Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Motivation .... Where is it ?

Hi All,

I've been browsing the posts and have noticed that so many of you seem to be highly motivated to really do something about your illness. I know that is the whole point of this site, but where do you get the motivation from. ?

I've read about people with strict exercise routines, strict diets, taking of loads of supplements (all of which confuses me). Some people clearly put a lot of their efforts into researching it all etc.

I suppose I am just looking for a quick fix, but how, when the pain is so bad, life seems so unbearable, do you manage to do these things ? Where is your motivation coming from. ?

I tinkered with the LSD, but couldnt stick to it. I have tried exercise but its too painful to do and I just cant be bothered, which seems amazing really as I long to be better. Its all a state of mind I suppose.

Any tips. ?

I really dont believe I can KickAs, It has worn me down, beaten me to a pulp and I just want to give up. I am a young man (33) and cant imagine how bad I will be when Im 50 or 60.

David.

Hi David

You have to live each day as if there is NO tomorrow. Don't worry about how you will be whenyou are 50 or 60. I look at my life as if I were to get hit by a Bus today I know up to that point I lived my life joking and trying to enjoy the things I enjoy the most. Don't let AS knock you down Life is to short to be beating by AS. Take Care.

John

What motivates me? Well, pain does!!! Especially head and neck pain. When that kicks in, it gets soooooooo bad I can't drive, or work, or do anything that any normal person can do. I MUST find an answer to this back/ neck pain.

I have $30,000 in student loan debt which I cannot pay off yet.....due to pain, I am staying in a low-income job where all I really have to do is show up. I do not have a doctor willing to FIX me and I do not have a doctor that will fight for disability should I need it. I am not diagnosed with AS, I just hang out here becuase my symptoms are SO similar...also I have some hereditary spinal fusion.

BUT I am making the most of the insurance I now have, WHILE I have it, to get a few things I need done before those #%@^#&$ loan payments start piling up and i run out of excuses to hold them off.

Granted, I don't "exercise" in a gym, but I am on my feet all the time a work and that helps a lot. I do LSD, but often I slip a bit and satisfy my cravings for a bout a week or so. Then I'm OK again. I bring tasty salads to work, fruit, and no-starch desserts (like meringue cookies, yummmmm!) and they actually benefit me becuase if I have pizza or pasta, I get weighted down and VERY tired.

For supplements, I take TONS of b complex vitamins and some Melatonin at night. They really DO help. I suggest you try a complete B-complex vitamin, you'll have a nice supply of energy for the day, and you'll probably even sleep better at night becuase you get more *tired* and less *fatigued*.

Not only pain, but KickAS itself is a GREAT motivator to NEVER leave your health in another's hands, particularily with these awful autoimmune diseases.

Rox

"I, Lord Kain, shall eliminate any saccharine signatures from Nosgoth!!!"

http://www.geocities.com/artisan1998.geo/index.html

David,

Unfortunately, I know exactly what you mean. The constant pain (and also not knowing that I even had AS) which I've had for years has really worn me down. I am reading more of the posts in these forums everyday, and I am (slowly, but I am) trying to build up my "gumption" or whatever it takes. I need to make some changes in my life, and when I consider the alternatives, I know I will... eventually.

Regards,
Andy

---

It only hurts when I laugh.
Too bad I find life so funny...

David, I often ask myself the same thing. People who are really good about sticking to the NSD or exercising every day or taking all their supplements. The thing is that Rox has a point, and so does John. It's the pain that makes us keep trying, no matter how hard it is sometimes. It's knowing that maybe, just maybe, something that we do will make the pain stop - even for a while. It's knowing that pain is not all we are, that we are funny, interesting, good people before we are pain.

I've been having a hell of a time motivating myself the last little while - and I'm paying for it in a big way. My diet is no problem. The birthday cake and French dinner I had on my birthday last year taught me like a hammer to the head what will happen if I break my diet. I don't want to experience another three weeks of hell, so I don't break my diet.

