I am having one of those days where I went to bed okay last night and can’t walk today. Due to our schedules, my wife is supposed to wake me up before she leaves in the morning. But, I have gotten to where I just want to sleep all the time, so this doesn’t work most mornings.
This was one of them. She leaves, I go to get out of bed and want to scream. My left hip hurts so bad I am shuffling, my right knee feels like it has a knife in it. After sending my wife an email trying to explain this, she wants to know why I was late for work???
Hey Tamac, I feel ya. I am struggling right now. I did not feel like getting out of bed but I must due to not being able to lay there due to pain. I am struggling with working. Not sure at this rate how long I can. These days all I can do is barely manage to make breakfast, get a shower, and lay on the couch. Hang in there. Remission is possible and so are treatment options that may help. Try to be thankful for the good things and stuff she does get. No one is perfect and sometimes being considerate is a challenge for us all.
Hi Nermada, my husband (and most people I know for that matter) do not understand. I have Psa and AS and take Mtx and Enbrel. He thinks I am making a fuss over nothing. I am not the sort of person to sit and do nothing, I need to keep going, and consequently he thinks I am OK. If it was him he would be doing nothing. People tell me all the time how well I look and do not seem able to get their heads around the fact that you cannot see this disease other than my disfigured hands and a walking stick! So do not despair, it is just another thing we all seem to have to put up with, or at least some of us do. Other people cannot see pain or understand the fatigue, they just think of it as being a “bit tired”. I know some of you out there have wonderful understanding partners and/or family, but it can be upsetting for those of us who haven’t that support. Sorry to moan!
“Sometimes I think you’re just sensitive. I feel pain some days. Right now my feet hurt because I’ve been walking several miles with the dog daily. I just suck it up and deal with the pain… Maybe you just need to do that.” ~something along those lines from my partner yesterday
Nope, he doesn’t get it. Sore feet from walking several miles is different than painful feet from walking for just a few minutes. And he certainly doesn’t get the fatigue. He asks me every single evening why I am so tired. I kind of wish I had visible joint swelling so he could have some visible clue as to what I’m going through. Instead I just sit here and get told to suck it up. The lack of support is really getting to me.
Does this man of yours understand the first thing about autoimmune diseases? I don’t know if he does need to be more sympathetic as such, just being more well-informed about how debilitating PsA can be would be a start. And maybe, just maybe, an ‘academic’ approach would work better with him. Sympathy doesn’t sit well with some people, but awareness of their own woeful ignorance can be a spur …
It’s really hard to go your own way with all this when someone you love is the most obvious source of support. If you look back at your life I bet there are times you’ve worked your backside off without crumbling and comparing how the disease affects you to those more resilient times can help make its effects really clear in your own mind. I tend to doubt myself so sometimes I’ve had to be quite forensic in analysing whether I’m milking it or not trying hard enough etc. etc. Sometimes I do come to the conclusion I’m giving in too easily. But overall I am rock solid about the challenges that are due to PsA and if someone else doubts me they can go swivel.
I’m not saying leave him, though I wonder where things will go, but I do suggest you try not to long for support that isn’t readily available and just be proud and stubborn about how you accommodate and fight this disease in your own way. Sometimes just resting up at the right time in order to be ready for the struggle later is quite admirable but it might be that the only person who’s going to appreciate just how sensible and ‘right’ that is is you, at the moment anyway. Better than just sitting there and sucking it up, though.
Never a truer phrase Sybil. Often works well with people who might have some ego issues too. I don’t know @Weasel those that tend not to be supportive often tend to be more broken themselves for other reasons.
I have a really supportive partner who has a chronic disease of her own. Nonetheless her lack of knowledge of this kind of arthritis and how it affected me was pretty huge. We both read the Chandran “The Facts” book and then this one: “How To Be Sick”. I read it first and then passed it on. It is written both for the person suffering AND for the partner/caregiver. It’s a very straightforward read for dealing with all the ways that people try to (sometimes benevolently) apply their “well person” lens to interpret the behavior of a sick person. It will help YOU most of all, but your partner might get some perspective, too, on how feeling broken changes the way you interact with everything and everyone. Even if he says he won’t read them, get them and leave them on the coffee table.
