Rheumatoid Arthritis and what was, what is and what will be

The last 18 months have been amongst the hardest of my life.  In many ways, I was stuck.  Stuck by my disease.  Stuck by my inability to work.  Stuck by my own attitudes at times.  Depression crept up regularly, and I would fight it back down. Only to feel it lapping against my feet, waiting for a string of usually small events to gang up and topple me over.

People say true depression has no reason.  It has no purpose.  It has no cause.  It just *is*.

That’s not how it is for me.  By the above definition, I do not have, nor have I ever had, depression.  When things are getting on top of me, I know what those things are.  Sometimes not in specifics, but in general terms. I know. I understand myself, and my own feelings to the extent that I usually know what is at the core of my feelings of being overwhelmed, of being beaten down, of being exhausted, of being sad.

The last 18 months were mostly tough on me because I could no longer work.  I made the decision to apply for all disability benefits available to me.  Doing so meant stopping all forms of work. I was only working very part time, freelancing in web design, web development, graphic design, copy writing, search engine work, ANYTHING I could get my hands on.  Finances were very tight and I took on pretty much any work available, usually at about a third of the hourly rate I used to work for.

I generally had to accept this poor pay rate, because people knew I had no other options.  Single mother with a child on the Autism spectrum who also suffers a disabling painful illness. Not a great place to negotiate from.  The world is full of people who are happy to take advantage of those in difficulty, under the guise of ‘helping’.

Having said that, I got by. I always found a job that would get the gas bill paid, or the phone bill.  There were always enough essentials, but not a lot of luxuries.  It was a ‘just in time’ lifestyle where every freelance job seemed to be bailing me out of jail. And somehow, I just slid by. I always found something.  And I got it done.

It was stressful.  I resented working for such low rates. And the stress and lack of sleep had a bad impact on my health.  So, on my doctor’s advice, I applied for the early release of my superannuation, and my Total and Permanent Disability Insurance.

That meant ceasing all work.  I knew the money situation would get even tighter, and life would get even harder. But if I won, it would be worth it. IF….

These cases are notoriously hard to win.  And they drag out for months.  Years.  Mine was supposed to take 6 months. It took 18 months.

I totally underestimated how hard I would find it not working at all. How much of my identity is tied up in what I DO.  How much of who I AM it really is.  How ashamed I was of just doing ‘nothing’ and collecting a Disability Support Pension.

All of those feelings were the main contributer to my depressive episodes.  I knew it. But I couldn’t do anything about it.   I couldn’t do anything to change the causes.

But I am the kind of person that needs a goal.  It doesn’t really matter if the goal evolves over time, or I don’t get there, I need to be working towards something to be happy.  So to combat those feelings of worthlessness, I kept busy. I took courses.  I planned.  I thought about what I would do if I could work. If there were no RA.  If there were no limits.  What had I always wanted to do.

I went through several options.  I have always been interested in so many things. I am rarely bored.  I enjoyed programming and web development.  I wanted to go back to that.  But my skills were so far out of date, it would mean starting over.  But it does lend itself to freelancing or working remotely.  But I wasn’t sure.  Coding is a stressful, deadline driven world.  Not so good for me.

I have always been passionate about nutrition and fitness.  So I studied a Cert IV in Fitness.  And qualified as a Personal Trainer.  Very ironic, given my physical condition.  But I hoped to help others with physical impediments to exercise, find ways to be more physically fit, to exercise within the constraints of their illness and maximise their health potential.

But my target market is pretty small.  And frankly, I am not well enough to work often enough to make a living that way.  But I loved the course, and it kept me interested. It kept me engaged. It kept me moving forwards.  It beat back the dreaded depression monster.

As my body deteriorated, and my fitness dreams faded into the background, I tried to replace that love with another passion.  But passion is not easily replaced.  You can’t just decide you are now going to be passionate about a topic.  The passion is there or it isn’t.  Much like true love.  If you lose your love, you can’t just find someone who looks a little bit similar and decide to love them instead. Though I have seen it tried on occasion…

So I had to find something to fill the hole. Something to get interested in.  A way to purge the energy that I was no longer physically able to banish at the gym.

So I thought about what I used to do when I was a girl.  I drew a lot.  Art.  Sketching. Horses mostly.  I went back to art.

I was never brilliant…but I have enough talent to work with. To improve. To jump off from.  But my hands started seizing up, more and more.  Drawing became painful.  Drawing started getting in the way of things that needed doing.  If I am able to use my hands for three hours a day, and I spend two drawing, that leaves one to feed and clothe my kids and keep my house liveable.

