Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Resources for helping my wife?

Hello all! I'm new to the forum, and I have an interesting story about my AS history, and I'll tell it eventually, but I wanted to get some advise first, since there's a pressing issue to deal with.

I was diagnosed with AS about a year ago, and have had some pretty major issues over the past couple years. There's also reason to believe that I have Psoriatic Arthritis to boot. I've gotten very frustrated with the lack of progress I've made in treatment and my wife of 3 months is getting more and more frustrated with my increasing grumpiness and inability to help her out with the kids and around the house. Thus far, the only thing I've found that helps me deal with the pain and discomfort is to sit in a recliner and play video games for hours. She is understandably frustrated, since she thinks I'm just trying to avoid helping her.

I started on a twice weekly regimen of Enbrel three months ago, and have seen significant improvement in my symptoms, but I was also diagnosed with Bursitis and a torn ligament in my shoulder 2 weeks ago, for which I will be seeing an orthopedic specialist for this week. I'm also on diclofinac, which has been keeping the bursitis pain at bay for the past two months.

For the past few months I've also had an incredible amount of pain in my low back, with accompanied sciatica and pain in my hip that makes it very difficult to stand or sit in anything other than a reclined position.

Right now, I'm trying to find something to help my wife cope or deal with my more regular grumpiness and foul moods that accompany my more severe days of pain. She tries to cheer me up with humor, but sometimes the jokes about how poorly my body works just make me depressed, and I have a hard time coming up with the right words to explain all of this to her. We normally work very well together and love each other dearly, but the AS is (and always has been) a major hurdle for us, since I don't know what I need from her and she can't think of anything else to do. Are there any resources or books for spouses of Autoimmune sufferers out there that I could get for her?

Acbrown-
I would suggest that your wife read some posts here, and then talk to a few of our regulars.
After more than 50 years of AS symptoms, 3 back surgeries. 30 injections, 3 major shoulder surgeries, a full body cast, Psoraitic art., MS, the list goes on, I would suggest that you never sit for more than 20 minutes. Sit often, but not for long periods of time.
I don't know your age, but I know your pain. With diet, the right medicine, you will not regret doing all you can while you are young. My symptoms have never improved with lots of rest, just the amount of rest to keep me from cramping.
You will find an average that will not quite work, but it will serve you while you do every thing you can while you can.

We appear to be just resting, but after you have gotten a brief respite go back to helping with those kids. Sure we need more brief rests, but those babies will be little for only a few years.

We all just do our best. Keep us posted.

Hey acbrown,

I would have to agree with lon's post.
There are a few things around which can be helpful it might be worthwhile looking around for any Pain Conferences or Pain Clinics that may be around your area.
I have been to a couple where they have had specific sessions for partner's and family on what to expect and how to deal with us.
Thought they were rather informative as they explain what we are going through so there is more understanding.

Also as Lon advised i would not sit for any length of time you need to keep moving even if it is painful. I have found personally that if i sit down for any more then an hour even when i'm having a good day things can start to go down hill. Short regular rests are fine.
But all people can be different.
But the main thing with AS is to keep things moving! and get the most out of the time you have with your kids while they are young as they wont be young forever

I agree about not sitting for longer than about half an hour at a time. Difficult when you can be feeling really tired, but moving really does help. Then I guess I'd start looking around for things that you CAN do around the house or with the kids. Kids love being with parents, but don't necessarily need you to be highly active - in hindsight I realise how much time my mum spent with us and how minimal the physical activity in that time was - even just things like reading, or making things. Look at the household tasks that your wife does and ask yourself if you could do any parts of those - especially things that only take a few minutes to do and don't involve bending or carrying. I'm useless at standing for long enough to make a whole meal, but I can definitely spend 5-10 minutes preparing food and leaving it for someone else to actually cook. My dad used to peel tatties for mum (who had bad RA) - a fairly small job in the grand scheme of things, but so useful to my mum.

As far as the AS goes, get onto a good daily stretching programme - you don't have to do it all in one go, as its about making sure you put all your joints through the maximum range of movement every day. Also start swimming, or short easy walks regularly if you can. If your disease isn't adequately controlled, keep on working with your rheumie, and if pain continues to be an issue, see if you can find a pain management specialist to help out. Above all though, stay out of that recliner (or at least don't stay in it for more than half an hour at a time).

