket has been a life-saver for those days when I am freezing bone-deep.

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