Don't Let a Smile Fool You
Behind that smile of mine hides many things, that I decide who to open up to and tell. Would you be able to tell that I have an invisible illness? Would you be able to tell by looking at me that I am in extreme pain, day and night? Did you know the pain is mostly 24/7, without a break? So before you open your mouth and have a solution for me, on how simple and easy my life is, please think again.
A smile can hide a million things
Did you know I haven't been able to get a good night's sleep for weeks? The pain gets so bad, it torments me. While I try to sleep, I wake up many times in the middle of the night from the horrible pains, all over my body. A lot of the time, I have a hard time picking myself off the bed. I have been afraid to go back to sleep.
The pain carries on with me throughout the day, creating extreme fatigue. From the moment I wake up and open my eyes, this pain stays with me all day. It makes it hard to function. It makes it hard to be productive. Imagine carrying a backpack full of heavy rocks, or better yet weights, all day on your back. This is how it feels to have AS. It affects your whole back, creating weakness to your shoulders. Every bone in your body feels so fragile like they are going to crack or break into pieces.
The daily battle
A smile can look beautiful, but it can fool everyone. Behind the scenes, a woman that struggles every day. This woman is a wife and a mother, that tries her best to give them everything that she is able to do. Even if most of the time, it feels impossible to have this horrible monster around. This horrible monster that makes her be angry, moody, devastated, anxious, and guilty. I mean who wouldn't feel this way? You are fighting a battle every day with no break and not knowing what will come next.
Behind that smile is a painful and weak body. Would you be able to tell how many treatments I have tried and failed? I have been on antidepressants, muscle relaxers, anti-inflammatories, pain medications, anti-rheumatic drugs, medical cannabis. You name it, I have tried it. I am on my 4th biologic right now waiting to see if it will be the one.
Always waiting on another treatment to work
Did you know that every treatment you try, can take up to 3-6 months to see if it will work? Imagine every time, waiting to see if this medication will be the one, and all to hear it has failed on you. All you can do is move on to the next one. Do you ask: why keep trying other medications? Because if you were in pain like this all the time, wouldn't you?
Wouldn't you want some sort of hope that something will help, get you to remission one day? I have tried seeing a physiotherapist, an occupational therapist, and an osteopath. I have incorporated exercise with healthy eating. I have even lost 60 pounds, since my doctors thought that would help out. But I am still in pain daily. There is no cure right now for this disease. It is all about trying to make myself, my body more comfortable.
All I can do right now is continue to take one day at a time. Surround myself by real love and great support around me, that understand. All I can do is have hope and keep that smile on my face, that one day will come and hopefully my journey will become a journey into remission.
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