Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group Supportive or not so much?

A few more thoughts:

My husband and I are both in our early 50s, we've been together since our late teens.

The older we get, the more we realize how many things we used to think were important or even necessary to get done really don't matter so much. Learning how to simplify our lives has helped us over the years.

The last few weeks, we both came down with a nasty virus. I was sick first. My husband got sick before he could go to the grocery store. So neither of us could. We were missing a few food items at home, but we made due with what we had. While he was quite sick and i was still somewhat sick, I went to the grocery store...I just paced myself and went very slowly and only got what we needed.

We just share the load best we can, and don't bother with the things that don't really matter. If the house is a bit messy, who really cares? Does it really matter? Did anyone ever say at the end of their lives, "I wish I had spent more time doing housework?" If the kids are hungry and neither you or your husband are up to making dinner, I remember as a kid enjoying grilled cheese and tomato soup or peanut butter and jelly or scrambled eggs or really simple things...I certainly didn't need a fancy dinner. kids love mac and cheese, spaghetti (with jar sauce), etc. Just saying there are ways to make things easier...maybe you are already doing those things, but too I know a lot of people keep trying to do everything a healthy person would, and its not really necessary.

I had decorated the house at christmas time with winter themed decorations. Normally I change them to spring themed items some time in march....this year it wasn't til the end of april. So we had christmas, valentines day, st patricks day, and easter decorations around the house all at once. Thankfully my husband thinks decorating is silly so it didn't bother him. and i realized that it didn't matter if we had christmas stuff up at easter time, even if it was pretty funny.

Over the years, we try to remember to be kind to one another. That seems to be the most important thing in our marriage.

and if you need to, go for marriage counseling, it can really help.

I'm fortunate to have a very supportive spouse, friends, and family and I realize how unusual that is...

They say a person becomes empathetic to the extent they have suffered.

I wouldn't wish my suffering in anyone, though it might be nice to have someone carry out for a day every so often.

That said, I wonder if it might kill someone who wasn't used to the weight...

Friends - last week at the cancer center, I was limping as I walked down the hall, my oncologist was shocked that I would walk with gout since it is in both big toes and my feet!
I said I that I just add the pain to the list ..

Many of us do come here for confirmation that we are not crazy in regard tot he pain.

agape'
Lon

I haven't as yet received a diagnosis but have an appt with a rheumy. Due to new symptoms while waiting to get in and having to run in to see a GP and my husband going along with me for the first time...he has since then gotten very quiet with me. I am not sure what is going through his head. He's been the sick one with diabetes and I've been trying to hide and endure my own condition for far too many years. I am trying NOT to talk about it too much but I think I am as it is IN MY FACE and very much on my mind. I need to know what to do to help us both.

My husband has also made comments to me saying I need to quit looking things up on the internet. I think he thinks some of this is in my head. One of our daughters has flat out told me she thinks it's part of a mental illness to keep going from doc to doc and not finding anything out. I am seeing sometimes family members are not the most supportive and their lack of understanding, knowledge and insensitivity can add to the problem of the having a health condition.

If someone makes a snide / opinionated comment to me that is less than useful, I make a mental note not to share with them because I realize they really don't get it and probably never will and aren't motivated to get it.

With that said, a spouse, to me is different; I need my spouse to be my safe zone, my support. I'm very fortunate that he is.

But, most importantly, as hard as it is, we MUST ignore all those negative voices. It took me 12 years and many many doctors to get a dx and start getting treated properly (with drugs to combat the inflammatory process / autoinflammatory process at its core). I've now been on Humira for almost 3 years and finally feel like I'm getting my life back. I really lost about 20 years of my life that I'll never get back, but am so thankful to have my life back (to a large degree) now.

You HAVE to fight for that with everything you have. and those who get in our way to do so need to be pushed aside. You owe yourself that!

Sue,

THANK YOU for sharing that. My husband tries to help and does the best that he can. Part of it is that neither of us even knows for sure yet what I am dealing with.
I've got something, that is for sure.
I also feel like I've lost many years of my life. You put into words what I know to be true.
I do feel like I a fighting for my life...I want to thrive and not just survive and to go out with as good of quality of life as I am able to.

I have an older sister, just a year and a half older. I think she's got this too but hers is further advanced/more aggressive then mine. She's already had a hip replacement, her neck is fused already, etc etc OH and she's had cancer!!!
I feel I am fighting for a dx and treatment for her as well as for other family members I suspect have this as well.

An older sister with a fused neck and who has already had a hip replacement - make sure to tell this to your Rheumy. Having a first degree relative is a diagnostic clue. Having a first degree relative with an AS diagnosis would be even more helpful, but this is important info to relay.

As for your family, try not to take it to heart if they don't understand or don't seem sympathetic yet. It is hard enough for us to understand and get our minds around and we're living it.

One step at a time... they may learn so don't give up and think too about how you ask for support. In the early years, I was not very good at expressing how I felt and really quiet about asking for any manner of support. It's more of a journey for everyone and not something that happens overnight.

Mig, I came from a family of nine children. My oldest brother has arthritis that he says only flares up when he is under great stress, my other older brother is disabled due to a neck problem and also has cancer, I told you about my older sister. I had a younger sister who had been diagnosed with fibromyalgia, she had a neck problem too! She passed away from cancer. My two younger sisters both have back problems.

My older sister has just recently gotten a referral for a rheumy at my encouragement. She is in far worse condition then I am, I really have nothing to complain about in comparison.

IT IS hard for us to understand and accept our health condition. Thanks for all you share...

Sue,
I like the things you shared about making things simpler in your life. That confirms to me that I've been on the right track in doing that very thing. I have been needing to lessen my work load and let go of some of the many responsibilities that I have. No choice really! I have been slowly working on reducing things we own so there will be less to take care of and MORE ROOM! Last year cleared out a room and put up a treadmill and have plans to create a room for stretching and exercising (and watching tv or internet on tv) Trying to create a positive out of all of this.