Don't Let What You Have Define Who You Are

I have a dual diagnosis plus a genetic diagnosis: ankylosing spondylitis (AS), Ehlers-Danlos syndrome (EDS), and secondary progressive multiple sclerosis (MS). I do not let my diseases define me. Friends, regardless of any profession I may have, never mention it, and it's how I like it.

The people I do talk about this with are friends who have this or some other autoimmune disease. I don't focus on what I have. I find ways to do things differently, being creative in the process. I've had EDS since birth, and I've had AS and MS for 32 years, so I've had a lot of time to learn to cope.

How I manage my pain

I never give up hope and keep moving, staying as active as I can. I am not in a wheelchair or dead like some of my friends who had MS. I do have quite a few deficits with all of them, but I have developed a sense of humor with some of them. Like dropping things, which happens a lot, "Oops, I guess we didn't need that." You see what I mean.

A lot of people ask me about my pain. For most AS and MS pain, I do stretches. I also use resistant bands every day. Medication is not perfect, and medical science is not far enough ahead to learn the mechanics of pain. I also use acupuncture, trigger point injections, and deep meditation. I could go on and on.

Mind over matter

With pain, I refocus on something else, so I am not engaged in focusing on pain. Believe it or not, it actually makes it worse. Also, don't stiffen up or tense up when you have pain. Try to stay relaxed the whole time; that's where meditation comes in.

There are lots of DVDs that teach meditation, but try to find one that's specifically for meditation for autoimmune diseases or meditation for MS. As for yoga, I use a video called yoga for MS. It's floor and chair yoga, so it works well for AS as well.

Best of wishes, stay hopeful and keep moving.

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