Recently I had a four day adventure with Ankylosing Spondylitis. I didn’t know at the time that it was part of my AS adventure, but by the 4th and final day I realized the huge role it played. Let me warn you ahead of time that for some, this story may seem a little strange or funny. You may think that it’s something not worth getting upset about. If you have AS, you know any extra loss of control can set you on an emotional roller coaster, so please bare with me. It started with me unpacking things in the bedroom of my new home. I am so excited about our first home that I’m almost too eager to get everything unpacked and organized.

I was unpacking my jewelery box and found that all of my necklaces were tangled so of course, me being me, I had to fix this instantly. I wanted all of them separate so they would lay nicely in my new jewelery drawer. I had a history of getting them tangled and almost enjoyed the challenge of getting them separated (strange, I know). On this day, for the first time, it wasn’t easy. In fact, it was almost impossible. On day 1 I struggled for almost 4 hours while getting 2 of the 6 loose and put them away neatly in the drawer. Day 2 came and my hands were so sore from picking away at the necklaces that it was quite the challenge. Were the necklaces winning the battle? This was not acceptable. On day 3 it now became everybody’s fault in my home except for mine. In my exhausted mind, I was having trouble because the kids kept interrupting me and my husband wasn’t offering to help. Now in reality my kids were being kids, they wanted a snack, or asked normal questions like permission to go outside and play. My husband, knowing my stubborn personality knew not to ask me if I needed help because I would most likely get mad and ask him why he thinks I am helpless and can’t do simple tasks. My mind was tangled at this point. The three of them were in a no-win situation…and it seemed so was I. This day brought tears of the frightful feeling of losing control. I had tears from the loss of my temper, tears because I knew why I was, and shouldn’t, be acting so insane, and tears of pain, but I just couldn’t control my frustration. I NEEDED CONTROL even if it was just over untangling a few necklaces. At about 2am I decided to step away and try again in the morning. After a normal sleepless night, this time obsessing over how to get the necklaces loose, I woke the next morning in extreme pain. My neck could barely move, my hands were raw and my back felt as if I got in a full out brawl. I kind of did, but I believe it was more of a mental fight. Day 4 was going to be the day. I was ready to win. I felt like I was in the last lap of a race, tripped, but got right back up and kept moving. I needed a fresh perspective, strength and confidence that I could overcome this challenge. Instantly I was able to get more loose and I was down to the last 2 necklaces. I was in the home stretch. I told my husband I would give it a few more tries and if I was still unsuccessful I would allow him to step in. I was ready to ask for help. The pain once again convinced me that it would be okay to ask. The time came and went and those 2 stubborn necklaces were still combined. My husband, as usual, was my knight in shining armor. He helped me win.

I’ve always been a woman who likes to control every situation, AS is teaching me otherwise. I’m willing to admit that sometimes help is necessary. I may not like it, but it’s also something that is a part of my life now. It doesn’t mean I am any less than another person, it just means that I have to learn limitations. It might sound crazy that I got this much out of a simple 4 day adventure to untangle necklaces, but it is a fact. I have a chronic disease, with no cure, that will give me good and bad days of health due to something I cannot control. Having AS is a constant learning and teaching process. It is also an acceptance process. I may be tangled some days, but give me a few hours or days, and I will once again be gently organized and somewhat free from the knots of pain.



  • Jackie Aitchison says:

    I was with you all the way, I have AS and I have a lot of necklaces!!! The trick, once they are unknotted it to find a big enough jewellery tree so they hang up and cant get tangled!! But that feeling of getting more and more tired but being more and more determined, knowing you are being unreasonable BUT just oh so wanting to be in control and to do it yourself becomes a bigger and bigger deal, Totally unreasonable but totally understandable to fellow AS’s. There are big things we dont think twice about asking for help with, but sometimes the little things are as difficult and More important to be completed, a small victory just to keep you going xxxxxx

  • You articulated my frustration so clearly. I have AS as well as Crohn’s and chronic Anemia. I decided in December to make my study a craft room. I put everything in my son’s room (he’s away at college) because I had 5 months before he came back…..then I had a severe AS flare…..then a Crohn’s flare…..then no energy, I mean NONE….I had Mono…..then my son came home from school…room still undone!!!!! I finally today asked a friend to help me. Thank you.

  • Kelli says:

    My heart goes out to you! I fully understand. I watch my beloved husband deal with these tangles and fights every day. I applaud your persistence and your determination. And I bow to you for your wisdom to realize that you sometimes have to let your wonderful husband help. That is not easy, I know! God Bless you and your family!

  • Living with AS is so physically and emotionally demanding that it often leads to low frustration tolerance. I often find that these type of seemingly trivial types of tasks that I have difficulty completing because of some AS-restricted movement or pain can push me over the edge. When we allow our disease to take us over emotionally it then leads to increased physical symptoms of muscle tension, fatigue, headache, and pain. The hard part is realizing when to swallow our pride and ask for help. Excellent Post.

  • Sheena Scott says:

    I completely understand your frustration and feelings of losing control. Nice to know I am in good company x

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