Arthritis and Chronic Illness Patient Rosemary Ainley

My name is Rosemary and I am an Australian with rheumatoid arthritis, ankylosing spondylitis, fibromyalgia, type 2 diabetes, mild depression, and a range of other health issues. They didn’t all appear overnight; they came one by one just to remind me that my health is totally unpredictable.

My rheumatoid arthritis (RA) symptoms appeared first, toward the end of 2007. I had niggling pains in both hands and both feet that appeared after a year of sinus issues. I was lucky as my family doctor recognized the symptoms straight away. He had me on methotrexate, cortisone, and anti-inflammatories as soon as my blood tests confirmed the RA diagnosis.

My RA wasn’t content with the status quo. It went quickly from random pain to chronically swollen joints that made it painful to walk and grip things. It became clear that I was going to need more intensive treatment. I started seeing a rheumatologist and applied to join a clinical trial for a biologic drug.

That’s when I discovered the next big surprise my body had for me.

Did I Have the Big ‘C’?

As part of the screening for the clinical trial, I had a chest X-ray, which showed a lump in my lung about the size of a thumbnail. Instead of joining the trial, I spent the next few weeks being tested for cancer. The only way to know for sure was to have lung surgery to extract the lump. Once they took it out, the doctors knew it wasn’t cancer, but it took a week of testing to work out what it actually was. It turned out to be a fungal disease called cryptococcosis (a different big “C,” I suppose) and there was a risk it might spread to my brain.

The fungus is found in things like garden mulch and bird droppings and often the air around us. For most people, it does no harm at all. But it was triggered into action when my immune system was compromised by the onset of RA and starting the treatments for it.

Thankfully, the surgery was a success and the only treatment was a daily antifungal tablet to stop it coming back. After several years, I got the all-clear and needed no further treatment.

Once I recovered from the surgery, I started leflunomide (Arava). That helped, but it still wasn’t enough to stop my arthritis activity and I was still in a lot of pain. By mid-2009 I was on my first biologic, rituximab.

I decided I needed to talk to others with rheumatoid arthritis and I was fortunate to find a local support group. I became good friends with one of the group’s co-leaders, a woman named Naomi Creek, and many other people. Joining the group turned out to be a life-changing decision.

The Most Difficult Year

Let’s fast forward to 2014. I’d been diagnosed with fibromyalgia in late 2013. Then I was diagnosed with type 2 diabetes and shingles on the same day in May. In July, I found out that I had large cataracts in both eyes and was rapidly losing my sight. I developed postherpetic neuralgia after the shingles and damaged a nerve in my arm.

My diabetes and cataracts were caused by the long-term use of 10 to 15 mg per day of cortisone. I never regretted taking cortisone, though, as it was often the only thing that kept me functional and able to walk. (I still take it, but at a lower dose.)

By August, I was such a mess that I wasn’t coping well at work and making lots of mistakes. That resulted in my contract not being renewed just before my first cataract surgery in September. I did consider looking for another job, but a very helpful employment support worker helped me see just how much of a mess I was in and suggested I apply for the Disability Support Pension (DSP), which is similar to Social Security disability in the U.S. I’d tried that once before and was denied, but this time there was no doubt that I ticked all the boxes so I began receiving a partial pension.

Taking Back Control

I’d started doing freelance content writing from home the previous year and I seized on this in 2015 to earn some extra income as my husband and I were struggling to make ends meet.

I was still helping to run and expand the arthritis support group (which I still do), when Naomi Creek was recruited to become the National Coordinator of CreakyJoints Australia. She asked me to help her get it off the ground. It was a no-brainer. I became the editor and the main writer for CreakyJoints Australia. I’ve since completed a Diploma of Business Administration online over several years. That was partly to prove to myself that I could still achieve things despite having these diseases (and partly to support the work I do with CreakyJoints Australia).

More Surprises and Diagnoses

I’d been attending regular yoga, strength training classes, a diabetes support group, and seeing a psychologist on and off — but just when I thought I had my conditions under control, my body threw some more at me.

I was diagnosed with ankylosing spondylitis (AS) in June 2017 after a year of worsening lower back pain. I’d presumed I’d damaged something, or that it was related to RA and amplified by fibromyalgia. Even my rheumatologist dismissed it at first, as it is unusual to have both RA and AS. But X-rays don’t lie. They showed AS in my sacroiliac joints.

I then had to make the difficult decision to stop a medication that I knew worked for my RA — abatacept (Orencia) — to start another — adalimumab (Humira) — which potentially would work for both but might not work for either. Thankfully, it worked for both in my case.

