2 things I wish I’d been told when I was diagnosed with AS
Gaining knowledge and skills has helped me manage this disease
The 2000 film “Charlie’s Angels” has a scene in which actress Cameron Diaz enthusiastically jumps out of bed and proceeds to start dancing, wiggling her bottom, and leaping around the room with an enormous grin.
Diaz’s energetic morning moves are the opposite of how I got out of bed around the time I was diagnosed with ankylosing spondylitis (AS). I’d have been awake since 2 a.m., thanks to the fire burning in my back and shoulders. I’d slowly prop myself up, bloodshot eyes gummed together with lack of sleep.
Trying not to bend or move my stiff-as-a-board back, I’d swivel my legs out of bed and hobble from the bedroom like the Tin Man from “The Wizard of Oz.” Grimacing in pain, I’d scoop my baby out of his cot and shuffle down the hallway to get my toddler up.
All I could think about was how much my back hurt, and most mornings I felt like crying at the thought of the daily activities ahead. Simple but necessary things like changing bedsheets or pushing two young kids in a double stroller were enough to make me want to collapse. Not that lying down would have helped, because sitting still and sleeping only made my pain worse.
When I finally secured my first appointment with a rheumatologist at the hospital, I was told that ankylosing spondylitis is a degenerative disease and I’d get worse throughout my life. The thought that the pain and stiffness I was experiencing was the better end of the spectrum sent me into a downward spiral, leaving me terrified at the thought of looking after a family while grappling with AS.
Looking back at how hopeless and confused I was after my diagnosis, there are two things I wish I’d known about life with ankylosing spondylitis.
1. I will be able to control my pain
When I experience an AS flare these days, it’s debilitating and painful, but it’s not scary. In the beginning, I didn’t have any resources, medication, or knowledge that could help ease the pain. The feeling of having no control was quite frightening.
Imagine falling into deep water and not knowing how to swim, struggling to keep your head above the surface, and flailing your arms and legs in terror. Now imagine you’ve fallen into deep water, but you have a life jacket on and are skilled at floating and swimming. Difficulties are easier to cope with when you’re armed with skills and the right tools.
If my sacroiliac joints are becoming painful, my ribs are hurting, or my thoracic spine feels like it’s on fire, I have a list of things I’ve tested and that I know work for me. This list may not be the same for everyone with AS, but it helps to try different therapies and record what works in your case. Consult your doctor before starting or stopping any medications or other treatments.
My tools for managing painful AS symptoms include:
- Hot water therapy (spa, bath, or hot shower)
- Hot or cold packs for instant relief
- Nonsteroidal anti-inflammatory drugs like meloxicam
- A 20-minute back-stretching routine
- Swimming
- Canceling activities that cause stress (if possible)
- Watching a comedy to take my mind off the pain
- Following the no-starch diet for AS and eliminating any possible trigger foods.
2. It’s possible to have AS and be happy
At the beginning of my AS journey, I didn’t believe I could be truly happy again. I felt disheartened and unbelievably exhausted. At the time of my diagnosis, I was canceling all plans with friends, not coping with my crushing anxiety, and thought even small physical tasks seemed impossible.
I can now truly, hand-on-heart tell you that I feel incredibly content and excited for the future again, though it took several years to reach this stage. I’ve had to make some life changes to have time for activities I enjoy and give myself the breathing space I need to look after myself properly.
Following are a few changes I’ve made that have contributed to my happiness:
- Changing my career to a work-from-home job as a writer and artist
- Avoiding putting pressure on myself to set huge life goals
- Walking in nature daily
- Prioritizing sleep and seeing a doctor for help with my insomnia
- Finding a new passion (painting).
If you’re newly diagnosed with AS or waiting to see a rheumatologist for help managing your disease, I see you. It’s an emotionally and physically challenging time. Please know that AS is something you will learn about and gain the tools and skills to manage. Your future might look different from the one you imagined, but it can still be wonderful.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
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