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

Chelsea,

My WeeChelsea (nearly 16 yrs old) hates me for having AS and truly begrudges me for the changes in her life that my affliction has caused. I know it is as difficult for her as it is me. It is one of the reasons that she chose to go to her dad's, whom she has not lived with in over 8 yrs.

I can't change it and hope one day she sees, like you, that we ASers can not help it.

Like I said before, please use this spot to vent and help others in the same situation. If, in the future, a place of solitude is needed, I KNOW the admins of the site would make it so. There could be a public and private forum, if need be.

Take Chelsea and thanks for understanding the KAers here, especially your hubby!!

Holly

Thanks Holly, you're a real gem.

I'm sorry to hear of the situation with your daughter. No doubt this must be a real source of heartache for you. When Jon first got AS I would often act angry and unsympathetic towards him at times but it was mainly out of fear. And if I didn't act mad I would burst into tears every five minutes just watching him try to walk etc. I guess the same would be the case for your daughter - it must be very scary seeing Mum in this kind of pain. I hope, like you say, that in time she will come to some kind of acceptance of the situation altho this is very difficult for anyone let alone a 15 year old girl.

All the best to you, I will try and support this forum where I can.
Chelsea

Thanks, Chelsea!! I hope she does find KA but she IS a teenager..

She may never "get it" like you do but I hope that those that have to deal with KAers have a place here to help you guys cope with us!!

Keep in touch!
Holly

Hey everyone!!

I am new to this and was the 1st one to post after I seen this forum was here for families and friends who has AS. I was excited, but then got to thinking....oh man...did I open a can of worms and wasn't excited anymore.....until.....others started responding and I started to feel better. My husband...BLESTER.....was diagnosed in 1986 with AS...I have had to basically go through all this alone.....I haven't had anyone I could talk with who understood my end, what a spouse goes through when the other half has AS. It hasn't been an easy road and I have felt like I was alone. At times I felt like I was losing my mind. I hope I can find the support here that others have had. Not sure if I am making the point I was trying to or not.

Good night, sweet dreams
Shirley

I'm still new around here myself, but I would like to say that I hope this forum stays open and flourishes, if only for selfish reasons...

My husband had had a very hard time dealing with my diagnosis, and the changes it has placed on our family. He's not a big on communication, and that can make things worse. For example, if I'm in a particularly bad flare, and not as attentive as I used to be, he thinks I'm not attracted to him. If I look too serious because of the pain, he thinks I'm in a bad mood and tries to "fix it".

I've been praying for a way that he could find people to talk to that are in HIS position, the way I've found those who are in MINE. Everybody needs someone out there who understands.

Sometimes when I'm reading posts, I think I have no right to complain...At least I'm still working, some aren't. I have a cane, but some have a wheelchair. Everybody has a different level of stresses, but we all need a place to vent, a place to groan, a place to bi*#ch, a place to cry. Not everybody who SUFFERS from this disease actually HAS it.

Please keep posting.

Chelle

I'm actually amazed at the amount of people who say they are so happy to have somewhere like this forum, it's obvious then that those people never knew that there always has been a forum for us!! Perhaps if others had known about the other private forum maybe itwould have worked and not had to be shut down.

While I'm happy we've been given this forum to replace the one we already had, I'm not comfortable sharing things in this forum that I may have shared when it was private.

Take care

As a new member, I have taken some time to scan through the various postings on the "Friends & Family Support Group" Forum. I'm so glad it's here and that there is an opportunity to connect with others in similar situations. I lost my husband a year and a half ago and have now met a truly WONDERFUL man. He has fairly extreme AS and is only in his early 30's. I'm sure that many of you can relate that his condition causes much frustration, depression and anger at times. Whilst we are exceptionally compatible, the AS often becomes a wedge between us. He is in continuous pain and just wants a break. He wants to just be able to find a comfortable position to sleep in and to be able to wake up without first having to figure out how to raise himself up and still be able to breathe. I so badly want to help and feel so pathetic in not being able to do something practical to ease his discomfort. Sure, I do the little stuff - fetch and carry, rub creams into spasming muscles, make coffee, give hugs and cuddles, reassure him of my love. But I sometimes get so frustrated that there's NO solution at hand to just give him some decent relief. Oftentimes I get up at night to go to the bathroom and I see him drenched in a fever sweat from the pain. I hear him battling to move out of one stiff position to try and get a little relief in another position.

