A positive frame of mind can get you through anything right? Even during a flare? Maybe. But, boy is it hard to try to keep smiling when you have gone on 2 hours of sleep and can barely sit still because every position stiffens each joint within seconds. I like to try and give myself a little pep talk daily. I have fought many different health battles throughout my life, not just AS, and have always somewhat defeated my obstacle. I do know eventually I will feel some relief, I have accepted that it will never completely go away but I refuse to let it get the best of me. I must say the challenges do keep me on my toes. It seems when I let my guard down that is usually when something sneaks up on me. When I was diagnosed with AS, I had already progressed but figured this was something I could kick. I knew nothing about AS at that time and figured it was just a few aches and pains. I had lived with health problems for so long that my high tolerance of pain could easily get me through this. It was going to be something else I could take medicine for and the pain would be gone. I did not account for the medicine not working, flares and the unfortunate side-effects that come along with AS treatments.
There have been so many times that I have felt that this is what friends and family have wanted to say to me. AS’ers you know the “look” you get. The rolling of the eyes, the scrunch of the nose or raised eyebrow. The look that says you don’t look sick so stop complaining. I try my hardest not to “complain” but it has become a challenge all on its own. You want to be able to share with your support system that you need them yet not be a burden or the outcast. You begin to avoid others just so you don’t slip and say an extra ouch or mention you may need a little rest. Without your loved ones you may literally not be able to make it through your day. How will you walk up or down the stairs, throw in laundry, open the juice, or even be able to get your shirt buttoned? Your hands, neck, back and knees are in so much pain that you feel helpless. I think this is one of my biggest frustrations. I have always been so independent, even with my past medical history, and now with AS, I just have to accept that now I can’t do this on my own. For those who know me well, know “can’t” is not a word I like to say. I am still learning that can’t and limits are two different things. I am learning my limits daily and hope to eventually accept that I do have some.
Walk A Mile In My Shoes
Walk a mile…with AS…yeah right! You wouldn’t wish your pain on anyone. It is hard to explain what you feel. AS’ers we all know exactly how it feels but what I want is for our pain to be accepted. You finally get an explanation from a doctor and feel welcomed in the AS community that your pain is real, you then go into the “real world” and you are right back to where you were before your diagnosis. Lost, alone and feeling out of control. Thankfully, I can’t say this happened to me by all of my family and friends. I have a few loved ones that have become my biggest supporters. They are there for me, if for nothing else, but to let me vent and then not judge or tell me to get over it. They accept that I have Ankylosing Spondylitis and want to learn whatever possible to help me through this journey. You guys know who you are and I love you for never making me beg or feel like a burden. You don’t expect a medal for loving and supporting me. Me, with AS, not me, the person who can always be positive. You expect nothing in return for your love and support and I can’t stress how lucky I am for having you in my life. To our family and friends who brush us off let me just say, we will gladly carry this pain for us both so that you will never have to experience walking a mile in our shoes. I can’t express enough the hurt that I feel when I find out the whispers that have gone on behind my back. I always end up hearing about them and at this point should not be surprised, but to be honest, it still hurts. Although you may not support us we will still continue pushing forward. Our bones and body may be weak, but our souls are not.
Smiling Doesn’t Always Work
AS patients are known to try and “hide” the pain. We add a little smile, take a few extra deep breaths and add a little more make-up just to try and pretend we feel “normal”. What about the week before our next treatment when the TNF’s have worn off or you are in the midst of a flare? What about when the frustration has once again set in because you get your latest labs back and now you are told you have to worry about whether new complications have arrived? You want to stay happy and smile. You ask yourself how much more can you possibly take; trying to remember you are only given what you can handle. I look at my loving husband and beautiful children and remember what keeps me going. So yes, smiling doesn’t always work but in the end, I will try my hardest to keep positive. I know there is no cure but that also doesn’t mean I just give up. I could throw my hands up and say forget it and wilt away. I am not that person. I will not allow something to tell me how to live. It may not seem like it right now but with the proper attitude, a strong support system, and medical care we can all smile again.
Share With Me
AS patients – What helps you stay positive? Any advice to fellow AS’ers on how to get through those down times?
Support System – Do you have any little things you do to help your loved one with AS keep positive during their darkest times? Does your loved one seem to “hide” it? Do you honestly feel burdened at times?