My reality with Fibromyalgia
Firstly, I want to make a point that fibromyalgia can be completely different from case to case and it’s really bloody hard to try and explain what it is to people, let alone expect them to understand. Christine Miserandino’s Spoon Theory does a pretty good job explaining what it can be like for those of us living with fibro, but I’m keen to raise awareness of what the condition itself actually is too.
For some, the pain literally does not stop. That was definitely what it was like for me during the first year or so, and I am thankful that’s not the case anymore. I honestly did not remember a day without pain, and quite frankly you get used to it; the mornings I’d wake up and it wasn’t severe I would be so happy, but I’d still have a dull ache in parts of my body that I just accepted were a constant.
It’s been called the “invisible disease,” a poignant term that captures the hidden symptoms of fibromyalgia. Beyond the widespread pain and general fatigue, this condition can make people feel isolated and misunderstood; I didn’t admit this to anyone and I also still rarely talk about my condition now with my loved ones for that very reason - it is not a physical illness, not one that can be seen, so for a person to understand it, let alone comprehend what you’re feeling is really difficult. Often I would think people thought I was making the pain up - I am a young healthy 20 something after all. Whether they did or not, I don’t know, but I wouldn’t blame them as how can you relate to something you can’t see or feel? Even so, suffice to say I felt shitty. So it’s not surprising that alongside fibromyalgia, many people then suffer issues with mental health. For me, especially at the beginning, this triggered anxiety.
I’ve always had pride in the fact that I’m a reliable, upbeat, on-the-go person who people can truly depend on, but these traits that were such a big part of my personality were tainted when I developed this condition.
I was an event coordinator, commuting to london every day and in this profession, quite often, working long hours. I really tried hard to keep on top of my fibro but I always describe it as an illness that works in a vicious cycle - stress and tiredness being two of the highest triggers for the pain. Commuting is not a walk in the park, by the time I’d walk into the office I’d normally always have had a stressful and exhausting journey to work which meant I was starting every single day on a back-burner. Most days I couldn’t get a seat, and when I did people would glare at me as if to say ‘you’re young, you should give that up for someone who deserves it more’, and do you know what? To the eye that was true, but what people didn’t know is that especially by the end of a working day my legs could feel like they would literally give way if I took one step more. I actually passed out and collapsed OFF of the train onto the platform before; the doors opened and out I went. Do you want to hear the funniest part? People just walked straight over me! They were so caught up in the rush hour and getting to work that they did not have time to check on me which was a turning point for me. I could not handle London life anymore. I do laugh about it, mainly because I had to be driven off the platform in one of those little assistance vehicles (used for the elderly normally), which was slightly mortifying but entertaining thinking back nonetheless.
Some days, I physically couldn’t even get myself out of bed let alone tackle the journey into work so I would tell my manager and work from home. Luckily for me, my manager was amazing and so supportive but that still didn’t stop me from feeling like I was letting the team down or that I wasn’t performing well enough which really stressed me out. So I can only imagine the stress that others have when their work-place is not so compassionate as mine was. Remember I mentioned the vicious cycle? Looking back I was constantly stressed and tired, so the pain would get more intense, which meant I could not sleep, which meant my stress levels got higher etc etc. which lead to anxiety. I’d stopped socialising like I used too, I honestly can’t tell you the extreme fatigue that clouded my everyday life, it would get to Friday and I’d often sleep for 12-14 hours straight (if I hadn’t mustered enough energy to go out and do something) I REALLY missed seeing my friends and doing things on weeknights, and in general just feeling good about myself. I loved my job, and I love London but after a year with no progress or any control over my condition it was time to admit that I just couldn’t do it any longer; I was driving myself into the ground at the age of 23.
I decided to quit my job (heartbreak because I really did work with the best team), and travel for a while before moving into a job in the charity sector, which I think played a big part in me figuring out what I needed to get some sense of normality back for me. This was my fourth long trip away, but the first in which I’d be travelling since developing fibromyalgia so I did have to be realistic with how much I could do. If I did a hike, I needed to think about having rest days afterwards instead of jumping into the next activity, the same went for if I had a long journey I’d need to ensure the next day or so would be chilled in order for me to wind down, otherwise I would pay the price.
I think the trip allowed me to understand my limits, and what was worth pushing myself harder for and inevitably experiencing a bit of pain. And that’s how I would pretty much sum up my life living with fibromyalgia now; understanding when my body has had enough or telling me to slow down, and also accepting that the pain will come from time to time when I choose to ignore the signs and push myself further. Ie. hiking Fitz Roy in Patagonia which had a total time of 10 hours in extreme weathers. For me that’s worth it so I’m happy (well, content) to pay the price afterwards.
I have learnt my limits and my triggers (my main ones are stress, sleep and cold weather! Unfortunately I live in England so I have to deal with the fact that in Winter I’m going to struggle more, but I can control my levels of stress and sleep). And once you have figured out your triggers, it’s just about evaluating your life and finding where you can make changes to make everything easier on yourself. Time to me is precious, so having time in my day that was previously used on commuting has made the world of difference - that extra time I get from working locally has meant I do not unnecessarily exhaust myself and I can spend it with my loved ones; which by the way, helps a whole bunch when it comes to my anxiety - which is also basically non-existent now!
I can’t lie and say that once you have a handle on fibromyalgia it’s all easy sailing because it’s not. Flare-ups happen, that’s the reality of it and occasionally at completely random times too which will knock you for six, however, the more you understand your condition, the more you can be in control and these flare-ups become less frequent - to me, that’s a win. I still have a great life and do what I want, I'm still creating memories all over the world, meeting new people and experiencing new cultures, I just sometimes have to think things through a bit more than I used too.
For those of you who have fibromyalgia - it can be a bit overwhelming trying to figure it out all on your own so please reach out and talk to me so I can help any way I can!