Well Enough to Drink Coffee?

I have two close family members who suffer from the debilitating condition known as ‘Myalgic Encephalomyelitis’, or ‘Chronic Fatigue Syndrome’ (ME/CFS). It’s an ‘invisible illness’: one that generally cannot be seen by onlookers except perhaps by those who recognise the signs, such as they are. ME/CFS is characterised by extreme tiredness, aching, inability to sleep properly, inability to walk very far or stand up for long. In sort, this is a limiting illness – something that drastically limits the patient’s ability to live a normal life, or even to gain employment.

Unfortunately, in society, we are plagued by so many ‘amateur doctors’; ordinary, non-medical people who think that because they know what it’s like to be ill in ‘normal’ ways, they also know everything there is to know about all other illnesses too. In fact, most people can’t even tell you the difference between ‘signs’ and ‘symptoms’ – and this is fundamental! Symptoms are how the patient is feeling – pain, tiredness, nauseous and so on. Signs are what you can see or measure – flushed skin, high temperature, sweating, vomiting, pulse rate etc. And the thing with an ‘invisible illness’ is that it’s almost all symptoms – things you can’t see. But it’s no less real for that. And yet, people with ‘invisible illness’ are judged by these oh so highly qualified people, who sometimes then go on to make hurtful comments and such, to people who are already distressed and feeling ‘different’.

For instance, say I park with one of my ME people in a Disabled parking space, and that person gets out and starts walking, you can see these people gawping as if to say, ‘Huh, nothing wrong with her!’ Thing is, though, that 50-100 yards down the path, the patient may well be exhausted and may not be able to get back to the car without my having to break out the wheelchair. I’m so glad these observing people are not in charge of my patients’ medical care!

So I’m sharing this post today to raise awareness of ME/CFS, even though apparently it was actually May 12th that was ‘International ME/CFS Awareness Day’ (funny how most people remain unaware of ‘awareness days’!) – and that’s two weeks ago. One of my friends recently shared a great post by an ME/CFS patient which describes the condition and its effects very well; I would be honoured if you could read it. It’s my hope that people could perhaps become less judgemental towards those with ‘invisible illnesses’; maybe that person staggering along in front of you when you are in a hurry has something like this, and you need to give them a break. Whatever, take a look; it’s a great article and very well written:

Often people find it hard to understand why ME folk can do something once but not repeatedly.  

I used to think that way too.

Before I was ill, I remember hearing a comment about a colleague who was off work on long-term sick leave:

Some-one said, “If he’s well enough to be out drinking coffee, he should be back in work!”

I’m spared the memory of my reply because I was dashing out to teach a class at the time, but I remember thinking that he was obviously on the mend and would no doubt be back to work in a day or two.

I would think differently now, because I know that some illness recoveries are not quite that simple. Sometimes recovery stalls.

We are so used to thinking of some-one as either ill and in bed or recovered and at work, that we have difficulty understanding the long-term limbo of chronic illness.

This is where an analogy to a bank balance comes in handy.

We are all familiar with budgeting our finances and with the concept of “saving up” for something special.  The higher our income of course the more often we can indulge ourselves.

So lets imagine looking in at a posh restaurant. Can we tell who, amongst the diners, eat here often, and who has saved for months for their meal tonight?  Hopefully not – hopefully all diners are enjoying their dinner with equal delight!

So, just as observing a single monetary splash does not tell us everything about an individual’s financial state, neither does observing a single moment in time tell us much about an ME patient’s actual level of health.

Of course, for those with no flexibility there won’t be this confusion – because quite simply these folk won’t be eating out at all – every penny (or unit of energy) being taken up with simple survival!

Yet, for those of us with ME who are not fully “severe”, we might sometimes be seen out and about, smiling, laughing and looking apparently “well”.

At this point please remember, that it is not possible to tell from this exactly how “well” we are! That hour of freedom might have come on credit, and at a high interest rate.  It might therefore have consequences reaching forwards over the next days, weeks, or perhaps months.

Adrenalin, and “feel good” hormones are amazing at hiding the true impact at the time!

So, a day out can be bit like spending on a variable budget – with a credit option that doesn’t tell you when you start dipping into it, and an interest rate that is only declared a couple of days after the big spend!

Doing something with this sort of arrangement, means that you can’t risk repeating it too often, and certainly not on a day to day basis.

Yet, to get out once in a while, and do normal things is so very precious. For that reason, sometimes, we’ll just do it anyway.

So if you see one of us having a coffee somewhere and looking well, it could be that we are on a recovery path… but more likely, we are just managing things in order to splash out for a moment!

And were one of us to suddenly really recover?

Well our friends wouldn’t be long knowing it, because in the same way that money is easily spent, so health and well-being is hard to hold back.

I think I’d start with my garden….

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