One Summer evening I was entertaining the kids with different games to tire them out. I came across an oldie but a goodie. We have all heard, danced & chanted along with this wonderful song as a child. Head, shoulders, knees and toes. As a child we do the movements with so much enthusiasm. The giggles that came from the kids throughout each new movement was such a beautiful sound. Each time they moved on to the next phrase the silliness would increase. I look at these words now as a person with Ankylosing Spondylitis and realize the song takes on a new meaning. It’s strange how easily I can relate it to my AS. So many unrelated ailments and yet, in the end, they come back to this chronic illness I fight daily. So let’s put on our dancing shoes and see how AS moves to this children’s song.
Head, shoulders, knees and toes, knees and toes. And eyes and ears and mouth and nose. Head, shoulders knees and toes, knees and toes.
- Head – Can I even move my head today? My neck is so stiff that I may only be able to look down or straight. Let’s not forget the great headache I may have due to my medicines.
- Shoulders – Touching my head is out because my shoulders hurt so bad there will be no lifting in my near future.
- Knees – I want to dance to this song, but I stand and realize the swelling in my legs is putting to much strain on my knees. Touch my knees? I can barely bend.
- Toes – Is it strange that during flares even my toes hurt? Any pressure is almost unbearable. Socks, covers & even shoes do not exist during my most painful days.
- Eyes – One word…iritis! No, I have not been smoking funny plants…I have AS!
- Ears – Seeing as my immune system is compromised I am here to say it is possible to get an ear infection in the summer.
- Mouth – My jaw has shifted, my gums are weak, and sometimes chewing is even a chore.
- Nose – Bloody noses, bruises and colds due to the low immune system. Beauty at its best.
The list goes far beyond this song. I don’t expect the pain to go away. I have accepted it as part of my life. I do however hope that my fellow AS & chronic illness sufferers not let the music within them go out due to their pain. We must realize that although we live with a chronic illness we must find a moment to dance, sing and even giggle. We may not be able to boogie like we used to, but we still can love and appreciate the song.
Amanda
The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
Amanda,
You have a wonderful way of making the topic of sharing what it is like to live with Ankylosing Spondylitis an approachable subject. I love this post – you had me giggling and nodding my head (not really lol) along with your article.
Thank you for your resiliency and honesty and for showing people we may suffer but we’re survivors of that suffering and that we’ll Fight Like A Girl through all adversity!
Love,
Jenna
Jenna – You know I love ya to death girl! Your support means the world to me!! Thank you for your kind words! As much as I despise AS, I can never fully hate it because it has brought me to so many amazing people. The AS community really is so supportive and wonderful. It has also taught me so much about myself and my surroundings. I have learned to appreciate the little moments and things in life. For that I will be grateful to my AS diagnosis. Wishing you all the best!
Thank you, thank you, thank you!! Your description of AS, was so “it tune” with my symptoms. (pardon the pun) So sad that so many have no clue what AS is or how it feels to never know how you are going to feel until you wake up each morning. Frustration at its finest! Very funny way to explain it….thanks again!
You are so welcome Nikki! Wishing you a pain-free (or at least some relief) day!
Thank You, I will use this to remind me to continue to smile through all the day and my body had to throw my way!!!
Cathy – I wish you all the best. A positive attitude really can go a long way when it comes to an illness.
Question:..I am curious to know from any of you…can you have a Diagnosis of AS and not have any fusion from this disease?…Or do any of you have the disease without fusion anywhere??
I suffer from all the classic s/s of this disease, plus have the marker for the HLA-B27+ blood Antigen, yet have been told by one Dr. that I don’t have it, because I have no fusion, although I have a LOT of pain, along with all the other s/s!!
HELP!!!
Betty