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

http://www.amazon.com/Sick-Tired-Feeling...+sick+and+tired

and no matter how bad i feel, i try extra hard to be nice to my husband....we can be in pain, we can feel bad, we can be quiet, but it is up to us how we respond to others.

when you feel better, communicate openly and honestly. let her know how those jokes make you feel. i can tell that you can tell that she is trying to put you in a better mood.

when two people love one another and try to be kind to one another, as it sounds like the two of you are doing, it works out.

Hi acbrown-I can tell you that it isn't fun for husbands either, and as the one with AS and PA, I am not always much fun to be around. From a woman's point of view, most of us need to talk things out. Whereas most men want to fix it and be done. No extra talking necessary. Or at least that is how my husband is. He feels helpless because he actually is when it comes to fixing me or making me happier. The higher my pain numbers are or the more things in pain, the less I am able to handle the small things in life. I am trying so hard to control my myriad of pains that little things can set me off. Stupid things like our daughter not picking up after herself. Or my husband seeming distant. Then, I blow up and end up hurting the people who are trying their best to help me. What I tell them is this-you cannot help me on my attitude. That is all my responsibility. But you can help with little things like picking up things that fall or getting me things when I am hurting too much. Children and spouses need to feel like they make a difference. Figure out what things they can do for you and then let them. Praise your wife and children for all they put up with and do for you. Try to find some sort of exercise that doesn't hurt you, but that makes you feel like you are at least trying to be in control of your body. Water exercises help me as they are low impact and don't hurt my pelvis, back, shoulders, etc. Doing something however miniscule will help your attitude and overall feeling of self worth. Loving yourself and your body (which is very hard to do when you have a disease like AS and feel your body has betrayed you) first will help you love those around you more. I know I can sometimes go to a place in my heart where I wonder why they do love me and put up with all of my crap. Be thankful they do and let them know how much you appreciate them. Include your wife especially in what is going on with you each day. Listen and let her feel like maybe she can at least help you with your feelings. Most women enjoy helping in those things. Good Luck. I will keep you in my prayers. Amazonwomanrm

WELCOME, acbrown:

Normally, I would suggest that people not try and change others to conform with who they want them to be or meet different expectations. However, in the case of active AS, my best suggestion is to become INACTIVE and all else will follow: You will not need to have Your wife settle for less, or help her adjust to YOU with increasing AS.

Wish I could show You just how bad the NSAID You are taking really is, but knowing what I know now I would do any and every thing to ditch that drug! GLA from borage seed oil at 2g effective before retiring, then EFAs like EVOliveOil by teaspoonful throughout the day (about 5 servings).

Most important change is to diet; please do not allow the damage to advance before You make these changes!

And I echo what everyone else has suggested--don't sit too long at a stretch and the best thing I ever did was to join a health club. But it all begins in the kitchen. Please obtain a copy of Carol Sinclair's book "The New IBS Low-Starch Diet," with foreword by Professor Ebringer.

It is wonderful to have a partner to help You fight this disease; hope things go easier for the both of You in the near future. Just remember nobody really understands and we have to be on our guards to never let our disease get in the way of our relationships: Much easier said than done, but I always overcompensated so that many people never knew what I was going through.

HEALTH,
John

Hi, I am sorry to hear you've been diagnosed with AS and possibly PsA as well. But I am glad you found us and are on a biologic med. Hopefully, once your injuries are dealt with, you will continue to see improvement.

Here's the thing. Sitting doing nothing is the worst thing on the planet for someone with AS. You need to get yourself moving. Easy range of motion exercises might help at first, just to get yourself going. Once the shoulder is healed you can move to more aggressive exercise. One key characteristic of AS is that we feel worse with too much rest, but when we're feeling bad we need to balance that with not hurting ourselves.

As to your wife, she's doing everything she can. The rest is up to you. It's not her fault you are in pain (not yours either) and it's really not fair to take your grumpiness out on her. The only thing you can control is your own reaction to the pain. There's a programme you can take through the Arthritis Foundation called The Arthritis Self-Help Program. I suggest you look into it and see if there is a course being offered in your area. It will help you learn to live with your AS in the most positive way possible. Your wife would also be welcome to take it and she might also find it beneficial in helping her understand what you are going through.

I have AS, my husband has diabetes, hypertension and Psoriatic Arthritis. For us it's often a game of controlling emotion so we don't take our pain out on each other. I say this so you know I come from a caring and knowledgeable place, not a 'lecturey' one.

Warm hugs,