You Behind the Illness – Who Am I Underneath the Fibromyalgia?

You Behind the Illness - Who is Fibro Jedi behind all that pain?In a break from my normal gaming or Fibromyalgia blogging, I’ve been meaning to write this one for ages. I came across it my accident – or someone tagged me into “one of those tweets” – and I’ve since forgotten! But I loved the principle of what was called You Behind the Illness. While I am a fairly open book on Social Media, I don’t splurge my entire history for the world to see. Usually. Whether I’m known as Fibro Jedi, FJ or by any of my character names in LOTRO or SWTOR, here’s the person behind all those created identities.

I am keeping some things to myself at this point. However I hope that through this You Behind the Illness post, you can get to know me just a little bit better.

Four Places I’ve Lived

  • Lincolnshire, UK: I was raised in this County so Lincoln was my nearest town. Though not born in Lincolnshire – you can thank the county of Yorkshire for that. I was adopted at age 4 and brought up by my amazing parents. My sister was also adopted but from a different family to mine.
  • Leeds, UK: The city where I went to University to study French and Business Management. I came out with a 2:1 which is the second best grade you can get.
  • Bruxelles, Belgique: I spent a year here during my degree, working with a non-governmental organisation, CARE. I practiced French but also used my (pretty much now, dead) German too. If I immerse myself, I realise I still have a good grasp of French still.
  • Highlands of Scotland: moved here from down South of the UK for church reasons. We have had three different homes in the Highlands, but this part of the UK is now home. My in-laws also live up here, though my parents and sister’s family still live in England. Being in Scotland means all my pain meds are free (currently) so I have a lot to be thankful for on that score.

Four Places I’ve Worked

Well, without this being a mini-CV and giving away actual employers’ names, instead I’ll give you insight into the kinds of roles I have had.

  • Retail: a part time role while finishing School…I think. Selling stationery, printer inks and stuff like that. It was also my first experience case of staff hating management that got me thinking of owning a business at some point, so I could change that culture.
  • Accountancy & Audit: Spent quite a long time doing this stuff. I still hold my qualification and fancy letters after my name, but would need retraining if I ever tried to do it as a job again. Eventually the stress made my pain worse so I tried a new step, doing something completely different. Despite it being stressful, it taught me the importance of record keeping, which influenced how I started a business later.
  • My Own Business: designing and building websites and web-based software. Nothing to show for it now, finanancially. Best outcome of that is that one former employee now has their own business and the others found their ways into other roles, most within the industry. It was gutting to have to give it up, but I am at peace with that now.
  • Blogger and Erratic Streamer: I try not to see this as work, but I have a pride issue with not providing for my family. So now via a small amount of advertising income, a little from Twitch subs, and a huge chunk from Patreon, I’m not providing for my family as such, but I am getting there, little by little. I don’t mind my wife being the ‘bread winner’, but I want to contribute.

Four Favourite Hobbies

To some degree my “Work” encompasses what are my hobbies. Years ago I used to play clarinet, and until the last few years I used to play keyboard in church. So whether I have ‘hobbies’ now, you can be the judge!

  • Gaming (obviously): I have to make sure that I get gaming time where I am not trying to produce something (like a video or a blog post). I’ve also tried to take fewer screenshots recently so I spend more time enjoying the games I play, rather than tweeting about them. In case you only follow me (or find this post) because of Chronic Illness stuff, the games I play are The Lord of the Rings Online and Star Wars: The Old Republic. I occasionally play a little of the trial of Final Fantasy XIV.
  • Reading: (see Things I Like to Read). I probably don’t do enough of this, but I try for at least ½hr before bed. It is good to get some no screen time before trying to sleep. That fact is true for all humans by the way.
  • Writing FanFiction I am really enjoying writing my SWTOR and LOTRO FanFiction. I find it more relaxing than other content and it exercises the creative side of my brain, whereas most other posts don’t as much.
  • Watching the F1: The only sport, and almost the only TV I watch, I share with my wife – watching the Formula 1. Due to our daughter needing our focus and attention we rarely watch them live, but we watch them after the event. We have try to avoid the sporting news in between the live race and when we manage to sit down to enjoy it! We don’t support a team, we just enjoy each race for what it is.

Four Things I Like to Watch

I don’t really watch TV to be honest so….

  • Formula 1: as mentioned above, so I won’t repeat myself!
  • Gaming LiveStreams: but I don’t do this often because watching a stream and gaming doesn’t work well, due a poor concentration and attention span.
  • Comedy DVDs: Black Books, Big Bang Theory, Stand Up shows. Probably our favourite comedian is Bill Bailey – who manages to combine current affairs, a bit of insanity and music into his humour.
  • Kids TV: I have had to watch a fair amount of this recently. We make sure NJ does lots of different things, so TV is just a part of it. To be honest, some Kids TV is mindless and pointless – so we try to avoid those. However “Mr Tumble” teaches sign language, “Paw Patrol” teaches teamwork and “Peppa Pig” usually has a life lesson in each episode.

