Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
My husband is out of work, has been for over 9 months. I'm lucky that we are ok financially, but his continued unemployment is putting a strain on us for sure.
I'm exhausted. I never feel rested and have a job that can be quite stressful. I'm up at 5:45 every morning and get home around 5.
The RA is a constant drain for me. It's affecting work, it's affecting me doing the things I used to love doing, like going to the gym, taking long walks, etc. those things that relax and ground us, and make us feel like we did something good for ourselves.
Last night I get home and he informs me that my energy level, this disease and my choice to do my MTX injections on Fridays is affecting our relationship and sex life. He wants me to do them Sunday nights so that I'm not tired or don't feel off on the weekends, and he'd rather me feel nasty at work on Mondays. He's of course sitting around on his butt all week doing nothing so has energy to burn.
I'm in absolute shock about what an insensitive jerk he's being and I just don't even know what to do. Even without the MTX coma on Friday nights, I'd still be too exhausted from the work week to do anything fun.
At times he's been so understanding, but apparently that's over, or was just an act.
So much of the frustration about this disease is caused by others who just don't friggin get it.
I'm just frustrated and needed to vent and this place sometimes feels like the only safe outlet for that.
I'm exhausted. I never feel rested and have a job that can be quite stressful. I'm up at 5:45 every morning and get home around 5.
The RA is a constant drain for me. It's affecting work, it's affecting me doing the things I used to love doing, like going to the gym, taking long walks, etc. those things that relax and ground us, and make us feel like we did something good for ourselves.
Last night I get home and he informs me that my energy level, this disease and my choice to do my MTX injections on Fridays is affecting our relationship and sex life. He wants me to do them Sunday nights so that I'm not tired or don't feel off on the weekends, and he'd rather me feel nasty at work on Mondays. He's of course sitting around on his butt all week doing nothing so has energy to burn.
I'm in absolute shock about what an insensitive jerk he's being and I just don't even know what to do. Even without the MTX coma on Friday nights, I'd still be too exhausted from the work week to do anything fun.
At times he's been so understanding, but apparently that's over, or was just an act.
So much of the frustration about this disease is caused by others who just don't friggin get it.
I'm just frustrated and needed to vent and this place sometimes feels like the only safe outlet for that.
maybe you can set a date night mid-week, nothing big - a nice dinner in with a short walk after dinner. i always found that it was easier to talk to my husband on 'neutral ground' - like while walking.
where you say "his disease and your treatment are effecting your work and your ability to take walks so thinking...
thus:
maybe HE can make the dinner mid week while you are at work and the doing the commute home in rush how by his going out in the MORNING to shop and buy the special dinner fixings. maybe then he could also push you in wheelchair that he picks up for you on those nights that you are unable to get out of the car when you return home from a full day at work at o dark thirty and can't get your joints to extricate you from the car. He can burn off some calories and you can smell the roses from the chair and then he can return you to the mid week date night meal he prepared.
by that time you will have maybe re-grouped some energy and be able to return his needs.
it sounds like i am being facetious. i aint. working full time out of the house and adding a commute while in disease is two full time jobs.
right now if he aint battling a chronic disease and he is not working then what he can give you is empathy for the disease.
When he gets a new great full time job then maybe YOU can cut back on your hours
vent away.
when the spoons are gone, they are like, just, gone.
send him to me when he gets the flu. i'll put ankle weights and wrist weights on him, give him a full dose of anything that induces brain fog (like nyquil mabye) and then tell him it's time to commute, put in a full day of work and then come home and have rollicking sex.
yeah this is the right place to vent.
hugs
Ros
Maybe he will get the message then.
Even though I deal with this "stuff" and a bit more, I never let MBDs2 do all the house work - That just don't cut it for me. This is a partnership and I am gonna do my share - hurt or not, hobbling or shuffling, whatever it takes ....
I have LOW tolerance for "the 30's style division of household duties". It takes two to make a go of it anymore with all things being like they are in the world.
Insensitive - MAYBE - sounds like selfish to me, but the idea of the thing is unacceptable to me.
Tight Jawed
Bluedogs2
Perhaps, if he is actively looking for work and having no luck, maybe he is starting to question his worth as a contributing bread winner. Perhaps he is checking to see if he is still "manly" (sorry, I don't like the word either, but with this "fog" I can't think of another). Men can be REALLY stupid creatures when they feel threated and not working for such a period of time may be working on that side of his mental state.
