Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group i'm losing my fight!

Well i don’t no what to say here, i just need to talk i guess, cant bring myself to talk to anyone near me, i cant seem to be able to control my emotions anymore, the slightest thing puts me into a tail spin and before i know it I’m wiping tears from my eyes!. I know lately I’ve been tell the new folks on here and some of my old friend here , hang in there your going to be just fine,everything will work out. I don’t think i believe it anymore myself.
The only meds i have now are oxycontin and sleeping pills. Its been five months of nothing but pain meds to keep me going. The stress level at work is almost unbearable but i have to keep working! Or we'll lose everything, the house, car , everything!. There are so many people that are counting on me to keep our organization afloat and then there’s the people and other groups we support and provide much need help too.
I cant sleep good at night , don’t know when the last time i had a full nights sleep!. I cant afford the drugs my Rhumey wants me on and i really cant afford my pain meds but i got to have them or i wouldn’t be able to get out of the house let alone go to work.

Its frustrating i seem to always be able to make others feel better but why in the h#ll cant i do the same for myself? I’ve been told that I’m the kind of guy that would give the shirt right off my back if someone needed it and i guess its true. But i feel like i have nothing left to give! I’m living a lie here, telling everyone, oh I’m fine, feel better today, or oh just a little tired, when in reality I’m dieing here! I'm spent, wasted, physically emotionally and mentally. I feel as if I’m empty inside, hallow, just a shell of the man i use to be. I've had so many moments of utter despair and a feeling of being out of control lately. I wish i could talk with someone with out the worry of breaking down in front of them! but i know i wouldn’t get two words out and that would be it!

God this frigging disease is winning and there’s nothing i can do about it, I thought I was stronger then this!

I DONT WANT TO BE DISABLED!!!!,
I DONT WANT TO HAVE RELY ON OTHERS!!!!!,
I DONT WANT TO FEEL THE WAY I DO!!!!!
IS IT TOO MUCH TO ASK JUST TO HAVE A NORMAL LIFE LIKE OTHER PEOPLE HAVE??


I'm sorry everyone, I’ve been living a lie on here the last little while. I'm not ok, I’m not as happy as my post would lead you to believe. My life is not great; I’m not fighting the good fight. I'm losing and suffering in ways i never thought i would. So until things change here i wont post anymore, I’ll stay around, read all the posts and be thinking about you all, But i don’t think i should be trying to help others here when i cant help myself. So no more lies, no more happy go luck responses to the others here , You deserve better then what i can offer. Take care


I can't Kick anymore!!!


Martin



"Trying to fly on broken wings"

I wish I had something healing and uplifting to say to you. I feel so bad that you are suffering so much. Sometimes I think we need to suffer hard to make us stronger later. Just keep on plugging away at life and hopefully one day soon this will all be a fading bad dream and life will feel good to you again.

You can do this! You are a wonderful person with a great spirit, a fighting spirit!!

Take care, and I hope you can see the brighter side of life again soon!!

Kris

Kenzie & Lauren

Macky,

It's a wear when its milder, but as it gets up it's hell.

I understand the unfairness thoughts, I compare my lot with others who are far worse.

I starting making plans for when I could n't work some time ago. Those were prudent now, but at the time I got some flak for it. I think people around me are just starting to understand.

Time to regroup yourself a bit Macky, how can you make things better, What about some anti-inflammatory's or dmards, just to slow it down again!

David

Hi Martin,

I'm so sorry you are going thru this at the moment. I really don't know what to say but just want to let you know I'm thinking of you and my heart is breaking hearing that you are suffering so badly.

When I first joined KA and was confused and scared seeing my husband suffering with this god-awful disease you were one of the first people to reach out to me and offer comfort. I hope that you do continue to post here because we want to know how you are and also I don't know if you realise just how much you help people with your kind words. You have helped and encouraged so many people here, now it is time for us all to repay the favour to you.

I don't know your medication history or anything, but I hope there is some way you can get onto some better meds to help you. I don't know how you feel about therapy or things like that but perhaps it may be something worth looking into - it can't be good for you just holding all this anguish inside yourself. Please seek whatever help you need whether it be meds, therapy or family support (financial or emotional).

Sending love and hugs your way, my friend. I hope somehow you are able to get through this black spot in your life.