Four Things I Like To Read

  • The Bible: I am a Christian so I try to read a bit of Bible each day. No I’m not “one of those Christians” that’ll try to shove it down your throat. I also made my own mind up about believing, as a kid, but later as an early teen. I don’t talk faith on Twitter, simply because it can create barriers when they don’t need to exist.
  • Tolkien‘s Lord of the Rings related books: For enjoyment but also to learn lore and character histories. This is relatively new as I had historically found Tolkien really hard to read. But after reading all the main LOTR volumes and appendices, I’ll be repeating the endeavour. It also helps to inform me when writing fiction in that context.
  • Star Wars Expanded Universe (EU) novels: I’m still early in my journey here, but I’m still sad Disney categorised them as “Legend” rather than canon. But those novels help you to understand the real feelings behind the officers and soldiers of the Empire when their leaders were killed. I mourn we will never see Talon Karrde, Mara Jade or Thrawn in movies.
  • Tom Clancy: Jack Ryan novels. Detailed, complex political and military drama. He has a kind of pattern in how he writes these stories – they start of slow, with small signs here or there about what may occur. Then about ¾ of the way in the pace picks up using shorter sentences, chapters and sections. He manages with the written word that which movie directors do with major dramatic productions.

Four Places I’ve Been

  • Switzerland: my parents saved up for years to allow us to holiday in Switzerland occasionally. Been a few times, absolutely love the stunning scenery (I have a soft spot for mountains) and getting away from everything else going on in life. Sadly it is inordinately expensive to visit, so if I manage to go back it won’t be for a good number of years.
  • Cape Town: South Africa. As part of a temporary touring band in my teens. Would love to go back. We were supposed to tour more of the Southern coast of South Africa, but there were some troubles at the time we were in the country, so our tour schedule had to change.
  • Trinidad and Tobago: as part of a different touring band. Saw the best of the weather and the worst there too, so was a challenging tour to say the least. Developed a hatred of “rain flies” but still enjoyed the music, most of the time!
  • Malawi: my wife and I went with a couple from church to visit various churches and communities in Malawi. And began to understand the massive challenges facing the poorest of the poor there. Also the place where my pain levels have been the lowest, due to relaxed timetables, no job pressures and the dry heat of much of that region. I also had to put aside my pride and learn to eat rice dishes with my hands, and accept food from people who gave gladly – even though they would go without that day, because to refuse it (so they could eat it instead) would have been a massive insult.

Four Things I Love To Eat

Ha ha ha, my favourite foods are rarely healthy! I’m not sure how I’ve not become the size of a blimp to be honest!

  • Chinese Takeaways: yes with the gluten and high salt levels! Absolutely love it. I prefer going out to Chinese/Cantonese restaurants, but we’ve not had money for years to do that. I used to be able to use chopsticks before my hand pain became too bad.
  • Italian Food: pasta dishes. Some Italian pizza toppings are nice, but I’m not a massive fan of really thin bases. But Italian is my wife and I’s first choice if we get enough vouchers to go out for a meal on our own.
  • Anything that combines chocolate and nuts. Snickers, nutty ice-creams – or just some chocolate and some nuts. That’s good too.
  • Almost Any Cheese: excluding blue cheeses (unless eaten with honey). A specialist cheese shop taught us the honey-and-blue-cheese trick and it really softens the flavour. Anyway, I love most French cheeses and goat’s cheese, smoked cheese. Did I mention cheese?

Four Things I Love to Drink

This list assumes our finances are fine, or that someone has gifted us some stuff. But when money wasn’t a concern this is the full list!

  • Coffee: the real stuff – preferably ground from beans at home, if we can. Otherwise filter/ground coffee is good too. I’ll drink instant if I have no other options. I shouldn’t have caffeine after about 2pm really any more. (See: Coffee & Fibromyalgia).
  • Mocha:: you can’t lose out when you combine coffee and chocolate. Just saying. Oh and there’s no shame in asking a coffee shop for an extra shot of espresso, even if it already contains two of them!
  • Red Wines: both my wife and I prefer red to white wines. Rioja is a treat wine, but anything that’s over £5 and a decent brand will usually be appreciated too.
  • Dark Ales: which I have to limit due to keeping gluten levels down. Porters are my favourite balance, especially those that combine other flavours, like coffee for example! I also enjoy stouts. The only lighter ales I will drink gladly are in the Leffe family (you can thank my year in Bruxelles for that).

Four Places I Want to Visit

  • New Zealand: for the mountains. Yes, it’s Hobbit Country, but I wanted to visit New Zealand before I got into The Lord of the Rings.
  • Italy: to experience the culture and the cuisine. And for warm weather, of course. If I had extra capacity I would love to learn Italian.
  • USA: to be able to meet friends made through Twitter. And to sample certain states that allow shops containing specialist “herbal remedies” that could help with my pain.
  • Greece: for the culture and rich history. And again for a warmer climate. I want to visit real Greece, not holiday island ghettos. I used to have a friend who came from Greece. “Used to” is probably wrong – if my wife and I visited my friend and her hubby it would still be a great time.

TL; You Behind the Illness – Well, Me Behind My Illness

It can be easy for me to forget who I am aside from being a house cleaner and being in pain. But behind the pain, I try to express who I am – I have likes and dislikes, preferences, good things I have done – and things I would like to do. I hope this You Behind the Illness post has been interesting to you also. And, although I may not want to answer everything people could ask, feel free to ask me stuff on Twitter or even in the comments here. I may feel like a bag of pain, but there’s a human being underneath it all!


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