Arthritis and Me: Part I

As I alluded to in a previous post I have been having therapy for some of the major issues that have cropped up in my life this year: relationship problems, destabilised mood, and biggest and ugliest of all the continuous experience of being dreadfully unwell with my new pal Arthritis.  In the future, I intend to share these therapy sessions with you but for now there’s something else we need to attend to.

I’ve not really made it clear in previous posts quite how unwell I’ve been, so now might be the time to paint you the perfect (or completely imperfect) picture of what life has been like for me this year. Putting the rapid cycling of my mood aside, let’s focus solely on the physical health problems I’ve had and their effect on my overall functioning.

In 2011 I occasionally experienced periods of intense fatigue, muscular pain and joint pain in parts of my spine. At the time I wasn’t aware it was joint pain, but I described it as “bone pain”. Anyway, these periods lasted for a week or so at a time, involved intense fatigue, lack of concentration and seemed like what I would call a physical depression – I felt like I was depressed, except my mood was perfectly normal. Given the fact I have bipolar disorder, I sort of assumed that this was what was going on, maybe these events were precursors or early warning signs of depression so I slept like a rock for those weeks, tried to keep up my activities and eventually the symptoms would disappear. But as the year went on these unusual periods of fatigue increased, and my ability to do exercise (particularly resistance training) with my upper body was impacted. I couldn’t lift weights (which I love to do by the way) because not only would I get weird nerve pain, but the muscles in my back would seize and I would be in intense pain and discomfort for quite some time. I didn’t know what was causing this, but eventually I blamed it on an incident I had while riding my horse. It turns out, that was just a total misattribution.

To cut to the point, after I finished the academic year of 2011, I felt okay, but my health was deteriorating. Sometimes I would be unable to do a three hour walk without becoming a member of the Walking Dead for a week or so after. But at other times a three hour walk was fine and there were no after effects. At Christmas time I moved back to my home town and although I felt fine psychologically, things continued to deteriorate.

At first, I noticed I had pain in my hands. I only noticed this because I was helping to paint my parents’ house.  Quickly I realised I couldn’t paint for more than a few minutes at a time as my hand would seize up. This pain eventually was accompanied by pain in my wrists, and a feeling like they were “on fire”. I saw my GP. My GP said there was no “objective evidence” that there was something wrong.

So I went on my merry way and tried to continue on as per usual. But things got worse. I was having fevers, stiffness, joint pain and overwhelming fatigue. My mother suggested my mood was responsible. My father suggested that I was hypersensitive to physical sensations or that I had an “ongoing flu”. (Yes he seriously suggested I had a cyclical flu that went on for months. Of all the suggestions, that was perhaps the most infuriating.) The Olympian aka my boyfriend, in case you didn’t know, jokingly/possibly quite seriously called me a hypochondriac.

I continued to battle. I said to myself, “if my fatigue is caused by my low mood then I need to keep up the activity despite it”. But it was a horrible. I tried getting up at 7am or 7.30am (which used to be fine) and I would be so tired all day that I barely managed to get through any work.

Eventually, I saw my psychiatrist. I saw her on a bad day, when I felt so fatigued I thought I might collapse in front of her and start speaking my final dying words. She took one look and me and said that there was obviously something wrong. She suggested I see an internal physician privately.

At this point, I was trying and failing to keep up my academic work as well as my two part-time jobs (both with low hours), care for a horse, do chores and live a normal life. It was a real-life nightmare with no end in sight. Everything was a struggle. Getting up in the morning, putting on clothes, washing, doing my hair, thinking, feeling, talking. For weeks at a time I would do nothing, incapacitated by the fatigue and feeling as though I was “getting sick”. It was sort of like just before you come down with a cold or flu, except it would last for weeks, vanish without the appearance of any cold or flu symptoms and then would return again. This is probably the basis of my fathers “recurring viral infection” theory.

This is an example of what a nuclear bone scan looks like. This is not my skeleton.

After a few weeks I saw the private  internal physician. He was kind, and he took a good look at me and showed concern. Something my GP had failed to do. He ordered a nuclear bone scan. If you haven’t had one, it goes like this. They inject you with radioactive material. This radioactive material is taken up by 1) your bladder because you pee it out and 2) parts of your body that are inflamed (or cancerous). This bone scan revealed a lot of inflammation throughout my axial skeleton. Basically, my sacroiliac joint, my lumbar spine, my throaic spine, where my ribs connect to the front of my chest, and my clavical. Five hundred dollars later, I had a diagnosis. Its name: Spondyloarthropathy, an auto-immune disease in the form of an inflammatory arthritis which characteristically affects the spine and can also affect joints of the arms and legs.

My father was shocked there was something wrong with me. He claims he believed me, but the sound he made (a loud gasp and “really?”) when I told him the results suggested to me that he actually thought that nothing would show up. I was shocked, because everyone had made out like there was nothing wrong with me and I’d started to believe it. The Olympian, well, he was shocked too. Because let’s face it, everybody thought I was making a huge fuss out of nothing. In actual fact, I had a significant level of inflammation in my body that required much more fuss than the pitiful one I had been making.

Coming soon: Arthritis Part II