Why ME is so much more than “just” being tired

Laura Chamberlain explains why “tired” doesn’t begin to explain living with ME…

If you’ve heard of ME before, it may not have been in a flattering light. Ricky Gervais famously joked that ME was the condition where: “I don’t feel like going to work today.”

This joke is over 10 years old, but unfortunately, it is a stigma those of us with ME, which stands for Myalgic Encephalomyelitis, still face.

I don’t think it helps that the only thing people really know about ME is that it makes you tired. But tired doesn’t come close to describing it.

This is for three key reasons:

1. It is so much more than just fatigue:
   There are so many more symptoms, so many more aspects to this condition
2. It is fatigue but not as you know it:
   Fatigue is a big aspect of our lives but it doesn’t behave like healthy tiredness, it affects your mind as well as your body and it can be so extreme as to leave people bedbound for decades
3. The key symptom is actually an intolerance or an abnormal response to exertion:
   Fatigue is part of this, but what is key here is that far from “not feeling like going to work today,” pushing ourselves to do so can have devastating consequences.

I should also note that this condition is also sometimes referred to as Chronic Fatigue Syndrome, which doesn’t help matters. In the UK a lot of the time the condition is referred to as ME/CFS. But there is also many who argue these are separate conditions.

I am not going into the politics of that in this article. But I think it is easy to see how the name “Chronic Fatigue Syndrome” makes it seem like we are just a bit tired.

But as author Laura Hillenbrand said about ME: “Fatigue is what we experience, but it is what a match is to an atomic bomb.”

ME is so much more than just fatigue

Fatigue is not the only symptom ME sufferers face. The key symptom is an abnormal response to exertion, which I will talk about in more detail below, but what I want to make clear in this section is the vast array of symptoms we deal with.

Here is a short selection of symptoms of ME/CFS. It is by no means an exhaustive list. It is derived from the Canadian Consensus Criteria and you can find a more detailed list here. 

• An abnormal response to exertion – exhaustion results from minimal exertion. This affects both physical and mental stamina.
• Post-exertional Malaise/ Post-Neuroimmune exhaustion – a worsening (sometimes extreme) of symptoms after exertion that can hit 24-48 hours following exertion
• Fatigue – constant and unrelenting, affecting both brain and body
• Sleep dysfunction – sleep is unrefreshing and does not improve fatigue. Insomnia is common. As is sleeping for abnormally long periods or daytime sleeping with or without effect on nighttime sleep patterns. Patients also often need naps during the day in order to cope.
• Pain – joint and/or muscle pain as well as headaches or migraines
• Neurological and cognitive problems – impaired concentration, problems with short-term memory, difficulties processing information, word-finding problems and perceptual and sensory disturbances (Such as sensitivity to light and sound, problems focusing, muscle weakness and ataxia)
• At least one of the three following
  1. Autonomic problems– the autonomic nervous system is responsible for the control of bodily functions that you don’t consciously control – so problems here include conditions like PoTS, which causes symptoms like palpitations, dizziness, cognitive problems, which are worse the more upright your posture; irritable bowel syndrome; bladder dysfunction 
  
  2. Neuroendocrine problems – Problems with regulating body temperature and dealing with outside changes in temperature, weight changes
  
  3. Immune problems – tender glands, recurrent sore throats, flu-like symptoms, sensitivities to foods, medications and/or chemicals

To be diagnosed, symptoms also need to have lasted longer than six months.

So, as you can see, there is a lot more going on here than just feeling a bit tired.

It is fatigue but not as you know it

When I talk about my symptoms I feel as though fatigue is an underestimated symptom. My pain that I get from another condition called Adenomyosis can be so bad I am unable to move on the floor for several minutes. I feel like if I say that to people they may think I’m exaggerating but they understand the concept.

My fatigue is by far my most debilitating symptom. It can feel as bad as those few minutes of pain but it is far more constant. It is the symptom that keeps me in my house. It is the symptom that means I have to lay down in bed multiple times throughout the day. It is the symptom that means that sitting here and writing today means tonight and tomorrow I will be less able to hold a conversation. It is the symptom that means it takes me days and days to write one blog post.

So that’s how it affects me. But how does it feel?

What my fatigue feels like

I’m going to do my best here to put this in terms of experiences healthy people have had. I’m going to get you to imagine three scenarios. And then I’m going to get you to combine all of those feelings.

1. The worst flu you ever had. When every inch of your body feels weak. It aches. When your body is screaming out for rest. When the fever is making it hurt to think. Remember that? Remember how your brain felt almost swollen as you tried to process the simplest of thoughts? Remember how your brain and body both felt utter exhaustion. That. Hold onto that
2. A nicer memory perhaps. You’re younger. You go to a theme park from the moment it opens so you can get to the front of the queue. You spend all day with huge rushes of adrenaline. One after the other after the other. Then it’s closing time. And you’re heading home. But you can barely keep your eyes open because the adrenaline has worn off. You’re still somehow buzzing. Your ears are ringing. But you’ve run out of juice. The emotional ride of all those thrills has used up every ounce of energy you have. That. Remember that feeling, except you skipped the fun part and jumped right to the end.
3. You’re having the argument that will end with the break up of a major relationship. You’ve cried, you’ve shouted, you’ve gone through a huge range of emotions. But its been going on for so long that you’re just done. You can’t argue anymore. You’re torn to pieces. You just need to stop. I don’t want you to focus on the emotions but on that emotional exhaustion that you can feel clouding your mind and stressing your body. That. Hold onto it. (Or another example would be the day you find out a loved one has died)

Now put those three things together. The physical and mental exhaustion of a particularly bad bout of flu, the post-adrenaline down after a day of thrills, and the emotional collapse of the break down of a relationship.

