CFS update Jan 2019

It’s a while since I’ve put anything down about living and working with chronic fatigue so I thought a New Year’s post about it would cheer everyone up no end.

I’ve still got it. It’s still a a pain in the arse but the last year hasn’t been all doom and gloom.

Gone wells

Not taking time off for CFS for the whole year was something of an unexpected achievement. There were a couple of points during the year where I was seriously worrying about my performance and when I was going to get time to recuperate. I didn’t manage it in the best possible way but coming out the other end of 2018 without having flattened myself is a win.

The year certainly hasn’t been a grind. I got a chance to do some really cool things which, although tiring, I feel pretty pumped about achieving. Playing in the house band at the UK Methodist conference, presenting at the digital storytelling conference in Greece and a week working at the University of Western Australia are particular highlights.

This wasn’t supposed to go in upside down but since it’s of me and John in Western Australia, this is how it shall stay.

I’ve managed to make space for me time. There’s a few things that I’ve had to drop for lack of energy like running, swimming and cycling. I miss them and am working slowly on re-engaging but it’s a bit of a slog. The main experience of CFS is a narrowing of possibilities with the limited amounts of energy available. What I really didn’t want to happen was to lose all the things I enjoy doing purely to focus on work. I’m pleased to say that family time hasn’t been affected as much as it could have been and I’m doing much more in the way of music.

Me and my “rig” at “Methcon18”

It might sound a little grandiose but maintaining a sense of self has probably helped me to keep work and the rest of my life in balance.

Not gone so well

I’m seeing a physio regulary as part of Newcastle’s fatigue clinic and she’s been great. Being able to talk through the experience is useful – I feel awkward talking to people about CFS, normally. One of the major hurdles she’s trying to help me through is coming to a proper acknowledgement of what CFS means for the future. It’s likely this will go on for a long time and I may never regain what I had before its onset in 2017. I hate that idea but without properly understanding it, it means that I’m not taking my treatment plan seriously. It just becomes a series of boom and busts as I try to force myself to be well again.

I don’t like going on about symptoms but I’ve noticed that some things are getting worse. I lose concentration very easily now, often mid way through conversations or complex tasks so things take forever to complete. Remembering stuff is also a challenge when I’m at my most tired. I worry if people are getting frustrated with me or are just puzzled that I don’t seem all there. Nobody’s telling me that but the anxiety is there.

I feel like a slob. I’m definitely putting on weight. This will sound narcissistic but my skinny frame that was the bane of my adolescent years actually turned out to be something I felt better about in my 30s and was looking forward to maintaining in some sort of shape into my 50s. I’m not weighing myself but I can definitely tell I’m getting a paunch. When I bend over, bits of my abdomen now meet other bits of my abdomen coming in the other direction. That’s new for me.

Looking forward

So much for last year, then. I’m not going to make any resolutions but I think it’s important to have things to look forward to.

I’ve been invited back to play at the 2019 Methodist conference. This is nice because it means that I mostly didn’t suck last year. Actually, my bass playing improved a great deal thanks to it. It’ll be tough managing the rehearsals and the conference weekend but I’m looking forward to it.

We have a 2 week family holiday lined up in Wales for the summer. There will be splashing around in boats, probably surfing and walks along the Pembrokeshire coast. And plenty of time with my feet up.

I used to do a lot of music tech stuff when I was younger but lost interest and time when our kids arrived on the scene. I’ve used some Christmas money to buy myself a minimal little setup for the office. The only target I’m setting is to tinker.

One of my new toys…

Eat more fruit and less meat

Walk briskly at least once a day

Try out yoga or pilates

Telling the story of ME recovery

I’m trying something new here. I recently found out, having been feeling ill for the best part of a year, that I have ME. It’s not something I’ve come to terms with yet and I’m looking for ways to take back a bit of the control of my life and body that I feel I’ve lost.

This week I tried out doing a video diary. That’s nothing new. YouTube is full off people talking about their illnesses so I’m adding to already crowded field. The point is not that I think I’ve got anything useful or new to say or that I’m uniquely ill; I’m doing this mostly for me. In workshops I often refer to a quote about storytellers ruling the world which can be interpreted a gazillion different ways. In this case I’m trying to assert a sense of agency over my symptoms rather than feeling I’m at the mercy of them. The world I’m trying to rule over is me.

There’s an ulterior motive as I talk about in the first video, about making people I know and work with aware that I’m not at my best. That takes a bit of the pressure off me and lessens the feelings of guilt that I might be letting people down from time to time. It’s easier to do it like this than go round explaining to people individually – something which would feel like a demand for sympathy which is not what I’m trying to do. I’m happy to talk about it face to face with people if they want to but I won’t be shoving it down anyone’s throats.

