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What’s It Like To Be is a fortnightly column where New Zealanders from all walks of life share first-hand experiences. Here, Linda Te Au talks to Paulette Crowley about going from running marathons to being diagnosed with lupus – and how she was determined to run again.
I woke up one morning with pain in my shoulder and in the backs of my hands. This was back in 2013 and I was getting ready to go to Australia; my second grandson was due to be born and I was to look after the first one while my daughter went into hospital.
At first, I didn’t think much of the pain – I thought it might be just a crick in my neck – but it didn’t go away. It got worse and I couldn’t sleep or lie on my back. A few days after that, I had a pain in my knee. I found it hard to get out of bed and I couldn’t walk very far. That’s when I thought, “This must be arthritis.” When I got back from Australia, I saw my doctor. She ran tests and called me that evening to tell me that I had an autoimmune condition that was of a rheumatoid nature.
It took a while to figure out what sort of arthritis it was, but they said it was classified as a “sudden and severe onset” type. After six weeks, I saw a specialist who diagnosed me with rheumatoid arthritis but it took time to confirm the main condition was lupus systemic erythematosus.
Lupus is when your immune system mistakenly attacks healthy tissue and it can affect your organs, skin and joints. It also goes along with a whole lot of other autoimmune conditions; you never seem to get one, you always seem to get a few.
I found out I also have Sjögren’s syndrome, which dries out your eyes and mouth, and Raynaud’s disease, where your fingers and toes can go very cold and you have no sensation in them.
Most people don’t realise that, along with pain in the joints, rheumatoid arthritis causes fatigue. Sjögren’s also causes muscle fatigue. I would have to sit on the end of the bed and wait till I had enough energy to walk down to the lounge. And then I’d have to sit down once there and wait till I got another burst of energy to make my breakfast.
The pain of moving makes you tired, too. You just want to find a comfortable position and not move.
I also had inflammation around my organs from the lupus. I couldn’t yawn without feeling a tightness around my chest. It was like a big iron band.
I still managed to work as a librarian at the time. I was lucky in that I could start my day a bit later and finish a bit earlier. I just made it work.
All of this was a huge change for me because up until this point, I’d been running marathons.
When I was first diagnosed, I did a lot of reading about lupus, being a librarian. I thought, “I’ve got this.” I knew it was a chronic illness that had to be managed but it wasn’t like having a cancer diagnosis where you might die.
This was just something I was going to have to live with. I have a strong Christian faith, so I did a lot of praying and I have a lot of support from family and friends. I have to have a realistic attitude – I just need to get on with it, because this is the way it is.
I missed my running but told myself, “If you can’t run, maybe you can walk. And if you can’t walk, you can still volunteer at the harrier club. You just need to readjust your focus.”
Still, I can’t say this was easy; I didn’t just sail through. There were moments where I wanted to cry, but even that’s pointless because there are no tears coming with Sjögren’s.
I remember one day feeling really, really bad and in such terrible pain with no energy. I texted my family saying, “Today is Feel Sorry for Linda Day, but only until 11 o’clock.” And my brother sent back a message saying, “Sorry, didn’t get your message till after 11 o’clock.”
It was moments like these that got me through.
My specialist was really switched on and trialled me on different medications. It was quite a process and took a few years to get the right one. Now my condition is stabilised and the flares aren’t so bad.
After a couple of years of treatment, I was able to run again and can also get out in the garden but I need to pace myself, which sometimes isn’t an easy thing to do. If I overdo it, I will need to rest. If I can’t run because of sore muscles, I will walk. I run/walk a lot of the half-marathons I do now. I am really lucky to have a very supportive athletics group.
A great medical team helps as well: I have a marvellous GP and a very switched-on specialist.
Having the right people around you is important. You need friends who can see past the invisibility of chronic illness. If you don’t feel like going out and doing something, and your friends look at you and think, “Well, get off the couch, what are you playing at?”, they’re the wrong friends, and you don’t want them in your life.
World Arthritis Day is on 12 October.