But then there's the exercise thing. It's not that I'm in too much pain to exercise, it's that I haven't the energy at the end of the day, and I'm too stiff at the start of the day. I have to keep trying to make myself do it, tho, because the stiffness and extreme discomfort I'm feeling right now is the result of me not doing it. It doesn't matter how long you do it, it's THAT you do it at all that makes a difference. Because I truly believe that if you start even with five minutes a day, you can work up to more as your body becomes used to being ... well ... used in a healthy way again instead of being a receptacle for pain. I don't know about the truth of that tho, because my pain levels are (I think) less than some others here. So I could be talking out my ear for all I know.

David, a year ago I was so positive about all of this - angry and depressed most certainly, but absolutely positive that I was going to be the first person to beat AS in a holistic manner. My best friend had to remind me of that this week, because she's concerned that I'm letting it beat me. Every flare makes it harder to dig in your heels and refuse to let it win. Sometimes, I think, it's a matter of lighting a fire under yourself, and if you can't do it, find someone who can. Sometimes, you have to make a decision to not let it beat you and hold onto that decision as tenaciously as a pit bull no matter how horrible and down you feel. And when you can't hold on to it, find someone to help you hold onto it, or at least remind you of it.

AS is not all we are. It's a part of who we are - a large part - but it is not the defining part of who we are. And when you have trouble remembering that through the pain, come here and we will remind you.

Many gentle hugs,

Kat

David i suppose the same thing affects us all differently, but i have always been physically active - i'm a sailor. The thought of not being able to sail (only a moderately active past-time) in my fifties, sixties and even seventies is a huge concern to me.
I won't roll over and fall into a wheel chair for something that is beatable.
I want my mobility, my liver and a pain-free future.
Tomorrow's looking a lot better, but i agree that today is even better than that...
The only tip i can think of (if the pain doesn't do it for you) is to find something to make it worthwhile - for instance, if you are B27 positive, then your kids and your nieces may, unfortunately, get struck by this ### as well! Maybe you can offer them some assistance and knowledge...if the time comes.

Ted
"Auto-immunity or self-help - no decision"

Hi David,

I know exactly what you are talking about. It is sometimes so difficult to deal with the pain, the disability, the loss of activities and as you say feeling like your 30 years older than you actually are. But think of it this way. If there is a answer to the puzzle we are luckier than some other people who have autoimmunne diseases and there isn't an dietary answer to their disease. At one point I was willing to go to Mexico to a clinic that charged $500.00 per day just for pain relief. This was before I had found this website. I have just started the diet (day 10) and it hasn't worked yet but I am not going to give up. The things that motivate me are the pain, if I can avoid it I would be so happy. Also I am very motivated to get off prednisone. I had an Uncle who was on it for many years and basically died of complications due to arthritic medications. It is not a pleasant way to go, believe me. The diet is actually an upcoming way of eating I think for a majority of health concious people. My GP wrote a book about it though not from an AS point of view but from a health point of view. His diet isn't as strict but generally the same idea.
So I have his go ahead on it. I am finding myself a little less hungry on it than at first, but I admit I am still feeling deprived. I think maybe get yourself physced up and then go for it. All you have to do is look on this website for support and encouragment and answers to just about any question you could think of asking. Good luck David. Its not an easy road but you can do it.

Deborah

It can be hard to motivate through the pain and exhaustion caused by AS. Sometimes I find my self motivation is cyclical. I have ursts where for months I am very active or seeing all the Doc's or maintaining a strict diet.

I then follow these with perods where I refuse to see Doc ... at all. I also have periods where in the pizza vs. pain equation a pizza wins out. I also go through weeks where there just isn't the enrgy to exercise as much as I should.

This being said, I think its just an acknowledgment that I'm human, early on I motivated myself with fear. Fear generally works. I was diagnosed in my early teens and fused left hip by 17 or so. I knew as bad as I felt then and as bad as I feel today it more than likely I will feel worse five years from now. This sounds depressing but its not. FOr me its motviational to do things now and whether I want to or not to stay more active than I think I am able.

