The truth about living with Rheumatoid Arthritis

#disability

Week two of school and why can’t the bus run on time!

It’s the second week of school, and the bus has been at least 20 minutes late every morning, save two.  Today the bus just didn’t come at all!

Very annoying for most people.

Huge problem for me.

I’m not mobile at 8am.  I’m not mobile at 8:30am.  Each morning I wake up around 7am when my kids do, take my meds, and wait.  I am in a lot of pain, its normal for me to have a fever.  Over the course of the next two to three hours, the medications kick in (prednisone, oxycodone, Panadol/Tylenol) and I start to move.  I walk up and down the hallway, I make coffee, I stretch out my joints, bend and move my joints through their range of motion.  I try to eat something light, lately I’m still eating risotto for breakfast.  That’s my routine to get moving in the morning, and it takes time.

I’m not ready to move, or able to move well at 8:30am, but this morning I had to drive my son to school.  Because the stupid bus didn’t come.

The drive isn’t far, it’s maybe 5km to the school from my house.  But near the school its congested, I have to concentrate hard so as not to knock down some school kid, or idiot teacher riding their bike up the middle of the road. Not to mention the stupid woman who just opens her driver side door into oncoming traffic.

Hugely stressful.

But I made it safely. I got my son to school, and even before the bell.  And now I’m feeling incredibly nauseous, weak and shaky, dizzy and of course in pain, and I need to lie down and recover.  I feel like I can’t keep my eyes open.  Exhausted.

So much for my morning plans.  Because the stupid bus didn’t come!

As I said, very annoying for most people.  Completely turned my day upside down for me.  There have been times in the past where my son just hasn’t gone to school. I physically couldn’t drive him there.

Today I got him there, but it’s taken a toll. So now, I need to rest.  And the other things I had planned are just not going to happen.  Once again bringing home hard a reminder of the very fine balance I live on, dancing along the edge.  And how such a simple thing can totally derail my day.  So now I will sleep.

And later, the bus company will be getting a strongly worded phone call about their bus service!

Rheumatoid Arthritis and work – why I can’t just ‘get a job’

Work is an integral part of life.  It gives us something productive to do.  It gives us satisfaction.  It gives us social interaction.  And of course, it gives us money so that we can live.

If you don’t have a job, you miss out on all of these things.  And money is not the least of them.  People who don’t work need other social networks.  People who are chronically ill struggle to find people who understand.  People who are chronically ill easily become isolated.  The fact that many are unable to perform a traditional ‘job’ compounds that problem.

So why can’t I just ‘get a job’?

I look pretty healthy.  I got to the gym a lot.  I look fit.  I’m not particularly overweight.  I don’t limp or wince or show any outward signs of pain (mostly).  I don’t spend all day every day talking about pain either.

That doesn’t mean the pain is not there.

The reasons I can’t get a ‘normal’ job are many and varied, and they have nothing to do with laziness, or a lack of skill.  I have 15 years of experience in web development, web design, graphic design, copy writing, online marketing….a decent skill set.  I have performed technical roles and management roles.  It just so happens in my industry, part time work is very hard to come by. (I suspect in many professional fields part time work is difficult to find.)

Having managed teams in my previous life with part time employees, I understand why people want full time staff.  It’s easier to manage.  People are always there.  Meetings are easier to schedule.  Team members are always available.

However in this day and age of internet communications, smart phones and skype, I believe all these reasons should be less compelling.  Certainly my skills are perfect for telecommuting and part time work.  All I really need is a progressive employer who is prepared to give me a shot.

I had this arrangement up until a few weeks ago.  My wonderful employer  put her money where her mouth is, and hired an Arthritic Chick who is legally disabled.  She employed me for 15 hours per week, working entiredly from home.  That suited her, and it suited me.  I can’t work much more than that.  She didn’t need me for more hours than that.  The much lauded win-win.

The contract has come to its natural conclusion.  I wasn’t sacked.  I didn’t do bad work.  My employer just no longer needs me.  She is very supportive and will give me excellent referrals.  There may be more work for me in the future, if so I’ll gladly take it.

But for the immediate future I need to look for more work.  So far, no dice.  People want full time.  If they want part time, they want at least 25 hours per week.  This is more than I can do.

Why?

First and foremost, depending on the day, I can do 1-2 hours on the keyboard before my hands seize up.  I’m not kidding – they seize up.  I can then use them club-like to tap on the keys, but it’s slow.  It hurts. I can push on beyond this point, but I wouldn’t call it terribly productive, and it’s hardly value to my employer.

When I am working from home, I can take a break.  Rest my hands. Dunk them in warm water.  Take a shower if the rest of my body is also aching.  Use heat packs.  I stop the clock and bill only for the hours I’m actually working.

If I were in an office, not only would I not have access to these forms of pain relief, I would just have to sit there doing nothing, resting my hands, until I could work again.  That’s pretty stupid.  And no employer will tolerate an employee just sitting there, doing nothing.  It just doesn’t look good.  It inspires other people to just sit there and do nothing.  Productivity goes down all over the shop.  Most importantly I don’t feel good about it.  Remembering that part of the reason for working is to improve your self-esteem.  Doing a job badly isn’t going to cut it.

Some days I am so sore that I’m really only comfortable in soft clothing.  I know, that sounds ridiculous.  But my t-shirt and track pants are quite suitable for me to sit at home and write code.  As are my PJs.  They wouldn’t work so much in an office environment, however.  Especially the ones with Little Miss Sunshine on them…

So there are many days where I can work at home.  But not in an office.

Then there are the days I can’t work at all.  They come around regularly.  I don’t know when they will come around though.  It’s impossible to predict.  Most mornings lately I wake up with very inflamed eyes.  I can’t see properly.  I need to put drops in them to moisturise and lubricate them.  I need to do this, or I risk my sight.  At some point in the morning, it improves and normal vision returns.

Some days normal vision doesn’t return.  I need to spend the day in a darkened room, because the light hurts too much.  Some days I need to spend half and hour to an hour just sitting with my eyes closed.  To rest them. To ease the pain and grittiness.  Just like with my hands, I just have to sit and wait until my eyes will work properly again.  There is no rushing it.  It’s just the way it is.

Again, in an office environment, sitting there with my eyes closed is not really going to work.  If I can take a nap on work time, EVERYONE will want to take a nap on work time, right?  At home, I just stop the billing clock, and continue work when I physically can.

People who know me, know that I am skilled.  They know I am ethical, and trustworthy.  I do not overcharge, nor charge for hours when I am actually eating ice cream or watching television.  I am excellent value.  In an office I would probably spend two hours a day wasting time chatting to other people.  At home every hour I bill is productive time.  And I show measurable results.

All I need is an employer who is prepared to take a chance.  An employer who is prepared to trust.  But there isn’t a great deal of incentive for the employer.  There are so many other people who can do the job who are not chronically ill.  My skillset is good, but it’s not exceptional.

Personally I feel there should be more programs to help people with disabilities into work.  The current ones (that I’ve tried) still try to squeeze you into the mould of a healthy person.  This is never going to work.  I am not a healthy person.  I have different needs.

What I need is a program that makes me more attractive to an employer.  Instead of paying me a disability pension or similar, why not pay it to my employer?  As a guarantee against my work? That would make me very cheap to hire, and therefore appealing.  It would give the employer  an incentive to give me a chance.   It would give me the chance to show my employer what I am capable of, and give me all the benefits of work.

A sense of satisfaction.  Independence.  Financial stability.  Social interaction.   Normalcy.