Unflip by Jen Parker - Memoir Preview

By Jen Parker

I was supposed to be enjoying my first visit to Australia, having finished our three months travelling across south-east Asia, but the first week was filled with worry about appointments. First the GP appointment as soon as possible after we arrived to find out what strange tropical disease I thought I must have that was causing my painful, swollen fingers. Then the shock of being referred to rheumatology. The rheumatologist talked to me about my own health history, as well as my family history. He asked me about my psoriasis, how long I’d had it and to what extent. He checked me out all over, including getting me to do various stretches like trying to touch my toes, and examined my nails on my fingers and toes. He asked me if I’d noticed my nails were ridged and I had, but hadn’t thought anything of it. He then went on to explain that the swelling in my fingers and that toe that hadn’t healed since the break three months before, along with the psoriasis and ridged nails, led him to believe I had psoriatic arthritis. He explained in very simple terms that my immune system was overactive and, instead of attacking things it should, such as viruses, it was attacking the linings of my peripheral joints. It was also causing the psoriasis because the immune system was telling my brain there was a problem with my skin when there wasn’t, so new skin cells were being grown on top of existing skin cells, the layers were building up and then getting flaky, cracking and bleeding (when it was at its worst).

He also asked me about back pain. I explained about the issues I’d experienced when I had a waitressing job and then bar work, but explained that it was normal. Everyone experienced back pain, right? Well, that was wrong! He said that mechanical back pain gets better when you rest, but as my pain and stiffness was usually worse in the mornings when getting up from sleeping, it was indicative of ankylosing spondylitis, a disease similar to the psoriatic arthritis but affecting the spine and pelvis. My white blood cell count and inflammatory markers were sky high in my blood tests, so his first priority was getting the inflammation under control. He prescribed methotrexate for the psoriatic arthritis, an immunosuppressant in a group of drugs called disease-modifying anti-rheumatic drugs (DMARDs) used to treat psoriatic arthritis. He also prescribed anti-inflammatories and steroids to bring down the swelling because the methotrexate would take a while to become effective.

I left the rheumatologist’s office in a bit of a daze. I had just been diagnosed with two diseases called psoriatic arthritis and ankylosing spondylitis and told that there was no cure, I’d have it for life, and that they would just have to try and manage it. I was fit, healthy and active, would that come to an end? I wandered across the road to a nearby park and sat on a bench contemplating what my life might look like now with a life-changing diagnosis. I called my mum and had a cry about the diagnosis, whilst also trying to reassure her that I was fine, and she shouldn’t worry! I am very much my mother’s daughter sometimes, as she did the same with me whenever she had health challenges.

When we finished travelling, I saw it as a great sign that the police were recruiting, so I gathered my courage and hit “apply”. The first screen of the online application appeared with the first question:

Do you suffer from any of the following illnesses or conditions?

The first option was any heart-related illnesses. The second was any inflammatory arthritis. I had no choice but to tick that box and continue. The next screen made my heart fall through my stomach. It said that they were very sorry, but I could no longer apply to join the police because of my health. I was floored. I felt like, although I’d been through some tough times health-wise, it was well under control with my medication, and I was healthy, fit and active. It hadn’t even occurred to me that they wouldn’t even let me get past the first page of the application process. My dream career had come to a halt before it had even started, and I had no idea what I was going to do.

My mum had found an advert in the local paper for a publishing house looking for someone to work in the warehouse picking and packing book orders, as well as admin for the various departments. I was offered the job, and I immediately accepted. The issues with my health made working in the warehouse tricky some days, but I appreciated the opportunity to stay active, whilst having the admin to give me a break when I needed it. I was lucky to be given work from all the departments with a view to me choosing which department I’d like to progress through. I chose the production department because I fell in love with creating books. The editing, the design, the feeling of realising authors’ dreams, it all combined to make me fall in love with books in a new way.

During this time, I’d been waiting to be seen by a rheumatologist, which took five months. I’d been honest from the interview stage that I had a chronic illness, and for the most part I was doing okay at managing it. However, having only been given enough by the Australian rheumatologist to get me home, five months off the medication were beginning to take their toll and I was struggling. When I was eventually seen, although I was prescribed the same medication, I didn’t feel the benefits that I felt the first time. Several months in to injecting the Humira and I didn’t feel like it was doing anything at all. The rheumatologist said that unfortunately they’d been finding other patients experiencing the same thing, after a significant break from it they were finding it was less effective when restarted. I was gutted. It had been my wonder drug. It had been so successful with me that I’d stopped worrying about having a chronic illness, and hadn’t thought about the long-term because I could almost pretend I didn’t have it. At that moment, I started to worry that I would never feel “normal” again.

I also had an additional diagnosis of fibromyalgia. The worst symptoms for me were pain when I was knocked on the backs of my arms, my thighs and my chest. When I would get knocked on these main pressure points, it would feel like an explosion under my skin, building to a crescendo before fading away. It also affected my sleep, so for a while when it was really out of control, I was prescribed amitriptyline, which did help. When I first start this drug it can make me feel like I have a hangover the day after for a number of days, but I soon get used to it. Unfortunately, my body seems to get used to the drug quite quickly too, and it stops working after a while.

While the new medication combination worked okay, I still had to have anti-inflammatory medication prescribed over the top to keep more in control of my arthritis. I worked in an open-plan office (when I was promoted into the production department and out of the warehouse, my little bubble of half the day to myself was removed) and I was off sick more than anyone else in the company. If someone had a cold, I was pretty much guaranteed to catch it, but with the cold I’d most often get a throat infection on top, I’d lose my voice, and would be hit harder by a seemingly “normal” bug than anyone else. It would take me longer to recover but would also cause my inflammation to increase (if the immune system is fighting something off, it usually increases the levels of white blood cells and proteins that with my disease cause my joints to swell more), so I would also be in more pain and have more fatigue.

Despite this, I was good at my job, and really passionate about it, so I progressed through the company until I was the “Group Head of Production”, looking after the teams producing the books across all the imprints within the company, including a traditional imprint, a partnership publishing imprint and a huge self-publishing imprint. I absolutely loved it. I got to work directly with authors, on all genres of books, and had amazing teams to look after as the company had grown. However, my health caused a lot of issues. The job was intense and brought a lot of stress with it. Stress and chronic conditions do not mix well, and boy do I know that now! It became a vicious circle of picking up all the bugs going, stressing about being off sick knowing I’d have work to catch up on and knowing my colleagues would be having to pick up the slack in my absence, getting back to the office and working hard to catch up whilst worrying about catching another bug, feeling stressed, and then picking something else up. I felt like a bit of a mess, the stress was taking its toll, and my arthritis felt out of control.

I decided to change my priorities. I didn’t want to live to work, I wanted a better work-life balance, and I wanted to start a family with Aaron after we got married in 2015. We’d been through a lot with my health, but also in our personal lives. We’d lost my father-in-law to complications from his type one diabetes, and my mum was diagnosed with cancer for the second time just before our wedding. Whilst she was positive she would beat it for the second time, it was very scary to be having to go through all of that worry all over again. Something needed to change.