The truth about living with Rheumatoid Arthritis

#work

Rheumatoid Arthritis and work and being ‘unemployable’

The keyboard (#18/365)A few weeks ago my employment services officer declared me unemployable and closed my file. This didn’t help my current feelings of depression!  Her organisation exists entirely to place disabled people into suitable employment.  While I would have thought that I would be a relatively easy case to manage, with some advocacy and support from them, apparently not!

I know my current physical condition is not good.  I have 4-5 knockdown days a week.  My definition of a knockdown day is that I achieve nothing, except what my kids need.  I have been going to the gym once or twice a week, and often leave because I can’t continue the class.  My pain levels are high, so I take a lot of oxycodone.  Slow release and immediate release.  My doctor is not happy about how much I am taking, but, I don’t feel I have a choice. I can’t function without it.

Because I am drug affected (slow reaction times, reduced alertness) I don’t want to drive my car. This only adds to my isolation.   I really appreciate the few friends who come to visit me.

I am repeatedly told how great I look.

Emotionally I am dealing with bouts of depression.  Being declared unemployable did not help.  This morning I saw this link about why people with rheumatoid are often forced out of the workforce.

When RA makes work unworkable

It all makes perfect sense, but it’s not so simple.  It doesn’t mention the impact of not working.  Not just the financial aspects, but the isolation.  The lack of a ‘purpose’.  Even the lack of a topic of small talk.  The lack of a place to connect with others and make small talk!

I joke that I just want a job so that I can hate it, just like everyone else.  But really I just want to be normal.  There are days where you don’t want to go to work, sure.  But work contributes to your well being in so many ways.  I want to have a future.  I want to improve my financial situation.  I want to have a normal life.  I want to have work friends, and work functions.  I want to achieve something with my time.

One of my friends suggested I clean houses for a living.  I told him I can barely keep my own house clean. He responded that it’s not hard work.  And he has arthritis in his shoulder and he manages just fine.  Normally I would let that go, but this time I told him:

‘Imagine that pain in ALL of your joints. Then try to clean a house.’

He gave me the ‘eye roll’.  I don’t think we’ll have coffee anymore.  I don’t need that attitude.  As I said, I am dealing with some depression.  People either help or hurt. It is that black and white when you are depressed.  Right now I am putting some space into that friendship.

But I digress.

I am officially unemployable.  I am now at the stage where I need to apply for my Total and Permananent Disability Insurance.  I’m told this is a long, drawn out process.  I will have to prove my disability, which will be hard because I have no bone erosions visible on x-ray (or I didn’t a year ago) and my blood work is normal.

Nuclear bone scans and ultrasound do not count.  Cartilage damage caused by my RA does not count.  My rheumatologist refers to it as ‘secondary osteoarthritis’.  The constant inflammation of uncontrolled, active Rheumatoid arthritis accelerates cartilage damage.  So this is quite clearly damage from Rheumatoid Arthritis, as far as I’m concerned.  But all the insurance company sees is ‘osteoarthritis’ which is not good enough for them.  They need bone erosions to prove rheumatoid arthritis.

The process will take about a year.  I am not hopeful, but I don’t have a choice. And the year will pass anyway.

Rheumatoid Arthritis and planning for the best as well as the worst

I am doing something that most people would probably think is pretty silly.  I am studying a Cert IV in Fitness, which in Australia would qualify me to be a personal trainer.

I have always loved fitness, the gym, running, karate…all in various phases of my life. But I have always loved the physical challenge of hard exercise and the feeling of euphoria when I’ve finished.  I can’t truthfully say that I loved running…but I always loved the feeling when I was done.  That I had achieved something  worthwhile. That I was doing something positive for my health.  That I was getting stronger and fitter, even if I was still overweight.  (Hashimotos Thyroiditis (autoimmune thyroid disease) has always conspired to keep me ‘heavy’ for someone who exercised and ate the way I did.  No matter…not achieving a perfect body wasn’t the key driver).

I think that is why I am able to push myself to go to yoga and spin classes and lift (relatively light) weights on all but the worst days.  Because I have always loved this stuff.

About a year ago I was feeling a bit miserable and thinking ‘if I could have my life over, I wouldn’t have pursued the computer science career…I would have become a personal trainer.’

And then I have an epiphany.  Why not do the course now?  I definitely have time on my hands. It’s online.  It’s something I am passionate about.  It’s knowledge that will help me train myself, even though I am aware that I can’t currently work as a trainer.  It’s something I will enjoy.  It’s a way to fill the really hard days when my body won’t work.  And studying is a replacement for the job I can’t seem to find, or if I do find, can’t hold on to.  Intellectual stimulation.

It’s self-paced. It’s cheap. It’s no pressure. It’s just for fun.

So I signed up and got started.  Some of the course is bat-shit boring and tedious.  But other parts are fascinating and enjoyable.  There isn’t a lot of pressure, because it’s only a cert IV, not a degree or anything, and its self-paced.  Months have gone by, and I haven’t touched a thing.

But now I am getting close to finished.  And it occurs to me how positive this experience really has been.  And how, quite unconsciously, I am planning for a life when things GET BETTER.

Which is just as important as planning for a life of ever increasing pain and disability.  We all have to do that. We have to be realistic.  Things could get worse, and if our disease is severe, it will likely get worse.  But we don’t dwell on it.

