Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Unable to accept my fate...

I'm in a bad place right now. I have had mild to severe depressive episodes in the past, but never once did I think there was no way out until now. This disease is a freight train that cannot be stopped. All I can see is a 50 year future of pain and misery with no end in sight and I just want out before things get truly bad. I have no freedom or control over my fate. It is the first time I have ever thought of taking the easy way out, which in this case is the only way out.

When I first read about my disease, I became sick to my stomach. What kind of god would make some people suffer that severely without granting them the mercy of death? I see people here who thought they would be different when they were young, the cure would just come along in time, only to have the disease progress all the same. All I can do is follow the same path, I can't break free. But I CAN! When I first started thinking about it, it was the first time I was truly happy while dealing with this disease, I realized I didn't have to just accept it! I would be one of the one's to beat it!

I could live the rest of my life on tons of meds and strict diet, which could slow the inevitable progression, but it is still inevitable, and I have a real problem with inevitability. I don't want any part of that path.

My dad took his life when he was overcome by financial ruin and bi-polar disorder. My mom always thought about it after her auto-accident left her in chronic pain. It would be selfish of me to do it while she is still alive, and I am committed to caring for her until the day she passes away. I won't leave here until then. She is disabled but still capable. I have good friends, but I have always been more dependant on them than they of me. They'll be very upset but able to understand, and won't want me suffering needlessly.

I have lived a good life up to this point, and am happy remembering my disease free days, but now I realize I have no control. And I want to take my control back.

I hope posting this doesn't get me in trouble with the site, I like being here.

Talking about feelings like this is a key first step and I'm sure there are many of us who can empathize with what you're going through. Talking with someone in person is a good idea too- even if they don't have AS they might be able to help you get your head around things.

As for halting the disease I think you're assessment is totally wrong. 100% wrong. I don't agree for one second that my AS will inevitably progress no matter what I do. I feel confident that I've basically stopped it in it's tracks by using a no starch diet. My disease has ceased to be a real issue for me, and the only time I really think about it is when I'm on this site or my blog answering questions. I don't take meds and I'm not in pain and I have no further restricted mobility or additional fusions beyond what was done before my diagnosis. So there is hope and there is certainly a way to stop this disease.

Is the diet strict, as you've said? Yes, but so what? That doesn't mean I don't enjoy every meal because I do. I'm a foodie and I love eating and going out to dinner with friends and family. Nothing better than a nice juicy steak, a huge green salad and some read wine;-) Lots of other choices too. And it's actually the best possible time to be on this "strict diet" because there are so many resources out there for good/new recipes. Any paleo diet website is a good place to start. Health-bent.com is good, as well as thefoodee.com. Lots of creative recipes that are easily modified to be starch free. And the key thing is that you can still eat delicious food and enjoy yourself. And you will probably drop some weight while you're at it! Not a bad side effect in my opinion.

Have you ever tried the NSD? I'm happy to help if you'd like. Contact me through my blog or PM me here and I'll answer any questions and help you get started. It has worked wonders for me and it might be able to do the same for you.

Hang in there!

Sorry, just read some of your old posts and it looks like you have tried the NSD and it did work for you but that you have some issues with sugar/carbohydrates? I am a sugar junkie too and find it challenging to restrict treats like chocolate, etc.

Find a way to take the long view with this diet. If that means eating some extra chocolate every day then so be it. But it does get better over time- I'm talking months and years. I've been on the diet for 7 years now and it has just gotten easier and more effective as the time passes.

Binging on starches would send me into a huge pain tailspin, and so I try to avoid them at all costs. If you fall off the wagon then don't beat yourself up, just get back up and try to avoid the situation that caused the missteps next time around.

I hope you'll consider talking with someone face to face about "taking the easy way out". Life is a gift and I'm certain you've got a lot of living left to do. This disease is a challenge but you can beat it!

I'm very sorry that you're feeling this way but thank you for sharing your thoughts. My thought is that different days bring different feelings, and that another day will be better.

And I agree, please talk to trusted friends or reach out to somebody in your life for face to face conversations.

The world will never be the same without you.....
Chin up.

Thanks for the help. Yes the diet worked very quickly for me. I've always had pretty severe IBD issues but was able to ignore it until AS tagged along for the ride. For me it seems the 2 issues are one and the same. I was pretty unhappy and lethargic on the diet but I wasn't in the dark place I am now, so I guess I'll take it over nothing.

I think the only thing that keeps me going is my mom and religous issues. I hate the feeling I'm doomed to eternal damnation for just wanting to escape.

