Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I'm new & need a shoulder.

Hi David,
Feel the need to comment seeing I am on the "Healthy" side of the fence. As I told CoCo, I am ashamed in the beginning that I doubted Mike, I don't think I was necessarily mean to him, but my thoughts were...I had no patients and I was starting to resent him and doubt every moan & groan and move he made. Fortunetly (Thank God) I snapped out of it. It's too bad your ex, didn't. I am glad she is somewhat better to you now, but she sounds very selfish and that is just not something you can be if you are in it for the long haul with a person with any chronic illness. I do think it is so important though to look at both sides. I have said this many times before that even though the AS sufferer has it sooooo much harder, the person living with, loving them, or just taking care of them is affected big time. In my case, I am the person who loves the AS effected. I remember at one point awhile ago, I was trying to tell Mike my feelings on all of it, how I felt the need to grieve our losses, vent my frustrations and fears etc and he said to me "why would this disease effect you?" I just sat there for a few minutes before I scraped my jaw off the floor, I thought "are you kidding me?" Then I explained to him the following: Remember how helpless you felt when I was in labor for 43 hours and then delivered Jacob (Our last baby), well that is how I feel everyday...helpless, I want to ease your pain, I want to fix it, but nothing I do seems to be enough and all my efforts are in vain. I really think this scenerio helped him understand my place. It is so hard to watch day after day the one you love suffer. You want to jump in and rescue, but then they feel like you are treating them like an invalid, so you back off and let them do things for themselves and then you are not doing enough...it's a double edge sword. But Thankfully, through lots of trial and error, we are finding balance. I guess the most important thing for me was to get out of the denial state I was in. Acceptance is so important and my belief of "Love conquers all." So even though there are still many days that are hard (all days for him are hard), I have a new outlook and appreciation for life. I am so thankful diseased or not diseased that I have the oppurtunity to spend my life with the man I love. So his body don't work like it use to and I won't lie, that really sucks, but his heart and mind are there, I am thankful for the memories of the healthy days and just as thankful for the time we have together now. Ok, I apologize for any typos, This letter turned out way longer than planned and well, I'm too lazy to go back and fix it lol. Take care, & God bless, Sheila

Sheila, thanks for sharing that. I know this disease affects Dave (dh) too. Sometimes he gets upset because I can't go out with him & the boys. The summer is really bad for me. The sun seems to suck everything out of me in minutes. It's always made me sick. We started going to the zoo & parks later at around 4 & that was working out perfect. After 4 I seem to be able to handle it. What bothers me is when ever anyone mentions there spouse being like mine they usually refer to them as there x spouse. I'm hoping someday he'll come around completly & it won't tear us apart. I've read him my Dr reports David so he knows. I guess it a real blessing we don't look as bad as we feel. We shouldn't have to prove to anyone, especially our loved ones that we are ill. My brother who has AS has a really good marriage. Some how it seems that the women are more understanding & aceepting of the disease if their spouse has it where the men are not. Men don't like to show there feelings & they must fix everything. Maybe in Daves mind putting the laundry upstairs & buying me things to make my life easier is the only way he knows how to fix it. I really do try & understand what goes on in his mind. I admit I'm not easy to live with, geez I think living with a grizzly would be easier then living with me at times. Dave is usually a very happy man but when he gets sick he is so miserble, snapping at me & the kids. Ofcourse I don't get upset cause I understand how miserble one gets when the feel like crap but I say to him - See that's why I'm so miserble because I feel like crap. He use to take it personally when I'd get mean until I explained to him it wasn't him or the kids at all. It was me full of anger fatigue & pain that I was so angry at. I think I finally got through to him in that area so we have made a little progress. I would love to hear more from people that have to live on the other side of the fence so I can understand him better.....

Hi CoCo, Welcome to KickAS.
I used to have a problem with my parents that sort of relates to your post. I think they were trying to make things tougher on me because they refused to believe what I was going through as a kid, growing up with JRA and then later diagnosed with AS. I felt like I was abused and not taken care of the way I should have been taken care of during my troubled younger age, I can't get into most of the details now, because I still have some bad feelings about my family relationship towards me.
I am married now and now I am going through the complete opposite. My wife wants to do everything for me while I just sit around and do nothing. I can tell that she gets upset when I do things for myself when she goes to work. The she'll come home, rearrange things back to where she likes them and says "Why didn't you wait until I got home?, you could have got hurt. She works 2 jobs and cooks and cleans our apartment, but yet she gets upset when I try to offer my help around the home. I can't even go outside by myself because she thinks something terrible is going to happen to me. She means well, but I would like for her to give me something to do once in a while.
As you what you were talking about, your husband sounds to me that he might be havig a hard time accepting you have so many health problems, and is trying to block it out of his mind. Maybe he can't accept that your health has changed, and he want's to ignore the health problems, rather than deal with it. I think that is the problem I had with my parents and the rest of my family. I really think he could help you out tremendously if he could open his eyes and see that you have a problem, and help take care of some of the responsibilties. Bottom line though, I am thinking he is afraid.
Hope I didn't get out of line here....
I wish you the best, take good care,
James

Hi Coco...sound very familiar.I have the same illness except AS I think....haven't got check for it yet and eveything you said was true for me too ...even my husband still do not want to believe it with my worse days when I barely can get out of bed or try to do some work around the house......I know he knows something is wrong but he want to stay in denial...I guess I use to be so out going...he help me alot though....w/grocery,cooking,dr. appts...soon your husband will come to his senses.....have him to read more on your conditions,he can start right here on this site....take care

The great art of life is sensation;to feel that we exist,even in pain_Lord Byon

Hi CoCo,
I sent you a PM...... Hope you are having a good day today! Sheila

CoCo,

First off, welcome to KA. I am relatively new here too, but I wanted to let you know that I've been going through exactly what you've been talking about. In fact, I recently posted a similar note "Just blowing steam".