I took up golf in my late teens because I needed to participate in a sport where running and lifting wouldn't be involved. I played 3 times a week at the crack of dawn in my late 20's and early 30's because I knew I would get worse and not be able to later. I still play now but no more crack of dawn and only 12 or so rounds a year but if I catch myself getting lazy I get out there no matter how well or poorly by my standards I'm going to play.

5 years ago one sweltering hot day I played with 3 guys all about my age and all very fit. One opted to walk so I did also. The two guys who rode the round in the heat thought I was nuts. I always preferred walking if I could but in big time heat with my posture and a slow long round its probably not a great choice. I don't remember if I played particualrly well or poorly but I remember the round because it was the last time I walked 18 in 100 degree heat. I had a great time.

DO it today in case you can't tommorow. Sounds like a menacing propositon but its better than regret.

 
stevec-they also serve who stand and wait

David,
Don't get down on yourself right now for not feeling motivated. I think most, if not all of us, have been in that same spot. For whatever reasons. I used to have no motivation at all. I was just too dang tired to fight. Going through doctors that either had no clue what I had, or doctors that just didn't care. I gave up. I decided forget this, if even a doctor won't help me, then why bother helping myself. And normally I am not that type of person. But with the pain and more so even.. the fatigue, I just couldn't find the energy for more than sitting here.
But luckily my Mom talked to her rehabilitation doctor after she had her hip replacement about me. Told her my luck with doctors and my decision to just stay away from any of "their kind" lol She asked if I would see her once. For my Mom I gave it a shot. And I am very thankful I did. Even though she admitted not knowing much about AS, she was willing and able to refer me to doctors that did. The best thing she did for me, in my opinion, was send me to aquatic therapy. She did understand how hard it is for anyone... with any type of arthritic condition to exercise without pain. In the warm water I can exercise like crazy and not hurt any joints, or feel pain. I started out slow, with just 10-15 minutes at a time. Now 3 months later I hate it that I only have a 2 hour time slot I can exercise in.
In my being able to exercise again, some of my guilt has eased. That was my biggest problem was the guilt of being "sick" I knew I was capable of more than just sitting, then laying down for awhile when that hurt too bad, then sitting...and on and on....
But I just couldn't do more than that at the time.

Sorry for going on and on. Its just that your post really hit me. I didn't even realize myself how far I have come mentally as well as physically in the last 3 months. I want to smile and cry at the same time thinking back to when I just wanted to curl up in a ball and have my life over with. My two boys were the only things keeping me alive. I want to smile because now that I am able to do something for myself physically it is helping me heal mentally as well.

So please don't give up. Don't be too hard on yourself for not feeling motivated. Just take one day at a time. Try something new to fight this every day. Even if it is something small, like hot showers as soon as you can get out of bed. Try it. And if it doesn't work for you..... let it go and move on to another thing to try. Because one of the greatest things I have learned from this wonderful site is, what works for some people... doesn't work for others. I wish it were simple and there was just one plan that would work for all of us. But there isn't. We all have to just keep plugging away until we find what helps us. And even that can change. If something stops helping, try something different. Just keep trying.

Hang in there. One of these days someone will be posting about you.... saying how motivated and positive you are. Then you can look back at this thread and smile, knowing how far you have come.

Take care
Pam

My boys, Noah & Isaiah

Steve I want to thank you for this:

"It can be hard to motivate through the pain and exhaustion caused by AS. Sometimes I find my self motivation is cyclical. I have ursts where for months I am very active or seeing all the Doc's or maintaining a strict diet.

I then follow these with perods where I refuse to see Doc ... at all. I also have periods where in the pizza vs. pain equation a pizza wins out. I also go through weeks where there just isn't the enrgy to exercise as much as I should."

I'm in one of those periods right now. I'm going to the doc. but I feel so little motivation to exercise it's not funny. I can feel my body stiffening, and I'm so darned sick of the whole thing I've thrown up my hands and said "I DON'T CARE!!"

But of course I do care, and being me, I've been pretty hard on myself about it. Hearing that you, whom I admire so much for your perseverence and grit and sense of humour, among other things, also have periods like this really does help.

Thanks again.

Many warm fuzzy hugs,


Kat