As you all know I have P and PsA but today we found out my husband has both as well. How do you live with a family who both has this disease? Think I am on the road to the best recovery but why us. I guess I am depressed is the best way to describe it I hate that he feels for us. Come on peeps, make me feel better, make me feel that we will both overcome this.
We do it in my house w/a lot of fun and laughter.
My husb. and I have known one another since the age of . . . 9? Wow, yep. 9. Met in C.C.D. class. A long story of him getting me into trouble w/his crazy antics of bouncing down the stairs on his butt and making me laugh so loud that the Nuns called my Mom and well, if you know Nuns, you know that is none to good atall.
Anyhow. The husb. and I have shared many things over the years. A love of all things 3 Stooges, a good glass of Guiness (those days are gone now), telling a story and adding in "a bit of the Irish" and, of course, Psoriasis.
Who knew that by the time we were in our teens and knocking about with a crowd of ne'er do wells, we'd also be sharing the embarrassment of hidden elbows due to P outbreaks.
And as the years went by, and our friendship "bloomed" (blushing :) ), I was diagnosed w/PsA.
Now it looks as if he's coming along w/PsA symptoms as well -- but we have not firm diagnosis on that and will have to hold off until the health insurance kicks in.
I am not sure it that little story makes you feel better, but I do know that while I would never wish this on anyone, I would rather have my Mister to take care of and to be taken care of by over anyone else. After all, he's seen the best and the worst of me and he is still here.
Crazy boy!
I have to admit, this is definitely a concern of mine. My husband has had psoriasis for many years. So far so good. If he developed PsA too? We would handle it, the same way we’ve handled other challenges.
I think in some ways it would be a blessing to have someone who understands what you're going through, not only with your P, but with your PsA. My husband doesn't get the level of exhaustion, pain, etc. and it can be problematic. This seems like a wonderful opportunity for both of you to grow in support of one another. Also, because of your experience and knowledge, his road to treatment will hopefully be a smooth one.
My wife and I both have our challenges as well. She has pretty significant Fibromyalgia. So here are the two of us... one with PsA and the other with Fibromyalgia. But as nym mentions, in a way it's a blessing. Reason being that we both can relate to how the other feels. We can genuinely support each other with true compassion because we are in the situation ourselves. You learn to work together and support each other as necessary. I have at times observed situations which only one member of a relationship was diagnosed and the other at times became frustrated with the other. At times it has lead to the end of a relationship because the "healthy" member either couldn't grasp what the other was going through or felt they didn't sign up for this, or whatever the reason is. My wife and I do not have to worry about that, we are both going through a journey together and I have found that our support for one another is greater than it could ever be!!
Wow, MAT, I’m sorry to hear that, for sure. But, you really have to look at the positives; you simply can not afford to focus on all of the bad. I know that you can let go of the negative and be hopeful, because I have seen you do it. You will be able to be there for your husband in a way most partners with PsA don’t get to. You will be able to understand his frustrations, his concerns, and be his sounding board, but you will be so much more able to understand it. You will be able to give him perspective. No, this is definitely not what anyone wanted to hear, but who better to support him than you? There is no better advocate than someone who has been in your shoes, and he will have that in you.
I will be thinking of you and your husband. You know we are all here for you and your husband too.
:)
GrumpyCat said:
Wow, MAT, I'm sorry to hear that, for sure. But, you really have to look at the positives; you simply can not afford to focus on all of the bad. I know that you can let go of the negative and be hopeful, because I have seen you do it. You will be able to be there for your husband in a way most partners with PsA don't get to. You will be able to understand his frustrations, his concerns, and be his sounding board, but you will be so much more able to understand it. You will be able to give him perspective. No, this is definitely not what anyone wanted to hear, but who better to support him than you? There is no better advocate than someone who has been in your shoes, and he will have that in you.
I will be thinking of you and your husband. You know we are all here for you and your husband too.
Well, Matt. I'm sorry to hear that. It certainly is bad news. He is luck to be married to you. and there is the positive. You have a challenge a head of you. The good news is you are not the person who first came here a year ago. You are on the road to recovery and have started to take control of your disease.
Now you probably still hate me and that's fine. You did ask a question: " How do you live with a family who both has this disease?" and here's the simple answer at least one of you has turn into me (part time anyway and its okay to rotate the job) You need to challenge each other daily to fight this thing hard and keep control of the disease. Can you imagine how bad and how quickly things can get if you both are in a down cycle with this and jointly decide I don't wanna do the MTX (or what ever) any more as you are both fighting for space to pay homage to the porcelain god???
You guys have some decisions to make, that will keep you busy for a while. Treatment is the first. Is going to be better to be on the same schedule, slightly different schedule, or opposite schedule? Exercise??? Menu, chores etc etc. Its tough, but a lot needs to accomplished without an emotional component.
