On Being Sick

I realised this week that I have been in chronic pain for nearly as long as I had been alive before the chronic pain arrived!

That was momentarily sobering.

I was 24 years old when I woke one August morning with little bracelets of pain around each of my wrists, looping up my pinkie fingers.

Being 24, this was hardly a blip on my radar – must have held my book oddly reading in bed the night before. When it didn’t go away I wondered if I did something strange in my workout.

Then it didn’t go away for a long time.  And it started to spread.

THAT made it to my radar!

Eventually I broke down and went to the doctor.  Then more doctors.  After enough quality time with doctors for a lifetime, I was diagnosed with Rheumatoid Arthritis (RA).

That was 21 years ago. 

When I first got sick, the pain was terrible. Beyond-my-previous-capacity-for-imagining-pain terrible.

RA is an autoimmune disease. That means you get sick because your body attacks its own cells. With RA, it’s your joints that the body decides to war against, so your joints swell, and hurt, and sometimes get deformed. They may even degrade away. (This isn’t jolly news when you are 24.)

Sometimes they just decide not to work and you drop things or face-plant, or other amusing party tricks. (For YEARS after I got sick I stopped holding babies unless I was sitting on a couch or arm chair. The thought of just dropping a small baby with no warning at all terrified me.  And was incredibly easy to imagine by that point. )

RA also has non-joint effects too, like astounding fatigue.

They tell you when you get RA that you’ll experience ‘morning stiffness’. This is an understatement of such magnitude as to be a sick joke.

There are 30 joints in each of your feet, did you know that? I didn’t, until the ‘morning stiffness’. Now I’m intimately familiar with Every. Single. One. of those joints.

I used to set my alarm for two and a half hours before I really needed to be up. Not so I could read the Wall Street Journal over breakfast, mind you, or perfect my hair and make-up, but because the pain could be so bad I didn’t how long it would take from the time I woke up to the time I could walk well enough to get ready for work.

But here’s the thing: I don’t live like that anymore.  

After about three years I began to improve. The excruciating pain very slowly mellowed to tolerable. Then eventually even to mild pain most of the time. Fewer joints were affected. If you can imagine, the deformed joints even straightened! The crushing fatigue became mostly manageable.

Now I can usually walk the moment I wake up!

Part of this is a remission: the RA stopped eating up my body. I don’t know why it stopped, yet didn’t leave completely. I don’t know why I was healed, but not entirely.

So, my life has changed a great deal since the first few years of being sick. Chronic mild and periodic moderate pain beat chronic horrific pain ANY DAY.

And now there are FAR more options for treating chronic pain. Back when I got sick, a progression of drugs with increasingly horrible side effects, and maybe periodic joint replacement surgeries were the future awaiting me.

Research paid lip service to exercise for RA, but I actually had one doc say ‘Well, don’t worry too much about exercise, after a while you won’t really be able to move much anyway.”

To a 24 year old girl! 

But now there are all manner of mind-body options for reducing and managing chronic pain. Now I know what foods, routines, and choices help me minimise the pain. I know how to work out enough to manage the pain, without making it worse (usually). Now I even see blessings in what chronic pain has taught me over many years.

Even in this current, very stressful season I (so far!) remain healthier than I used to be on my very best days. It’s not great, but it IS good.

When I realised that I had been in chronic pain for 21 years, I thought “Might it actually be possible to leave chronic pain BEHIND before I get to 24 years of having it?”

Could my life improve even MORE than it has so far?

Sure, it’s a long shot, but why not try?

So, my new goal for the end of August three years from now, is to be living without chronic pain

 

Leave a Reply

Your email address will not be published. Required fields are marked *