Progress update – living with AS

When I first found out I had Ankylosing Spondylitis, I had a mixture of reactions. Fear, resignation, and a bit of weird excitement about what this knowledge would mean for my treatment and recovery.

As many of you will know, it’s been a long journey for me. I first started feeling sick and sore in July 2012. I put off going to the Doctor, and when I finally did, they didn’t know what was wrong with me. When they did find out, my body reacted terribly to the antibiotics and I ended up in a hospital bed, feeling shellshocked. I think a lot of things contributed to that – my genes, the bug I got, the drugs – and my workaholic lifestyle. I was answering media calls the day after being admitted. I just couldn’t stop myself.

So much of my identity was tied up in that work. It was a slow descent into depression over the next few months as one by one I gave up my clients. I struggled to get well and made no progress. Again, the doctors couldn’t tell me why, other than my immune system was continuing to attack me.

It’s a very hard space to be in, that grey area between something being severely wrong, and no one really knowing what’s going on. Unable to work, unable to see a future for myself, I sank into a very dark place.

I’m extremely grateful to the people who supported me during that time, and who continue to do so. It is not easy to be sick – but it is also not easy to be there for a sick person. Especially someone with depression, and especially someone who has an illness that is never going to away. Everyone has a compassion quota. It may be ugly, but it’s true and necessary because we have to look after ourselves. I’ve been learning to do that too.

So after months of darkness, floating in the unknown, it was a relief, yes, to have a label for my pain. To have a treatment plan. To suddenly have access to the right drugs, the right doctors, things like hydrotherapy and a Green Prescription and Arthritis New Zealand.

Sometimes the Doctor does say that they could be wrong, again. That I definitely have chronic fatigue and fibromyalgia, but the severe spinal pain could be something else. I 90% fit the AS picture, but they’re covering their butts I guess. In 12 weeks I am having an MRI. If the MRI shows significant inflammation in my spine and pelvis, that’ll pretty much prove it, and I’ll have access to much better drugs than I am on now. Maybe it’s weird of me to be hoping that it does. To be hoping to for an illness I am going to have to battle my entire life. But if it doesn’t, what then do I have? Unidentified pain, caused by… nothing. No treatment plan, no drugs. At the moment, the pain is constant. I am holding onto my last hope that those drugs will help me. There is only so much one body can take.

Unfortunately for me, AS is not that common in women. I was incredibly lucky to have two friends in Nelson who have the same diagnosis, and I am able to call on them for guidance.

I’ve been researching putting together a support group for young people with arthritis here. There’s one for kids and for the elderly but nothing for us inbetweeners.

I asked my pyhsio, who has a son with juvenile arthritis, if she knew of anyone else my age with AS. No, she told me. You’re the only one. “Well, I always knew I was unique!” I quipped, but in my mind I was like oh maaaaan, the only one?!

I know there’s a few on you here online who have it too, and that’s great to have that support. But I’m really keen to meet anyone my own age who has it in Nelson, or even Wellington, since I visit often, especially women. It’d be great to be able to compare experiences and discuss all the concerns and worries I have. There are many. It’s a lonely little world being sick sometimes.

Anyway, I don’t mean to get depressing. Most of the time, I cope fine. I am positive. I said to my rheumatologist that I want to go back to work next year, and he sees no reason that can’t happen. I’m planning to go back part time in February. So, if anyone needs a writer.. 🙂

And look at me now. Yesterday, I went to town, did loads of errands, treated myself to a soy hot chocolate, came home, cooked dinner, wrote two blog posts, and planned my column for next week. A few months ago that would have been unthinkable. It’s not much, but it’s getting there.

Thank you, again, to everyone who is sticking with me through this. I am so, so grateful. I can never say that enough.

2 Replies to “Progress update – living with AS”

  1. Amber

    I’m sorry I missed this when it was first published. It’s a privilege to know you & be a supporter & friend. Your courage & advocacy keeps me smiling.

  2. Penni

    Hi Sarah, I’m a NZ writer with CFS and Aspergers Syndrome, also a long-time feminist, i have a blog and have also just started writing a column for my local paper on disability issues.
    I note with interest you say that not many women have Ankylosing Spondilitis, my auntie, who died just last year at 85, had it, as does my uncle (auntie’s brother). Arthritis in general runs in my family (i have a touch of it, in my knees). My auntie was told years ago she’d be in a wheelchair by the time she was forty, at 85 she was still getting round on foot, tho hunched over somewhat (she had other health problems as well). She managed during the intervening years to finish raising her kids, be a busy farmer’s wife, and then look after my uncle who got Parkinsons just after they retired. So she had a pretty good life, was much loved by her immediate and extended family. Life does go on, even with a major health issue! 🙂


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