With CRPS, it is very hard for me to go out. I have difficulties with my mobility, and being “comfortable” when not in my house, but the hardest by far is the anxiety about people, and people. A perfectly OK day can turn sour in less than a second if someone brushes by me too close, steps on me, bumps into me, or touches me on purpose (yes, it happens). Even when I warn people about my disease and not to touch me, they still do it. People suck sometimes, what can I say?
Some events are so important to me, that I accept all of the vast and sometimes unknown dangers to attend. The next event coming up that will wreck me physically but lift me emotionally is a family friend’s wedding. I am very excited to go, although when we were first invited I never thought I would be unable to dance, walk on my own, or even enjoy a Scotch. Life, it will surprise you. I am very excited for this wedding. The bride and groom are a wonderful team and I am very happy I get to join in.
So, in an effort to let everyone know what it REALLY takes, here is a list in no particular order. I present to you, The List of Things I Have to Consider Before Attempting Excursions in My New Life…
- How do I feel today? On days when I am already flared up, an excursion of walking to my bathroom in the house can be too much. So even if something was planned, if I am having one of the Really Bad Days, it’s not very likely I will make it.
- What is the environment like? Is it a doctor’s office with not much room and many chairs, is it a crowded party where I won’t have personal space, is it somewhere like an ER where people pay even less attention to those around them? An ideal environment is somewhere not too loud, that is not cold or windy, with lots of space, lots of places to sit or lay, and not too many people.
- How many people will be there, and what will their state of mind be? Parties where people have been drinking absolutely increase the danger for me. Drunk people are clumsy, forget easily, and generally don’t care about things until it is too late.
- How far is the car ride? Will the car ride preclude me from going because the car ride is too far/ too bumpy? How many times will we have to open and close the doors while I am in the vehicle? I can do gravel for a few minutes TOPS, and that will flare me up before I have even arrived at the destination.
- Will I be able to medicate at this location? I have a variety of medications that all require different procedures. When I put on my cream, sometimes people see that as me exaggerating to others when I say that my leg should not be touched. Putting on my cream causes me a ton of pain, but sometimes I need it. 15 minutes of flare for 45 minutes of relief is worth it, depending on my symptoms that day. I don’t know why me putting on cream is like a beacon for people, but it has been before.
- How long will I be there? At about 2 hours, I usually get very tired and need a rest or some downtime. Excursions are exhausting for my broken body.
- Will I be able to leave quickly if something unpredictable happens? Unpredictable events including but not limited to: being touched/bumped/stepped on/pushed, sudden pain flares, overwhelming anxiety, a dog hurting me, wind picking up, stepping on a rock, etc. Many things can happen when your body is in pain all the time and is hypersensitive to stimulus.
- How much support do I have? My wonderful mom Tobe is my #1 caregiver. When Tobe goes somewhere with me, I know I always have someone watching, someone willing to explain. It really makes a difference.
- Is this excursion important to me emotionally? I will take greater risks in my excursions if they are important to me. Example: Going to Saskatchewan to spread my grandparent’s ashes. Even though it was physically the trip from hell.
So, these are all the factors I have to consider and ponder before even leaving my house. From there, I just sort of hope that nothing goes wrong, and that I considered everything. I also double check for my Medical Alert bracelet. I take it for granted I have always been conscious in the hospital to explain my condition and watch for physical interference.
Also for the wedding I apparently have not done a full makeup look in a while, so I am trying to re-teach myself not to look ridiculous. My sister told me to consider what I was planning to wear, as we fixed my wheelchair to have my left leg up. Unless I want my crotch to join the party, maybe a dress isn’t best. 😀