As I sit down to write this post, it is International Fibromyalgia Awareness Week – though the week will have likely passed by the time this is published. That’s because having a chronic illness is hard and affects everything – including planning, scheduling and writing blog posts! I wanted to use this opportunity to open up about some of my personal struggles with Fibromyalgia – but I suspect most of this can apply to various long-term (read lifelong) sickness. However, I would like to choose not to major on the negative but bring some light, hope and perspective into the massive challenges we have to face.
Chronic Illness – the Great Health Thief
I was diagnosed with Fibromyalgia around 10 years ago now, but back then it was just a real inconvenience. Pain was centralised around my neck and head – and was mostly contained with various medications. I was employed in an office job that had career prospects with stable income in an industry that would always be around. I later moved out of that job to start my own business (in a different sector!).
Fast-forward a decade or more and so many things have come and gone as a result of fighting chronic pain, the Great Health Thief.
No “Normal” Job
Towards the end of my last traditional job, stress and pressure were really making my pain worse, especially in my shoulders and neck. Once I went self-employed, it calmed down a great deal. Until however, we had employees, responsibility and – yes – stress. Things finally reached exploding point, with hand, shoulder, face and neck pain around the time our first child was born. Then my health just collapsed and I knew I couldn’t continue any more.
The Great Health Thief had stolen my ability to have a ‘normal’ job, and my ability to run a business.
I haven’t driven now in well over a year, probably longer than I remember. I either feel too fatigued to drive or in too much pain to drive.
For years I played clarinet – and I used to be pretty good. That’s not ego – I have certificates to prove that I can’t have been too bad! I also used to play keyboard at church. But one of the worst pains I deal with now is hand pain. Holding the clarinet crunches my fingers too much – and because I self-taught the keyboard, the hammer-action made me cry last time I tried.
Other Things – Briefly
I said I didn’t want to major on the negatives, but I also want to be real. So what else has the Great Health Thief taken?
Self-sufficiency: after a government assessment they decided I really did need to be supported by ‘the system’. There went my pride. That’s not necessarily a bad thing, though.
Comfortable income: we’ve never been ‘well off’ but as my wife can only work part time we just about cover our living costs. That’s uncomfortable.
Energy/Drive: and other ‘pumped up terms’ that employers, clients etc want you to have.
Reality Check – Imprisoning the Great Health Thief
There are likely other things I could identify as negatives, especially if I looked at each of my individual medications that make up my 25 or so I take each day!
All the things we think we have lost can tempt us into thinking we have lost everything as a result of our chronic illness. But the Great Health Thief is also a habitual liar. It cannot steal everything. So let’s lock the thief up and look at what it has not stolen from me – and in fact what opportunities it has opened up for me. Call it ‘counting your blessings’ if you like.
A New Definition of ‘Work’
Our daughter (NJ) is about 18 months old as I type this. Although I do ‘productive things’ like blogging, my ‘work’ now is laundry, cleaning and other house-based things. I serve my family. Although I can’t actually look after my daughter for more than an hour on my own (playing on the floor can really hurt) – I can serve them and do my best to make the home a comfortable place to be.
I Have Some Income
Supported by some awesome Patreon folk, a few fab Twitch subs – and the pittance Google dains to give me from my blog, I have some income. So I have not had my ability to earn completely stolen by chronic illness, regardless of how I feel.
I Have a Home, Heating and Food
The Great Health Thief has not stolen everything. We rent our home, but we’ve never missed a rent payment. We didn’t go cold in Winter. And although we can end up with not much in the fridge, we have never gone without food. So we have three blessings right there – being sheltered, warm and fed. And I likely get more time with NJ than many working parents.
When I started the @FibroJedi Twitter account it was so I could ‘shout into the Void’ about being in pain – so I didn’t affect my working situation. What I didn’t realise is how amazingly supportive the online community can be – and still is. People in similar situations bring encouragement and understanding that I can’t get from most people I know ‘offline’.
And being on Twitter means I feel part of at least 3 online communities – #ChronicLife, #lotrofamily (for The Lord of the Rings Online) and #swtorfamily (for Star Wars: The Old Republic). Each one has brought me new contacts, friends and supporters (most importantly in the emotional support sense). That’s an uncountable number of blessings right there!
Learning to Pace
It has taken a lot of “unlearning” of dealing with situations or people based on who’s shouting the loudest. I did that for years, ignoring my own capacity. I wouldn’t say I’m rocking self-care now, but I now know I can defer a blog post, cancel a gaming stream or not clean a room in the house if my pain is too bad. Giving myself an element of prioritisation is a huge win – and therefore a positive. Being in pain all day has gifted me a greater sense of my own needs. I’m working on my chronic low self-worth, but even there I am now making progress!
TL;DR – Time to Lock Up the Great Health Thief
Everyone’s battles are different. Bringing light, positivity and perspective to our fights does not diminish the reality, but can bring balance. Life could not be more different for me now compared even to five or six years ago. With Fibromyalgia, a lifelong chronic illness, looking back on what ‘used to be’ will not help me.
Yes, many things have been lost. But most have been replaced by other things – many more positive and more helpful than the things I clung to before. So I encourage you, if you think your chronic illness has stolen everything, to sit down and write down things that are positive realities in your life. Remind yourself daily of those things – and make sure the Great Health Thief stays locked up. Protect your heart and mind then take it one day at a time.
Fibro Jedi is a 30-something male Fibromyalgia sufferer who has a wife and a young daughter. He runs a blog and occasionally streams gaming, as that is his main coping mechanism when dealing with pain. You can find him on Twitter, Facebook and YouTube.