Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group My denial is coming to an end...

I was never an athlete, but I did used to walk miles - and I mean miles. 10 miles in one go was nothing, and I have done more than 40 miles in a day. I also did a few 7 day long distance hikes. Now I can barely do 25 yards. It kills me. I keep hoping that if I can get inflammation under control I might get back to being able to walk a couple of hundred yards or so. The only comforting thought is that I could probably have got like this 5 or 6 or more years earlier if I hadn't pushed myself to keep up regular walking, but I do feel like an old woman now. Part of my fight is to make sure that I push to get on the absolute best treatment, as well as making sure I don't allow my muscles to completely waste away, and keep up the range of motion stuff.

I played tennis competitively in college. A couple of years after college I developed a really nasty case of bicipital tendonitis. Little did I know that was probably my first warning sign about the insidious spondy beast.

When recovering, I ended up picking up hiking. Then social dancing. Then yoga. Things that I never thought I would enjoy because I spent so many years playing tennis, I started exploring and loved it.

Throughout the years, I dealt with numerous tendon and muscle injuries, all which were frustratingly slow to heal. Eventually, I had my first major flare that pretty much crippled me. Moved back in with my parents. Couldn't drive without my arms being in complete pain afterwards. Ended up going on medical leave. It was a low point.

But with a lot of luck and the information on this forum, I learned how to manage the disease. In my initial stages of recovery, I would go outside and walk around the block (10 minutes). I attended a qi gong class.

Over time, I was able to stretch my walks to 30 minutes. Eventually, I started a Pilates based physical therapy program. I started taking a restorative yoga class because I wasn't strong enough to take a 'regular' class.

With slow and steady progress, I was able to strengthen. My walks increased to 60 minutes. I was responding positively to the strengthening exercises.

Last summer, I played tennis for the first time. I can now attend a 'regular' yoga class without hurting myself. I did my first push-up in ages in January this year. I now feel comfortable hiking up to 3 hours. On shorter hikes, I run for little bursts. I'm now social dancing again.

One of the things that I took away was that it's critical to focus on what you can do and not what you can't. If you focus on the latter, it'll be so demoralizing you'll never have a chance. While what you can do now may not be fun, you may discover that it can serve as a spring board for better days.

I do feel that you need to get the inflammation under control if you are to observe sustained improvement. There lots of different ways to do this; you just need to find something that works for you.

Never give up. Keep an open mind. You may not be able to do what you were capable of previously, but you may end up finding something new that will enrich your life.

Good luck!

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PS - we also have a ninjas! Right Ladybug?

to cemc -
I'm sorry to hear how you feel. This is such frustrating stuff. and I hate the "old lady" feeling!!

Former_Foodie -
Thanks for all of your thoughts! It is very encouraging. I also love your quote from Princess Bride!
Thank you!

My Rheumy told me that there will be stages with the illness - his newly diagnosed patients usually are very upbeat and positive about the illness and take it 'too well' - then they get to about 8 - 10 years and they realise its going to stay around, is incurable and in some may gradually get worse and they tend to get depressed. He says he sees this pattern often.

I came down with it and another autoimmune problem with i was 26 and having an awesome year up until that point. I denied it away for years before it got too bad to ignore and started impacting on life and work bigtime.

Contemplating TNF alpha meds or a NSD to try and stem the tide at least for a while.

Hi mcbee and welcome to KA!!! First, let me say that there's always the chance that you will go into remission, whether it be brought about by diet, treatment, occur naturally or for reasons unknown, it does happen... never give up that hope!! As to the exercising, I was very athletic when I was younger(as many of us here were), swim team, track team, basketball, raquetball, tennis, I had horses, dirt bikes,(wow, you just brought back a lot of good memories for me!! ) but my AS has limited what I can do these days, so for now, my main source of exercise is swimming and when I'm having 'better days', I take several short walks everyday, I'm lucky that my knees have been spared in all of this...hang in there, you'll find a regimen that works for you... Big hugs and again, welcome to KA!!! Michelle