Coping: My New Life with AS

Hi y'all,

I have been diagnosed since July with ankylosing spondylitis. It causes stiffness and affects my joints, tendons, and ligaments. I have pain in all my joints and feet, for example. The pain restricts what activities I can maintain or even do at all.

I went from being able to do everything to hardly being able to bend or do basics things like housework, like doing dishes. Doing that takes effort and support to maintain and I just can't anymore. What I can do has severally changed and is limited. I taught aerobics, now I can't really even exercise and my walking is impaired. I'm restricted by my pain and advanced AS symptoms.

Symptoms in the past

Looking back on my life I've had isolated incidents where my ankylosing spondylitis has flared up. I've had pain and mobilty issues limiting me and so forth. It has severely affected me all over. I get pain in my hips, bowel, hands, lower spine, hips, knees and feet and hands and neck. I get fatigued and lower energy levels, so I have to pace myself where I go, how far I walk, and what I have the energy to do. Before, I didn't have to even think about it, I was very fit and active.

I also have to where thicker winter type clothes in the summer. Sometimes I wear a scarf to keep warm. I'm cold all the time.

Managing my pain

I have been placed on Humira to try and manage my pain and mobility and keep me ticking over ok. I'm also diagnosed with fibromyalgia, polymygia and thrombosis, which which all cause pain and mobility restrictions too. Some days I can't hardly move. The pain is so bad that I have trouble sleeping. My stress has exacerbated my health issues and how well I can cope emotionally. It can be very hard to cope with all the pain and living with a disability.

I sometimes get very distressed by this and wonder, "what does my future look like?" So I really try to keep going the best I can and keep moving forward. Letting go of past stuff and things that hurt emotionally can help. It's good to reflect on this and process it all with help from a professional or a person trained in mental health.

So far, this year alone I've had several medical procedures connected to the ankylosing spondylitis that went pretty much undetected until my present age, 47. This year my symptoms of pain and stiffness progressively got worse. Now, I'm loosing my independence. For now, I can still drive around somewhere on a good day with the right conditions like warmth, pain under control and medication on board.

Coping with my new life

By writing this out I hope it helps someone else who's potentially in a similar situation. I have seen flare ups and just know that when you have them, I'm right there with you!

I hope by maintaining a positive attitude, I'll be ok and get through this whole process. I do carry the defective gene for ankylosing spondylitis and am more susceptible to other autimmune disorders, so sometimes I need help with keeping my spirits up. Writing this really helps and I hope my story can help someone else. This is a small snippet of my life and I hope it helps you feel less alone in this world.

Thanks for this opportunity, again, as it does help to get it out and hear from like minded people.

Many thanks!

Warmly,
Hara