October 16, 2012

In the Middle

Posted in Journey tagged , , at 6:53 pm by Reva

I decided to break up the story of how I was diagnosed with ME/CFS as I feel like it went on forever and I thought that if I felt like that then it’s probably worse for everyone else.  But I will continue it a little today.

After I went home from the GP that day I went about my daily business.  The fatigue and overall weakness was still there but like all the other times I found other reasons for it.

About 6 months later I spent a weekend trying to write an assignment.   I actually spent the weekend sitting in front of the computer staring blankly at the screen because my fingers and my brain weren’t communicating.  I couldn’t make sense of the paragraph explaining the topic of the essay, and how I could answer it.  Remembering what the GP had said the previous time I was there I made another appointment for the Monday.  This time I got a different doctor and the conversation went a little like this:

GP: what can I do for you today?

Me: I’ve been really tired and can’t concentrate. I had some tests about 6 months ago.  My iron levels were borderline.  Do you think I need this looked into? The GP said I should come back if was still unwell after 6 months.

GP: Oh, you’re a uni student.  So did you have a big weekend?

Me: No, I was too tired to do anything.  I spent the weekend moving between the bed to nap and the computer to write an assignment.

GP: I ask all uni students that on a Monday.

GP: (looking me up and down) You know, if you did a little exercise you’d probably feel a little better.

Me: I thought that too.  I’ve tried to pick up my exercise.  I tried the gym but it made me feel worse.  I go for long walks with my housemate – we went for 45 minutes 3 times last week, up and down some hills.  But it keeps getting worse.

GP: The bloods were fine 6 months ago.  Do you just want a Doctors Certificate?

Me: No thank you.

GP: Well keep working at the exercise.  I’m sure you’ll feel better soon.

And that was it.  He sent me on my way.  I failed the assignment but I refused to take that certificate.  Can you understand why I gave up there?  It makes me mad just thinking about this guy.

Angry Bird Fist

When I got my diagnosis a few years later I wanted nothing more than to make a complaint about him because I’m convinced that if this consult went in a slightly different direction the next 2-3 years might have gone a little differently but lucky for him I didn’t get his name.  Or lucky for me because making a complaint probably wouldn’t have achieved much anyway.

I’m really not sure how I made it through the following year.  It was the placement year of my course.  I spent 6 weeks on a community placement in the city.  Lucky for me the office we worked for didn’t have a lot of space so they only wanted us in the city 3 days a week and asked us to do the assignment work from uni or home.  On the days we were required in there I had to be on a train at about 7.30am, and would get home about 6.30pm.  The rest of the time I only had to drive across a few suburbs.

My next placement was a 9 week clinical placement.  My travel was a little longer – I had to be on the train at 6.55am.  I had a 10 minute walk to the train station.  If I was lucky I’d be home by 6.30pm, but it was usually more like 7.  This progressed from 2-3 days a week for the first 7 weeks, then 5 days a week for the last 2.  Easy to explain my fatigue this time!!  The days we weren’t at placement we had cooking days at uni (4 hours on my feet), lectures and tutorials with group assignments.  Oh, and i had my part time job on the weekend.

I was lucky with my next placement.  It was 5 days a week but only 2 weeks and it was quite local. Mostly this was a big group assignment that involved working around a table to problem solve.

My final placement was in my home town.  Up until this point I could explain away my pain and fatigue with all the work, travel and stress of an intense workload at uni.  And unlike a lot of my classmates I wasn’t living with my parents so had to do all the things involved with managing a house too.  By this time I came to think that pain and aching and lack of concentration and all the other things I was feeling were all a normal part of being tired and that everyone felt it.

But this time was a little different.  This time my mum was watching me.  I had great intentions for this placement.  They were long days but I was only a 10 minute walk from my house.   After day 2 I wasn’t getting up in time to walk.  I drove the 2 minutes instead so I could get those extra 8 minutes in bed.  And when I got home I’d lie on the couch until tea was cooked (oh the luxury!) and then after tea I’d lie on the couch until bed time.  And then the cycle would start again.  For the first week or two I convinced my parents that it was normal, just my body getting used to a new routine.  But after that it was harder.  By the end I was even starting to doubt myself but the memory of the last time I’d brought it up with a doctor, a year ago by now, put me off doing anything.  And besides, it was time for job applications and exams.

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