Hi, The_Inflammator:

Before I was diagnosed, and when I was still in crippling pain, I considered the easy way out. Several people I know and know of with AS have taken that final step, but whether I can judge them or not, I believe they have not solved any problem, but even created more. And in fact I am here for a purpose--to pay my karmic dues and ending it all might postpone my propitiation enough that I might never be retrieved. I believe in Newton's Third Law, as it applies in every realm of existence.

By now and in the knowledge of the karma that pursued me, it would be difficult to believe that I have propitiated fully, however, I do have the unnecessary freedom of being able to eat whatever I wish and not take any drugs with full impunity.

Perhaps my gut has healed up enough and that is the right explanation. Eating starches always has the attendant trepidation of risking iritis and I never want that experience again, but at least I know what to do about that and every other AS-related symptom; I can handle them very rapidly so I am always prepared now, where I was once flailing about.

And there is always hope that enough of us following NSD will eventually encourage the medical guilds to yield to the science and develop better medications. I am working now to impress this potential upon some of the people with enough influence; we deserve our own drugs--not just hand-me-downs from RA!

We will have better treatment methods, one way or another, so hang in there and don't despair--in fact that is the first admonition of my own belief in Esoteric principles; that we can shed no tear for our own suffering, but first work to end all suffering.

AS was a useful teacher for me: "The CURSE, causeless shall not come," has some adjusted meanings.

HEALTH,
John

Let me point out a few things:

You say you were horrified the first time you read about this disease. No disease works that way. How can you be sure YOU wont have success with meds and be able to go into permanent remission more or less, or that the progression of the disease in you in the 50-year term wont be mild? -Complex hhuman nature means noone gets it the same.

Why wouldnt it be YOU that experiences the medical breakthrough that cures it? -Its going to happend to someone, your odds are as good as anyone elses. Even the hope of that is worth sticking it out for.

I'll be brutally honest here, because I think your question demands it. It's absolutely a valid question, but one that demands honest answers.

Ending it the way you talk about, is not taking control, because you wont be here afterwards. There wont be nothing or noone left to enjoy the the satisfaction of control. At best it will give you a few minutes of peace before it happends, but you have to put that up against this: Can you not see yourself having more than a few minutes of peace, joy, happiness, laughter, friends or love for the whole rest of a natural life?

Even if the answer would be yes, whats troubling you right now, is depression. It's not the pain talking right now. It's depression. Perhaps brought on by the pain, but every depression turns in the end. Wich means you WILL feel better again. Ending it, would mean you would not.

Your friends....they would not understand. Trust me. They would not understand and it would mark them and their thoughts for years and years. I've been there, too many times. It would only bring them grief and sadness. You are not terminally ill with cancer afterall.

Am I being harsh?

I almost hope so. When it comes to ending yourself as you put it...its not a problemsolver, or a way out. It's just end. Don't you dare consider it as long as there is a chance of a single good day or hour left of your life. You would be tossing away something as perfect as happiness. Leave it to God to decide when it's time to go imho.

That said, I am not chastising you for making this post, it's legitimate and probably needed. I'm just going full frontal attack on that as a plan for your happiness

Oh, and I may not be the worst hit rheumy patient, but I know a depression when I see one. As hard as it may seem right now, seek help and stay in there for the duration. I g u a r a n t e e you will look brighter on things after this. Thats is the nature of depressions, they come and go.

Love
gilth

I have no problems with people being blunt. I guess I needed to hear it. I feel better now. My pain is usually very low at noonish for some reason. I felt awful this morning. I thank you all for the help and understanding. I guess I'm mentally preparing myself to go back on the diet. It made me painfree before and it will work again. I just have to pull myself through it for the long haul this time.

Glad you are feeling better. I've been where you are now, depression-wise, and can say positively: it will be better. Like gilth says, it's not the AS causing this sort of thinking, it's the depression. Best to get that treated as well. Likely, when the AS is better, the depression will lift.

'Taking the easy way out' is a permanent solution to a temporary problem. Trite, yes, but true.

Be well. ( )

Thank you so much for posting, that is so brave of you. I see it as a way to reach out and get support and I think that is very wise of you.
I am sure so many people will respond to you, and you will see that you truly are not alone, you have support here.
I am very concerned about you. In your post you expressed what I would call suicidal ideation. My response to that is that this is an emergency. My follow up to that would be to encourage you to get yourself some really good care immediately: a therapist, who is really understanding and supportive, or whatever felt right to you.
Instead of thinking ahead, I encourage you to practice mindfulness and just be in the moment. One moment at a time.
You are a special person. Keep posting here as much as you ever want to, you deserve to be heard and supported.
My thoughts are with you friend.