Wiped out.

It’s been a shitty month or so. I’ve been signed off for work again due to the fatigue and have generally found everything just really hard recently. I’ve had to force myself to get out of bed on some days and try and keep some level of activity. Mood has been pretty low with a lot of soul searching.

I’ve had a couple of sessions with an occupational therapist to help manage the fatigue and work with it. This involves, planning, pacing, resting, breaking things down into small chunks. I’m slowly getting to grips with some of what she showed me but its hard when all you ever want to do is curl up and sleep.

I’m also slowly starting to reduce my dosage of oxycodone from 30mg twice a day to 25mg. The hope is that I don’t have pain any more and reducing the dosage will help with the fatigue as it’s a known side effect.

Annoyingly I’ve not yet seen any benefits from this and have uncovered a small amount of chest aching since the reduction. Also, strangely some withdrawal symptoms I think, with regular headaches and feeling a little ‘displaced’ sometimes. Or discombobulated (great word!).

But I guess the good news is that I’m still here. Although I often ask if this state is worth it. But I then kick myself for being so negative. I had a bit of a wake up call at the weekend when I looked in the mirror and a scruffy old man looked back. I’d stopped taking care of myself and it shows.

I try and look on the positive side but its hard with no energy. I guess this post is more for my benefit than anything else. A kick up the arse if you like.

One of the things that has always lifted my mood is riding my motorbike. It’s a drug free anti-depressant. I last rode my motorbike, affectionately known as “The Beast” ten months ago!. Covid and illness have meant it’s just been languishing in the garage with me occasionally checking it still starts.

There was a time at the start of my illness when is was expecting the worst that I was considering selling it as I really thought I’d never be able to ride it again. This really upset me, maybe more than my diagnosis itself.

Over recent months I’ve been desperate to ride it but knew I didn’t have the concentration, strength or the energy needed. I’ve been slowly working on increasing stamina with walking.

But yesterday morning I woke, the sun was shining and it was a little chilly. I was desperate to go for a ride. But I had an internal dialogue that said I couldn’t be riding my motorbike if I’m not well enough to work. But I knew riding my bike would help lift my mood, my spirits. But what if I can’t manage it? What if I drop it? I was scared. For about half an hour I was teetering on throwing in the towel and giving up any idea of ever riding my bike again.

In the end I just went for it. Slowly I wheeled the beast out of the garage, it started on the first press of the button. The sound made me smile. Carefully I backed down the drive and rode off down the road, wobbling slightly, the bike feeling very alien, VERY heavy.

I was struggling to get round bends, my balance was off, I’d forgotten how to counter-steer, I missed gear changes and fumbled throttle control. I nearly turned round and went home but I carried on.

It felt like I was sitting on the back of an elephant on a tightrope for a while but slowly it started to come back to me, the balance, the control, the wind in my face, the sounds, the smells.

Once the initial nervousness disappeared I realised the weight of the bike disappeared once I was moving.

I was out for a couple of hours and loved it. The hardest part was getting it back onto its centre stand in the garage where strength and balance is needed. After, I ached everywhere, knees, back, hips, shoulders. But I needed that.

It wiped me out though, completely. The concentration needed to ride a bike is taxing at the best of times but yesterday within minutes of getting off the bike I was struggling to stay awake. I was also feeling guilty about riding when off sick from work. But I have to keep working on getting my strength back, my stamina, by any means necessary. They will all help me get the better of the fatigue.

Katie asked me a question last night. “why can’t you work?” a simple question. but it made me think why can’t I work if I can ride a bike? why can’t I work if I can go for a walk with the dogs in the sun?

But the answer is that I can’t concentrate, or focus. I can’t stay awake for very long, my mind wanders, I make mistakes. It’s taken me hours to write this blog post and remove all the typos and mistakes. My brain is mush at the moment. Work needs 8+ hours a day of commitment, skill, finesse at a keyboard. It needs clarity of mind, the ability to plan ahead, juggle multiple tasks, troubleshoot problems. Right now I can manage a short amount of an activity but that then wipes out the rest of the day. I’m no good to anyone right now.

I need to keep building the levels of activity, any activity, while reducing the recovery times. This seems to be taking forever but it is slowly improving.

In other news, treatment number 9 is next week and I also hope to find out the results of the latest CT scan I had taken a couple of weeks ago. I don’t want to build my hopes too much but the last scan in January showed massive reduction in tumour size. I can only hope that improvement has continued.