Starting a new challenge – photography with Rheumatoid Arthritis calling the shots

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It’s Saturday. I have been wanting to blog about my new challenge –  my photography course – all week.  But I haven’t been able to. Why?  Because my pain levels and fatigue levels have been too high.  I don’t have the energy. I don’t have the brain power.

So now I will try.

Firstly, I am in immense pain this morning. I have been awake most of the night.  I gave up and took oxycodone at 2am and finally slept a bit.  I also took two valium before bed, and that got me two hours before midnight.  The rest of the night I was awake and in considerable pain.

This is not an unusual experience for me. Usually it happens two nights per week, on average. This week it has been every night.  My pain levels have ramped up so that every day is a moderate to severe pain and fatigue day.  This has correlated with me starting my course.  My attendance hours are hard.  9am to 4pm mon, tues, wed.  More than I expected. More than I can manage to tell the truth.

Day one, Monday.  I had a three hour orientation session.  Three hours of sitting on a hard plastic chair and not being able to move around hit my body hard.  By the end of it I was almost in tears and could barely walk. Of course I DID walk and I showed no outward signs of pain – except that I was walking much slower than everybody else.

I remembered how fast I used to walk.  I forget how slow I am now, because I don’t spend that much time with ‘normal’ people.  Everyone dashed of down to the cafeteria, excited and chatting. I tried to keep up.  But I couldn’t. I really couldn’t.

One lady turned and noticed. She came back and walked slowly with me.  She and I are becoming friends.  It was a lovely thing for her to do.

Not that everyone else was ‘bad’.  They were just excited and involved and didn’t notice.  Perfectly reasonable. I wonder how often in my previous life I didn’t notice someone struggling?  In truth I’m glad more people didn’t notice.  I was on the edge of tears, and had I needed to explain at that time, I probably would have cried.  Not a good way to introduce yourself to people!

So I found a couch in the corridor and rested.  Took a pain killer and waited for it to kick in enough for me to drive myself home.

And, once home, I pretty much collapsed on the couch. Pain under control, but fatigue!  The concentration involved in one three hours session, the physical constrictions…my body was angry and not letting me do anything else.

And I questioned what the hell I was doing.  The course is a Certificate IV in Photography.  It is aimed at training me to become a professional photographer. It is the entry level course, but everyone there has significant experience.  I am a rank beginner.  I am playing catch-up from the very first day.

I will not be able to work as a photographer. So why am I doing this? Why am I putting my body through this? Why am I spending money I don’t have on a course that will get me nowhere?

Because it will NOT get me nowhere.

It will get me out of the house. It will give me skills that I can translate to my freelance writing.  Photography skills dovetail nicely with writing skills.  If I can provide excellent photos to support my articles, I have more chance of getting published (and paid).

I need the challenge. I need the social contact. I need to feel like a real person. I need to try to assimilate in the real world!

But while doing all of this I need to remember that I am not typical or average or normal. I have a disease. I have to NOT do what I always do, and push my body way too hard.  I think I need to put reminders on my phone.

Just the first day was far harder than I had bargained for. In terms of what it did to my body, and what it did to my cognitive abilities.  Not to mention my emotions.

Day 2 was a full day.  9am to 12pm.  One hour for lunch.  1pm to 4pm.  These were my first formal classes.  Image Capture – Studio,  and Image Capture – Location.  The practical courses on how to take good photographs in a studio environment and out on location.  They will be loads of fun.  The part where we pick up our cameras and really learn real world skills.  This was still an introductory session, the first thing we did was introduce ourselves to the class.

This was where I realised that everyone was an experienced photographer.

When my turn came, I told them that I just bought my first DSLR in December and haven’t taken it off ‘auto’.

The room went silent. The instructor politely questioned how I had managed to get into the course with no experience at all. I smiled and said I didn’t know.  He responded that my portfolio must have shown great promise.  Bless him!

I then decided that this was my best opportunity to tell everyone about my Rheumatoid Arthritis.

