Accessibility
Ankylosing Spondylitis is a degenerative autoimmune disease that causes chronic inflammatory arthritis in my major joins: spine, shoulders, knees, jaw, wrists, and coccyx. It affects my mobility, causes chronic pain, and impacts my cognition.
This page on my website is not always published. If it is visible, it is because I am experiencing a flare-up and find that this might be a good place to introduce you to my condition. Since my diagnosis and ongoing treatment, I find that my condition is not always predictable. It is possible for me to experience the following symptoms from gentle to severe degrees.
Mobility + Pain: during a flare-up I find activities such as sitting, standing or laying down painful for any significant length of time. Walking, going up + down stairs, eating/chewing and activities related to basic self-care (cooking, washing my face, getting dressed) can be painful. Activities related to my art practice present another layer of challenges.
Cognition: experiencing deep chronic pain makes it very hard to concentrate. I tend to lose my short term memory, so it is possible that I might repeat myself throughout a single conversation. Activities like emailing, planning my schedule, remembering details become difficult to do.
Fatigue: periods of intense pain are often followed by periods of fatigue. It is my body’s way of trying to recover and heal itself. During these periods it can be hard for me to get up or stay awake for more than an hour or two at a time.
If I have project deadlines during a flare-up I do my best to stay on track, communicate my schedule, and strategize ways to get the work done. It is important for me to share that I take my work and my deadlines seriously. With that in mind, I am not able to control when my flare-ups arrive, how severe they are, or how long they last. It can interfere with my projects from time-to-time, so I find that the best strategy is understanding and communication.
-Vanessa