Unlike some of the other storytelling stuff I do, I’m not bothered too much about technical or content quality. I’m trying stuff out. It’s unscripted, unpolished and for the moment, unedited. Much of what I plan to say gets forgotten. I’ve never been great at speaking off the cuff so maybe this is good practice for me.

I’m not fussed how many people follow this. I don’t know how long I’ll keep it up – there are a few things I think it’ll be interesting to talk about but whether the ongoing treatment stuff is just too tedious, I suppose I’ll find out.

But I think there will be benefits for me by being open, and who knows? Maybe it’ll be useful for people who are going through something similar.


“More UKIP seats” is not a good enough argument against electoral reform

So, that was the election. Aside from the disbelief/rejoicing (delete as appropriate) there have been calls to look very closely at our creaking electoral system and replace it with something more representative.

Why bother?

It’s probably summed up best in this tweet:

I’ll declare an interest. I’m a Green Party member so I have a reason to be unhappy. The fact that a nationwide surge in voting resulted in exactly the same number of Green MPs as 2010 doesn’t make sense. The same is true of UKIP. The Lib Dems have also faired badly according to this so it’s not really a partisan issue. Both Natalie Bennett and Nigel Farage have called for electoral reform in the last few days which is likely to lead to a very odd-looking single-issue alliance.

The Independent attempted to demonstrate how the House would have been divided up under PR (which system isn’t clear) and you can see that UKIP would likely come out as the 3rd largest party by some distance.

For many people, that’s a reason to feel anxious.


Are more UKIP seats an argument against PR?

Well, no. It isn’t.

The first thing to point out is that this is not a reliable way to determine what the results would have looked like under PR. These were votes cast under a different system, where people’s voting intentions are inevitably going to be shaped by the first past the post rules. Under a different system, with different expectations of the vote value, a large number of people would have voted differently. I can’t prove that, but it’s enough of a reason to be cautious about the speculation.

But that’s not the point

Just because some of us might not feel comfortable with the idea of a party like UKIP getting more seats, that is not a good enough argument for an unrepresentative system.

I disagree with UKIP on just about every issue on which they stand but it’s important that the outcomes of an election are just and seen to be fair.

If anything, it’s a reason to demand much fairer representation. Farage has made much of the fact that he is not, as he claims, an establishment figure. His success is partly down to the fact that a certain portion of society feels alienated from politics. Along comes someone saying that they will give the Westminster Elite a bloody nose and it’s no wonder people vote for him.

But if the system was fairer in the first place, if more people felt their vote counted, then some of the millions that stayed away from the ballot box this time round might see more reason to vote.

Consider that 66.1% of registered votes turned out this year, meaning 33.9% didn’t, a little less then the entire Conservative share of the vote (36.9%).

Tactical voting makes less sense under PR and if you encourage more of the non-voters to turn out with higher expectations of their voice being represented, the political landscape could look very different.

Ensuring a fair democratic system is much more important than concerns about whether this or that party will end up with more seats.

Let’s see the quality of these MPs; UKIP, Green, Plaid Cymru, NHA and the rest. It benefits all of us if their ideas are open to greater scrutiny and debate.

Is reform likely?

I doubt the current government would consider changing the system. Why would they? Labour have less to gain from it than the smaller parties and the Lib Dems tried and failed to get a compromise AV-based system through a referendum in the last parliament and are probably still licking their wounds.

If anything, though, It’s now more obvious than ever that reform is needed. It’s down to those of us who want it to argue for it and persuade others. I started with adding my name to the Electoral Reform Society’s Make Seats Match Votes petition. My next step is to write to Cath McKinnell MP (Lab), my current MP. Small gestures, but at least it’s a start.

It might be naive of me to hold out hope for change, but I’d rather be naive than despondent.



Strava: North and South of the River

This was a tough one. I wanted to go a bit further for this one, somewhere I hadn’t been before.

I’ve been working my way through a series of excellent rides created by Ted Liddle, a friend of my in-laws, in a book called Cycle Tours: Northumberland and around Newcastle (ISBN 0-540-08204-x). This one was listed as moderate/strenuous. I’d done most of the northern half, albeit in the other direction, but I haven’t really been South of the Tyne before.

I managed the Northern half OK but coming up from Wylam where the profile gets much more harsh I really felt it and almost considered calling it a day round Prudhoe. Instead I just settled into a low gear and plodded.

