I was diagnosed with Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyeltis (ME) in 2015 after 18 months of tests with no answer.
I fought it for a long time, if I’m honest, but nowadays it feels normal to have to think about the amount of energy I have on any given day versus the things I might want or need to do. CFS/ME is just one of the many disabilities or long term health condition where fatigue is a major issue, if not the main issue.
But what is fatigue really? Doesn’t everyone get tired? Well, yes, everyone does get tired. At times everyone can feel exhausted. But there are some fundamental differences between real fatigue and tiredness.
Fatigue is a medical condition in its own right, its so much more than just being tired as you would be after some late nights or working too hard. It’s overwhelming. It’s all consuming. There’s no amount of sleep that could ever make that feeling go away. An early night won’t solve it. It doesn’t matter if you sleep 3 or 13 hours during the night, you’ll still wake up feeling like you haven’t been to bed.
It’s a physical exhaustion that causes pain. It’s muscle fatigue well beyond a hard core gym session. Some people describe it as how you’d feel after running a marathon with a hangover and the flu. They ache. They feel like they have no strength in them. Exercise isn’t usually an option as a way to build strength because it results in even more fatigue.
Fatigue causes problems with cognition and we get brain fog. It increases forgetfulness, we struggle to find words, understand numbers or make decisions. For me personally, this is the bit I hate the most. It feels like the whole world is too confusing to be a part of, and makes it seem as though I’m lost.
Being highly sensitive is another problem. Whether its light sensitivity, sound, smell or something else, when we’re struggling with fatigue these things become a big problem. For many patients it means almost total isolation because sounds are just too much to bare.
Chronic pain often goes alongside fatigue, whether it’s a chronic pain condition that triggers fatigue, or a fatigue based condition that also includes pain. It’s the kind of pain where it feels like you were attacked by someone wielding a baseball bat, you just don’t have the bruises to show it. And the kind of pain that runs through every nerve in your body. The slightest touch can be agony during high pain phases. Traditional pain killers just don’t cut it. They might take the edge off if you’re lucky, but that pain is always there on some level.
It’s often described like a constant flu. You have no energy, constant aches and pains as well as things like nausea, dizziness and balance problems. But with the flu you know it will end and your body will fight it off eventually. With fatigue that just isn’t the case. There’s days that are better than others, but ultimately it doesn’t feel like there’s an end in sight. And for many people with CFS/ME and other chronic health conditions where fatigue is a symptom there isn’t an end.
I might say it a lot, but I’ll say it again – I know I’m one of the lucky ones. My worst was never as bad as a lot of others, and I’ve been able to get back into living a relatively normal life (with a LOT of rest breaks!). But because of what I went through, and what I see others go through, I’m determined to do whatever I can to help raise awareness so that more people can begin to understand what fatigue is, and how variable it can be from one person to the next. And maybe then some of the millions missing will be heard.
I have been creating some graphics we can share to help raise awareness, and you'll find one of them at the bottom of this page. Send this on to people you know who don’t get it, or think they get it but really don’t. Lets get the truth about fatigue out there for all to see.
I'm really proud to lead an employee disability network supporting people with fatigue in the organisation I work for, and I'm even more excited to be bringing that out into the "real" world too! I get to use my experiences, the things I've learnt and my life coaching certification to help people with fatigue.
I'm offering one to one coaching via skype for people dealing with fatigue as part of a disability or long term health condition.
- Have you recently been diagnosed, or are you waiting for a diagnosis?
- Are you trying to find your way through the minefield of information out there and don't know where to start?
- Are you trying to explain your situation to friends, family or colleagues and struggling?
- Are you working and trying to work out how you can keep working without it damaging your health?
- Do you need help in understanding what adjustments you might need in your workplace?
- Do you just need someone who knows what it feels like to talk to now and again?
I can help with all of these things! We'll have an initial no obligation 15 minute Skype call to talk about what support you might need and how we might best work together. I'll follow that call up with an email outlining what we've discussed and an introductory plan.
If you'd like to know more, or are interested in signing up, then please get in touch!