How would you describe a day with A.S.? Should I specify a good day or a bad day? All of us Spondy’s know they can be interchangeable. One day may start out great and go down hill in a second and visa versa. It makes planning things a wee bit of a challenge.
I will try and share a typical day for me with Ankylosing Spondylitis.
A day with A.S. doesn’t really have a start and stop. My sleep is usually not sound and I can be woken up at any given moment with a shooting twinge here or a muscle spasm there. Sounds like a song, I better write that down. So let’s say I was able to get six restless hours of sleep and now I must get out of bed. Simple you say….NO not simple! The longer my body is still the stiffer it gets. There have been mornings I was completely unable to move. I started sleeping with a heated blanket and it’s wonderful at reducing the stiffness by morning. I found a morning stretching routine I do before getting out of bed on bad days because the last thing I want to do is force myself up and snap something. I know you all are familiar with that snap crackle and pop.
The shower is by far the best part of the morning. The hot water really helps my body relax. Then I have to get out and reality hits again. Did you ever think you would need help getting dressed? Some days I have to admit I do. You see my upper body can get so stiff it’s a struggle to pull things over my head. I started a stretching routine to help open up my shoulders and if I stick with it everyday I can pull things over my head without too much pain.
I work from home so I consider myself extremely lucky. For all you Spondy’s that must look presentable everyday and go into an office, my hats off to you! I can not sit at a desk for too long with-out screaming pain racing right up my spinal column. It’s like sitting there I can actually feel the domino effect as my spine grows more angry. I get up and walk around as often as possible. I divide all my time up into chunks to avoid sitting in one place too long. It can make focusing on large projects difficult. So I had to create ways to teach myself to work in this new fashion. I do quite well now. I try out different area’s to do my work and play with different schedules to see what works best.
It’s like I’m constantly learning how to live my life all over again.
Maids should be given to every chronically ill person free of charge! Just sayin’! Trying to come home and clean the house and take care of everything is quite a daunting task when you’ve already accomplished so much. You just want to sit down. The more you hold off the worse things get around the house but the more you force yourself to do it the worse you get. It’s a vicious cycle! I’ve come up with a life hack here. First off recruit help! Then list out everything that needs to be done to keep your house clean. Plug in only one or two things a day into a calendar. Whether it be something that needs to happen every week or once a month. Done! Do your one or two chores a day and recruit help when you need it. It’s worked pretty well in my house. Well until a flare knocks me down for days. Then we’re all in trouble. I look at it this way, I’ve given it everything I’ve got and that’s just going to have to be enough!
Spondy’s can do everything but they can’t always do it when it needs to be done. We need help sometimes. I hated asking for help…still do! I am getting better at it though. I am learning a little more every day how to live my life with Ankylosing Spondylitis. Did you see a pattern? Pain and difficulties getting in the way of each task but persevering each time to overcome it. We all do this everyday. We constantly reinvent how we handle even the simplest task. We are not lazy nor are we weak. We are warriors!
Stand Tall! You’ve done good!