I feel some of your pain dmx. My diagnosis was 10 years ago when I was 25, after a long period of misdiagnosis which included a spinal fusion operation and diagnoses of hypochondria and depression.
I didnt know what was wrong with me, why was I always in pain and so tired? There were times I was sure I had something terrible. Cancer, AIDS, all sorts of things. I starting having panic attacks and thought they were heart attacks.
When my AS diagnosis eventually came, I actually felt relieved that there was something wrong with me, it had a name and I wasn't mad or making it up. Or a wimp. And, best of all, it wasn't a death sentence.
But of course it is incurable, progressive and hereditary. I wasn't going to be able to play football again. My future children might get it, if I could even find a wife who would have someone disabled like me in the first place.
I was really into my sports, always on the football pitch or tennis court, and it was very difficult for me to accept that I couldnt play anymore. Ive never really got over having that taken away from me to be honest.
I had also just met my future wife at the time I got my AS diagnosis who didn't know there was anything wrong with me. I didn't think she would want to stay with me once I told her I had a hereditary and disabling disease.
I was very depressed for a week, maybe two. Couldn't face the world. I called in sick to work and stayed in bed.
Eventually I got the courage to go see my girlfriend and tell her the news. After speaking with the doctors about the risk of any future children getting it, she still wanted me. I am very lucky.
After a while the anxiety, anger and depression started to ease a little and I began to accept what I had. I concentrated on what I could do about it.
Things that helped me:
Understanding that pain levels will rise and fall - there will be good periods and bad periods. Today may be bad, but tomorrow could be really good, such is the unpredictability of AS. I have had flares that have lasted just one day. Yes, some have lasted months, but each day I wake up and its different to the day before. There is always hope that tomorrow will be better.
I try to keep my mind occupied so I dont get depressed. I try not to think too much about the future. Everything has a beginning, a middle, and an end. Practice patience.
Get medication sorted out and pain levels under control. I had been trying to battle AS with minimal medication , it was a really bad idea my quality of life was very poor. I have periods when I can survive without NSAIDs but I self medicate now alternating my dose between minimum and maximum depending on how I feel and what activities I will be doing that day.
Pillows - if they are too big they give me terrible back pain next day. I use a towel now instead. This gave me neck pain for a while but that passed.
Bed: Too soft and I get back pain next day. Too hard and I get bruised hips and shoulders.
Sofas, chairs, car seats - make sure the seats you are sitting on most are not causing you problems.
Food - certain foods cause me big problems. Orange juice and bananas give me awful flares. Im suspicious of dairy too. No starch diet didnt work well enough for me to be worth the effort and expense (although i was having dairy at the same time), and as someone who is underweight and active i wasnt getting enough fuel in to my body. My diet is focussed on getting lots of calories in and as much of that through whole foods, fruit and vegetables and lean meat as possible. I need to cut out the alcohol but i enjoy it so much...cider seems to be the least worst alcohol for my AS.
Swimming has a huge pain relieving effect on me, greater than painkillers. BUT I only swim for 15-20 minutes a day at a light/moderate pace and built up to that slowly. It is almost "active stretching" in the water. Even with my worst flares I try to get in the pool anyway. I have also learnt to swim efficiently with a total immersion swimming course. I also mix up the strokes, I do 4 sets, with 1 set being 2 lengths of breast stroke, 4 lengths of freestyle and 2 lengths of backstroke. This all helps reduce the impact on my joints and muscles.
Ice helps flares. Cycling hot and cold baths or showers can also help, particularly after exercise.
Concentrate on managing your symptoms, you will be surprised how sometimes something as simple as changing your pillow could make a big difference.
AS is horrible, but I am thankful for what I have. There are people who are dying in front of their families who would give anything for another 10 years, in pain or not.
Imagine what you'd miss if you werent here. Family, friends, children. Seeing your football team win their league, meeting a beautiful woman, seeing the northern lights or the taj mahal. Enjoying a boullebaise in Nice, a pizza in Rome or a paella in Barcelona.
So sorry to hear about your dad. I cannot imagine how painful that is. Life is too short.
Last edited by Staffy; 03/27/15 04:52 PM.