That is the closest I can come to describing it. But actually, how it feels isn’t necessarily the hardest thing to deal with… It is how it behaves.

How the Fatigue behaves

I’ve got you to imagine how it feels. But the problem is, all of those examples I gave are temporary. Dealing with something temporarily is very different from dealing with it every day.

And what I need you to understand about fatigue in ME is that it is unrelenting. It may fluctuate. But it is always there. I go to bed tonight knowing tomorrow it will be waiting for me. Knowing that in a week it will be waiting for me. Knowing that in a year it will be waiting for me still. That is what is incredibly difficult about this illness. To write that even, is incredibly hard.

The crucial thing I need to get through to you is, however much you may look at our fatigue and think it is “not so bad”, you need to remember that it is unrelenting and it is punishing.

We do not get sick, rest and feel better. It is every day that this fatigue engulfs us. Every day that we live in a prison created by our limitations. And the worst of it is, we can’t push through, we can’t just ignore it. Because doing so results in extreme punishment. Doing so means the little we could do today is a fantasy tomorrow.

Which brings me nicely to my next section

The abnormal response to exertion

Now, this phrase will often have the word “exercise” instead of exertion. This is misleading for two reasons. 1. It does not need to be physical exertion, it can be mental or emotional and 2. Exercise makes it sound like we need to go for a run to trigger this. Far from it. It can be as big as meeting a friend and as small as brushing your teeth.

Actually, it can be much smaller still. It depends on how severe the patient’s ME is. But I will tell you, you will be surprised at how little exertion is needed in even high-functioning patients.

In fact, it feels to me that just existing is exertion enough. My body feels as though it is constantly punishing me for the simple fact of it’s managing to function enough to keep me alive. And actually, if you look at the most severe patients it is clear this is the case for them. There is a great video here which will give you an insight.

So what do I mean by an abnormal response to exertion? Well, I have a baseline at which I can exist without making myself worse. Most of the time. There are flares that are out of my control but, in my case, I usually return to the baseline eventually. Other people can gradually get worse through no fault of their own or equally improve through no effort of their own.

But it is very difficult to always exist at that baseline. For a start, going to doctors appointments mean I over exert myself. This means my level of functioning then decreases for days following. And actually, functioning always at your baseline isn’t much fun. For your mental health, you need to see people occasionally. Do something pleasurable. But this always comes at a cost.

Now, this might not sound too bad, so lets put this into practice. If I circle back to that Ricky Gervais joke about not feeling like going to work. When I was first ill I was working. But I wasn’t coping too well. We hadn’t gotten to the bottom of what was wrong with me but, unfortunately, with the attitudes towards ME I think I would have received the same advice, which was to increase my activities until I was doing all my normal duties, such as leaving the office to attend events.

I pushed through. I pushed through when my body was telling me it couldn’t do any more. I would go home and sleep. I couldn’t actually write anymore by the time I left the office. I had no life outside going to work, coming home and sleeping. I made myself a sandwich for dinner one night and cut my hand because I steadied my weak hand by spreading it out over the sandwich but my brain wasn’t able to compute that it was a problem if my hand was in the way of the knife.

Now, in hindsight. If at this point I had realised I wasn’t coping and gone to a part-time job I may have continued to function at that level. But I didn’t. I pushed until one day my body gave up. I could barely walk for weakness. My bladder started leaking. I went home from work and I never went back. I haven’t been anywhere near capable of working in the five and a half years since. I pushed my brain too hard and neither my brain nor body have ever recovered.

This is what we deal with. And, unfortunately, many of us only learn the consequences of pushing our bodies too hard when it is too late. The damage has been done.

So, if I can ask you once more to use your imagination. Remember that feeling I got you to think of? The mental fog and muscular exhaustion of really bad flu, the post-adrenaline crash after a day of thrills and the emotional fatigue after a particularly bad break up.

Now we need to add to that. Imagine that being every single day. You don’t spend several days recovering and it’s gone. Day after day you wake up and it’s there. It never gives you a break.

But that’s not all. You also have a body that punishes you every time you try to just get on and live your life. Every time you do something productive, or something fun, or even just try and get to the bottom of why you’re so ill and go and attend a hospital appointment then you are punished. You are punished with a brain that can’t think, a body that feels weak or painful, with a reduced capacity to cope with your own basic self-care.

And we still aren’t done. Remember my first point? ME isn’t just fatigue, it’s not the only symptom that gets worse when you overexert. Overexertion may mean tomorrow you nearly faint every time you get up to go to the bathroom. It may mean you can’t even follow a well-loved TV show. Or that your eyes can’t focus properly.

So I hope you can see that ME is so much more than being “a bit tired” and that fatigue, for us, is so much more extreme that the word suggests.

There are a few words for tiredness but they all describe similar types: exhaustion, fatigue, feeling pooped-out. None of these does justice to the experience of ME sufferers. Maybe it is time we extended the vocabulary.