Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group New Friends and Family Forum

For the past while there has been a private forum for the Friends and Family of AS sufferes to share support for each other as they help us with our struggles through life with AS.

Unfortuantely, despite there being more than 40 members, the forum has had very little traffic for the past 6 months, so the decision has been made to open up a new Friends and Family support forum that is open to all members. It is hoped this will encourage members with AS to give support back to those who support AS sufferes in their daily lives.

I am new to this web site, but am married to one of the members here -- BLESTER. I am so glad this page is here because spouses and family of someone who has AS do need a place to share what they are going through. I, at times, feel like I am the only one who has a life challenge when it comes to being married to someone with AS. I am looking forward to the responses this sight will get.

Take care,
Shirley

Hi there,

While I appreciate the motivation behind making this forum public rather than private, I don't think I will be able to post here. My husband has AS and yes it is hard to live with that but compared to him, what have I got to complain about? I can work, walk, run, jump up and down if the mood takes me, and I don't take toxic meds or live a life of pain.

I would feel insensitive to the ASers here if I were to go on about how hard it is to be married to someone with AS. Although I know the response will be that I need support too and they're happy to give it etc etc, it just doesn't feel right to me.

Maybe that is the reason why the private forum didn't have much traffic. As a spouse, my main focus tends to be the health my afflicted partner and what I can find out to help him - hence I use the main forum most to get info from people in the know - the ones suffering from this disease.

But I hope others that feel the need to post here will do so and get the help and encouragement they need. I'm not trying to be negative about this new forum or anything - just that I don't think I would be able to use it.

And I'm not implying that anyone who posts here is being insensitive to ASers either so please don't get offended. I don't really know what I'm saying anymore - I'm getting myself all confused. Better go before I dig a deeper hole for myself....

Thanks
Chelsea

I don't think this site was created as a place for someone to complain about what they go through having a spouse who has AS, but a place for thier familes to get support also. A place where someone can get encouragement. Yes, my husband suffers with AS, but if others know of things they have tried to do to help their spouse...ya know little things to us, but end up big for them, something that makes them more comfortable, share antidotes, information and encouragement. Family members of AS need friends and support also. How about that new wife or husband who has just found out their spouse has AS - this could be somewhere the spouse could come and say "I need Help, I have questions also".

When my husband was diagnosed back in the 80's I would have loved to have had a support group, I felt like I was caught between a rock and a hard place and our family was growing. We end up being their caregivers in the long run and we need encouragement as we travel that tough road with them.

Take care,
Shirley

I'm not going to say much other than I agree with you Chelsea, while it was obvious the private forum had little, well no traffic at least I knew it was private and could post if I needed to, but no matter what decision was made it would never please everyone.

As for posting on the main forum, I've given up on that , my last "cry for help" got 5 or 6 replies..yet someone else could post a lot of noncense not related to AS at all and get a hundred replies....it's laughable.

I'll still be around reading though, I may not have received the support I needed at the time, but I do gain info from reading others posts.

I wish you and your husband all the very best in your continued fight against AS.

Take care

Shirley, I understand what you are saying but the forum was made private because some members felt uncomfortable posting knowing it could be read by people with AS. I very often complain about my husband, get fed up with him, fed up with him having AS but felt that those who suffer the "real" pain didn't and shouldn't have to listen to me whinning about him. The forum was made private so we could say what we needed to, come and stress out about AS from our point of view etc etc at the same time as giving and receiving support to others in the same situation.

I hope you and husband are doing as well as possible

Take care

Hi Jackie,

I don't think we've hooked up on many threads in the past, and although I do try to read most posts, I often can't find the energy or time to reply to as many as I'd like to. I mention this since I did read your post on the main forum, and feel sorry now that I didn't put forth an effort to respond, when you so obviously were in need of more support.

