How to explain the fatigue of living with chronic illness – I’m a ten year old ipad

Today I picked up my ten-year-old ipad.  An ipad 2.  It was my most precious piece of kit ten years ago. I adored it. I saved hard for it.  I love my tech and the ipad embodied everything I love – portable, light weight, great battery life and perfect for work or play.  So many apps!  Music, movies, so many things to do with one little tablet!

And then I realised. I’m just like my ten-year-old ipad. 

Living with the fatigue of any number of chronic illnesses, diseases like RA, like MS, like lupus, like fibro, so many diseases, is like trying to work with an ipad 2.  A ten-year-old ipad.  It still looks good, in fact not so very different at all to the shiny, brand-new ipads on the shelf.  You charge it up and start to use it.  And it works great!…At first.  Ok, maybe it’s a little slow, but hey, that’s ok.  Give it a moment, there, see? Its fine. 

Then it starts crashing and glitching.  And it won’t run the new apps you want to run.  You can’t upgrade the operating system; it’s no longer supported.  It’s been abandoned.  So it can’t do the things it used to be able to do.  And as you’re realising how limited it is now, it suddenly crashes again. But this time you realise that the battery is dead too!  After just an hour!  You can charge it up again, but that’ll take many hours, until tomorrow at least. And then tomorrow, after charging it up as much as it can be charged, it will only work for a few minutes, an hour at best. Again.

That’s what life with mixed connective tissue disease is like.  I look pretty much the same as I did ten years ago, but I sure don’t work the same way.  My body is not functioning as it should. Autoimmunity is attacking multiple parts of my body, joints, muscles, liver, adrenals, kidneys, nervous system, and I never feel good.  I am always sick. I am always in pain. But I look pretty much the same as I did ten years ago.  A bit older, obviously. But pretty much the same. 

I don’t want to spend my life complaining, so I whack a smile on my face, charge myself up, and do as much as I can do.  Because even an hour of doing something productive or fun is worth it.  It’s better than nothing.

I know it could be worse. Because it HAS been worse.

In my life currently, I have about four hours of function every day.  I’m hoping when I can go back on my medication that I might get up to six hours a day.  That’s great for me, but its about ten hours less than the average healthy person has, assuming eight hours for sleep.

No wonder I’m always behind. No wonder I’m always playing catch-up.  No wonder my house, my garden, everything is always such a mess.

All I have is four hours or so, the equivalent of my ten-year-old ipad’s one hour of charge.  Some days I have a little more energy, some days I have a lot less.  But the thing to understand is that it’s NOT a choice. 

It’s the same, every day, no matter what I do.  If I rest today, that doesn’t give me six hours tomorrow. Although if I push myself beyond my limits, that might mean no hours tomorrow.  It’s not a choice.  It’s a brick wall.  I’m not deciding I’m too tired and ‘giving up’. 

For healthy people, the mind will quit long before the body will.  It’s the opposite for people who live with disabling, chronic illness. Our minds are strong, because we have to be to make this painful, heavy body do any work.  Everything is twice as hard and takes three times as long.  And this body gives up long before the mind is ready to quit.  It glitches and crashes an finally runs out of battery completely. 

Just like the ten-year-old ipad, after an hour the screen is dead, the battery won’t take a charge. Not until tomorrow.

While I try and fit as much as I can into the four odd hours that I have, there is no extending that time, most days.  But.  Even though I am limited, and I can’t do everything I used to do, I can do something. And I will do what I can, for as long as I can. I am motivated and determined.  And yes, I know how to ‘push through’.

I am NOT giving up. I have found acceptance and I am at peace (for the most part).  I am working with my body because working against it is futile.  And not very bright.

It’s not that I give up on my body, my body gives up on me.  Its out of my control. Spending my life being angry about that is not going to help anything.  I have accepted my limitations.  The upside is that I have a greater appreciation for life than most healthy people.  I have gratitude for every enjoyable experience I’m able to partake in. I take nothing for granted.  Tomorrow is not promised, we all know this.  Every healthy person thinks about death on occasion. But no healthy person every considers that they could wake up tomorrow in terrible pain. And that pain will never go away.

