Have you ever heard of Ankylosing Spondylitis (AS)? Probably not, but twice as many people get AS than Multiple Sclerosis (MS) and everyone knows about MS.
AS is a long-term disease that involves inflammation of the joints between the spinal bones, and the joints between the spine and pelvis. These joints become swollen and inflamed. Over time, the effected spinal bones can join together.
AS is an auto-inflammatory disease that has effected mainly my sacrum (the bone above the coccyx) and my hips, but have felt its presence in my elbows, feet, neck and spine. I cannot bend over, bend back or turn my head to my left shoulder without major discomfort. To top it off now I have ulcerative colitis which makes my gut hurt every time I eat something that doesn’t agree with it. When the pain in my gut gets bad it’s as though someone has opened me up with a jagged sword.
My body is in a state of constant inflammation and it is sometimes so painful that I cannot even get up, roll over, sit or curl into a ball. If I lay to long in one position pain shoots up my spine and back down again surrounding my hips, over and over. Not to mention the pain I feel in my “hind end” when I sit for too long. Can you imagine what it is like to sit on flaming hot pokers that are moving up and down and in and out?
After several days of this chronic pain I just want to curl up and die. But what makes it worse is the way I get treated by others who don’t understand what my pain is like. I feel bad enough already, not being able to do the activities you want to do. I feel bad every time a miss a day of work. I feel bad when I cancel on you, so don’t make me feel worse by telling me “you’ve been this way for 3 weeks, when am I going to get some time to do what I want?”
I want you to understand that when I’m sick I am still human. I’m considerate, even when I’m in pain, to cook you supper, get your food for you at the grocery store, wash you’re clothes and even sit and watch TV with you when I would feel much better laying down.
I spend most days in pain and on others in exhaustion, don’t think that I am looking for sympathy. I don’t want sympathy but some compassion would be nice. Do you know what it feels to hurt and just want someone to put their arms around you and say “It’s going to be OK?” Do you know how it feels to cry yourself to sleep each night because you feel so bad that you can’t do the things others want you to do? Do you ever think about what this constant pain does to me?
When you are sick you want soup and medicine which I fix and bring to you. I ask you how you are feeling, I take your temperature. I don’t get upset because we can’t go and do something, it is what it is. But have you ever thought of getting me something, helping me out by doing some cooking or even just bringing me a cup of tea? No you avoid me like I have the plague.
Unlike you I am stuck in a defective body that will eventually break down. Some days are good days and these can last for months, but I never know how long a flare-up will last. I try every new remedy to help alleviate the pain and anything that will give my life some semblance of hope. This hope is all I have until then this is the body I have to live with and I need you more than ever to understand this.
The next time you have the slightest amount of pain, multiply that by ten and think about having that pain day in and day out, month after month and year after year…. This my friend is my life!
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