I guess my failure lay mostly in the fact that your words left me feeling unable to to provide either of you with any real 'tangible' help,... when really I should have recognised that just to emphasize again that you're not alone in this nightmare is often meaningful help in itself. And it is true that you're not alone. In reality your husband's (and your) predicament is somewhere that most of us have experienced to some degree at least, at one point or another along this path of illness. All I can offer is the knowledge of what I've learned to use to get me through the toughest parts, which is that 'somehow' we manage to make it from one hurdle to the next,... regardless of how dark it seems at times.

At one point when I was 29 y/o, I was in a very dark place without any signs of hope ahead, was in a very bad way and hospitalized while my Rheumy made some (unsuccessful) attempts to try to improve my condition. For hours at a time, I was literally frozen by the severity of pain, and could barely lift my arm to brush my teeth. At that time I had an unsupportive husband that only came to visit me once during the 2 1/2 weeks I was in hospital. My parents and siblings didn't visit me either... despite 10+ yrs with AS they still weren't at a point where they had any real appreciation of what I was going through (partly my failure). And so in my depressed state I'd told them not to visit, although I didn't really think they'd listen - they complied. A tough lesson on 'be careful what you ask for' that taught me the importance of my need to communicate.

The challenges of communicating, for me, were many. How do I admit to my family and others that I am pitiful and useless, while protecting myself from believing it? How do I tell others that their expectations are constantly beyond me, and maintain the belief that I still have value?

Looking back, I realise the great supports I did have. I was lucky to have a special Rheumy that I fully trusted, and an employer who kept my job waiting even tho he was pretty sure that I was too ill to ever recover. Shortly after that I returned to work, got divorced, and over the years slowly learned alot more about sticking up for myself, seeking help, and effectively communicating. Now, with a wonderfully supportive man in my life, things seem pretty good.

I guess my point is in here somewhere , that despite the utter lack of hope and my inability to see anything postive in my future, the future did turn out to be filled with fun and purpose and light! Sometimes when it is invisible, I just need to blindly trust that things will improve.

I can't pretend to fully appreciate what it must be like to be a caregiver, Jackie, but I really hope you'll continue to post on the main forum or here. I do very much value what all the spouses share and contribute, and I think we all are richer for it.

Btw, I'm currently taking Voltaren (nsaid) and Sulfasalazine which isn't enough but has helped me manage over the last decade or so. I can't imagine Sulfasalazine being enough on it's own, and think it was an odd decision that Shug's doc didn't just add it to the mix, considering his condition. I also think it's odd they would suggest continuing with it, when it appears he is having a negative reaction. Of course these things are always difficult to comment on, and I usually refrain, since only his doc knows all the details. One thing that is quite easy to recognise is that he should have earlier (if not immediate) access to a Rheumatologist, and making him wait is reprehensible. At this point I'd consider getting very vocal, and making all the noise needed until someone caves. I'll be crossing my fingers that he somehow obtains access to a biologic med, but also that his condition will swing back to being more bearable with whichever treatment is used. This can happen too.

My very best wishes for you both.
Hugs,

mig

Hi Mig,
I really appreciate you taking time to respond but feel I need to clarify something. Please don't think I was getting at people for not responding to my post, I totally understand that it's impossible for many people, given their condition to sit at a computer and respond to every post. Really what I meant was I felt the lack of support on the main forum due to the fact that people WERE sat at their computer and WERE replying to posts that perhaps could have waited, in favour of someone needing help/support/advice/a few words of encouragement. I admit, I didn't directly ask for any help, as I'm aware there is little, if anything anyone can do. It's probably shallow of me to 'expect' more replies, I was (and still am) so down, upset, sad, afraid, tearing my hair out, hating AS and many other things that I can't put here because Shug can read this post.

