I’ve been in full body flare for a week, with hardly a break before that. These flaming nerves keep cranking up their signals and demanding to be noticed in all of the parts of my body that reach from my cheeks to my toes. At times, it’s all I can do to lay and breathe as my body stings beyond the reach of any medicine that I have met. I am doing pretty well to keep my chin up and plough on through this prickly time field of thistles.
Sunday brought me the chance to attend a barbecue and celebrate the birthday of a friend. I have to acknowledge what my body sets as its limits or I’m headed toward further pain, however, I was determined to arrive and say “Happy Birthday” at her family celebration, even if well wishing really was all I could do. A friend’s celebration with their family can often be more stressful than a gathering of just friends – there are many people who are comfortable with one another but unknown to others completely, which can create a feeling of exclusion or even intrusion for those comfortable with less of the people. I tried to relax as much as possible, enjoy the sunny day and the memories invoked by noise of children playing, whilst avoiding too much adult conversation.
Social situations are a little bit awkward for most people. There are few who easily wade the waters of surface conversation without causing accidental ripples. When you suffer from CRPS, it can feel like a giant elephant in the room. I still feel the pain, but, I don’t want to talk about my condition in great detail – just the same as I don’t want to talk about famine or homelessness, when I’m at a party. Getting deep and depressing doesn’t really run parallel with having a good time. The close and meaningful parts of friendships are better kept for the more private chats. In a party situation, I often don’t have the strength to meet new people because of how draining it is to explain the reality of me. I don’t want to answer, “So, what do you do with yourself?”
I’ve found the easiest way for me to survive a party when I am not feeling my best is to lay as low as possible. I didn’t speak to many people at all…but I did get to see the birthday girl. I still had a little fun, a play in the pool and caught up with a couple of friends. I felt awkward and I was in a lot of pain, but sometimes putting on an emotional mask is better for everyone. If the pain gets bigger than the mask then that’s a good indicator that I probably shouldn’t be going anywhere in the first place. Sometimes choosing to show only parts of who you are and what you’re feeling in a particular situation can be the wisest choice, whether you are suffering from physical pain or some other mental or emotional turmoil. I definitely needed that mask to make Sunday successful for me.
I might not have had a wonderful time, but let’s not forget, it wasn’t my birthday. It wasn’t my spotlight. It’s hard to be in so much pain when nobody can see it and the longer my suffering continues, the more invisible I feel. Repetition gets boring fast. Sure, it might be harder to endure the pain than to hear about it, but that little piece of wisdom doesn’t change the fact that it is still hard for the listener to keep taking in parts of another person’s suffering. Changing plans is a great option to have when I can create it, however relationships bring with them another person’s world, their needs and their schedule. I can’t reschedule someone else’s birthday or wedding or Christmas party, all I can do is attend where possible and try to find peace with missing out when I can’t attend. All I can hope for is that the people who are important to me understand the unpredictable nature of my illness.
Learning to plan properly is something I am working on, I can’t control everything, but I can try to organise that for the things I want to do that count as ‘up’ time, I schedule in some ‘down’ time to recover. I had to lay still for hours after the barbecue and I did my very best not to feel as though I should have been doing something more productive. The longer this flare goes on, the more times I have to just stop, breathe and allow the most painful times to pass. I’m trying hard to find the balance between activity and rest so that I can do more meaningful things with my time. Today has just been spent doing parts of housework interjected with long periods of couch, however I’m here, I’m still thinking and I might be in pain but I’m doing my best to not let that put the brakes on my life completely.
Love & Parties,