There will be times you both want to wrap in a blanket and turn off the world. DON'T do it - together That doesn't mean you can't grieve together. Just pick a good time (as opposed to a bad time) to do it. And then I'm gonna risk getting another corner of my man card ripped off. Men only act tough when they are scared when he's the toughest he needs you the most. Also once we have been married we are totally dependent on our wives (thats why when divorced we get married in 6 mos or less or when widowed die in 6 mos or less - if we don't get married in 3) Nothing will scare him or depress him worse, especially now, than seeing you having troubles.
So here it comes "How do you live with a family who both has this disease?" Take your meds, keep moving, get healthy and adapat to your new normal. You are in my thoughts and prayers mat, you'll do fine.
My husband is super health and athletic. However, we both struggle with depression.
The rule in our house is we can't both go down at the same time. If I'm having a flare and he needs to take on more, he'll hold it together, and then once I'm doing better he'll back off and let some of the depression and fatigue out. Then I support him. Back and forth, all the time. We've managed well this way for 21 years.
Thanks for all of the advise everyone, I think the other night I was just in shock an a little overwhelmed at the thought. Now that's over with we will get to work figuring this out. And Lamb I certainly don't hate you. You always give great advise (whether we want to hear it or not) and keep me amused with some of your posts.
I will keep you in my thoughts and prayers. Any road on this PsA adventure is hard. But I am sure you have been married long enough to get the ebb and flow of it. You will manage this as you have managed other bumps in the road, with grace.
The best advice I ever heard for keeping a marriage together is that you HAVE to take turns being crazy. Doesn't work if you both try to go at once, but everyone gets their turn now and again.
I'm surprised at how many people here are married to someone with the same problem. Your husband is in a good position: I assume you have found a good rheumatologist and have learned more than you ever wanted to know about how to handle PsA. He will be starting from experience and knowledge rather than fear and uncertainty. You ask "why us?" and the best answer to that, unfortunately, is "why not?"
Mat, I would not wish this on anyone else but, at least you both are already aware of some of the challenges you will face together. I think what TNT said about rotating roles as the encourager/challenger is something we all do with our spouses but now you will need to be more defined about it. My husband (knock on wood). Is pretty healthy, outdoorsy northern boy. He constantly challenges me and while sometimes I would like to throttle him; in the end he manages to push me just to where I need to be. Not easy and I am sure there will be, as my son has started saying " is it a sucky arthritis day?" Or days but you need to work hard to find things to lift each other up. Figuratively and maybe literally.
Talk to the Rheumy and between yourself. Treatments maybe better together or worse, I have no idea. Take a look at your home and see what if any changes you can make to make it easier for you both. Do things need to move to a better spot? Do routines need to change to improve energy conservation? I am constantly finding new things that help me daily and in turn my family. Still have lots to fix but we keep trying things out. Winter will be here ( where I live ) soon and there are some things I am doing now to prevent problems later. People think I am nuts but I know energy is precious and winters are harsh here. The more I can do now the less stress at -40.
Most of all allow yourselves to grieve but not wallow. The more I more through this the more chances I get to practice grieving but I have to be careful not to wallow. The grief is real, the loss is real- the wallowing just causes me more stress and grief. If need be talk to someone about it either together or apart or both. Talk to each other and try to enjoy the little things when they are little and celebrate the big things too. Together you can support each other. Hugs
I think you get a free “Freaked the Eff Out” pass on that one, MAT. It had to feel like being hit with a wall. Not running into a wall, but actually being whacked with a wall. Repeatedly? Hope you are drawing that cartoon in your head!
I’m glad you are on the up swing, and feeling a little more on top of the situation. It’s certainly tough, but I have a feeling that you’ll be fine.
MAT said:
Thanks for all of the advise everyone, I think the other night I was just in shock an a little overwhelmed at the thought. Now that’s over with we will get to work figuring this out. And Lamb I certainly don’t hate you. You always give great advise (whether we want to hear it or not) and keep me amused with some of your posts.
You're so right GrumpyCat. A good freak out moment is definitely allowed....
Good thoughts to everyone dealing with a chronic illness, regardless of which it is.
GrumpyCat said:
I think you get a free "Freaked the Eff Out" pass on that one, MAT. It had to feel like being hit with a wall. Not running into a wall, but actually being whacked with a wall. Repeatedly? Hope you are drawing that cartoon in your head!
I'm glad you are on the up swing, and feeling a little more on top of the situation. It's certainly tough, but I have a feeling that you'll be fine.
MAT said:Thanks for all of the advise everyone, I think the other night I was just in shock an a little overwhelmed at the thought. Now that's over with we will get to work figuring this out. And Lamb I certainly don't hate you. You always give great advise (whether we want to hear it or not) and keep me amused with some of your posts.