Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I think I need help.

OK, I can't believe how hard this is. I think I need help. I don't think I'm handling the whole AS and pain thing as well as I thought I was.

It seems that I've been really nasty to people in the last little while. Really nasty - to the point that one woman at work isn't talking to me any more, and I made my mom cry on Sunday. I don't realize I'm doing it at all, which is even worse. I'll be going along doing just fine, and then I'll get irritated about something (and I may even be justified) and apparently, I get nasty and hurtful. It passes just as quickly as it comes on and I literally go back to being in a fairly good frame of mind as if nothing has happened. Which to me, it hasn't.

Guys, it kills me that I'm hurting people. It kills me that I'm not even aware I'm doing it. I've spent my whole life hyper aware of other people and I've spent the last few years working really hard on not bleeding my emotions onto them. And now it's happening without me even realizing it and I feel like I'm going to go over the edge sometimes. I don't know what to do, how to handle this.

I don't even feel capable of a sense of humour right now and yet, a lot of the time I'm just fine. I've called my psychiatrist to see if I can get an appointment with her really soon, but I think she's on vacation. It's August, where else would she be.

I think I'm in a mini-flare with my hips and neck and that just kills me because I've been doing so much better, but there are times when my neck hurts so much it's all I can do to keep from ripping my head off because that'll make the pain go away permanently. Advil helps and I've been taking that, but you know that the more I take the less effective it'll be. And my lower back is constantly sore and stiff, my hips hurt like a son of a bitch sometimes. I've started doing my exercises first thing in the morning, to make sure I do them, but oh my god - have you ever tried to do those damn things at 6:00 in the morning, two minutes after you get out of bed!!?

Anyway, any suggestions would be appreciated. Any indication that I'm not a total bitch, which I know I'm not - but I made my mom cry on Sunday and that's not right.

Kat

Hi Kat,

Sounds like you've found that part of AS that ain't so pretty. I think we have all been there at some point, and some of us return there from time to time.

Chronic pain can make us do things we wouldn't ever dream of doing normally. Without realizing it we take our pain out on those around us, and those that are closest to us. Even though we may have become used to the pain and it doesn't seem to bother us, it still grinds away. Our tempers become very short, and the littlest thing sets us off.

Some of the meds we might take can make us pretty moody and short tempered also. Even though you won't find that in the side effects on the bottle.

AS has this dark side and it can become a very deep place also. You have taken the first steps to digging yourself out of this pit. You have realized that your hurting people that you love. It takes strength, both physical and mental, to deal with AS. And even the strongest sometimes need a boost. I know the members here have Kicked My AS* out of that hole on occasions. If you need friends to talk to we're here, and we really do understand and know what you feel...

Keep your chin up and
Keep Kickin'AS

Chris

Kat,

As Chris said... this is the dark side of AS - and at least you may have recognised that it is potentially causing problems with other people... this realisation is valuable as you can do something about it.

I think you can never guarantee to not "have a pop" at someone.. that's not realistic, however just talking to those that you feel you may of hurt already and tell them how you feel and why you may of snapped is a huge step.

Also by telling those around you who you consider close a little more about what AS does to you may pre-empt other people from feeling hurt in the future.

Ultimately no-ones perfect and with the suffering AS causes you have every right to lose your rag occasionally... I'd lay money on the fact that probably everyone here on this site has reacted badly to something someone has said / done because of AS effects... whereas if they were not in pain etc it would have gone un-noticed

Failing that, you can always come and have a rant at us instead

Take care Kat - your'e as normal as someone with AS can be!

Regards
Jo

Hey Kat, no. 1, you are in no way a bitch. Having read your insightful and supportive posts recently, I know this to be true. You are great. Got that???

No. 2, you are in flare at present, i.e. the biggest reality-checker; energy-sapper; tolerance-removing experience that every one of us has unwittingling had to go through. And what do we do when we are in so much pain and feel so completely vunerable and fearful of the future? Yep, we take it out on those we love. KickAs'ers KNOW what you are going through, our friends and family don't always understand and somethimes that lack of understanding can drive us NUTS and make it all come out the wrong way. Hey Kat, as a nurse I see people take it out either (a) on the family or (b) on the ward staff, and believe you me it is always a huge relief when it ain't us that cops it. Usually the relatives are just totally mortified and embarrased on their behalf, but that's just something else they feel worried about despite our assurances.
Heck, it's just a coping mechanism, yes, a mechanism that seems to be in need of a complete overhaul and jumpstart sometimes, but one our collective psyches have employed since.....wheeeew, how long??? It just hasn't caught up with our fast and frantic lifestyles yet, so phwoooweee to it, let it start it's work and in the meantime try and think damage limitation - which is easier said than done, right??!

Kat, I bet the reason your mom cried was seeing her little girl in pain. No mom ever wants to see that - and it doesn't matter if her daughter's 14 yrs old or 44, she'll still be her little girl and it'll still hit her hard, right to her soul. Maybe the potential hereditary factor has something to do with it too??

