What if we viewed lived experience as an asset? As an asset of professional, economic,…
I’ve been meaning to get my blog up and running for a while, I created it a few weeks ago and haven’t written a post yet. I apologise for that. I’ve struggled to write anything legible and remotely interesting due to pain, fatigue, brain fog and good old writer’s block. I hope this post is worth the wait.
My health is very poor at the moment, and I’m deteriorating all the time. I don’t notice it so much on a day-to-day basis but when I look back it becomes very apparent. All I can think is “what happens if I continue to deteriorate like this?”, “how bad will things get?” and “how will we cope?” I have no quality of life now, so what happens if I keep getting worse? It’s scary. I know not much can be done for me anymore, and I’m a very complex patient to treat, but I feel like my doctors aren’t even trying. We ask them not for a miracle cure but simply to try and improve the quality of my life. I am hoping we will get somewhere over the next few months, and that 2013 will be a better year than the last 5 have; it’s been 5 years that I have been “ill” now. I want to say it can’t get any worse, but I know it can. I often say “it can’t get any worse than this” but life seems to take that as a challenge, so I don’t say it anymore. What about if I said things can’t get any better? Maybe then my life will take that as a challenge and my quality of life will improve? Oh I don’t know.
How did we get here? I feel like I’ve stepped into someone else’s life. My quality of life is so poor and I suffer so much. I’m alive, but I exist rather than live. I want to be able to live a little, but my body keeps letting me down. It’s like mum and I live in a bubble. This bubble is our own little world, and it’s different from the outside world. People come and visit, they come into our bubble and they do their bit or we chat and enjoy their company, but then they leave our bubble and go back to their “normal” lives and so we’re just left, mum and me, in our little bubble on our own. And that’s how we feel; we have plenty of people around us, yet we still feel very alone.
We do however have each other, and we have a wonderful relationship. And we’ve never lost the ability to laugh. Sometimes we begin laughing and end up crying, but we laugh all the same. We have had some hilarious moments over the past 5 years and I will share some these with you in the future. We often say the same things at the same time; too often really, it’s scary how alike we think. This is a source of much of our laughter on a day-to-day basis; we have the same sense of humour and quite regularly say the same funny things in unison. It’s like we’re merging into one person. I bet I’m probably the only person to say that I’m glad I’m turning into my mother!
I started a Facebook page recently called Lucy’s Light, to raise awareness of Ehlers Danlos Syndrome and Chronic Intestinal Pseudo Obstruction, which is what I suffer from. I also hope to raise awareness of the issues chronically ill individuals and the disabled face to access the community and to get the help they need; it’s a constant battle. I am desperate to make a difference and to help others. I struggle with feeling useless and I hope this will help me to feel like I can contribute in some way. It’s hard to feel useful when you’re stuck in bed, have limited energy, poor concentration and you’re reliant on others.
The name of this blog reflects my attempt to have a life and make a difference by overcoming all the obstacles I face.
I hope to update my blog regularly from now on, and I hope people will think it’s worth reading.