My State of Fibromyalgia, Gaming, the Universe and Everything

Fibromyalgia and Gaming update from FibroJediTo anyone who follows me on Twitter will know that a lot has been going on in my life, especially since the birth of our daughter last year. Things haven’t been easy on many levels – the doctor is still signing me off work, our family finances have been shakey because of this and my pain hasn’t been controlled very well, especially in the last month or two.

So, I wanted to give you all a brief update on the various things that make up my life and how this is impacting what I do online.

I ask you bear with me and please read this – you may understand me better as a result. Here we go.


Just read the bits you want to:


Fibromyalgia

It has been a long time since I wrote any Fibromyalgia blog posts. This is because I have a principle of not writing something unless I add value to the site and the Internet at large. It’s also been because I don’t have much constructive to say. After a wait of around 6 months I finally got into the Pain Management Clinic in February. However it appears that demand for their services is so high that I won’t be seen until late this month or sometime in June. The “advice” they gave me, along with the experimental medication, only served to make my symptoms worse. I ended up agreeing with my doctor to revert back to my pre-consultation meds until I can speak to them again. However, the trend is still downwards, so each week my shoulders, collarbones and neck hurt more and more each week. Or so it feels.

I want to thank you, and especially those who reach out on Twitter with hugs, encouragement and sympathy. It really does matter and it’s really appreciated. Doing anything hurts, doing nothing hurts. Sleeping too much makes it worse and so does sleeping too little – but I don’t know where the boundary between those two is. It’s just massively challenging.

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Finances

I want to say a huge thank you to my supporters on Patreon who are helping me cover the costs of my SWTOR Subscription and the costs of running this wee blog. That really helps. My parents have been able to help us periodically as well, which certainly helped us to stay living where we do. But on the whole we are ‘on the state’ – which I really hate. But it is necessary right now. Our daughter needs a physically capable parent, who can do things with her, carry her and take her to things, so my wife needs to be that person. I do fathering more on an emotional level, interspersed with feeding sessions and the occasional half an hour of playing with her. Because of this my wife can only do a part time job, which she has. But it means we are nowhere near self-sufficient. No, I’m not asking you to financially support me, though if you’re willing that would be awesome. I’m merely informing you where I am at. I’m used to being the one who brings in half of our income and since October, that’s not been possible.

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This FibroJedi Website

It is humbling that what I always call my ‘wee blog’ attracts over 5,000 and sometimes over 6,000 visitors each month. I never thought that would happen. And I enjoy adding to and maintaining this site – thank you if you are included in that number. However there are a few changes coming I want you to be aware of before they happen:

  • New Design: I will be keeping the layout the same so that it stays familiar, but I will be redesigning the interface. When I started Fibro Jedi I was only thinking of writing about SWTOR, Fibromyalgia and doing the occasional Star Wars Fanfiction. I was also more Jedi-ish in my thinking. That was 18 months ago. With the surprise success of my LOTRO blog posts I will be creating a new theme which acknowledges my LOTRO content. It will also be less….yellow.
  • Functionality Updates: There are a few aspects of the base theme I used to create this site that I will be manually upgrading. These include improvements to the mini-galleries I often use – as these do not display well on mobile devices. I will do my best to test everything before saying it’s complete.
  • “Branding”: I can’t draw digitally, it’s not my skill! But as some external sites where I have profiles, often want a ‘logo’ I have used some free or open source images to create a logo. No I’m not going corporate on you, but I just wanted to be a little more slick in how I present my work. Oh and despite my LOTRO content I will be retaining ‘Fibro Jedi’ as my ‘name’.
  • New Home Page: I will be re-writing my home page content. I launched this site in October 2015 and life looks different now. My ‘main’ pages have not been as ‘evergreen’ as my blog posts, so I wil try to remedy that.

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SWTOR

This is where it gets tricky. I love SWTOR – and I truly mean that. I love the characters I create, I enjoy the video cutscenes and I obsessively screenshot the worlds I visit! The SWTOR Community, on both The Red Eclipse and Shadowlands servers have been amazingly supportive. Whether it’s through friendship, through tweets or even through gear and decorations gifted – I have been truly blessed.

Mission Difficulty/Complexity

The main difficulty I have is that the newer content – especially around KotET and War for Iokath (content coming soon), is that the combat difficulty, and complexity is getting really hard to handle. My pain levels did not cope very well with KotET, especially with the main boss fights. With Fibromyalgia I have slower reactions and I struggle to multi-task due to Fibro Fog. Even in the new, shorter, War for Iokath quests, there were tricky mechanics and really tough mobs.

Can’t Make Content Easier Through Gearing

Add on top of that, without grinding CXP I have no way of getting gear that is >230 Rating. Unassembled Components are not available for Solo players as they drop in Operations or PvP. That means I really cannot gear myself better to handle this harder content.

