Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How Do You Cope? Response to Quote from Trudi

Hey emmab
I think that what you are going through right now is the same thing that any number of us have gone through, or are going through. I know I can understand your position.

Good days and bad seem to be a part of this merry go round that we ride. You feel pretty good one day and think that going back to the office is right around the corner. Then the next day it hits you like a truck. You don't know what to tell your boss, or anyone for that matter. And you begin to question yourself as much or more than others do about your condition. I can't sit, walk or stand for very long, but I don't feel disabled. I can't make it to work today, but I can work around home. Or today you are so worn out that you don't want to get out of bed. What's up with this?

Yep, that is the life of an ASer. One big question mark, and no solid answer. Our lives sometimes seem to be a continuous contradiction, good for awhile and then bad for awhile. All we can do is hang on for the ride and turn to the great folks here when we hit a rut.

Keep Kickin'AS
Chris

I too understand what you are going thru, I have even put myself in such denial that I ignored the pain and the warnings my body was giving me..I went 10 years without seeing my Rheumatologist and what it got me was torn tendons and a state of chaos in my body right now. I have now come to terms with the acceptance of my condition. And fight everyday with trying to listen to what my body is telling me and not over do. My chistmas tree is only half decorated because I will not get on the ladder and that is okay this year. My husband has been working long hard hours so he had not been abel to help, I am more grateful that he is working in these hard times then I am upset with a half decorated tree, In the past I would have done it myself and ered; not anymore. I know it is hard for others to understand what we are going thru.. Many have never heard of AS.. Even Doc's have scratched their heads and ingnored the history when I have told them that I have been diagnoised with AS saying that it is a "Man's" diesiese.. Making me feel like I am not, or should not feel the way I feel.. NO MORE.. I am listening to my body from now on.. I have nothing to be ashamed of I will take one day at a time.. OK I am rambleing now.. Sorry..So glad I found you all.. I can't wait to get to know you more.

Hi emmab, I hear ya. I'm in my first year.
One day I am so mad at my family for not taking this seriously. Why isn't it on their mind 24/7? Why aren't they totally freaked out?
Next day I am the one in denial, acting as if it were all nothing, and behaving foolishly (eating starchy, having that 1 cigarette at a party, moving furniture)...
I think having a foot in either door is exhausting. But it's probably all part of acceptance, too.
I also feel like a fraud, because I'm not in a wheel chair, because I'm HLA negative, because I want it to be so. But I'm pretty sure that hanging out at this site will bring (eventually) a rational attitude towards all of this that will lead to productivity and the best possible health, as opposed to fear and isolation. It sounds to me like all your questions are the right ones (because they sound like mine), and you're on the path to doing well for yourself!
Good luck!
CC

I feel like a fraud also sometimes. After reading these posts and hearing how bad so many of us have it I dont feel I have any right to complain. Even at its worst my pain isnt REALLY bad. I do have trouble with the fatigue and flairs DO hurt but they arent that bad. I started enbrel a couple months ago and Im wondering now if maybe I'll be lucky and it wont get any worse. I just try to stay positive and realize how fortunate i AM that its not any worse.

I know people think that I am a fraud at times. I ran a marathon I must be in good health. Many times by 5:00 PM I am just totally wiped out. The fatigue is really bad some days. I know a big part of the problem is I don't sleep well at night. I have AS and MS, both come with fatigue. My neurologist said it is hard for her to tell what symptoms are caused from the AS, and which symptoms are from MS. I don't dare tell anyone at work that I have AS, and MS. I know it will come out someday, but for now I just keep it to myself.

good luck, and keep up the fight.

One thing I read here in this thread is a feeling of guilt for feeling your pain and thinking that it isn't as bad as others.

My thoughts on that are that your pain is just as real and just as severe for you as mine is for me. Whatever we are dealing with is tough at that time. If we have a bad toothache, that is tough. If we have a sprained ankle, that is bad. If we have a broken bone, etc. etc.

I never mean to discount anyone's pain. I think that we deal with whatever we have to and if it were worse, we would deal with that.

I am sorry you all hurt and who is to say that my pain is worse than yours? Maybe I am wimpy.

I had a dr. once ask me if it helped to look around and see people who were worse off than I am and I told him "No, because this is me and my life and if that were me and my life, I would deal with that." I don't think it helps anyone or anything to think that "At least I don't have ????." I am thankful I don't but if I did or ever do then I will buck up and deal with that at that time.

Your world has been turned upside down. You have to let yourself grieve your losses and then you will be able to move on with the "new" life.
You have many losses and it IS a big deal. I am sorry this happened to you. I know you are young. I fought these diseases for a long time and kept going until I was at work on a Friday and in the Hospital on Monday never to work again and 9 months before I was able to clean out my office. If I had listened to my drs. and took disability earlier, I might now have been as sick as I am today but then again I might be. Who knows? I took disability at 43 and had a terrible time holding on those past few years. I only did with the grace of a wonderful employer.

Sitting for any length of time just can't be. That is why I am not online much. Standing long enough to fix a meal just kills me. I just am up and down changing positions all day and all night. I understand everything you have said.

Come here any time or feel free to PM me or Email if you want.

I wish you the very best and hope you feel good enough to enjoy the holidays with your family.

