Living With Ankylosing Spondylitis

It’s difficult to explain to someone who doesn’t have this disease how much it can affect your life and how it is one of the most painful things to have. People don’t understand that. Some days I can barely walk a few yards without wanting to scream in pain, others I can walk further with no problems at all. It affects my sleep too, if I happen to roll over on to a painful joint it can be excruciating. The thought that one day the base of my spine could be completely fused together plays on my mind a bit. Especially where Mackenzie is involved as I don’t want to miss out on the fun times I could share with him because of this stupid disease. But feeling the bones of my hips grinding with every move and the bottom of my back click at each step, doesn’t make me look forward to the possibility of what’s to come. Every day is a struggle and some days it gets so painful, moving becomes real mission. The worst part of this disease though is that moving is part of the pain management. But if you’re in too much pain to move, how are you supposed to manage something that causes you pain? I also have another condition on the side of the AS called Trochanteric Bursitis, which again is controlled by painkillers and movement and another one of those “nothing we can do about other than try to manage” diseases. Sleeping is really difficult at times when I have a bad day of pain, as I have trouble laying on either side because of the TB in the hip joints and laying on my back because of the AS. I can’t win really.

It’s nearing the end of March and believe it or not, the temperatures are still freezing outside (with snow), meaning my condition is at its worst. Last night, I was cold and fell asleep on the sofa. When I woke up I felt like I couldn’t feel my legs, I thought I was just tired and as I stood up my legs turned to jelly and if it hadn’t have been for Daniel catching me, I would have hit the floor. I had a pounding headache and my spine felt like it was tingling, the worst sensation was that my legs were starting to feel numb. I didn’t explain this to Daniel though as we’d had yet another discussion about money troubles and the fact that we have none, so I didn’t feel like talking to him at that point as I was still angry about the situation we’re in, that was after I had already taken things out on myself. Yes, after years of not self-harming and controlling my urges, this latest bout of depression has really pushed me to rock bottom again. With every step I was taking, my legs felt like a dead weight dragging behind me and I kept going dizzy, almost falling over. I am grateful to Daniel for being there last night, because if I hit the floor the first time, I could still be laying there now. The embarrassment of the whole thing is that I needed help to the toilet and getting undressed and into bed as well. The horrible thought is that this will be what the future holds for me and this disease.

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