Writing about the pain one goes through is a painful process. It takes one back into time, to revive those days. But living with pain is a difficult thing. Knowing that the future will be, is like facing a tickling time bomb and not knowing how to diffuse it.
Ankylosing spondylitis is a disease which has no cure. When i was told by the doctor that i had this disease, it did not have any serious effect on me. The reason was two fold, one i had been suffering from extreme pain, and was glad that at last i had a reason identified. The other was that i was not aware of meaning of this reason. But as i studied about it, i felt i did not deserve to have it. It was really scary reading about it on the Internet. But then it was a reality that i was suffering from it.
Its has been a long road. The manifestations of this disease has been many, it has not let a single part of my body untouched, from the head to the toe. I had been under the surgeons knife for five times till now. Three times for a osteoma in the mid ear canal, and because of it i have lost a considerable hearing power. I suffer from uveitis glaucoma in the eyes. Both eyes have been effected, and i have a flare now and then. My tooth's have become brittle, so have had to have minor surgeries, and have to put caps on the teeth's to give them some protection. The jaw is effected, so i can not open the mouth fully, i eat a burger with some effort. The throat is effected due to calcification .. So a problem swallowing. The spine has a hemangioma in D5. The spine has also started to fuse and the disks become squarish and the calcification progressing. To release the pressure on the nerves, fluid is injected into the spine too. The rib cage has got reduced expansion. With the pain in the ribs and the shoulder blades, flaring now and then. When in pain, even breathing is a problem. And i hope in those days that i do not catch cold, for a single sneeze can be very painful. Am asthmatic too, so the lung power is gone. My bowels are unstable as is common in AS. I have had both my elbows fractured and one of my wrists too. Every bone fracture take two to three times more time to heal. Because of the bones being effected, i am advised not to do any strenuous activity. Not even lift a bucket of water.. . My hand and fingers ache, for this is peripheral AS too. The SI joints have fused, so with time, the only remedy would be total hip replacement. My knees have gone weak. The cartilage has reduced in them, i have had a surgery on one knee and have fluid injected in the knees to aid movement. My feet's hurt as in case of AS. The ankle joint too... So as you would have seen there is not a portion of the body, which this disease does not effect.
The only consolation is that, all of these symptoms do not occur at the same time. But they choose their time at will. So its more or less that its this today or that tomorrow. Its been a life changing disease, it has made me a different person all together. I have to drop things one by one which i liked, adjusting as the disease progresses. I was at one time a good athlete, but i had to cut that short under medical advice.
As the years progressed, it has made me realise its power. Even as i write today, my heels, back and shoulders are in pain. The doctors say am at stage 3. That's an advanced stage, just another stage to cover. Am on DMD, disease modifying drugs, that tend to slow down the progression of the disease. So how much time do i have left? I do not know, and i do not care too.
I have had enough of living in fear of it, it has its way with me, and i have a life to life. We both have learnt to co exist with each other. Its a fight, but then there is no end. I have fought this, and i can say with a good success. Its not easy to live like this, but there is no other way. I too have weak moments. I too cry in pain. At times every step is a effort. At times there is no sleep. At times i feel to give up, and this feeling comes around now and then, but i have managed to hang on, and keep the motivation going.
Why am i writing this? I believed i could take on every thing and still come out victorious. But this has humbled me, life is a teacher. I have seen cancer from close quarters.i lost someone. I have seen kidney disease from close quarters and continue to see it. What i learnt was, that's its more painful when some one near to you has a life changing disease. You can handle yourself, but the pain of others break you down. And a few days back, another jolt and this time it left me shaken, my belief in God still there, but i do ask the question ... Why is this suffering there .. Is it because of me?
This has been going on since 2000 and officially diagnosed in 2007. So i have completed a decade of fight .. And even today despite of it, i have walked and jogged for around 2 hours in the morning ... I will not give up .. And so i wish You do not give up.