But how many of you are planning for if life gets better?  If the next treatment or drug brings remission?

I have just realised, that unconsciously, that’s what I am doing.  I am planning for a life that I have always wanted.  And just because my body won’t do it now.  I might be capable of it in the future.

Maybe Humira will give me full function back.  Maybe it will allow me to work part time.  Maybe it will be the drug after that.

Yes, right now, I am mostly bed ridden.  The couch is my best friend.  Facebook is how I communicate with the world.  So it seems crazy to be pursuing this.  But I realise that after I have done my Cert IV I would like to go on and do the Diploma.  This will qualify me to work with people who have chronic conditions.  Like arthritis.  I could design programs for people like me, who don’t think they can get stronger or improve their pain.

A very smart trainer showed me many ways that I can exercise, strengthen my muscles and tendons and improve my cardiovascular health WITHOUT any impact on my joints.  He is mentoring me through the practical stages of my course.  He doesn’t laugh at me or tell me it’s ridiculous.  He thinks maybe the right advice coming from someone who’s been there could be a life changing thing.

And so do I.

I may never get there.  My body may not allow it.  But studying fills my days, gives me challenges that work used to provide, and gives me hope.

And studying helps me plan for the best, as well as the worst.

We all plan for the worst.  We have to.  But we have to plan for the best as well.  Whatever your dream is, go for it!

It really is the journey, not the destination that counts.

Rheumatoid Arthritis and work…I am NOT unemployable!

The keyboard (#18/365)I think it’s time I addressed a few of the other impacts of rheumatoid arthritis. I’ve written a little bit of an overview here.   I’ve written a little bit about why I can’t get a real job.  All of that still stands.  But I still am capable of working.  I just have some specific needs.  Part time hours, and those hours need to be flexible.

I know that’s a big ask, but it’s not impossible.  I am skilled.  I am trustworthy. And I have skills that are perfect for telecommuting.  I am a web developer and designer and I also do SEO work and online marketing.  Perfect.  All I need is an internet connection and I can work from anywhere.  In track pants with heat packs strapped to wherever they need to be strapped.  I should be one of the lucky ones that can still work, in spite of severe, long standing disease.

Wrong.

I have applied for several part time roles and casual jobs.  Questions arise, I always feel compelled to disclose my Rheumatoid Arthritis.  Legally, I don’t have to, because an employer is not allowed to discriminate on that basis.  However, what is the point in winning a job, only to be sacked down the line when RA rears its ugly head?  Pointless.

So no luck.

There are disability employment services here in Australia. Their sole purpose is to help people with disabilities get into paid employment, rather than rely on a  disability support pension.

I have been on their books for over a year.  A few months ago they found me a volunteer placement with the local council.  The plan was for me to work for a few weeks, for no pay, to demonstrate my skills, in the hope that they would then employ me on a permanent part time basic.  (You know, for money!)

The employer was keen, and very positive that if I passed the eight weeks successfully that there would be a role for me.  I had high hopes.

But you know what happened. Just what everyone told me would happen.  I did my eight weeks, and then I was given a lovely bunch of flowers, and a morning tea and that was the end of that.  I do however have a good reference.  But that’s all.

No job.

The whole experience was exhausting, and beyond depressing.  And tried my positive attitude to the core.

They were very good people, friendly and I did enjoy being back in the ‘real’ world.

But.

It was physically hard going in to the office some days.  It was hard being in a lot of pain, and knowing that no one there understood this simple fact.  It was hard listening to people complain that their weekend was ‘boring’ when I had spent mine confined to the couch due to pain and fatigue. It was hard listening to people complain about a headache, and then knock off and go home.  It was hard listening to people just talk about ‘real life’ in a way that has been entirely lost to me.  I don’t live in that world anymore. I don’t belong there anymore.

It was nice to visit.  But I was visiting. I was pretending.  I am not like these people anymore.  No matter how much I might wish it to be true.

Part of this is definitely my problem, and something I need to work on.  But it did bring home to me, that no matter how much you might not want Rheumatoid Arthritis to be your identity, when your disease is severe, there is no way to avoid that.  No way at all.

And ultimately, I left feeling disappointed, and used.  I will not work for free anymore.  Not for strangers.  The only free work I will do will be to raise awareness for Rheumatoid Arthritis.

I had an appointment with my consultant this week.  My old consultant has retired, and quite frankly she didn’t do much for me.  So I was very keen to meet my new one.  And see what she might be able to do for me.

She opened my file.

She asked “Why are you here?”

I said I wished to find paid employment, wasn’t that the point?

She told me that I didn’t need to. I was on disability so there is no requirement for me to job seek.  I explained again that I would like to find some paid work. To improve my financial circumstances.  To develop some self esteem.  To make social connections and feel more ‘normal’.

She shrugged.  “We don’t get many people here on a voluntary basis.”

Then she told me she felt I was unemployable and that I should start my own business.  I explained I didn’t have the financial resources to do that…starting a business takes money.

She couldn’t care less.  She stamped my file that I had attended my meeting and told me to come back in a fortnight.  So that she can tick me off again as having attended.  She considers that her job done.

There will be no help there.  Unbelievable attitude.

So I guess I’ll have to start my own business.  I won’t give up. I won’t settle. I won’t accept that sitting on my couch is all I am capable of.

I am more than my disease.

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.