So that leaves me in a strange position: I want to keep playng SWTOR (and I will) but I can only occasionally enjoy ‘new’ content. With our daughter in the picture, I couldn’t group up very often at all, even if I wanted to. I am often asked without warning to drop what I’m doing – that’s part of being a parent. But I am going to have to think through how I play and how often I play.

This section doesn’t have a conclusion, I realise, but I kinda hope someone at BioWare notices this: you are not making the content accessible to people who want to, or need to, Solo – or even need easy content. “Story Mode” KotET Chapters were not “easy” – and I would rather have an “easy mode” with very few rewards or fewer credits, to enable me to enjoy the story. I still have to think this lot through.

Whether I need to re-attempt playing fewer characters, or just keep replaying the class stories, Ilum, Makeb and Shadow of Revan I’m not sure.

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LOTRO

It was the realisation I needed an easier game to play occasionally that earlier this year I picked up LOTRO again. I had tried it before but couldn’t settle to it. So maybe that wasn’t the right time. This time, however was. It has its challenging areas, as all games should, but I have really enjoyed its immersive world and regions. And as with SWTOR, I have found the community to be welcoming and generous. The system allows for overlevelling, enabling me to make my own “easy mode” and you can take quests at your own pace – even varying the order of regions you tackle, if you want to.

LOTRO Family

I have also been humbled by the success of @lotrofamily, which has enabled me to support the community which I pay almost nothing into. I can only afford to subscribe to one game. Managing this account does take time, but I feel I am adding value. I was open at the start to say that #lotrofamily was inspired by #swtorfamily, so SWTOR players have contributed to its success! This does take some time, but I am enjoying it.

LOTRO Posts Here

In recent weeks, my LOTRO blog posts have managed to break into the top 10 most popular posts here on Fibro Jedi. This has surprised me – in a good way. I thought coming in late, with a site mostly about Fibromyalgia and Star Wars, that I would struggle to gain traction. But that hasn’t been the case. So I am now factoring in blogging time and am planning videos (see below) for this game as well. These will continue to grow as I have capacity for writing. But I am also going to have to consider a route of trying to support my family financially while blogging, video creating etc with LOTRO. I’m not sure how to go about that at this stage, but my actual family has to come first.

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YouTube

I haven’t been adding videos as often as I would like – this has been a combination of needing gaming to cope with increased pain, and the lack of silence in the house to enable me to do video commentary. Without quiet time, I can’t do LOTRO Videos really as they need commentary, and any SWTOR ‘guides’ I wanted to do have the same problem. In the next month or two I will be getting an office here at home. This should help me to dual screen but also to shut the door to be able to record. Maybe then I’ll be able to contribute more to both gaming communities – and to my family’s cost of living.

Until then, I’ll post in-game videos when I can, but only after I’ve relaxed, had family time and done writing.

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TL;DR Life is Complicated

Okay, that wasn’t so brief. But life is really complicated at the moment. My health is making even gaming harder. I will have to rest my hands after writing this because my hands hurt. If you’ve made it this far then I thank you. There are ways you can support and encourage me (in no particular order):

I have a lot to think through in how I prioritise everything and how I balance all of this. Thank you for being a part of this picture – despite not working I am super-busy. I may just need patience and guidance in how best to serve my family, and my health, as I think this through.


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2 thoughts on “My State of Fibromyalgia, Gaming, the Universe and Everything

  1. Health, family, whatever you need to do Fibro, do. I’m just here for the ride and will follow where you go.

    You are a really creative, funny, fantastic fellow and I’m still praying even if your mountains aren’t moving. It’s been a rough year here too. Lost my job, was unemployed for awhile, switched careers got a job (yay), and have been in the support role for Mom as she and Dad tackle fighting her stomach cancer (she’s doing marvelous currently and we are so grateful and thankful for that the rest of the problems seem like fly-bites in comparison). The reason I’m sharing all of this is just to let you know that YOUR encouragement and sense of humor have brought relief to me. The pretty screen shots from SWTOR and LOTRO have been a treat to come home to and enjoy. You are making a difference in your little corner of the web. When doubt sneers, when despair bites, remember that. And remember that you’ve a pal across the ocean making the LORDS ears ring with your name. 😉

    1. Hi Michelle – thank you so much for your warm, lovely comment. That means so much to be, especially during this time.

      I’m sorry to hear things are really hard for you. My Mum (or Mom to you) has Alzheimer’s but they live 500 miles away so we’re not actively caring for them. So I understand tough illnesses. I lost one of my Grandfathers to liver cancer (and he never touched alcohol) – you also need to stay strong.

      But, as I intimated in a direct message to you – if I can bring even a small measure of relief or encouragement, then something I am doing is right.

      Be blessed.

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