With the exercises, why not do the warm-ups only early a.m. to loosen up and then do the rest late afternoon and maybe this would help you regain your inner calm again? (I know you love Pilates)

Hope you are feeling a whole lot better soon and back on the serenity trail

Take care hun,

Jan

Kat,

I know where you are coming from. Sometimes this old AS and the anxiety and emotions it brings with it can be diffcult. I have seven men who work under me and sometimes I am just down right ugly. I usually am not this way. After a long painful flair though I can sometimes say things I wished I could get back. I have started to really think about what I am going to say or do now and have done much better. Man it takes a lot of self control and when your in pain 24/7 sometimes you loose a little. Anyone who knows this AS will understand and those that do not will not understand the emotions we go through during these bad flairs. When around family at home if I have been in a great deal of pain and feeling miserable I just go to the back and lay down for a while and then come back. If I still feel anxiety about whats going on around me I will just go back again. I usually have these problems after a bad bout of AS for a week or so. Stay stong people will forgive us for our short down falls. We do not intend to hurt anyone or their feelings and I think most of us do a great job of this considering we have to handle lifes ups and downs during bad bouts of pain. Heres a get well hugggggg! It will be O.K.

Rickey

Sorry to hear you're pains are turning you a wee bit surly. I know that for me it happens inevitably time to time and there isn't much I can do but try to bite my tongue. Very hard for me.

In the interim I can offer you my top ten anger busters. Ways to vent without hurting the feelings of loved ones.

10. Elvis the TV set. Always fun. Recommended weapon double barrell shotgun. Usually wait for a Rosie O'Donnell type show to pull the trigger.

9. Purchase one stuffed 6' tall Barney the purple love sharing kiddie dinosaur. Now purchase chainsaw. Place both in living room and let chainsaw rip on Barney. Even thinking about that one brings a smile to my face.

8. Barry Manilow crush. Go to home of that friend who won't admit his/'her adoration of Barry Manilow but he/she has stacks of Barry albums. Grab as many as you can. Place in busy intersection and let the smile grow across your face.

7. Homeshopping hijinks. Get together with a couple of friends. Share some drinks and late night heart to heart chat. Unbeknowst to them this is really a Survivor contest. First one to fall asleep, grab his or her credit card and order 4 of the cheesiest Home Shopping Doo-Dads to be delivered to their home.
When they come weeks later and you get the dismayed call. Just say surprisedly that you couldn't believe that he/she got drunk enough to order that stuff.

6.Oh alright- chatting with or griping to ASKickers does seems to help.

5. Mail large sums of cash to your favorite ASKickin lawyer friend. (well it won't make you feel better but I think it will bring a smile to my face.)

4. Read #9 again. Cause I just love that chainsaw Barney massacre theme.

3. Break out photos of your most recent get together with other ASKickers.

2. Blowtorch Britney Spears. Yep, all the free Britney posters that are being given away at local gas stations are available to you for free. Grab handfuls away from adoring 12 year old Britney wannabees take them home and torch the blonde twerp.

1. PM assault on your favorite and my favorite UK royalists Lod Paul Simpo.
Try one now and get a friend to join in clogging up his PM mailbox. I'm gonna do it myself right now.

 
stevec-they also serve who stand and wait

Edited by stevec on 08/14/02 09:31 AM (server time).

Hi Kat!

Been there, done that, have the T-shirt, don't want the mug. I think I have been doing better since I found this place. Because I can talk here, say what I want, and express my pain and my anger when family do not understand, I find I don't get as irritated with my family. Just being able to rant and roar here saves my family! So far no-one here has told me to get lost!

I find that the only time I really get angry is when my family won't help me when I am in a flare. For example, I had a bad hip flare and the only way I could move around was using two canes. I don't like to be a burden to my family. I hobbled into the kitchen and made myself a cup of coffee. I couldn't carry it back to my chair because I needed both hands on my canes, so I asked my husband if he would carry it back for me. He snapped, "What are you, an invalid?" I ripped up one side of him and down the other, and I'm not sorry. I didn't ask him to make the coffee for me. I do what I can and don't expect to be babied, but hey, sometimes I need some help and I think I should be able to expect it from my family. I am still working, bringing in money, and most of the time I am not slowed down by the AS. You would think they should be grateful!

I gave him one well deserved blast, and I stayed mad for the rest of the evening. I came here and vented and received many sympathetic replies. The good people here saved my idiot husband from a whole evening of hell from me! (He's not an idiot, really, and is a good man, but sometimes he says exactly the wrong thing.)

Oh oh, I am ranting and raving again! Just thinking about it makes me mad, so I'll move off that topic.

Come here when you are angry. We'll rant and rave right along with you!

Val.

AMEN !!!!
This is the place to come Kat.
Even though I now have more support at home - there is still more understanding here.
I don't believe that our friends and relatives who do not actually have AS can ever really know what it feels like - no matter even if they try.

Kat - when I met you, I found you to be one of the most supportive, kind and understanding people I have ever met. Truly.

All I can say is that - again - to keep your sanity - this is the best place - no matter what people around you are like

HUGS to you Kat

We Love You



Maggie

Well Kat, from the gal I met at the party, you seemed to be one great person. Trouble is that you are experiencing the same thing that came over me one certain Sunday evening. It is the pits when it does creep up, and at the time you never really notice it, except in my case it seems to be getting regular enough that I can recognize it most of the time. Just not all of the time. Wish I knew of a cure, but for now we have KA to help us through it.......

Doug

Buster & Alisha taking a break

You're definitely not alone...fortunately I find myself taking it out on overzealous salespeople instead of loved ones.


This bunny Kicks AS !