October 21, 2012

Not Quite the Light At the End of the Tunnel

Posted in Journey tagged , , , , , , at 2:33 pm by Reva

For the next few months it was easy to make excuses for my fatigue.  I was doing exams.  I was moving.  I was starting a new job in a new town.  I was increasing my working days from three days to four, then four days to five.  I was stressed when that job finished and I didn’t have a new one to go to (and that I didn’t have a car for job hunting because my car was burnt by some little angels in the town I was living in a week before I left – but that’s a whole other story).  I was moving interstate.  I was starting (another) new job.  I was house hunting.  I was moving house.  But eventually it was getting harder to ignore.

I have to admit if it wasn’t for our department’s wonderful receptionist I’d probably be no closer to a diagnosis to where I was then.  I’d still be pushing myself to work full time and be convinced that it was normal to feel as horrible as I did by then.  But with her gentle prodding I finally was convinced to go back to a GP about the problems I was having.  And to my surprise when I explained what was going on (I didn’t tell her quite how long it had been going on) she agreed that something wasn’t right.  She actually mentioned CFS.  But first she sent me off for another round of blood tests.  I spent a week actually hoping I had Coeliac Disease – I knew I could do something to manage that even if I could never eat decent bread, M&Ms or drink real beer again.  But when I went back and everything looked normal this GP actually referred me on to someone else!!   And when she was contemplating who the best physician to send me to in an isolated state she actually listened to me when I mentioned one of the doctors on her list didn’t like dietitians (“well we won’t send you to him then will we”).

The lovely physician sent me off for all sorts of tests.  My (least) favourite was a sleep test.  Being hooked up to wires with sticky gum stuff, with wires up your nose and being told “we get the best results if you can just fall asleep on your back” – sure, no problem! I can fall asleep on my back, with wires poking the inside of my nose!!  But apparently I slept enough to get the all clear (“it’s alright love, as long as you’ve had a 30 minute sleep at some point through the night we get enough information.  And I’m pretty sure you did.”). After 6 months of tests all we came up with was some allergy markers were a little high.  So at that point the physician told me I most probably had “a fatigue syndrome”.  He felt that I seemed a little depressed (wouldn’t you be?) and put me on some antidepressants.   He told me that there wasn’t a lot he could do for me but to pace myself and take some time off if I need it, and to get in touch if I was concerned about anything.  As frustrating as it sounds I really did like this doctor and at that time I felt relieved that I had a diagnosis.  True to his word, whenever I ran into him at work he’d pull me aside and ask how I was, and when I mentioned some strange toe numbness and dizziness he told me to call his private offices and arranged an MRI to rule out MS (and went through the MRI results explaining that the little white patches were normal “minor brain damage” related to age and I had “surprisingly little damage for someone (my) age”).  Luckily no MS.

In the end I just found myself a good GP (unfortunately the lovely one I met in the beginning retired) who told me that I probably knew more than he did about the condition but if I ever wanted him to read up on something or have further testing or try a treatment he was happy to help me out.  I stuck with him for the next 3 years and he even called me when I moved interstate to ask if I’d be interested in being involved in a research project being done at the local university.

But still I wasn’t satisfied…

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