My hubby and I are going on twelve years together, through thick & thin, but as my illness has progressed, it's definitely gotten "thick"

You can read my old post if you want to, but what I want to let you know is the good part...he has come around slowly. There's no "ex". My husband is a "typical guy" (no offense to any guys around), he tries to fix things, and not being able to fix this was killing him. Being the strong silent type, of course he couldn't put that into words, but our relationship was really starting to suffer.

He used to go to rheumy appointments with me, but he couldn't go in with me because he couldn't handle watching the injections. Just like MrsMal's labor analogy, he couldn't see me in pain. So he'd take me to the appointment-then sit in the waiting room

At one point he completely stopped asking how I was, would constantly badger me with "what's wrong?" as if I were simply in a bad mood and wouldn't "get over it".

In the end I think that in any relationship that has staying power, both people need to be understanding. When I stopped being angry that he was so insensitive, and backed up enough to see the way the things he DID do showed that he does care, I was more able to communicate to him what I was needing.

We had a long talk, and I explained that even though he can't do anything to fix the disease, the things he does do for me (cooking dinner when he's home, carrying laundry baskets, keeping me company) help to make it more bearable. And even if I can never say "Wonderful!" when he asks me how I'm feeling, it's just the fact that he asks that tells me he cares.....And now he asks.

I know that my hubby loves me, and I realize it can't be easy for him to have gone from watching me work to jobs while going to college full time and raising the kids, to barely able to work one job. From hiking, climbing, and biking with the family, to walking with a cane. But he's still here....that counts for something.

As for being a mom, I may no longer be able to race my kids to the top of that mountain, or bike circles around them down at the park, but I can whoop the pants off my son in card games, sit and paint with my daughter, discuss good books with them both, and tell jokes and silly stories and laugh til we cry.

Life hands us some wicked curve balls. But don't overlook the value you still have as a wife and mother. Take baby steps with your hubby. If he's still standing there, I'm betting he's just wishing he could "fix it", or help. Be patient with him, and try to talk things out.

Chelle

Hi Everyone. Thank you for all the wonderful replys. I can't believe how much better this has made me feel knowing there are others out there going through this too. I have been alot better with dh which in return he has been alot better to me. Ya get what ya give I guess. I was in a terrible flare there & when I get like that he gets it bad. I'm feeling better now. I just wish he would take the hint when I feel so rotten that I need help. I guess he does in other ways like he'll cook a meal that will last a few days so I don't have to. I get feeling so overwhelmed when I'm flaring, I just want to sleep & sleep but that's impossible with 2 kids. I have started to put myself in his shoes & am trying not to throw blame his way anymore. It's not his fault I'm sore & tired. You really do hurt the ones you love don't you? I know I need to see his side more & stop focussing on my wants & needs. Thanks to all you wonderful people that took the time to reply I think I can finally find an even balance. It may take some time but I have to do this if I expect our marriage to survive. All your replys have helped me make my decision & helped me to see it's not just me who is affected by this disease. It affects everyone & I'm not the only one suffering....

Hi Co Co

Sorry but I havn't read all the replies yet so forgive me if I am repeating at all.

I just want to say that when I first joined KickAS, I had the same problem that you have. No, understanding from my spouse at all really.
Our turning point was when we attended a KickAS get together in Toronto. My husband observed and listened to others. Before the trip was over - his attitude had drastically changed. It isn't allways great now but overall, it has remained far better than prior to the Toronto gathering.
I see you live in Ontario - may I ask where ? If you have any chance in the future, I recommend that you attend any get togethers that any of us have, and be sure to bring your husband along. Hopefully, this will have at least some good effect.
Somehow, meeting others with the same or similar ailements, seems to validate us, in our husband's eyes.

It all takes time Co Co. Do the best you can and don't let others make light of you.

Maggie

Hi Maggie, I live in Brantford... home of Wayne Gretsky. Not sue I spelled his last name right as I'm not a hockey fan.. Once I get to know you all & get comfortable maybe I will join the reunion. I know dh won't & that's OK. He will have no part in this disease. I'm hoping things will go upward from here. I had to give myself an attitude adjustment. Thanks for replying. Are you from Ontario too?? CoCo

You're in Brantford?! I'm in Toronto, we have another TO member, one in Oakville, one in the Haliburton area, one near Smith Falls and our beloved Mags in Ottawa. And Cheerful in Gatineau (it's so close to the Ontario border that I consider him an honourary Ontarian. [Kat ducks and runs for cover]

We also have a member in Cambridge or thereabouts and another in the Burlington area.

We GTA types try to get together at least once a year for brunch or dinner. I think we've done it twice this year now! Hope to see you there some time. And I do hope that DH comes with, so that we can meet him too.

Hugs,

Kat



"A life lived in fear is a life half lived." - Strictly Ballroom