Do you sometimes wake up in the morning feeling achy, stiff, and sore in your back and hips? Do you feel extremely tired in the morning, no matter how much sleep you get at night? If these symptoms are not just one or two, but have been bothering you for a long time, it is worth taking a little care of it. Today we are talking about someone who is living with such an experience and the disease that causes it, Ankylosing Spondylitis (AS).
What exactly is Ankylosing Spondylitis (AS)?
Simply put, this is also a type of arthritis. But this one mainly affects your spine and its associated joints . Due to some error in our body's immune system, it starts attacking our own joints, especially the joints between the vertebrae of the spine and the joints that connect the hip bone. This causes inflammation , which means swelling, redness, and severe pain.
Over time, this inflammation causes the joints to become stiff or fused together. The word "ankylosing" means "fused together." This is the main cause of morning stiffness and pain. This condition is more common in men and usually begins at a young age, between the ages of 20 and 40.
Now let's see what the experience of someone living with this condition is like. This story will help you understand this condition better.
Starting the day with AS is a challenge every day.
The person telling this story began to experience these symptoms in his mid-twenties. He first felt numbness, pain, and unbearable fatigue. It wasn't until about a year later that he was finally diagnosed.
I have a very fast, planning person in my mind, but my body won't let me. It's like a Type A personality trapped in a Type Z body.
He says that every morning is a tough start. No matter how much sleep he gets the night before, he wakes up with a sore body and extreme fatigue. "It feels like you've run a marathon and someone is beating you with sticks," he says.
The first thing I do when I wake up is take my medicine. Then I have coffee. Only then, if I have any energy left, do some writing, go out and do some work, or do some cooking.
"Having AS is like having a remote control on your body. They can turn me off with the fatigue button whenever they want. They can turn the pain button up to maximum volume. They can mute things I want to do."
A plan for everything - how to make life easier
When living with a challenge like this, the only solution is to plan everything. From shopping, to cooking, to socializing, to working, to sleeping, you need to have a plan. Also, you need to make sure to set aside time to relax after doing something.
For example, let's think about cooking. It's impossible to do all of this in one day, working 8 hours, cooking at night, doing laundry, and going to the store. So what she does is prepare the vegetables and sauces she needs for the meal two or three days in advance. She "cooks in bulk" once or twice a month. That means she cooks something like chicken, makes some rice, and keeps it in the freezer. That way, she can easily prepare a meal on a day when she's feeling down.
It all depends on preparation. Before doing anything, you need to plan for it. And then you definitely need to rest.
A battle with sleep - the challenge of 'Painsomnia'
It's usually in the late afternoon that you feel a little better. Even though you can work during that time, it's hard to decide when to stop and rest. Also, sleeping with AS is not easy.
He calls this 'Painsomnia' . It means insomnia caused by pain. When your body hurts, finding the right position to sleep can be a challenge. Sometimes, due to stress or physical discomfort, you have to stay awake until dawn.
Some nights I also experience 'breakthrough pain' . "It's like a sharp pain piercing through the bones. Even though I've had this disease for 18 years, it still surprises me when it comes, because it's so bad."
So, like everything else, he has a plan for sleep.
| Action | Description |
|---|---|
| Getting ready for bed | About an hour before bed, make a cup of caffeine-free tea and drink it. The aroma of it will permeate the room, signaling your body to prepare for sleep. |
| Pain relief | Next, I look at where the pain is the most on my body and apply a pain-relieving cream or a heating pad to those areas. Sometimes I do some stretching exercises. |
| Making yourself comfortable | Then I put on comfortable clothes, wrap myself in lots of blankets, and go to sleep. |
| If you wake up at night | If you wake up in the middle of the night, you stretch a little more or apply some cream and try to go back to sleep. If you don't sleep well, in addition to being tired the next day, you will also be in more pain than usual. |
You are not alone - community support
When living with a chronic illness like AS, it's a great strength to know that you're not alone. These days, strong communities of sufferers have formed online. You don't even have to leave your house to find them.
The person who tells this story regularly connects with doctors, researchers, and people with the same condition online. He believes it makes a big difference. Some people have even told him, "You saved my life."
So, if you have these symptoms, or have been diagnosed with this condition, the best thing to do is to see an experienced doctor (preferably a Rheumatologist) for proper advice and treatment . Also, joining support groups where you can share experiences like this will be a great boost to your mental strength.
Take-Home Message
- Ankylosing Spondylitis (AS) is a chronic inflammatory condition that affects the spine and joints. Morning stiffness and pain are the main symptoms.
- When living with this condition, it is very important to plan your daily activities in advance and set aside time for rest.
- Pain-related insomnia (painsomnia) is common. This condition can be managed by establishing a sleep routine.
- If you have symptoms like these or have been diagnosed with the disease, be sure to see your doctor and seek proper treatment and advice.
- You are not alone. Finding support groups where you can connect with others who have gone through similar experiences can be a great source of mental strength.
💬 අදහස් (0)
තවමත් කිසිදු අදහසක් පළ කර නොමැත. ඔබේ අදහස පළමු වරට මෙහි එක් කරන්න.
ඔබේ අදහස එක් කරන්න