I’m not sure if Shakespeare knew the impact his words would have when they first poured on to paper. “To be, or not to be: that is the question: Whether ’tis nobler in the mind to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of troubles”. It’s a great question. If I am looking at these words and try to relate them to my Ankylosing Spondylitis, I wonder how far will I go to keep from a flare, be able to get some sleep or just have a day with a little less pain? Can I just “be” me, through even the worst of pain?

I must admit I’m currently feeling a little less than my best since I’m due soon for my next injection and the previous dose has had its magic, feel good powers wear away. I get frustrated because I know it’s close, and I even try to convince myself the only reason I’m hurting is I know it is almost time. I start with the “what ifs”. If I didn’t know it was coming would I really still hurt? Is it just mind over matter? I have so much to be happy for right now in my life. I keep trying to ignore the horrible pain and the complete exhaustion I am experiencing at the moment and focus on all the good. I want so badly to take full advantage of all of these extra exciting events in my personal life, but as many people with AS know, you attempt to give 110% and when you end up with several sleepless nights of pain as a result of giving your all, unfortunately, it can catch up to you, physically and emotionally.

So now having to wait a week until I get that little help of relief from Simponi, I have to turn back to the pain medicine which is something that can interrupt a person’s day. I was able to put the pain meds away for so many weeks I think I got spoiled a bit. My schedule is full during the day running errands and playing taxi for my children so pain medicine isn’t on the agenda when driving is needed. I will be honest that I do enjoy having the busy days. I love that I get to “be there” for my kids and husband when needed, but I wonder if sometimes when I am feeling less than my best if I am really there. I’m also in the process of moving into our new home so I have no time for the daily brain fog that so many lovely pain medicines offer. Deep down I get a guilty feeling if I take one during the day. As if I am doing something wrong trying to help ease the pain. I know that this guilty feeling I have is a bit silly, but I just can’t seem to shake it. I want so badly to feel “good” that I get to the point that the results of brain fog outweighs the pain. The loss of being able to control my situation is all very overwhelming.

Living with Ankylosing Spondylitis does fill each new day with choices. You have no option but to make them. If you have AS you know that there are definite plus and minus points with each action you take. Do I choose to push forward at whatever cost? I can’t speak for others, but for me, YES! Life doesn’t stop for AS, so why would I ever stop for it! If it means I get a bit run down or attend a few events a little foggy it will be worth it knowing I never let AS get the best of me. I choose to “be”. That’s my honest, simple answer.



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