There are so many ways of looking at life, and the shitty things that happen to us, that sometimes it feels as though we’re living in a human washing machine. When we are kids, it was oh so simple. The clouds were made of candy floss, the moon made out of cheese, and that was alright because we were kids. No one tried to tell us that we were wrong, as that the truth sounds far more mundane, but is actually far more exciting. The only people who constantly burst our bubbles were our siblings, and they so loved doing it. Being an adult means that we understand the science behind clouds and that if there is cheese on the moon, well it was left there by the astronauts. No matter how much we understand, or we learn, life just get’s more and more complicated, more and more confusing every single day. The more I think about it, the more I look back on my life, I don’t think I actually grew up, until the day a doctor told me I was ill. Suddenly, I didn’t care about any of that, I didn’t care that my final bubble had been burst, all I care about was living.
I always thought that whenever you got news like that, that it would be death that you would find yourself thinking about, but all I could find was a desire to live whatever time I had left, just as I had to that point. I put on the biggest set of blinkers that I could find, and all I could do was carry on living as though nothing was wrong. Others admired me, they thought that I was incredibly strong, I know because some made a point of telling me so, but they didn’t see the truth. If I’m totally honest, I didn’t touch those blinkers, until the day my left arm stopped working. For five years, I got on with life as though nothing had changed. I took my meds, I went to work, I had chemo, I decorated our home, I bought furniture and ornaments, filling my home with all the things I thought a home needed. When the time came, I learned to use my wheelchair and sped everywhere at full speed, but still I hid from the truth. My weight dropped to the point that I was hospitalised to have a gastric nasal tube fitted, and still I was telling myself, there was nothing wrong with me. I had flares, I spent time in hospital, I took drugs, tons and tons of pills with names I couldn’t pronounce, but in my head, I was still fine, until that arm stopped working. How do you go through all of that, and not understand the reality of what is happening to you?
In fact, I don’t think I took it in fully even at that point. Being housebound didn’t stop me from working, it didn’t stop me from living as I had done, every day up until then. I got up early, I did my work, answered all those oh so annoying emails from people I knew already had the answers, but they just wanted to hear them, from me. Life continued, unchanged in content, just changed in location. I still had those blinkers, they didn’t fall off until a year after I lost my job, and then, for the first time in 9 years, I actually stopped. It took being turned down by hundreds of agencies and ignored by the HR department of any company I thought might need my skills, thousands of emails later, I accepted that no one wanted to employ me because I was ill. Me, the person who has lived through everything and refused to stop living, was ill and I for the first time, had to face that fact. Why did it take me so long? Because through all of it, I rarely felt ill. I was in pain, I was fatigued, occasionally, at times I even thought I was dying, but every time I got better, I was no longer ill.
It’s taken me several days to write this post, because of one thing, this post is a declaration. I’m no longer just too ill to work, I’m too ill to do almost anything, even the regime I have pushed myself over the last few years to maintain. I’ve pushed myself to the limit, day in day out, I have exhausted myself time and time again, but I have kept pushing. That combination of blinkers and determination have taken me through 15 years, of living with a condition that is doing it’s best to kill me, but it isn’t working any longer. In the last 4 years, I have slowly stepped down what I do every day, and every step down has hurt. This one really hurts. Right now, I don’t have the energy to keep doing all that I do, neither do I have the mental capacity to do it either. In the last two months, I have become iller and iller and I can’t escape that fact. I’ve slowly laid out the pieces over the last few weeks, but today I’m laying it out in black and white. I’m ill, I so ill, I’m stepping it down again. No, I’m not going to stop blogging, but I am going to stop blogging every second day. I’m not even going to say when or how often I am going to write, but be sure, I will still be writing, just not as much and not so often. I don’t have the strength left to fight in this way anymore, and I need my strength to fight in the ways that will get me through the next few years. I want the strength to see the candy floss for just that little longer.
Please read my blog from 2 years ago today – 13/10/2014 – It’s time for an adventure
It’s one of those odd weekends that we haven’t had for what seems a really long time. Once more the admin department at the hospital Adam works in is behind on the job of scanning doctors notes to add to patients files. I really don’t get this as the NHS has spent a fortune putting all patient records onto a computer, therefore the doctors no longer need paper files when they……