Living with Fibro: What I Lost and Gained

To those who are hooked in with me on Twitter you’ll know that it’s been a really hard few months. On the whole my Fibro is getting worse, with particular focus on the joints between my shoulders and my collar bones. My hand pain has also become much worse, which has an impact on my work – and on my gaming time for that matter.

So I wanted to consider the ‘Spoonie Life’. I am going to think about what I have lost as a result of Fibromyalgia, but also what I have gained as a result. It’s important to keep this balance because, side effects such as face pain, or depression, can lead you to only feel/believe the negative things and I need to remind myself that not everything is bad.

What Fibro Took From Me

Firstly, the ‘negatives’ – more accurately, some of the reality of battling Chronic Pain.

1. Strength: Being an early-thirties bloke, I should be at peak physicality. The reality is, however, that I can’t lift very much nor endure a medium-length amble with family any more. Lifting things (even as mundane as setting up the chairs at church) is too tiring and walks make me want to sleep. Even lifting my arms to decorate our Christmas Tree made them ache!
2. Driving: I can still drive. However, due to ‘Fibro Fog’ I am not in a fit cognitive state in the mornings to drive to work and after a day of work I’m too tired to drive. So that meaans I am only driving for a few hours in the year. Thankfully my other half can and does drive.
3. Social Capacity: despite being an introvert, I didn’t mind social time with a few friends or family members. Now they completely drain me and I just ‘want out’ if I’m in a social capacity for even a couple of hours.
4. Working Capacity: due to very low energy levels, and high pain levels, I simply cannot work as long, or as many days, as I used to be able to. In a self-employment situation that’s really hard. Meetings have to be re-scheduled if I’m on a really bad Fibro day. Deadlines have to be adjusted. I have awful days at work where I try to do my work, but with a poor concetration span, I get very little done.
5. Sleep / Rest: With Fibromyalgia comes a lack of good quality sleep. Some nights are lost to Painsomnia, a combination of pain and insomnia. I am tired through the day and not tired enough to sleep at night. And rest is not always restful. With a lack of sleep, the concentration span is worse, pain is higher and energy is lower. That’s hard.
6. Memory: with Fibromyalgia comes a poor memory. I either forget something, or I ‘mis-remember’ things, so my other half has to remind me what the reality is, where my memory has stored something different. Happens a lot. Thankfully, she has a great memory!

Okay, there are more, but I don’t want to go on whining…

What I Gained With Fibro

1. Greater Self-Assurance: as I have a physical limit applied to me, I cannot be a ‘people pleaser’, even in my work capacity. I have learned to say “No”, to answer the question of “How Are You?” honestly, and to know if I don’t have capacity for a work or social engagement to cancel or rearrange it. I still have to fight the false sense of guilt – but it is just that – false.
2. Better Perspective on Work: instead of working myself into the ground, I have gone down to working 4 days a week. Work needs to facilitate life – life isn’t swallowed up by work (most of the time anyway). I have to delegate, rather than shoulder the burden on my own.
3. Less Self-reliance Generally: my other half does a lot for me – from planning my work, to taking some of the household chores etc. I am more co-dependent than at any other time in my life, and in a marriage context, that’s very healthy.
4. Community: I have found Twitter to be a great place to find people with the same, or similar, conditions. I am humbled by the number of people who follow me – and I love the conversations I have around Fibro. For example, I wouldn’t have known to go gluten-free if I hadn’t been connected to some people on Twitter. Or that I should have a higher magnesium intake. I am grateful to those who have inputted into my own self-treatment. Thank you!

TL;DR

Fibromyalgia is a bit of a thief – it takes a lot from you. But often these journeys give back to you, even if it’s not in equal measure. It is healthy to remind ourselves of the positives, especially if the fog threatens to cloud them out with the difficulties.