What is Myalgic Encephalomyelitis?

…and why is it so important to get this mountain wheelchair built?

Myalgic Encephalomyelitis is a long-term condition which causes people to experience severe, persistent fatigue associated with the body’s inability to recover after expending even small amounts of energy.

The Spoon Theory

To try and explain what it’s like living with such a long-term illness, Christine Miserandino, an award-winning writer, came up with what has been dubbed as the Spoon Theory. The “theory” arose when Christine was sat in a cafe with a friend. Her friend asked what it’s like living with a long-term illness, so Christine used the only tools which were to hand at the time to help aid her explanation; spoons.

The spoon theory has featured in numerous newspapers, magazines, medical newsletters and television media around the world, so much so that people suffering with M.E. often refer to themselves as “Spoonies”.

Miserandino has a far more elegant way with words than I’m able to achieve but I will try to summarise. If you’d like to read her version of the story you can do so here.

In this example, the spoons are used to illustrate how much energy you have. For a normal healthy person, you don’t really have to plan your day around your energy levels. For somebody suffering with M.E. you wake up each morning with a given amount of energy (spoons), once you’ve expended that energy then you are depleted. The result of this is that somebody with M.E. is therefore having to prioritise tasks so that they can get through the day without being completely worn out.

For example, a person with M.E. might expend a given number of “spoons” to get up, get dressed and have breakfast. Already, some of the available energy for that day has been depleted, and there is only a finite amount of energy left to carry out duties for the remainder of the day.

As Miserandino puts it; you could get to dinner-time with only one spoon left. This would mean that you were able to make dinner perhaps, but you’d have nothing in reserve to carry out any other functions.

The truth is, that most people with M.E. will actually always try to keep at least one “spoon” in reserve. It is even possible for them to eat into the following day’s energy allocation, but this would mean they were even more depleted the next day and it would in fact take several days to get back into balance. Add into that the fact that you never know much energy you will wake up with, M.E. sufferers are always having to plan ahead, and many feel they have to be prepared for the worst.

In the young, schooling and higher education can be severely disrupted. In the working population, employment becomes impossible for many. For all, social life and family life become restricted, and in some cases, severely strained.

Myalgic Encephalomyelitis and its Effect on Ada

When Ada was first diagnosed, her M.E. was extremely severe, and it remained this way for many months. She’d be screaming in pain with headaches and never seemed to have any “spoons” whatsoever. I’d have to carry her everywhere, even to the bathroom. She could eat, she could sit and watch television, but at times it was as if she was little more than a sack of potatoes.

After a time her headaches began to dissipate and we’d try and do something with her that didn’t involve the TV, but even a simple task like rolling a plasticine sausage would completely wipe her out for the rest of the day and the headaches would start again.

9 months later and Ada still frequently has days where she wakes up in the morning and is in severe pain all over her body for the duration of the day. On days like this we’re happy to let her sit and watch TV just to distract her from the pain.

For somebody who was so fond of being outdoors and had a real thirst for adventure, this has been a massive change. If you’d like to read more about Ada’s story you can do so here.

Supporting somebody with Myalgic Encephalomyelitis

Supporting Ada through M.E. is at times, tiring. It can be physically tiring, carrying her up and down the stairs, in and out of the car, or to wherever else she needs to be, but perhaps more importantly, it can be emotionally demanding too.

Seeing the change in Ada’s outlook on life, losing all interest in anything but the TV, not wanting to see her friends, and becoming completely withdrawn has been difficult for us to watch.

For myself, I don’t think I’d accepted that Ada has M.E. until very recently. I’d always hoped that it would just go away. I’m quite glad that this has been the case though, because not letting go of that hope is what’s enabled me to stay positive for Ada and the rest of the family.

Sure, I can help Ada by keeping her fed and watered, but for the moment at least, I think the most important thing is to try and help her to stay positive.

Myalgic Encephalomyelitis and Me

Since starting this project last September, my dedication has been relentless. Some days are quite enjoyable, but many are spent sat staring at a computer screen from 8:00 in the morning until 11:00 at night. In the first couple of months I’d often wake up at 2:00 in the morning then go and sit at the computer and continue my research.

Whilst I’ve been able to make much progress in a relatively short space of time, it does mean that often my own state of mind sometimes deteriorates and I need to get out and recharge my own batteries. Quite the opposite to somebody with M.E. I find that a walk in the mountains does wanders for me.

Being out in the vast openness, breathing in the fresh air, heart and lungs working hard, the thrill of the view, and sometimes the risk, the infinite adventures to be had… I can almost feel my worries physically being lifted away. It feels sort of like emerging from a cocoon and suddenly being free of the shackles that have been weighing me down for so long.

For me at least, when sat staring at a computer screen the deterioration is so slow that it can be imperceptible. The uplifting feeling of being in the mountains on the other-hand is sudden; a far more heightened sensation. And in that moment I become acutely aware of how low I have become since I last allowed myself some time in the mountains.

Why is it important to share this with you?

The Mountain Wheelchair

I feel so overwhelmingly lucky to have such easy access to the mountains. To have something that completely recharges my batteries and gives me a fresh perspective.

It occurred to me that people with M.E. don’t have this.

That escape.

That recharging and uplifting release.

Left unchecked, it’s just a slow, imperceptible decline into depression.

And this, this is why it’s so important to get this mountain wheelchair built.