A Little Bit About Me and My Sleeplessness

Hi, my name is Ali! Let me tell you a little bit about myself.

I am 24 years old, and I live in the south of Ireland in the countryside by the sea. I am in the final year of my degree in social care work. I plan to continue my studies and complete a master's.

I love animals. I have 3 pets: Liam the Cat, Maggie the Basset Hound, and Charlie, who's a mix of a German Shepard and a Huskey.

Diagnosed with ankylosing spondylitis

In June of 2020, I was diagnosed with ankylosing spondylitis. This was a scary time for me, but I was relieved to get an answer for my pain. Ankylosing spondylitis is an autoimmune disease. It is an inflammatory form of arthritis. In the past year, I have learned that it affects many people in many different ways.

I am constantly in pain, constantly stiff, and constantly tired. For me, ankylosing spondylitis has caused constant back pain. When it gets worse, it usually affects my tailbone, hip, and shoulders. I suffer from neck and shoulder pain. I have chronic muscle spasms on my upper back and neck. And, worst of all, I have chronic fatigue. I can get through my days in pain. But when the intense fatigue kicks in, it's impossible to get on with my day. I need to rest.

How can I sleep in so much pain?

Often, I don't.

But I try to ease my pains by stretching before bed, having hot baths, and using hot water bottles in bed. When my pain is at its worst, nighttime is the worst time. I feel so alone in the stillness of the night when I am in agonizing pain.

I always thought that because I have chronic fatigue, I would sleep well. I was wrong. I would have thought that this was impossible, but sometimes I'm too fatigued to sleep. With fatigue comes intense nausea and dizziness.

How can I sleep when I feel like I am about to vomit and the whole room is spinning? I can't. Even when I'm not dizzy or feeling nauseous, the fatigue can still be too intense to sleep.

The effects of a poor night's sleep

A good night's sleep is important for everyone. But, for me, if I don't get a good night's sleep, I am usually in more pain the next day. I've noticed when there are consistent nights where I don't sleep well or for very long, I end up in a flare.

A flare is when my pain and fatigue levels increase a lot more for a period of time. This time can be anything from a few days to a few weeks. The longest flare I've had since starting my treatment is 6 weeks.

I am treating my ankylosing spondylitis with a biologic drug called Cosentyx. This is an injection that I inject once every 2 weeks.

Before I became sick, sleep was never a problem for me

I would fall asleep early and sleep through the whole night. Often, I would be able to work after only 6 hours of sleep. That would not be the case now. I have temporarily given up work as I am in too much pain and too fatigued to work. This year I am focusing on myself. I want to do well in my last year in college.

My plan for the next year is to work on my mental and physical health, along with my sleep. Let's hope that I succeed in my plan.

I am looking forward to sharing my sleepless journey with you. I would love to hear some of your sleepless stories.