Inevitably when you have a chronic illness you get bored. I get bored. I hate being bored. Part of starting my blog was so I would have something to do and something to think about!
You have to be so careful when you are bored, it is very easy to get trapped in negative spirals of thinking. Being in the Police I quickly learned how to deal with being bored. I don’t mean that disrespectfully or unprofessionally, but if, say, you are stuck in a field by yourself guarding a crime scene for 8, 10 or 12 hours you are going to get bored. I found that if you fight against boredom if you allow it to distress you, it only makes it worse. Acceptance was a big part of how I dealt with boredom; I would acknowledge I was bored and move on, allowing my mind to wander. Generally, I would make plans for my time off or relive fun experiences. In my mind I’d remove myself from my current circumstances.
The same tactics don’t work now, unfortunately. Being in constant pain means it is hard to let my mind drift away, any movement can cause a sudden twinge and I am hauled back to reality. Making plans or reliving fun times, which was once fun is now distressing. I am reminded of loss and what has become of my life with no guarantee that it will return to how it once was. I long to be free from this, to walk, to run, to sit outside for longer than 2 minutes, to dance with my wife, to play chasing with my son, to stand on top of a mountain and see a distant horizon, to see further than the internal walls of my house, just to be free.
Boredom now is more than boredom, it is a reminder of the impact this illness has on me and those close to me.
But I won’t let this situation persist, mainly because it is too uncomfortable. So I have changed my focus. I now spend my time thinking about how I can make life better for others and myself. Every so often I discover a little gem of information that helps me along the way. For instance, this evening I learned that resilience is not a personality trait but has more to do with your interaction with your friends, family, peers, community, and environment. By interacting, even just a little, this gives you purpose, means you have value and occupies your mind. My main interaction with the outside world is through social media. I have been amazed at how active and vocal the ME/CFS community is. There is a wealth of information and support flying around social media.
In May my wife and I were fortunate enough to be invited to a Parliamentary Reception at the Scottish Government focussing on ME/CFS. We listened to and met some inspirational people, all of whom are dedicated to bettering the lives of those with ME/CFS and those who care for them. I also hear some utterly harrowing tales of the treatment children and adults that had been forced to endure, some of which has now been discredited but is still recommended in many health boards, and the devastating permanent effect it has had on them.
Yes my boredom is a burden and some days it does, on occasion, make me miserable, as it would for anyone. But I try to view it as a symptom of this illness rather than a consequence of it. This gives me hope and a more positive outlook because I have and can take steps to alleviate some of my symptoms. I think perhaps how I coped with boredom before is that I knew when I was bored it would, in fairly short order, come to an end. The difference is now there is not necessarily an end in sight, nor is there a means that I can control that alleviates the tedium of being chronically ill. However, this, and most things in life, can be reframed by changing your reference point. I like to explore new possibilities in my mind; could I start a charity? Can I do some very gentle yoga? Should I write a blog?! These are all things that I consider and exploring them brings me relief.
This is one of my favourite things to think about: There are roughly 250,000 people in the UK with ME/CFS. All of whom experience similar symptoms to a greater or lesser degree. Not all receive the same treatment, some receive none, not all receive benefits or help – many receive none. A significant number face judgement and derision from their communities, peers, friends, families, and professionals. Now just suppose that all of that 250,000 plus their carer’s, families and friends who understand the condition, sympathetic professionals and opinion makers, which could perhaps easily number over a million people, could come together. If we could raise our voices in unison, in one place, so that we have to be heard. To say unequivocally that we have gone through enough. That we think an annual budget of less than £1 per ME/CFS patient is an absolute disgrace, a scandal in fact. That we desperately need more than one ME/CFS nurse for the entire country (as it is in Scotland), and that we are sick to our stomachs of being refused what should be ours by right because those who assess us don’t believe the condition exists and that their targets are more important than our wellbeing. That we matter and our suffering is no less because there isn’t a test sensitive enough yet that can identify our illness.
Millions Missing and ME Awareness were brilliant campaigns and the effort put in by all concerned was huge, but as with all campaigns they culminate before fading from the public conscious. Imagine if we, a number of people equivalent to the entire population of Birmingham, can find a way to be heard consistently and cohesively heard then we will no longer be ignored and marginalised. Just a thought…