Imagine that you have to live with nonstop pain 24 hours a day, 7 days a week. How would you cope with such a condition? How would it change you? Would you try to numb your pain with alcohol or illegal drugs? Would you withdraw from society?

What if your condition disabled you to the point that you could no longer be employed outside your home? Could you handle your income being shrunk? What if you had to depend on friends, relatives and government assistance in order to survive? Would you be able to manage to get by without losing your mind?

For most people, this scenario is something that they can only imagine. I don't have to imagine it because it has been my life since December of 2011.

Ankylosing spondylitis isn't something that one normally hears about unless one works in the medical profession. I hadn't heard of it until a physician told me that I had it. By the time I was given that diagnosis, my life had been turned upside down.

Six months earlier, I was in fair physical condition for a person my age, and I had a full-time job that was satisfying. Then in December of 2011, I began experiencing pain in both of my elbows. One morning, I had so much pain that I could not use my arms for the simplest tasks at work. As I sat down to call my primary physician, I felt pain in my upper legs.

I took a week off from work with the hope that my pain would go away, but it didn't. I ended up taking a leave of absence from work, one that I hoped would be temporary. Well, it wasn't. Before I could learn the cause of my pain, I was forced to resign from my job.

My primary physician sent me to a neurologist. By the time I saw him, I could barely walk.

When the neurologist couldn't help, he referred me to a rheumatologist, who in turn discovered what was wrong. I had Ankylosing spondylitis, and there was no cure for it.

The Spondylitis Association of America describes Ankylosing spondylitis as "a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort."*

Fatigue is a major part of this disability. One person describes the fatigue this way: "It's nothing like when you have overworked your garden or put in too many hours on the job. It's a totally different type of fatigue. You don't have energy to take a shower. You are just too tired to stand up. It takes all of your energy to breathe and you feel as if your life is slowly leaving you."** That description fits what I experience.

The pain that I experience can be quite debilitating at times. Rarely do I wear socks or shoes with laces because I have difficulty bending over to reach my feet. I have had moments when I struggled to lift food or a beverage to my mouth. Sometimes, it takes me 30 minutes to get out of bed after waking up. Often I cannot leave my home because the pain in my right leg does not permit me to drive safely. Shopping for groceries is strenuous. Typing on my computer is a slow, painful process because I struggle to control my arms, hands and fingers. The simple act of writing with a pen or pencil is a nightmare.

Just sitting upright can cause so much pain that I have to stop what I am doing and lie down.

When I do use my computer to write something, it might take me a week to write something that others could write in a few hours. Just writing this testimony was a long chore.

______________________________________________________________________


The above is the first half of my testimony about my medical condition.
I am posting it now so that others will understand why I might not be as active here as I usually am.

No, I am not seeking pity. Far from it. I just thought it was time for me to reveal in public something that I have revealed to a few people in private.

The rest of my testimony is on another website. If you want to read it, then you can do so by clicking here.

Cheers!

~ David

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Quote Sources:

*Overview Of Ankylosing Spondylitis, Spondylitis Association of America, http://www.spondylitis.org/Learn-About-Spondylitis/Ankylosing-Spondylitis

**Spondylitis Plus, May/June 2004, Spondylitis Association of America, http://www.spondylitis.org/Portals/0/pdfs/spondylitisplus/june_2004.pdf

Hi David,
Not going to say sorry to hear that as I don't think that's what you would want.
My mother suffered from acute arthritis and that was a contributor to the loss of her along with associated problems in 2001
It's one of those illnesses you can't really see until visible disability shows and the medical world is battling to work out.
So I wish you luck and please try to keep joining in the forums even if it's only to keep us in check!

Words fail me. I don't know what I'd do to cope. In spite of it all, your humour and compassion shine through. You're a legend

Ditto

Anyway, I've had a discussion with my schizophrenic other half and we've agreed for the first time ever that don't you even think that you can escape us that easily!
Even if we have a collection to get you one of those machines that you talk into and it types what you say ok?

Because of a different disability, a younger sister of mine uses one of those machine for her work. It's not a cure but it alleviates a lot of stress. Improved her life no end

I hope today is a good day for you, David

I agree ... your humor gets us all through sometimes David ...
thank you u really are a sweetheart

I understand a bit of what your going through ... I have Severe Rheumatoid arthritis an a little bit of this and a little bit of that ... mentally & physically ... I am being treated for all of it ... past and present... thank goodness...

I really am surprised I get out of bed in the morn ... which I am sure you are to ... the only reason I do for my self pain or not ... if and when I would not be able to take care of myself ... I have kinda prepared for that ... know way would I let anyone take care of me ...