This is obviously my first contribution to this forum and I know that those of you "old hands" are probably nodding your heads sagely - able to FULLY understand what I'm trying to say as well as the stuff that I haven't even figured out yet. I must say that I look forward to learning from you and from being able to pick up some tips on how to be a better partner for this truly special man in my life.

Regards

Gabrielle

I am really excited by the wealth of information on this site. My boyfriend signed up as a member today and hopefully will find some answers, solutions and support by being registered. We started on eliminating starch from his diet and so far day 1 has been good. Being in South Africa, we don't even know what HALF of the products are that are mentioned on the various lists. However, armed with a small bottle of iodine, we know what the main starches are and can test what we're not sure of. With him being in such an extreme inflammation at the moment, he is willing to try almost anything to find a bit of relief. He has been nauseous for about 5 days now and today's the first time he ate a proper meal for supper. I'm so glad we could prepare our food with the hope in mind that it may help!

I reckon EVERYONE knows that one's mental state also has a huge impact on physical health. Just wondering if there's anyone who has found that certain emotional states / triggers exacerbate the problem. I've observed that when my boyfriend becomes agitated or angry, his pain is intensified for the next two days.

Also, does anyone know of any alternative healing therapies that have been tried and to what degrees success has been observed. We've been discussing the idea of him undergoing Journey Therapy, Reiki, Acupuncture. Not everything at once, but trial periods on various healing methods to see if anything helps. If anyone has any suggestions, they would be extremely welcome. "Life's too short to make all the mistakes oneself". (Unknown)

Gabrielle

Hi Gabrielle,... and Welcome to KA!!!

I'm so glad that you've found KA, and with it have found some renewed hope. It is a wonderful site and is full of such nice people, it soon becomes like a 2nd family.

I've lived with AS since my late teens, so I have a very good understanding of what you are both going through daily and the challenges that chronic pain bring into a relationship. I just wanted to let you know that the 'little' things you speak of doing for him each day, which may seem like nothing to you, are far from nothing - they are a HUGE comfort and a blessing.

I've been in that place many times, of wanting to take a break from others to tough out the pain on my own. Sometimes I just can't manage the focus of being involved in life, or participating in a conversation, because sometimes the pain takes up all of the space in my mind. I do try my hardest not to be grumpy for my partner, and so the worse I get, the quieter I become. Otherwise, I try to crack jokes and keep a smile on my face through each day, to help keep us both on the cheery side.

Anyways, the main point I'm trying my best to get across, is that you will never be able to take away his pain, but you sound like an angel of support, and he sounds like a lucky man to have such a great soul in his life.

The other thing I wanted to mention is that you should feel free to post on the main #1 support forum too, and introduce yourself! It's often a bit quiet in here, though I know the other Friends & Family members will be happy to have another join the group. Good to hear that your boyfriend has decided to register too, and I look forward to seeing you both around KA.

Take care,

mig

Hello Mig

Thank you for your warm welcome onto the AS site. We are on day 2 of eliminating starches from the diet and when we eat together, I'm trying to have the same as him. After all, it's hard to just do a weight loss diet on your own. I can just imagine how depressing it would be for my man to get this whiff of pizza wafting through the house and he can't have even a bite. Much less fried potatoes or toast. The diet is going to take some getting used to. Already today, the man was browsing through a small supermarket trying to think what he COULD eat. Anyhow, he bought a packet of crisps and only half way through realised "Duh!" Starch! I cooked some mince and steamed veggies for supper and realised as I took the last mouthful that the mixed veg had corn in it. Ugh! One learning curve at a time I guess :).

I'm having to really think on my feet! My youngest child is 2yrs and battles to fall asleep at night. As my eldest isn't affected to any alarming degree by sweets, he's always been allowed a treat after finishing his dinner. I was discussing Ryan's sleep problem with a friend / colleague and he suggested I eliminate all sugars after 16:00 from the little one's diet. So.... one can have starch, another can't. No sweets / colourants for another after 16:00, while everyone else can! Pretty soon I'll be able to open my own restaurant :).

In any event, I'll take your advice and venture on to the main forum soon.

Thanks again for your friendliness! I just want to add that the little you shared about how you often feel made me smile. I called my boyfriend in and showed him. I could have been reading a description of his behaviour.

Looking forward to getting to know you better.

Gabrielle