Tell us about your symptoms and treatment experience. Take our survey here.

A girl sits, awake, with a blanket wrapped around her on her bed in the middle of the night.

Another Sleepless Night

Another night waking up in tears. In tears from not knowing what to do because of the continuous excruciating pain that I have been feeling again for a few nights. I am feeling extremely exhausted. I have no more energy in me. Crying feels like a task that's too painful. It sounds like I am screaming. I am feeling discouraged. Thinking how I have to wake up in the morning for work. I am thinking about how will I be able to work and be productive for the whole day that awaits me.

I am feeling so alone

Even though my husband is sleeping right by my side. He wakes up and tries to comfort me, while rubbing my back he falls back asleep. I try to pick up my body and sit next to the fan. I try to look for a way to get comfortable, as my whole chest and back is so stiff. My whole body feels like it is on fire, burning to touch.

I look at the time and it's 1am. I decide to take my pain medication. As I can hardly walk downstairs, I throw in the microwave my heating pad and try to walk around slowly, around the house. This sometimes helps with the stiffness and the pain that was created from not moving my body at night while sleeping. I head upstairs with my heating pad and try to lay down in bed. I try to fall back asleep, but have this fear of feeling worse again and not being able to handle it.

I know am not alone, but it does feel alone, if that makes sense

It can be very scary when the pains get so high. At times, not knowing what to do from this pain. At times asking yourself like will this go away? How long will this keep happening to me? How long will this last for? Why is this happening to me again? What did I do wrong? Why am I feeling this? How can someone be in pain like this every day? How can I continue to feel this way, every day? Is my treatment not working? Have I pushed my body too much?

Along the way, you get good days that come and you forget about the bad days. You try to make the best of those good days when they do come, because you never know when they will come back. On the bad days like tonight, it's hard to think positive. All you can think and feel is the pain. While everyone is silently asleep, I am wide awake and scared to fall back asleep. I try to distract my pains and what I am feeling by browsing on my phone. I watch some television on the iPad and before I know it, it's almost time to get up.

Featured Forum

View all responses caret icon

A whole day awaits me, that now feels impossible to accomplish

But I get up and push through. No matter what I am feeling, I put my brave face on and try my best with one task at a time. I start by getting the kids ready for school. Once they are off, I set myself up to start work with a large cup of coffee and keep having hope that I will be able to get through another day.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our In America Survey yet?