Like with many chronic conditions, independence is one of the things you tend to lose when you have CRPS. The symptoms are such that doing normal day to day activities are a challenge. It’s a running joke online, you know you have CRPS when you need a nap after a shower. But truly, I’ve needed a rest after a shower many a time!
As my CRPS has improved with treatment, I’ve been able to do more for myself. I’ve come to appreciate the little things, I can wear clothes with buttons…and do them up myself! I can carry my food or coffee…and not drop it. I can hold my horse’s reins or my dog’s leash. So many things have come back but I still rely heavily on others. My breakfast is brought to me each morning because my calorie count is low, after a night’s sleep, and I’m often shaky. I don’t drive if I’m not feeling great because my spatial depth perception is out. Words go missing and I end up “signing” what I mean…many of my friends are now expert at this guessing game.
At first, the frustration was immense but eight years on, I’m appreciative of how dependence has allowed me to connect more deeply with others and start conversations around pain. Whilst few people have CRPS, everyone has been in pain and needed someone to lean on. It makes us all feel vulnerable. Others tend to feel safe enough to lean on me once I’ve lent on them first. This interdependence builds connection and isn’t that what life is about? Bréne Brown says “We are hardwired to connect with others, it’s what gives purpose and meaning to our lives, and without it there is suffering.” She goes onto define connection as “The energy that exists between people when they feel seen, heard, and valued; when they can give and receive without judgement; and when they derive sustenance and strength from the relationship.”
Over the years, I’ve been blessed to connect with (and lean on) God, my Mum (she has been a rock), my family (including my fur babies), my friends, my clients, my colleagues, my doctors, my biokineticist, my psychologist, acquaintances, and strangers. I’ve come to realise I don’t want to get back to independence, we aren’t designed to be reliant on only ourselves, I want to remain connected.
When I’m in the midst of a pain flare-up I get asked “What can I do?” and often, there is very little anyone can do physically to reduce my pain. Keep me warm, fed, watered and in a quiet, cosy place. I’m a bit like an odd house plant! No drafts, please! But mentally and spiritually, connect with me. Let me know that you get it and you aren’t judging me. Two of my favourite things are:
- messages of support and understanding
- companionship, as distraction can be a wonderful thing and conversation is awesome
They may seem simple but having been rejected, labelled and judged, people in pain can never receive too much love.
Building awareness is essential to increasing understanding and improving diagnosis. I’m surrounded by such an amazing community, locally and abroad, who have taken the time to understand me. Sharing #CRPS articles and facts is one of the ways you can help grow the community of understanding. You can share it by forwarding this article or sharing posts on social media.