Boredom, the new disease

So I have ME/CF (I refuse to put the ‘S’ at the end for it is NOT a syndrome) and Fibromyalgia and am taking all sorts of medication, but the worst (after the symptoms, and the symptoms the drugs cause) is the boredom.

I, like most others with a chronic illness, still think and feel the same now as I did before my diagnosis. Yet I have zero (mostly negative) energy to do anything. Which leaves me with thoughts and feelings I cannot act upon for lack of energy.

Meaning I’m bedbound yet crave to do all the things I have always done, but even going to the local cafe by myself is impossible as I have no way to get there. No car (can’t afford a second one) and I can’t walk that far.

So what to do all day? Reading sometimes brings on a dizziness attack, walking to the living room leaves me breathless so the rest of the house is pretty much out of bounds.

And I hate daytime TV.

Last year I wrote a book on my phone, one hundred thousand words by thumbpressing, but do I have the energy to go to my computer, turn it into an ebook and upload it to Amazon after finding out how to do that? Nope.

I have no money so I can’t online shop and get excited about a delivery. The only mail I receive are bills.

So what to do? Damn good question.

Boredom – the real kind

I wrote a short post not long ago titled “What to do all day?”, a veiled reference to my complete and utter boredom.

I did my best to sugarcoat it, to look at it from other points of view and consider the fortunate aspects. But not today.

Today I am just well enough to stay in bed (as per every other bloody day) and watch TV. I hate watching TV.

I do not even have enough energy to continue the final drafting (my seventh or eighth, or maybe the twentieth, I think) of my book. The book I started writing over a year ago to help keep the boredom away. I’ve managed two hundred words or less a day, about ten minutes. The excitement is almost too much for my medication.

Damn, everything is so circular when you are chronically ill. I could easily cure my boredom by walking to the computer room, turning it on and playing a game, yet my illness has left me with not enough energy to get there. For weeks now.

So I sit here and wonder what the hell to do. I honestly have serious thoughts such as, I wonder what it would be like if I cut off my big toe? I mean, would I really miss it? It certainly would keep me occupied for a while!

I could also go to the living room where my poor suffering wife helped me to acquire a games machine. I also have a DVD player and a couple of hundred movies.

But I have no energy to leave the bedroom, and the chronic pain of my Fibromyalgia forbids it. Circular, you see?

Boredom is insidious. I used to never be bored, I always could rely on my brain to keep me occupied. Right now my brain is spinning slightly and too tired to produce any thoughts worthy of consideration. I mean, just take a look at this post!

So there you are. Completely bored out of my brain and no energy to even think my way out of it.

The specialists didn’t tell me about this part of the process, only that it would probably last for the rest of my days.

Great, at least I have something to look forward to!

No more than 500 steps for 2.5 years

For myself, and many of my fellow chronic illness sufferers, not being able to walk more than five hundred steps in a day is normal.

For me I have not done so, without serious repercussions, for the last two and a half years now.

Think about that for a moment.

How many steps is it from your bed to the bathroom and back? To the kitchen? How many trips a day does this allow you?

Yes a shower counts as well, as does walking to the living room to watch television or (if we’re extremely lucky) going outside to sit in the sun.

It is like permanently wearing a restrictive bracelet. If we walk more than 500 steps our pain from the Fibromyalgia expands exponentially. Our dizziness, skin sensitivity, headaches, body pain etc etc etc from ME/CFS increase as well.

It is like being in jail, except an inmate is allowed to walk further in a day.

So, very little exercise. In fact no exercise at all or our symptoms explode, no matter what some old fashioned idiot ‘professionals’ might think. We lump them together with those that say everything we suffer is ‘all in our mind’.

How we wish they could experience our lives for just a week, even a day!

So the next time you think it is a long walk to the shops, or around your garden, think of us who would give anything to do what you are doing, without our pain.

What to do all day??

Some people ask this when they are at ‘work’, or in hospital, or sick at home.

The more difficult the answer becomes relates to how much time you have to ‘kill’. But isn’t that the worst thing we could ever do, kill time?

How many people are there, right now, who would give anything for more time?

If we added all the time wasting activities we indulged in as a race just how much time are we wasting? Probably enough time to put another man on the moon (or mars). Or write the next ‘once in a generation’ novel.

So why would we ever want time to go quickly? Well if you’re in pain the answer is an easy one, but for the rest it is not so simple. Even if bored beyond belief you can use time to accomplish something… anything!

Do yourself a favour and next time you want time to speed up, slow down and think about what your goals and dreams are and could you actually spend time on those instead? Even if it is in the form of some preliminary investigation for a few minutes? I assure you time will move more quickly if you do.

No more time wasting. On your deathbed you will regret it, I promise you!