I have been through to much + seeing others go through so much ...
know this is not for me ... so I do take one breath at a time ...becouse that is all we have ... I like you ... would not want pity ... so do what I do as long as I can ... most know this is how I feel... kinda made sure of that too ... but your very brave ... and again thanks for sharing your story... know one has ever talked about that kind of illness before or new it even existed ...

To answer your opening questions, I have no certain idea what I would do, but I expect based on observing myself so far, that I would do as I have for the other challenges that I've had to face.

I only know a tiny proportion of the pain you describe, due to a spinal injury when I was very young. On the days where "my back goes out," I find that all movement results in sudden stabbing pain up and down my body, again nothing as bad as you describe, just enough to have a hint of understanding. I imagine that the permanence of it is the most challenging and exhaustion-producing aspect of it.

From other things I've faced, I don't think that I would not try to numb myself with drugs, legal or not. Perhaps in part because I have always been short on resources, my reaction to most things has been to say some variation of "okay, this is my life now." But I would certainly do whatever I could think of to deal with it.

I also salute your way of dealing with it so far. That is the nature of the unavoidable: you can rail against it if you like, curse the gods or whatever, but it will still be as it is when you tire of that, and the gods have so far not been known to respond positively to the effort.

Hi David, I have not being here too long, from the start, always enjoy your humor and that you are part of Mingle, hopes and prayers to you, keep the faith and get better.

Thanks David, for sharing your testimony

As far as your opening questions, I would hope that if I was faced with physical disabilities, that I would handle it the way I have handled other challenges...well, maybe just the ones I handled in a good way!

David, thanks for sharing. I know you have a lot of friends on here and everyone wishes great things for. Keep in touch here.

Wow David sorry to hear you are facing the challenges you are.

Wish I could say I have no clue how I would feel about the experiences you are asking about but I do.

If you ever want to talk you have been my friends list for many years because I respect you and this doesn't change it in the least.

I get the typing is getting to be a challenge but that doesn't have to be an issue much longer. Technology is your friend. I have come up with legit solutions before and I am sure with the huge number of friends you have in Mingleland alone some of the hills you are climbing could be made easier.

For what it's worth l think you made the right move sharing with a community that cares about you and can make the journey with you. :flowerforyou

So I'm guessing there's no cure for you back on your home planet...lol..jk..

Sorry to hear life is dealt you such a crappy hand.... there really is no Rhyme or Reason to it... sometimes I think it's a test to see how strong we really are.... it's as though God says ,he knows we are strong enough to deal with this.... but really that doesn't seem fair somehow..... sometimes s*** happens and we deal with it.... I know you are dealing with it.. the best you can.... hang on to the good days and endear the bad days..... chin up old boy.!!. it could always be worse...
At least you have the support of M2. ...
..

I ve always admired your wit and the compassion you show.
You are one of the first people who reached out to me when i came to mingle.
I appreciate what you do to make us all smile.
Have i thought about what i would do if i couldn't work at my presrnt job?
For somebody not in that situation it's easy to say yes.
Would my plans match my reality? Maybe not.
I have often thought if i couldn't go to work, i would use my interpreting skills and work from home.
That being said, i don't know how i would cope with the pain that you describe.
I get migraines sometimes and the pain feels like my head wants to spilt open and shatter in many pieces.
It's terrible to say but i used to tell people maybe if i got a lobotomy i wouldn't feel so awful.
Then the migraines also started occurring on the opposite side.
I have meds now for when the pain is so awful.
I admire your courage and pray for the best for you.

hello David before anything else i would like to thank you again as i did the first time you paid attention to my request here and now this very personal and inspiring revelation you just shared. it takes more than great courage and strength of character to be able to see the positive side of a negative situation as this is very rare for us human beings . what i can just truly say to you now is that the force is really within you!!! thanks for inspiring us all

Your story gives me a sense of enlightenment and hope. It inspires me to strive to become a better person.
Thank you for sharing this. May you be able to hurdle life despite its intricacies. I wish you well.

From one severe chronic pain sufferer to another..
Cheers David!
You handle it well.
Thankfully you have doctors that know what it is.

There are good days and bad days for pain.
The pain is always there but sometimes it is just a lil easier to handle it.
May your good moments be lasting and frequent.

Oh wow! David you're such a good fighter and I applauded you for making the effort to share your testimony. I feel horrible for the pain you must be dealing with, take your time and keep thinking positive. Sending prayers your way.

David. I find your posts are humourous, positive and informative and it is good to read them here in Mingle2. Sometimes you learn something about someone that you least expect from reading their posts, and learning of your illness has surprised me, but thanks for sharing that part of your life. It is good to read that you are coping with it, as difficult as it is, and I sincerely hope your health condition becomes no worse, and we continue to read your posts for a long time to come.