Blessings.
Possi

Hi Emma, this is one of the toughest things with AS. So many of us look healthy, we're functional (whatever that means), but there are so many times when we feel neither of these.

I think one of my saving graces with this is that I lived my life for so many years, coping and persevering, before my diagnosis. In retrospect, there is so much I could have accomplished had I not had AS, but since I didn't know I had it, it didn't stop me. I just figured everyone else felt these things, they must be 'normal' if I was feeling them, so why be 'self-indulgent' and give in to it (the pain, stiffness and horrible horrible fatigue and lack of energy). How wrong I was, but thank goodness for that. By the time I was diagnosed, I figured I'd been working and living my life to that point through it all without knowing 'it' had a name. Why stop now that I knew there was a problem?

The phrase 'self-indulgent' by the way, is not meant to be judgemental of any of us. It's just the word that was used to describe me on those occasions when what I was feeling got ontop of me and I did succumb momentarily. Being labelled in such a way made me determined to prove 'them' wrong. That is with me to this day and I'm grateful for it. I remain determined to live my life. I fight every day for it. Sometimes I think I'm being stupid about it ... I should take the day off when I feel lousy (but I don't), I should rest when I think I need to (rarely do I do this). All of the labels they pinned on me (lacking in self-discipline, self-indulgent, lazy) served to fuel my tenacity. I'm d*mned if I'll give in to this and let it steal my life.

So, that's how I do it. I make myself get up every day and go to work, no matter how I'm feeling. I figure, I might as well be at work doing things that distract me, instead of sitting at home feeling lousy and useless. I might as well be sitting infront of my computer working, instead of sitting infront of the TV. At least, when I'm at work accomplishing things, I feel good inside, even when my muscles and joints are screaming for relief. And the walking I do around the office delivering work keeps me moving, which I most definitely wouldn't be doing at home.

But that's my way of dealing. I push through it. I don't know if this is the 'right' way, but it's my way and it works for me.

Hugs,

Thank you all for your understanding and wonderful responses, and letting me rant!

As many of you say, pain is a personal and relative thing; just because my spine isn't fused or I'm not in a wheelchair doesn't mean to say it dosn't hurt. I spent this afternoon baking for my family for Christmas, and now ache like mad and am exhausted; I was only stood up for two hours and was constantly moving around, but it has killed me

Possi, your comment about the doctor saying to look at people who are worse off than you really rang a bell! I was diagnosed with insulin dependant diabetes at the age of 5, and remember as a young child crying to my Mom "Why me? It's not fair". She used to remind me how much worse off a lot of people are, with cancer and various other horrible diseases, and my response was "but I don't care about them, this is what is happening to me, and I'm having a tough time with it". She meant well, but without having the condition herself (even though she knew all about it from having to care for me) she couldn't begin to understand.

I eventually came to terms with the diabetes, and find it doesn't impact too much on my life now, and I'm guessing given time I will come to terms with this too. I'm generally a very positive person, but sometimes you can't help but let it get you down.

Like Kat, I did keep going with this for years, not realising at the time what was causing my pain and tiredness, and why I seemed to pick up every viral infection that was going; I envied people who hadn't seen their Dr in years, and never seemed to get ill. Even once I had a diagnosis and was having major problems with aching and exhaustion I kept on going, until my body said "enough is enough"!

I'm not going to give into this, but guess I do need time to "grieve" for the me that I have lost. They say acceptance is half the solution, and I am getting there, but it is frustrating to be so restricted in what I can and can't do. I am very lucky in having a loving and supportive partner, who takes this seriously and regulary tells me off when I do something silly!

As to work, I have a second occupational therapy appointment in the New Year, and the doctor is very understanding and wrote in his first report that there was no way I could work at the moment, so at least my HR department know I'm not faking it! I may see if there is any work I can do at home. Unfortunately my office is very small, with not much opportunity to move around a lot, and 80% of my work is on the PC.

As much as I want to get back to work, I don't want it to be to the detriment of my family; why should work get the best of me, and my family end up with an exhausted, grumpy and in pain me? I don't think I am being selfish here; in the last week I was at work I was falling asleep on the sofa at 6pm every night, and doped up with meds.

Thanks again for all your support

Emma.

hi emma,

a long time ago, my husband said to me, "it doesn't matter what others think of your problem, if its a problem to you, then its a problem". i think its good to see how others cope,but don't measure yourself against anyone else, only you know how you feel and what you are up to doing.

my problems came on gradually, so i guess i've developed a lot of coping mechanisms and sometimes when i look back, i can't believe i kept going under the conditions that i did. i tend to just look down, forge ahead, and live in the moment; i have this stubborn streak and almost nothing keeps me down. i don't think that is the wisest, that's just me. however, on the other hand, i've given up a lot, i don't do anything but what i feel is absolutely necessary; meaning less housework, less perfection at work, streamlining a lot of things, giving up things like not writing christmas cards for 10 years whereas i was a big one for that. like kat, i figure, if i'm gonna be in pain, i might as well be at work, rather i play hookey on my good days some times if i can. i also find that the days i sit at home i feel worse than when i'm moving around at work. i try to move around at home, but its not the same.

we all have different kinds of jobs which makes it easier for me to work even on my bad days as i can spend half the day laying in my office on ice behind a closed door in between doing things. not many jobs afford that kind of flexibility.

sue