I said “I have Rheumatoid Arthritis.  You’ll notice I fidget a lot and move around.  This doesn’t mean I’m bored or not interested. I just need to stretch and move because my joints are painful and seize up if I stay still.  My hands are particularly weak, so it’s probably best that you don’t hand me your $5000 cameras to just hold for a  second. Oh and I do lose my balance sometimes, I’m not drunk. Sometimes my joints give out under me.  During lectures I may have to get up and walk around. I hope this is OK. ”

Most people laughed and it started a discussion about a few people’s health issues and experiences.  It was great, really.  The instructor was wonderful and told everyone to ‘do whatever you need, to be comfortable.’

And when we went to the break, a few people asked me for more information, in a respectful and caring way.

I realised with a bang that the people I used to associate with, who ridiculed me and treated me like an attention seeking malingerer were NOT the norm. They were, in fact, assholes, and I was right to remove them from my life.

These people were great.  The were interested and sympathetic.  And then we dropped it and the conversation moved on.  No big deal.  Just another fact about me, just as Sue had a still born baby, and Anita has a 4 year old daughter.

By the end of the day I was on a high, because I felt part of a group of really great people. Passionate, dedicated people, and I loved that the bulk of the conversation was obviously about photography. I have so much to learn! And I am desperate to learn it!

But most importantly, for the first time in a very long time, I felt *part* of something.  Part of a group, that has nothing to do with being ill.

The price was incredible pain and fatigue.  I needed to take an extra dose of pain killers.

The rest of the week went by in a blur.  I pushed myself to get to the gym.  I had to do some homework, but I didn’t do much. This weekend I need to learn how my camera works.  We have switched our cameras to ‘Manual’ and are NOT to switch them back to auto until we are taking great shots in Manual, and understand why.

I am reading endless articles about DSLRs and how they work, and tips and techniques.  And I am loving it.

But I am exhausted. And I still don’t really know much about how to use my camera. I took some test shots, and they are terrible. I know how to change these settings on my camera, but I don’t know which settings to choose, and when.  Everyone else does know this.  I need to read more.  I need to take more test shots.  I need to find some energy!

Every night this week I have been kept awake by pain.  Every day/night this week I have exceeded my daily pain killer allowance.  I need to make an appointment with my GP next week to discuss this with him.  How to manage my increased pain levels.  Every day is now a bad pain day.

I am cooking simple meals.  Sausage sandwiches.  If I am to manage this, I am going to have to get VERY organised. And more things are going to have to drop by the way side. What can I drop? I don’t know. My kids need to pitch in and grow up a little more. They are old enough.  It’s not too much to ask.

I don’t know if I am going to make it through this course.  It is a six month course.  One year if I go on to do the Diploma – which I would LOVE to do.

There is no way I will get through the course if I think about how long that really is. How hard that really is going to be.

So the only way for me to do it is NOT think about these things. I can only take every day, ONE day at a time.  Deal with TODAY. Not think about tomorrow. Certainly not think about the next six months.

One. Day. At. A. Time.

2 COMMENTS

  1. I admire you for giving this all you have I really do, because in all honesty I really don’t think I would be able to give this level of commitment to something, even something I really wanted to do, knowing how hard it would hit me. I had to give up a job, part time in a school as dinner lady, that I’d done and loved for 13 years because I just ‘could not’ carry on doing it any longer, the standing was killing my hips and I was spending pretty much all of my meager wages on taxis to get there and back, just the other side of a small town, because I loved it so much and didn’t want to let it go. I was either resting up so I could work, or resting up to recover from work and it left nothing for my family. If I were suddenly healthy again tomorrow I’d go back like a shot, I’ve been asked several times to just call them if I want to go back to work, I wish I could. So I know just how much this is taking from you in terms of fatigue and pain and just trying to be there for your kids & accomplish something for yourself. I wish you luck, lots of luck in getting to the end of the course and showing that RA that you can and will do it. I hope your GP will be helpful as far as controlling the higher pain levels goes and it sounds like the group and teacher are going to be wonderful in their level of understanding your needs while there.

  2. I agree, you are brave in your commitment to this new venture in your life! I can relate to the awkwardness of explaining to others why you can’t hold expensive cameras. I’ve had countless number of strangers ask me to take their pictures since so many tourists come to our city and I always have to get a co worker to do this. You can imagine the puzzled looks on their faces…Not to mention people making fun of my cheap cell phone. No smartphone for me!

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