We’re home! Paul and I had an amazing time on holiday, although it has taken me a little longer to recover (a weird concept I know) and get back into a routine than I expected. I’ll be writing a post about it sometime soon so look out for that. In the meantime I decided to write about a topic that is a little more serious and controversial first though, although it does tie in to our holiday. The fact that Paul and I actually took the leap of faith and went on holiday is a direct result of a change that happened in me around two years ago that I’d like to tell you about.
The vast majority of feedback I get about this blog is positive and encouraging, but when I have received criticism, or questioning (of the constructive kind), it has often focused around the name. I chose ‘Chronically Katie’ as the name of my blog because I thought it would be a fun play on words. I have a chronic illness, but I am also chronically myself. When I began speaking about my illness openly and honestly on both my blog and social media sites, always envisioned the day when I would no longer write about my own health issues. One day I will write as a recovered spoonie, I’ll give advice and encouragement to those still fighting. I never intended the name to suggest that I am in any way defined by my illness. I talk a lot about my illness online, but offline I barely mention it, unless I need to. I put all that energy into speaking about my chronic illnesses online because I want to raise awareness and interact with others in a similar situation.
Having said that, I have let my illness control my life in the past. When I first became ill I was a teenager and completely overwhelmed by what was happening to me. I had no idea how to cope, I only knew to exist through each day. I developed unhealthy ways of coping with what was happening to me and the idea that CFS (my only diagnosis at the time) didn’t have to define my every day never occurred to me. Luckily, I did get better for a while so my illness had less of a control over my life.
I never learned to take control of my situation so when I became very ill overnight (literally), I once again was plunged into a world where I had no say in what happened to me. If I wanted to do something, it would be up to my illness if I got to do it or not. I was a victim. When I started going to church again about two years ago, a lot of people there challenged me and Paul to start fighting, and stop living in that victim mentality. For the large part, we thought that they just didn’t understand our situation properly. How could someone so sick have any say in their life? My illnesses had taken over so much that it not only dictated my life, but also Paul’s. Eventually, I began to understand what they were saying. I may not have control over my health, I can’t dictate my pain or energy levels, but I can dictate my response. For example, when I have a bad pain day and I can’t get out of bed, I can either wallow in self pity, or I can choose to look for the good in that situation. It sounds a bit crazy I know, so let me explain a bit more. I used to think that whether I got a degree would depend on what my body decided to do, and okay, to an extent that’s true, BUT (a big but) I can make the decision to fight through and do whatever it takes to complete my degree, no matter how many years I remain a student.
Am I beginning to make sense? If you’re a spoonie or suffering from any kind of sickness, I’d like to challenge you to think about what I’m saying. It breaks my heart to see so many people (online) believing that they might never get to achieve their ambitions because of their sickness. There are lots of inspirational people out there proving just the opposite, I’m going to be writing about some of them on here in the coming weeks.
If you have a story about a time when you decided to take control of your life, not necessarily when you were sick, then I’d love to hear about it. You can post it in the comments box below (anonymously if you’d like) or e-mail me at firstname.lastname@example.org . It’s not an easy decision, it means making yourself vulnerable, so I think it would be awesome to encourage each other by sharing our experiences.
Love Katie x