I’m a collector. A collector of symptoms, that is. In my bag, I’ve got wheezing and coughing, sciatica and swelling, anaphylaxis and aches, plus everyone’s favourite; anxiety. Most of my chronic conditions have been with me since birth, or developed once I finished puberty. However, there is a condition that has only been with me a few years and it involves one symptom that I am still getting used to – chronic fatigue.
So, what is it? Well, chronic fatigue can be a symptom of a condition or a condition unto itself. To put it simply, it is severe fatigue and exhaustion and can take many forms.
Sleep doesn’t refresh you, no matter how many hours of it you get. Simple tasks, from showering to eating can drain you of energy. Dizziness can hit when standing up or sitting down, and brain fog can simply just appear. You can have problems with memory, aches and pains across the body, and even swollen lymph nodes. These are the most common symptoms but there can be so many more. If you have chronic fatigue, you may have one of them, or all of them – what a joy.
In terms of severity, like with most conditions, it varies. For some folks, it’s a symptom of another condition and can come and go. For others? It can be a long-term condition affecting every moment of life, such as Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). I’ll be honest, I am not the right person to speak about living with ME or CFS as that is not my experience. However, I would suggest checking out Ev at The Cornerstone For Thoughts and Emma at Chronically Craptastic for real voices on ME/CFS.
For me, chronic fatigue is a symptom of my hormone disorder, Polycystic Ovarian Syndrome.
I won’t divulge into the intricacies of PCOS here, goodness knows we’ll be here a while, but here’s the basics – my hormones don’t work quite as they should and that affects everything. But hey, if you want to know more, I’ve got you covered elsewhere on the blog. Anyway, back to chronic fatigue and PCOS. My PCOS and symptoms flare up around my menstrual cycle thanks to the hormonal changes in my body. This can be in the two weeks before my period, during my period, and even in the few days after. This is also when my symptom of chronic fatigue comes in.
As I mentioned earlier, chronic fatigue takes many forms. Brain fog is an overarching struggle in my flare ups. I feel like someone is pressing their heavy hand down on my head the whole time, making it hard to think beyond fuzziness. Focus based tasks such as answering emails and even watching the television becomes like trudging through treacle. Then come the memory problems. Words slip away from me like dust and don’t get me started on forgetting things I’ve been told or agreed to. During a recent flare up, I asked my husband to book an Uber for us, which I promptly forgot about and proceeded to book one for us too. Whoooops. I’m dizzy when standing up and sitting down, falling about the town. I can sleep for ten hours and still feel like I’ve been awake all night. It just makes everything that much harder. Tying it in with my other PCOS symptoms like cramps and sciatica, it can be a wild ride. I say wild ride; ideally it’d be a still sit on the sofa.
Essentially, a flare up of chronic fatigue reduces my ability to do everyday tasks.
In a flare up, I have to really consider my spoons and choose only a handful of tasks to get done as I just don’t have the capacity to do them all. Housework can fall to the wayside, plans get cancelled, tasks get pushed back at work. My symptoms are mild to moderate at worst, but even then, some days are complete write offs.
So how do I manage it?
As with most chronic illnesses, management can be tough but it is the key. I’m quite lucky in the sense that I can feel my flare ups and chronic fatigue coming on, they never just attack out of the blue. There are always small signs and a build up period. The first sign for me tends to be brain fog coupled with sleepiness that napping or coffee just won’t fix. When it starts to get worse and I can feel the dizziness and forgetfulness come into play, I know I need to consider the next few days. I cancel non-essential plans, rearrange the housework loads with my husband, and take the option to work from home when I can. This preemptive and gentle management means I can take care of myself, ensure I don’t push my limits, and keeps the chronic fatigue from hitting moderate levels. But sometimes, all the preemptive management in the world can’t stop chronic fatigue. On these days, the best I can do is move from the bed to the sofa.
Chronic fatigue and how it appears is incredibly subjective – every person who suffers with it will have different experiences, symptoms, and levels of severity.
It may be a symptom or it may be a full condition. However, there is one thing that is objectively true about chronic fatigue, and by default, all chronic illnesses. It is not something that will be fixed by going for a walk. Or doing yoga. Or drinking some water. If you say this to someone with chronic fatigue, I can guarantee you are not helping, and are probably making them feel worse by not being understood. Chronic fatigue is a legitimate symptom and a legitimate condition that alters lives.
What to do if you are concerned you may have chronic fatigue?
My first piece of advice would be to look at your sleep schedule. If you are only getting five hours of sleep a night, then of course you will struggle with brain fog and exhaustion. But the most important piece of advice I would give is to seek medical advice. Chronic fatigue may be the pointer to another condition, from anxiety to PCOS, and tests can be run to confirm them. It could very well be that you have ME or CFS if the tests don’t point to anywhere else. Chronic fatigue, as a symptom or a condition, is not something you should self-diagnose. You could be putting yourself in harm’s way by not getting the medical help you need or assuming you have symptoms of fatigue – it could be something else entirely.
If you have any questions about chronic fatigue as a symptom and how I manage the flare ups, feel free to ask them in the comments below. The more we talk about these conditions, the more widely understood they become, and that’s what it’s all about.
Thanks for reading,
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Educate & Donate: Stephen Lawrence Day | Stonewall UK | Survivor’s Trust | Mind |
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