I'm broken

As the months and years roll on, I have become increasingly aware of the results of almost a decade of fighting the fatigue of leukaemia and the impact of chronic pain.

The physical impact is pretty much obvious to everyone. Most of the time now, I use a walking stick because the fatigue wrought by both diseases leaves me physically exhausted.

Generally the pain is constant, with the level going up or down depending on how good or bad a day I'm having. It never dips below a 5 these days and is generally in the 7-9 range. Two to three days a week, it hits 10 - the worst kind of pain you can imagine, where every physical movement triggers the feeling of red hot pokers being stabbed into every part of my body and every muscle being pounded by industrial machinery.

Sometimes the surge in pain literally sucks the breath out of me, like being punched in the stomach with a wrecking ball.

But it's not just the physical impact that slowly breaks your spirit. It's the mental deconstruction too. One or other disease on their own would wreak a vivid and turbulent destruction on one's mental health. But both together, they deliver a maelstrom of frustration, depression and anger. I know I am becoming more forgetful and more absent-minded. I know that I have had several episodes of utter confusion, not knowing (or understanding) where I was or what I was doing there, and afterwards having no recollection of the event - simply that I had lost time with no awareness or understanding of what had happened. It destroys your self-confidence.

If one more person tells me to "be positive" or "have courage", I swear I'm gonna punch them on the nose. What do they think I'm doing? They have no idea about the depth of the fight I battle every single day just to get out of bed. It would be so easy to simply lie in bed and just give up - and I won't pretend that sometimes that option seems overwhelmingly more attractive than the other option.

Then comes the guilt when I see, or hear of, people who have been diagnosed after me but have already died - or are at the terminal stage. I feel guilty for feeling so miserable about my own situation, I feel selfish for feeling depressed about the pain and fatigue when others are dying, and I feel like a fraud, for still being here while others are not so fortunate.

I'm lucky to still be here - I know I am. I was advised that the average mortality rate for patients with my type of CLL was 5-7 years and here I am on the outskirts of reaching 10 years.

But I don't always look on it as being fortunate. It doesn't always feel lucky. There are times when it feels like a curse, not a charm. Almost 10 years of fighting has taken its toll, and I don't just mean visible signs such as only having winter plumage on my thatched roof.

I'm tired. I'm really really tired of facing down the demons of the night and the fears of each new day. I'm tired of doing my physical therapy and trying to do all the things my wonderful medical team(s) ask of me. Every now and then, I have my own little medical rebellion, just to remind me that I have the tiniest miniscule amount of power in a situation where I feel utterly powerless.

So yeah - I'm broken. But with the love and support of a wife, family, surrogate daughter and friends who bring me refreshing and nourishing love and support, I can take out the b, r, e and n from that phrase and say...for now...

I'm OK.