I certainly didn’t.  But it happened anyway. 

When you’re healthy, you decide how much of anything you’re going to do. Work, play, partying, drugs, sleep. YOU decide.

When you’re sick, your body decides.  How much, if anything, you can do on any given day.

And that’s that.

I’m not weak. I’m not exaggerating. I’m not a party pooper. I’m not a big baby. I am not attention seeking. 

This is the way my life is.  I didn’t choose it. It chose me.  I didn’t do anything wrong to cause my illness and disability.  I am not to blame.

Oh, and the other way I’m like that old ipad?  Most people tossed out their ten-year-old ipad away many, many years ago.   That old ipad is of no use to them.

They don’t want to be bothered with something that’s too slow, and too limited to keep up. It’s no longer functional, and it’s no longer fun. Everything they want to do with it, it can’t do.  So why give it space in their lives? They are busy, they have their own problems.  They don’t have time to be constantly making adjustments for its limitations.

It can’t be fixed, it can’t be repaired.  Nothing can make it new again. There’s no changing that its obsolete. There’s no cure for that.  But if you’re patient you can still have some fun with it.  But not many people are patient.  Most people’s most valuable commodity is time.  Why waste it on a piece of junk that’s too slow?

I am slow.  There is no way to fix me.  It’s not going to take a bit more time. Its not going to take just trying a little harder. Its not going to take a change in mindset or more positive thinking or meditation or any kind of change in attitude. My disease is not in my mind, and it is not in my attitude.  Its in my body. 

I do believe that there is no mind/body separation. I do believe that the mind controls the body. But. When there is disease, all bets are off.

You wouldn’t tell someone who has a broken femur with the bone sticking out through the skin to ‘just try a little harder, I know you can walk if you really want to!’ would you?

So don’t say that to me.  I may not have bones protruding, or blood gushing, but I promise you, nerve damage is more painful than any bone ever broken.  More painful than any surgery, any wound.  Even though it is 100% invisible.

My body does not function the way it used to. There is nothing I can do about it. I can expect it to get worse, not better, but I am doing everything I can to slow down that process. I eat well, I exercise to the extent that I can, I take many medications, I meditate, I live mindfully and firmly in the present moment.  I keep busy, focused, I have purpose.  I am not anxious I do not worry about the future nor dwell on the past.

I am here, living my best life.  It just doesn’t look the same as yours. You can afford the latest ipad, I cannot.

Unfortunately, my best life is most often spent alone.  Cos nobody wants a ten-year-old ipad. And I’m tired of pretending that I’m shiny and new, or that I can keep up. I’m tired of having to break myself to be accepted by the healthy people.

So I let them go. They’re out there living their lives. If they ever think of me, its most likely in terms of confusion as to why I retired from life.  “I think she got depression”. I’ve heard it said more than once.   Why is it much easier for people to accept that mental illness is disabling, but not physical illness?  That disease cannot be overcome with pure force of will?

Its not depression. I am not depressed. Nor anxious. I’m not even lonely anymore…I was once. Very, very lonely. I reached out to many people.  But I ran out of things to say, reasons to text people.  And they stopped texting me.  They knew I wouldn’t be able to come out to play, and they (understandably) didn’t want to come all the way over to my house to sit on my couch, in my house, and do…nothing.

I don’t blame them, its boring. And time consuming. And time…is everyone’s most precious commodity. It’s the one thing, apart from money, that there is never enough of.   And its not until you run out of time that you realise time is far, far more important than anything else, including money.

I’m used to being alone and I’m used to occupying myself and finding my own sense of purpose. My life is full, just not full of people.  Its different to most people’s lives.  That’s OK. I do a lot with my four hours a day.  And sometimes I even play with obsolete, barely functional, ipads.