Shugs been on sick leave now for 3 months and has found out today that he is being put on long term sick leave from the army and has to find a way to get back to N Ireland and pack his belongings up and get them back here (this is the same guy who can't tie his shoes or take a shower undaided). There's no one to help, I've got time off work but can't find anyone to take care of my kids so he's going to have to struggle through this alone, although he's hoping one friend will get some time off work to help him pack his room up (hope, seem to be doing alot of that lately..lol)

As for the time between rheumy visits, we're really in a no win situation. Our waiting list in this area for a first visit after being referred by the GP is 6 to 9 months. The army tried to rush his last appointment through and were successful in knocking 4 weeks off his wait, but it did no good as he had to see another rheumy who doesn't know him, luckily he kept his original appointment but it was uneventful. I feel the same as you, if 2.5 of Sulfazalasine did nothing in 12 + weeks then 3 is not going to do anything in the 6 months till his next visit. Shug waited a long time to get to see this Rheumy (he's the top man) but is now disallusioned with him, it's not as simple as changing your rheumy in this country. He'd have to go back to his GP and be re referred and wait 6 - 9 months to see one!

Shugs lost all hope and here's me trying to hold everyone elses lives together as well as my own.

Take care

Hey Jackie,

Not to worry, and no clarification was needed. The only impression that affected me was that one of our members was feeling lost and without the support we've come to naturally expect on this site. There is nothing 'shallow' about hoping for a little help and compassion. Sometimes I think people respond where it may serve to help themselves rather than whoever they're replying to... and in that regard it has worth too, tho understandably difficult to fathom when you're faced with such an enormous battle, and feeling so alone and down.

And it is obvious your troubles right now look insurmountable. I can feel the weight of it from here. Somehow, Shug will make this difficult journey home, and if no-one steps in to give him a hand then something is really wrong with this world we live in. On a positive note, this long term leave sounds like the best possible course. He needs to stop and somehow be allowed to let his body recover with real rest. This may well prove to be more effective than any drug. So, is he ONLY on sulfasalazine? Does he have any meds for pain, or can a GP prescribe an nsaid to go along with it until he can get in to see a Rheumy? Sulfa does take a long time to ramp up, and may be helpful in a background kind of way (if he's tolerating it well), but won't help with pain. If he can't get an nsaid, perhaps he could take an over the counter nsaid? I'd use the GP for as much info or advice possible in the meantime.

And as for you Jackie, please try to not let the 'whole' of this make you sick. Stress is a brutal thing and hard to avoid, so all you can do is all the little things that will help you make it through all this. To stop thinking ahead and instead try taking a 'one day at a time' approach, can really make a difference. Drop anything that can possibly wait, and try to get as much sleep as you're able to,... do some slow deep breathing to relax when the worries get overwhelming, and try to think of all the little things that will serve to help you build your strength for when he returns. In other words, treat yourself kindly through this, recognizing this is no picnic and that you will need to pace yourself.

I wish I could offer more, but will pray that all this somehow works out for you both. "There isn't an end, only a way."
Big hugs of strength,

mig

Thanks Mig
Yes Shug went back to his GP who put him back on an NSAID, he's on celebrex now, also on pain meds, the name escapes me right now, sorry, he's also now on Iron tablets due to the effects of the sulfa . I firmly believe that being taken off the NSAID is what caused this almighty flare in the first place, only time will tell if the celebrex brings him out of the flare. While his pain and stiffness and inability to do certain things for himself is hard to watch, what is harder is his lack of self worth, he's sick of being at home, he wants to work, even for a few hours a day. That's something he's hoping the army will allow while he tries to work his way back to as full health as is possible with AS.

I do really try so hard to take the one day at a time approach and it works mainly, just sometimes it all gets too much. My main worry is, if Shug has to leave the army through his AS we lose our house too. If he's out of the army and not able to work our only option will be council (government) housing and in this area......well you wouldn't want your worst enemy living there so our whole lives would change. It's just such a scary situation to be in. Shug (who retains his humour throughout) states quite plainly, that squatters have rights LOL so we'd never be without a roof...lol.

I am thinking to the future and know I'm going to have to be the breadwinner (most likely anyway). So I've decided within the next two years to go to Uni and become a nurse, but of course, until we find out what's happening with Shug which will dictate where we live, I can't apply to any uni's in the area - so that's on hold. In the mean time, I'm studying for a Degree in Health and Social care through distance learning as well as working part time to pay for the degree..lol.. I am thinking ahead, have to now!

Thanks again Mig, your words of support and encouragement brought tears to my eyes yet somehow made me feel better too

Take care