This year, I’ve added a bulging disc, sciatica, and mild osteoarthritis in the spine to my ever-growing list.

With each diagnosis, I find it harder to bounce back to whatever my version of “normal” is.

What Makes My Life Easier

While I’m home a lot during the week, my days are never the same. My pain and fatigue levels vary by the day and often by the hour. Here’s what gets me through:

A well-stocked nightstand

My husband gets up early, but I stay in bed longer if I can. I’m surrounded by the heat packs and hot water bottle I brought to bed the night before to ease whatever bits of me that were tight and sore.

I have painkillers and my antidepressant tablet ready next to my bed and I take them when my husband’s alarm goes off. Once they’ve kicked in, I start slow movements to get myself going and do some gentle yoga stretches in bed. It’s much better if I take things slowly instead of jumping out of bed and rushing. That just sets me up for more pain and fatigue.

Easy breakfast and slow start

I always eat a healthy, but simple breakfast followed by my breakfast cocktail of tablets. I then often sit on a balance cushion or on the floor to ease out my lower back pain while watching TV or using my laptop. Or I crash in my recliner chair on my not-so-good days. It takes a while to build up the strength to do much physically (including having a shower) but I get there. I take more medications throughout the day and add anti-inflammatory topical cream, extra pain tablets, and/or anti-inflammatory tablets as needed.

Comfortable tools and gadgets

I have lots of things around the house to make myself more comfortable, starting with my work area. I invested in a quality adjustable ergonomic chair with headrest and I use a rocking footrest. My laptop screen is at eye level at my desk. I also have a wireless mouse and keyboard on a keyboard tray below desk level. This helps me to maintain a good posture while sitting. I’ve built up a good collection of daily living aids over the years. These include:

  • Wrist supports
  • Pen grips
  • An adjustable sacroiliac support belt
  • A shower stool
  • Sports shoes with custom orthotics
  • A TENS machine
  • Plenty of breaks

My mind is usually clearer in the afternoons and evenings, so that’s when I do most of my writing. I spread my work over seven days and make time for rest, family, and friends. Rest breaks are also a very important part of my day.

Cozy heat

If I’m home alone, I try not to use the central heating all day in the colder months, so I use a heat pack and blanket at my desk to keep my muscles warm. I also have a fabulous heated jacket that uses a rechargeable battery and keeps me very cozy.

Staying cool

In the summer I have a small desktop fan plus a portable evaporative cooler as we don’t have air conditioning in my work area. That is especially important as I struggle in hot weather due to my fibromyalgia.

Exercises

With all forms of arthritis, it’s important to “move it or lose it.” This is key for my ankylosing spondylitis, as appropriate exercise has been shown to improve mobility and slow down joint degeneration. I love my weekly hatha yoga classes. I adapt the postures to suit my limitations and sometimes use a chair or props. My instructor knows about my conditions and she helps me choose the postures that benefit me. I often do a few yoga stretches at home to ease stiffness and pain from sitting at the computer for too long. Depending on the day and how I feel, I may also use one or more of the following to keep me going:

  • Exercise bike
  • Gym ball
  • Resistance bands
  • My backyard steps
  • Mindfulness breathing exercises

I might only do these exercises for a few minutes at a time, but every bit helps.

Simplifying housework

I’m conscious of how I hold things to ease pressure on my joints. I use larger joints and core strength to lift things. I use a sharp knife and kitchen gadgets for arthritis (jar openers). I keep cooking simple but full of vegetables and sometimes buy them pre-cut if I need to. If I am having a rough or busy week, I’ll also get my groceries home delivered. I have a good old Aussie Hills Hoist clothesline in my back yard, but I don’t use it. That involves carrying my laundry down the back stairs then doing a lot of bending and reaching. I find it easier to use a portable indoor clothesline that sits near my washing machine. I save vacuuming for my good days and even then, I could go weeks without doing it. I’m ok with that. I use a long-handled dustpan and brush and a simple carpet sweeper for quick cleanups. As for ironing, I only do that if I absolutely have to.

My Final Pearls of Wisdom (for now)

  • Don’t sweat the small stuff
  • Only do up to 80 percent of what you think you are capable of and then stop
  • Dress for comfort as much as possible

These are some of the things that work for me. You can pick out some ideas and try them out, but do what works for you. Listen to your body. It might be in chaos, but it still sends you plenty of signals. Learn to interpret what they mean for you.

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