So, it was a bit uncomfortable in the latter stages but there are some excellent views up and down the river and the downhills were thrilling.

Next time I might start at Wylam and do the hard bit first.

Strava – Stannington – Whalton – Kirkley

It’s been a few weeks since I went out last. I’ll need to step up the regularity of rides if I’m going to get fit enough for a 100 miler this year. This ride was an OK pace but the thought of doing the equivalent of 3 times this fills me with dread.

The bike is getting a bit more comfortable to ride now but I think I still need to get a proper fitting, probably from this guy. My shoulders are still getting tense, my arms need to relax more and I’m starting to get pain on the inside of my right foot.

Or maybe that’s just me getting old!

No matter.

#ForestMayhem – what happened next!

Well, there are a LOT of people I need to thank!

If you want the full back story then you can find it here but the summary is this: to make up for the fact that I failed to upload the 500 word story, Forest Mayhem,  that my 10 year old daughter spent hours lovingly creating, I posted it on my blog. I also put out a plea on social media for people to read it, pass it on and maybe comment on what they liked about her writing.

The results were fantastic, thanks to the generosity of people in my immediate network and beyond. She’s absolutely thrilled that so many people so has never heard of cared enough to read and share her story. She spent ages carefully reading the comments some of you left her.

The numbers

I’m not fully up to speed with Google Analytics but, taken with a pinch of salt, these are some of the important numbers about how many people viewed the page. It was posted about 10pm on the 26th Feb.

Screengrab of the metrics for the blog page
Screengrab of the metrics for the blog page

188 pageviews makes this the most viewed page on my blog. My daughter is understandably delighted and I now have a target to beat.

The average time on page of 6 mins 37 seconds is also really good!

Drilling down she can also see that Google has recorded the cities that people viewing the pages were sitting in. They include many close to home but also as far away as Melbourne, Hanoi, Bordeaux and Hemel Hempstead.

The comments

The numbers were great but it’s the comments that people have left for her that are particularly special. You can see them all here.

She spent a long time reading them and we had some great conversations about the structure of stories, classical myths and ways of grabbing and holding a reader’s attention.

Part of my job involves talking to people about their own storytelling so I was particularly interested to hear what it was that people responded to most. For a masterclass in classical storytelling read Dave Kernohan’s response.

My daughter added her own comment to the blog by way of thanks.

Thank you for the nice comments and soon I will write another.
I really enjoyed reading all your comments . At first it felt a bit weird to know my story was on the internet but now its okay. I learned that even though it was good I can still make it better.

What we learned

  • People are kind.
  • The knowledge that people have read and appreciated her story is a powerful motivator for my daughter. She’s already planning sequels!
  • Both my kids now want their own blogs! Easy-peasy as I’m running a WordPress multisite so new websites are just a few clicks away.
  • I should have thought about making it easy for people to comment before posting. The first version of the post went out on Medium as I wanted it to have a separate life from my blog (geeky, niche, not well-read) but Medium requires contributors to have an account. So, onto this blog it went. Much easier for everyone.
  • Putting the story online, assuming that the story wouldn’t have won the 500 Words competition, meant that many more people read her story than would otherwise have done. She’s also had a lot of valuable, formative feedback.
  • This was a one-off! There were so many tweets and pageviews because people felt that my daughter shouldn’t lose out because of my mistake. If she does start her own blog to post her future writing then she’ll have to work hard to build her own audience. This is no bad thing.

Thank you everyone who took the time to RT, read, share or comment on the story.




Forest Mayhem – my daughter’s story

Today I let my daughter down

Today I did something really stupid. Please help me put it right.

My 10 year old daughter has written an entry for the BBC 500 Words competition. She spent ages on coming up with the idea, drafting and redrafting it until it was ready to send in.

It’s called “Forest Mayhem” and I think it’s really good.

After I’d typed it up for her and had her check the spellings I had one job; submit it.

I forgot.

How could I forget!?

We’re now 3 hours after the deadline and I feel dreadful. I’ve already confessed to her and she’s been her usual, utterly lovely self. She gave me a hug and said she’ll try again next year.

That’s what she’s like.

I can’t fix this properly but I hope I can make amends.

This is her story. Please read it and leave a comment telling her something you like about her story.

Forest Mayhem

Once when forest was above us and a wind blew gently through the trees, a group of animals raced through the forest with joy and laughter not knowing the danger lying in wait for them later that day.

Clarice the oldest, cleverest and prettiest of them all was a young deer wanting to explore the forest that she lived in. Her best mate was Olivia a fox who always looked up to her friend.

