Having a chronic illness (or several) is fucking tough. My fellow Spoonies will agree with me on this, I’m sure. Being chronically ill is incredibly difficult and with it comes the grieving process. Whether it be the initial diagnosis, or a new one to add to an ever-growing list of ailments, there comes a point in every Spoonie’s journey when we need to stop and mourn over our previously able bodies.
This year, I was diagnosed with COPD (Chronic Obstructive Pulmonary Disease) and it hit me hard. I’m already living with arthritis, IBS, anemia, severe vitamin D deficiency, various mental health issues and chronic fatigue. I got the confirmation that not only am I now an asthma newbie, I have lung disease. It is a terminal (eventually) illness and it hit me like a ton of bricks. There is no cure, all I can do is to try and slow it down and ease the symptoms. I will eventually end up having to cart an oxygen tank around with me due to my lungs being too diseased to enable me to cope without help, but hopefully that won’t be for at least another 20 or 30 years. The worst part of this new diagnosis is that I did this to myself. I never expected to get away with a relatively heavy 20+ year smoking habit, but I always expected it to be cancer that got me first. I’m to blame for this chronic illness, no-one else. You could argue that air pollution doesn’t help, and I live on a main road, have done for most of my life. But no, smoking did this. I did this.
And that is when I broke down. My world came to halt and I had to take a moment to process the news. I’ve been through a lot in my 37 years, but this? This stung. After a few days of stunned acceptance, I realised that my emotions were almost identical to those that we would usually associate with the loss of a loved one. I was grieving. Grieving for the loss of my relatively healthy (for a Spoonie) body. I knew the day would come when I would have to admit out loud that I can no longer do all the things that I used to, I just hadn’t figured on that time being before I turn 40 years old. No wonder I felt like shit.
So what next? Well, I needed to go through the grieving process, and I still am to an extent. I allowed myself to completely break down, to scream and cry and hate the world. I needed to let it all out, to feel and process the news. Then there was the staring at the wall all day stage which was when my depression really kicked in. I lay in bed and mourned my life. How was I going to cope? How was I going to manage this along with everything else? I felt the walls closing in and I was suffocating, quite literally thanks to my shitty diseased lungs. I was already barely coping with having to get up and go to work every day knowing that I had a veritable army of chronic illnesses already, how was I possibly going to cope with this new condition? And you know what? I didn’t cope for a little while. I just couldn’t, it was all too much. I cried myself to sleep for a couple of weeks, went through the motions of my usual daily life as my brain tried to wrestle with the news. I fucked up at work, I hid from the world and I just wanted to curl up and die. It was bad.
Thankfully, I have an amazing doctor and when I crawled out from under my rock for long enough to make an appointment, she was nothing short of a miracle. Knowledge is power when it comes to managing chronic illness and that’s exactly what she gave me – knowledge. When I left her office, I felt empowered and spoiling for a fight with my new illness. I was armed with an arsenal of new drugs, phone numbers and websites for support groups, research and charities who could help me to makes sense of it all, it was fantastic. I know that I am in the earliest stages of COPD so I can manage it with little medical intervention other that my daily medication. The best way to slow down the deterioration is to eat better and do as much cardiovascular exercise as I can stand. I joined the gym, switched to a 75% raw and organic diet and have set a goal for myself: in 2018 I am going to climb Ben Nevis. It may well take me 3 times as long as most people but goddamnit I’m going to get this broken meat suit to the summit.
The biggest part of my mourning process was to learn acceptance. I had to learn to accept that I can no longer do all of things that I used to, or I can, I just take a lot longer than before. I have to analyse the task and factor in more time and work out how many sections I can break it down into. It’s incredibly frustrating, but all necessary if I want to complete anything, I now look at my body as either that of a toddler or that of a 90-year-old, both of whom get tired quickly, need frequent breaks and encouragement and who often need naps in the afternoon to recharge.
It’s all about management and acceptance when it comes to chronic illness. At the moment, for me, the management part is the easiest, it’s the acceptance part that I’m currently still struggling a little with. But I’ll get there, I know I will. Until then, i shall continue with my life with a stubbornness and sheer force of will that has got me this far in life. I mean, what’s another 40-ish years, right?