Maybe it’s the rain and cold. Maybe it’s my hormones. Maybe it’s just one of those days. At any rate, today is super crappy. Worse than usual. I’m hurting and stiff and cloudy… the kids have colds and didn't sleep well last night (which, of course, means no one slept well)… I dragged my butt to work this morning anyway and I’m limping through. Normally, being a crappy day AND a Friday, I would be looking so forward to going home... but I’m just not. My husband seems to be losing patience with (and maybe belief of?) my never-ending pain (hey, so am I) and is increasingly less sympathetic. This past year has taken quite a toll on our marriage, which truth be told, was troubled already. It’s a sad day though when you’d rather be miserable at work than at home. So I’ve been wondering – how does PsA affect your relationships? Any tips to help him understand?
sorry for your woes. I would hazard a guess that we have ALL been there. I'm know how the pain and fatigue takes a very real toll on each of us--patients and spouses alike. It can be debilitating.
I went for counseling when I couldn't deal with the emotional strain of my illness and what it was doing to my relationship. I chose to see a therapist who focuses on Acceptance and Commitment Therapy. I like the approach of ACT and found the tools provided by the therapeutic model to be helpful and easy to apply in my daily life and to my own understanding of my illness.
In addition I read an excellent book that helped both me and my spouse a lot. If you feel up to it, try "How To Be Sick" by Toni Bernhard. It's an easy read and is written for those suffering with illness and their caregivers. Spouses certainly fit that category! My partner read it after me and found it helpful. Having both read the same book allowed us to talk about my illness using concepts from the book. It made the conversation seem more third person and a little less "me, me, me." The author suffers from a debilitating illness and her descriptions of fatigue and complete immobilization are so intense that she could have been describing me. The vivid descriptions were essential in getting my partner to understand what I was going through.
My final thought is to ask your spouse to accompany you to a rheumatology appointment. My partner did that and was able to express to my doctor how my quality of life was in the toilet and, subsequently, so was her own. My doctor took very seriously her description of my illness (whereas I was sugar-coating things a little) and her insistence that a different course of treatment be sought. It was after this meeting that I started on Enbrel. Meeting with my doctor made my spouse a partner in my illness and my treatment.
It isn't all sunshine and lollipops and sometimes she gets frustrated when I'm tired and retreat to bed right after work, or if I don't get to all the things on my chore list, but on the whole we've worked through our problems and found some solutions (hiring a house cleaner, doing less on week nights, cooking larger amounts of food so we can stock the freezer for the nights I don't want to cook) which we revisit and renegotiate over time.
Good luck as you work out a path through this bumpy patch. Feel free to come back here and vent as you need. Cheers,
I appreciate the input. I have been considering counseling lately, in fact this past week I have started looking to see what's available around here (and what insurance may help with). Unfortunately my next rheumy appt isn't until Feb - but I see what you both are saying about how that could help unify us against the disease. It certainly is worth proposing.
My husband and I have had our ups and downs. It took me a while to understand that he truly CANNOT understand what I'm going through, because he has no frame of reference. He has never lived in a body that doesn't cooperate and has never experienced the type and level of pain I have for as long as a time as I have. One day when he was home sick from work, out of sheer exhaustion and desperation, I handed him a list of things to do (as he was laying in bed moaning and groaning). He looked at me as if I'd lost my mind and told me that all his joints hurt, he was exhausted, had a fever, and his chest hurt from coughing all night. I told him, fine, stay in bed, that's what he should be doing - taking care of himself so he doesn't make himself worse ... and then pointed out that he expected me every single day to move past my achy joints, exhaustion, pain, etc. and accomplish four times as much as was on the list I'd handed him. He had a slightly better understanding then.
It's difficult for my husband because my pain level could be through the roof and I act normally. Me calmly saying that I'm in a ton of pain and am exhausted has zero impact.
I also didn't understand the depth of my husband's worry about me, and how that manifests itself outwardly as "not caring," He doesn't like to dwell on the what-ifs, because they're too stressful...while I have OCD and need to plan ahead and make sure my family, my house, etc. are taken care of.
Men and women tend to deal with things differently and it's often difficult to meet the other person where they are or understand where they're coming from.
That's true nym, and always in the back of my mind - that he doesn't understand not because he doesn't want to but just that he can't possibly - he's never known anything like it. In that way, I'm grateful he can't understand.
I also do not necessarily act like I'm in pain. I grit my teeth and do what I have to. I was pretty stoic even before all this started. My husband said the other day - don't do that if it hurts you! I said, if I didn't do the things that hurt me, I wouldn't do anything at all.
I just had to laugh ... my husband and I had the SAME conversation yesterday! I told him that unless he can figure out a way to 1. levitate me or otherwise support my body without it feeling like it's touching anything, 2. find a pain med that works and doesn't make my liver issues worse, and 3. manage the household, including housework, paying bills, homeschooling our five children, scheduling and getting children and myself to doctor appointments, etc. etc. etc. then I was going to have to both be in pain and do things at the same time!
"So I’ve been wondering – how does PsA affect your relationships?"
It doesn't. (or at least i don't know how it does)
We have never felt the need to have the other "understand" what the other is going through or any other psycho-babble. A marriage is different than a "relationship" We are old enough that the vows we took essentially meant the two of us became one when we married. We still both believe the other is doing their very best to make being "one" the easiest it can be for the other.
When you are one, there is no relationship to discuss. There is no partnership because that involves separate people each with their own needs and expectations from the relationship. When needs and expectations aren't met, then partnerships dissolve. OR those needs and expectations are constantly being renegotiated in "partners meetings" and who has time for that.
Consequently we both push ourselves to do what we can all the time. If we can't do something and neither of us can can do it, it either gets as Jane says "staffed" or it goes undone. If it gets staffed, its done and we have nothing to worry about. if it goes undone, it didn't need done anyway so again nothing to worry about. Funny in 40 years everything that need done has always gotten done.
Granted the Mrs. Lamb thinks we need new living room carpet, but until the piano gets moved, I just don't think its going to happen. Now if I come home tonight and I set my "bag" on air where the piano used to be, I may ask what color the new carpet is........ If it involves redecorating which in turn replaces my chair, the piano may get moved back........... That stuff happens in any marriage, Partnerships however break up over that stuff.