So art ended too.  Again, back to the search.  Something to fill the hole. That’s all it was about.

Get interested.  Be interesting.  Don’t become the cliche.  Don’t withdraw from life.  Even if this isn’t the life I chose, how many people can really say life turned out the way they planned?  The way they wanted it to?  Very few.  Maybe none…

This all might sound a little pointless to some.  But it was therapy.  Staying involved in life.  Not allowing myself to retreat, and become isolated, and ‘the sick girl’.

I AM the sick girl, but I don’t have to live and breathe that role. 

The sick girl is just part of me.  Arthritic Chick is part of me.  But I am Neen Monty.  Somewhere along the line I realised that.  The difference in those two statements.

My blog started out as a place for me to vent anonymously.  Because I was too gutless to tell anyone how cruel they were being to me.  I let them walk all over me and I didn’t fight back.  I was so lacking in self confidence that I let people bully me and use me and take advantage of me.  I would never show anyone my writing.  That lack of self-confidence was a black hole long before RA appeared, by the way.  But RA hasn’t helped.

But RA hasn’t changed who I am inside.  So, once again. Back to me as a little girl. Who was I then?

I was creative.  I was intelligent.  Usually top of the class, but so pathologically shy that I’m sure I would have been diagnosed with several mental health issues or maybe even autism if I were a child today.  I was practically mute.  I never volunteered anything in class. I was afraid to speak out.

I loved music. I played guitar. I sang. I wrote.

I wrote.

I learned guitar when I was 18. I taught myself to play.  Started a band with my best friend and we hit the road.  I met my (now ex) husband when he joined the band as a drummer.  And we had a blast!  We released a CD, got signed to an independent label, and were destined for the long way to the top as we rocked and rolled.   Except then the band fell apart.

My drummer was my husband by then and we had a couple of kids.  I wanted to travel, but I figured we’d travel the world together once the kids were grown up.  Travel a bit with them too, of course.  But I wanted to go to lots of places.  Europe, sure. Africa, definitely.  South America, Asia…I wanted to see everything, and I knew we would do it eventually.

When I was diagnosed with Mixed Connective Tissue Disease, and my rheumatologist explained that RA was the dominant part of that disease for me, one of the first things I mourned was the travel that I had been dreaming of for the last several years.  I wanted to rough it. I wanted to do a lot of it on foot. On bikes.  With the occasional five star hotel thrown in.

My idea of a holiday is an ACTIVE holiday.  I’m not a ‘lie on the beach with a book’ type. I never have been.  Doing NOTHING is the hardest thing in the world for me.  Doing NOTHING is where the depression came from.

So I’ve come full circle, and it’s only taken me about 1500 words.  But this was the process.  This is how I came to where I am now.  I know what I want to do. I have a plan.

I won my first case – the early release of my superannuation.  That was a great relief.  And then I got some freelance writing work.  And I decided THAT is what I want to do. I want to write. I have always wanted to write.  And its time I got the nerve to actually put myself on the line and pursue that!

And then I got more freelance work.  Still getting paid very little, but I started to realise that I could do this.  I could make a part time career from this.

And it’s the sort of work you can do from anywhere.  So I can travel, and keep writing.  I really only need my ipad and an internet connection.  Simple.

And the last piece?  I need an artistic endeavour. Music is out. Drawing or painting is out.

And then the complete picture came together.  I realised what I really want to do.

I want to write.  I want to travel.  And I want to photograph it all.

So I have enrolled in a Certificate IV in Photography.  I have deep concerns about whether I will make the attendance requirements.  But the course conveners tell me they will accommodate my disability.  They will make allowances.

I am a complete novice, but I had to create a portfolio to be accepted into the course.  They told me I showed promise.  That’s enough for me to know that I will push myself, hard, to complete this course.  And get the skills I need.

Ultimately to travel. And to document my travels with beautiful photography and words.

That is the dream.  That was always the dream.  Why did I lose it?

True, I won’t be doing it with my (ex) husband.  True, I won’t be physically able to do it on foot and on a bike to the extent that I dreamed of.  But I will do it.

True, I won’t be able to do it on my own.  I will need help now. I will need to travel WITH someone.  True, I will have to find someone who wants to share the dream.

Who?  I don’t know.  Finding the person that wants to share my adventure will be the biggest adventure of all.