“Come on! Let’s go, shouted Clarice.

“Let’s explore while we can,” replied Olivia.

All the animals raced off into the thickness of the forest. Oliver, Olivia’s brother, gasped. “Can we rest for a minute?”

“No!” the girls shouted at him.

On they went dashing in and out of trees and weeds, until they reached the river. They weren’t allowed to cross it on their own. You see they had been forbidden to cross by the adults. Even though the other side looked so new and exciting they couldn’t. Olivia nudged her brother and whispered, “Go on cross it!”

“But…” began Oliver.

“Go on, chicken,” she said.

Slowly but steadily he edged towards the bank. Olivia crept up behind him and pushed. In he went into the water.

Suddenly, he slipped and he w3as swept away. “Help!” he cried and that was the last they saw of him. But he must be alive Olivia could feel it. “He couldn’t be that far could he?” That was the thought rushing Olivia’s head that moment. They started to walk along the bank searching for Oliver but nothing could be found not even a scent. They searched for hours on end but still no sign.

Then they heard a sound, a soft whimpering sound. Olivia looked around and there on the other side of the river, huddled against a tree was Oliver.

“Oliver!” shouted the exited Olivia. He looked up and smiled weakly at the girls.

“How are we going to get across?” asked Olivia. “There’s no way!” Then in the corner of her eye she saw a fallen tree a bit further down the river. “That log should be strong enough for both of us if we go one at a time,” said Clarice.

“Okay. Can you go first?” Olivia asked nervously.

“Fine!” said Clarice.

The log was unsturdy and it wobbled as the brave deer walked across the uneven trunk. As she got to the other side Olivia gasped with relief. Then she put one foot on the log then scampered across to the other side. When the two girls saw Oliver closely they could see he was really cold.

“Oliver are you okay?” asked Olivia.

“Yes I-I am-m,” replied Oliver.

“Come to us. You need to get warm,” said Clarice.

When they reached the log Oliver froze with fright but Olivia managed to persuade him to cross. So with relief they all staggered home talking about their adventure and how they did not want to do it again.

The End

Strava – Berwick Hill to Ponteland (loop)

I hope to make this the year of my first 100+ miler. Starting small today. Mild, very little breeze, traffic courteous (apart from one guy with a load of bikes in the back of his people carrier, ironically! Maybe they were his scalps).

Also, I have yet to work out the etiquette of when it’s OK to draft a stranger. I passed another rider going past the airport on the home leg only to be freaked out going past the rugby ground hundreds of yards later to realise he was hugging my back wheel which he continued to do all through Kingston Park. I know it’s a legitimate technique but I feel it’s a bit rude and intimidating to do it to someone you don’t know and not even acknowledge the help they’ve just had. I was just out for a Saturday ride, not part of a bloody peloton!

Why I’m saying no to the ice bucket challenge

First, well done to all those who have undertaken the ice bucket challenge. Genuinely. Especially the young people.

I want to explain my personal reasons why I’m not doing it, despite being nominated. I was originally nominated by a top bloke who I did the C2C bike ride with a few months ago and I was chuffed. hope he doesn’t think I’m having a go at him. He’ll get me to swim the channel next!

But despite the good-natured fun the whole thing makes me uneasy. Not the cold water thing, that’s fine. It’s more to do with what happens when you want to say no. It’s difficult to say no to this and any social trend that is difficult to opt out of you should at least question. If I decline I look like a killjoy or like I’m criticising my friends (and their kids) who have already done it. I really don’t want to offend people I care about but anything like that becomes self-perpetuating and begins to feel coercive, even though that was never the intention of the person doing the nominating.

But it’s for charity? Yes, giving to charity is A Good Thing but that doesn’t override my unease. It’s another reason people might feel guilty for saying no. Why not get to know a charity. Find out about its work and aims. Set up a direct debit and start a relationship with them. That’s sustainable. I don’t think ice buckets create a culture of giving.

And, where does it stop? If each person nominates 3 more that means this could go on way after people have forgotten the reason why it started. So, the chains have to break somewhere: one might as well break with me.

This has the makings of a trend. Not the ice bucket challenge, that’s just an example. Neknominate was another and that didn’t end well for a few people. Take out the social media and charity elements and it’s a good old fashioned chain letter as my colleague reminded me today. I can already feel marketing teams dreaming up ways to spark the next ice bucket challenge to build awareness of their brand.

Oh, look. It’s started already.

So, there will be more of these in the future. By saying no now I want make it easier to say no later. The point is it’s fine if you want to decline the challenge, whether you’ve got a strong reason or not.