Chelsea

Hi Martin,
I haven't posted in ages, but back on in trouble myself. I noticed you said you can't afford the pain meds. Have you checked into see if N.S has a drug plan for working folks. I use the Trillium drug plan in Ontario, becuase I know longer have drug coverage since I went onto long term disabiity.It goes by your income,I have too pay $1600.00 of my own drugs and it pays for the rest, of course not the new drugs like Remicade etc, but I am hearing that there are some exceptions to the rule in severe cases.ALso ask your rheumy to get you into a study it sounds like you would be a good candidate otherwise. Now if I could just figure out why I am having these stupid abd cramping I would feel better myself. This is crappy, I know but I must say it goes in waves and I have done really well the past ten years with a cocktail of Neurontin, AMitriptyline, Effexor and NSAID. The Amit and Effexor has been excellent at controling my pain and I sleep well with the AMit.(Took awhile to adjust to this regimine but I did after about a month, at first I was a zombie. The best advise I was given by a DR. was to give the drugs a chance and don't quit them because of the side effects they we subside"

Feel Better Soon,
Janet

Hey Martin

I am sorry to hear that you are feeling so bad. I can't even begin to know what you are feeling, but I do know this.

KA is a support site. It is the best damn support site out there, and if we can't support you in the bad times, then what good are we?

We are here for the good and the bad. Please don't shut your self out. Not when you need your friends the most.....Let the people here help you. Even if it is just listening.....let us be there for you, as you have been there for so many others.

My thoughts and prayers are with you and yours.

Lori

Martin I hope you get a little relief soon.I have been to a similar point i finaly just got mad at myself and started taking one hour at a time.I am now up to one day at a time.no one knows how much pain your are in unless they have this AS.Its hard every day to get up .By that i mean just gitting out of bed.Some times you have to focus on takng care of our selfs any little thing adds up to helping us feel better like a hot shower 3 times a day or any thing that will just be a small relief.I hate hearing you go through the pain it take alot out of a person.You and your family will be in our prayers.
Bradford

To the world you may be one person,but,to one person you may be the world.

Not what you want to hear but what you are saying is a text book classic case of
DEPRESSION
It creeps up on most of us on this site and probably the biggest side effect of any chronic painful condition. And yet very few people want to talk about it and this includes our health care "proffessionals".
Even then they have difficulty relating it back to AS unless you have a good doc.
You do need to have this treated asap, being male it is half the battle recognising this and admiting to some one that perhaps I do need a hand, does not help the macho ego at all.
If nothing else this is why this site is so important, because to many we are anonymous and can and will vent what is on our minds.
Think that you are doing this not for yourself but your family as they are standing by and not knowing what to say or do and yet not only your life but also theres is hell.
pm me if you need to talk more.
rat

hi Martin... your post touch me greatly....I do agree with what Rat had to say about depression and how the pain affect it and the meds have some issue with it.pls see your dr. or therapist about this.be strong.....take care GOD BLESS


We can't foresee the turning of the tide

When problems beset us and tears are cried.

Sometimes life deals from the bottom of the deck

Filling us with worry and leaving us a wreck.

The enemy seeks to devour and destroy,

Using deceptions to eliminate our joy.

While walking through the valley, our heads hung low,

The mountain top seems so high, our footsteps slow.

How many times have we traveled this road

To battle the frustrations of troubles bestowed?

Yet when we come to our darkest hour

God demonstrates His infinite power.

It doesn't matter how bad things might seem,

He always comes through, our faith to redeem.

God will not fail us in our times of pain.

He'll never forsake us, by our side He'll remain.

So when we find ourselves at a total loss

Or when the valley seems too wide to cross,

Just remember you're in His love and care,

Look over your shoulder, He's always there!

author unknown




Hope Worry does not empty tommorrow of its sorrow.It empties today of its strenght-Corrie TenBoom

Hi Martin,

Sorry to hear you feel a bit beaten at this time. I recall the days prior to diet or azulfadine (while on that) feeling much the same.... get up with pain every day, work through the pain everyday and cry yourself to sleep.... does not seem to be any way to live out ones life. But I found some answers in due time. Hopefully you find some answers as well.

Take one day at a time, remember to visit your friends at Kickas that love you no matter what happens to you and try and find one thing each day to smile about.

Take care,

Tim

If you get up one more time than you fall, you will make it through - Chinese Proverb