31 Jul, 2020

A Day in the Life: Living with Ankylosing Spondylitis

Patient advocate Steff Di Pardo shares her experience of living with AS.

My name is Steff Di Pardo and I live with a condition called Ankylosing Spondylitis (AS). For those who don’t know, AS is a form of inflammatory arthritis and autoimmune disease. I’ve lived with it for three and a half years now and will live with it for the rest of my life.

I developed Ankylosing Spondylitis when I was just 21 years old, but the majority of people living with AS can experience it anywhere between the ages of 15-30. Diagnosis can take an average of 8 years, but I was lucky enough to be diagnosed in one year, which felt like a lifetime.

Mornings with AS

Mornings with AS are the most difficult part of the day. Morning stiffness is a very common symptom. I wake up and it feels like my joints are all stuck together. I’ve often seen this compared to the Tin Man in The Wizard of Oz.

This only gets better with movement. My morning stiffness often lasts around 30 minutes after I get out of bed, which takes a good amount of time as well.

Not only do I wake up stiff, but I wake up in pain and I’m fatigued. No matter how much sleep I get, I feel like I’ve run a marathon. I wake up exhausted almost every single morning.

Pain management

Pain and Ankylosing Spondylitis go hand-in-hand. You can’t have one without the other. All-day long I am in pain. Whether it be lower back pain, shoulder pain, pelvic pain, knee pain, etc. You get the idea.

I wake up in pain and I go to sleep in pain, with pain throughout the day as well. Movement does help with the initial wakeup pain, but it never truly goes away. I try to do yoga on the days that I’m feeling well enough, because movement is medicine.

As much as we don’t want to move when we’re in pain, we need to. When I first had symptoms show up, I barely moved from my bed every day. As the weather got warmer I would go for daily walks with my Dad, and that’s when I noticed how much even a short daily walk helped my pain. I recommend moving as much as you can whenever you can, because it will help in the long run.

Fatigue is my worst enemy

I often say that the fatigue is worse than the pain. The pain I can handle, the pain I can push myself through if I really need to. Fatigue debilitates you. It can make me stay in bed for days and miss plans I’ve had for weeks.

When I said earlier that I can get a full night’s sleep and still wake up exhausted, I mean that. I wake up every morning and my body is heavy. It feels as if I didn’t even sleep a wink. The only partial solution I’ve found to fatigue is to listen to my body and rest when I need it. I often have to rest days in advance if I have plans later on in the week, just to make sure I can do the things I want to do.

Nights with AS

Not only are mornings hard, but nights are difficult to deal with too. Being in constant pain makes it very difficult to fall asleep. Painsomnia is a term that is thrown around a lot by the chronic illness community. It means being in so much pain that you can’t sleep, like insomnia but with pain being the culprit.

It often takes me hours in bed to fall asleep. When I’m flaring, it’s even worse. No position is comfortable, and lying in any which way for too long is unbearable. I don’t think I’ve gotten a restful night’s sleep in the last 3 and a half years, which then carries on into the next day making the fatigue even worse.

Living with AS isn’t easy

AS patients deal with a lot on a daily basis. This is just the tip of the iceberg! Our daily lives are affected the minute symptoms appear and they never go away. Ankylosing Spondylitis symptoms can take a lot away from us, but we learn to handle them and live with them every day.

Some tips and tricks

Living with AS for three years, I’ve learned a few things to help alleviate some symptoms. Here are two of my biggest tips:

Heat

Heat is my best friend, especially my heating pad, microwavable hot packs, and Epsom salt baths. When my pain flares, you never see me without one of these products. I use my heating pad in bed on my pain areas. I also have a hot pack that I can wear as a belt which is great for low back and hip pain! I would highly recommend trying one of these products to help with your AS pain during a flare.

Listen to your body

To help with fatigue, the only piece of advice I can give is to listen to your body. If it’s telling you to sit or lie down - do it. You’ll thank yourself later for listening to what your body is telling you to do.

You can keep up with Steff via her Instagram: @totallyfunkless
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