I am certainly no wizard when it comes to interpersonal; relationships and am probably a poor spokesperson for tenderness one to another, but I have known lots of men in my life that will wallow in self pity, why me, and all that male CR*P when they fail to understand their partners pain, or whatever the male doesn't want to deal with or fully understand heir own inadequate selves.
I apologize for my harsh comments in my 1st response to your post - I'm sure that he is a good person and a good soul mate - perhaps he is just feeling inadequate.
I also realize that my posts into topics like this can be viewed as stupid or silly and I can appreciate that view.
As I have said before in the past, men really have a hard time with either displaying feelings, emotions (all things soft) because they don't understand that in themselves. Secondly, when their partner is hurting, they have few skills at showing the art of caring.
Now that I have made a complete donkey of myself, I wish you well and Peace at home
Bluedogs2
adding the expenses of hired help when one person is temporarily out of work usually does not help in a financial squeeze. since one person is out of work, that person can be the temporary help I would assume.
it's hard to explain the effects of methotrexate therapy after injecting but if someone can see you in a coma on friday nights then they can understand what effect that coma would do to you on Monday work morning, Monday day and Monday night while driving home.
people run out of their length of understanding rope. Whenever the highest point of your energy is week day wise maybe he could show up at work and you could have a lunch date. that would be nice for both of you. Counseling is a good idea in theory but you are stretched to the max right now, wait until he gets a job offer and some of the stress and responsibility come off you.
if you have a vacation day, take it at the mid point of your energy returning before the MTX melt down crap starts again, just for the two of you, and have a sex holiday. :) if your energy get's a peak right at a certain point in the week. If you are not getting any energy renewal just sloughing from injection to injection, that's MTX with full time work, I had that. I felt like resigning from the human race.
Talk to your rheumie also.
Tell us what you do for work again, I forget. Is it draining? Is the commute long? Does work spill over to home? Can you make it through this financial strain? we are rooting for you. This is all stuff that weighs.
I know how you feel.
Ros
It is VERY hard for me to allow my emotions to come forth. Probably my upbringing, but I can see within this group so much pain and sorrow and confusion as the day to day life throws us curves when we have a plate full already.
I do so appreciate each and every person here. I have so many wishes in my life, I wish I had done this or that ... but when MBDs2 and I got back together I have tried so DANG hard to look forward and not wish my life away. I don't want any of us to do that.
Good Grief, what dribble.
Thank you, RASally, my dear VALUED Friend
Indycarr - Hoping the best for you and hubby. I would want that I had a MAGIC WAND and we would all be whole again.
Peace to all
Bluedogs2.
Take what you will from all of our posts. Long standing habits and behaviors are hard to break
I spent too many years being understanding and taking a touchy-feely approach to people and partners that needed a wakeup call.
We teach people how to treat us.
Take care of yourself.
prefer you to be honest and value your comments.
Yes, he probably is seeking validation and sex is a way to help smooth over the career woes. Indycarr I believe he's taking all you do for granted right now and agree with bluedogs he's acting selfish. You know the man and can approach it knowing the whole person.
I've read and I'm going to re-read all of your comments, each one has such valid points.
This does need to be addressed with him and he does need to step up his game around here, but I do agree his ego has been hurt over having such a hard time finding work.
I've got a lot of thinking to do.
Thanks again and a big hug back to all of you.
I just saw this note. I'm sorry your husband said those awful words. They are certainly egocentric.
Perhaps, a gentle reminder that you guys are a team, in good times and bad.
I work full time myself mainly for my wife. I don't want to see her suffer financially because of my durn disease. If you are like me, please let him know that you are holding on by your fingernails sometimes because it is so rough.
And, sleep is precious. Actually, more than that: it is a must.
Good Luck Indy,
TheWino
When you walk in the door are you done for the day, or is that when the dreaded second shift starts?
My father, who would be 95 if he was still alive, wasn't capable of making a sandwich or heating canned soup until after he retired. I'm positive he never did a load of laundry in his life, either. It just wasn't what men of that era DID. He always helped with the dishes, though, did most of the yard work, and Mom says he never hesitated to change a diaper when we were tiny.
Women grow up knowing we will be expected to cook, clean, do laundry, and tend children. The last few decades we have added making a living, changing a tire, paying the bills, and cleaning out the gutters to the list. Some men have kept up with the times better than others, taking on some less-traditional tasks.
It's hard to find a balance once things change as drastically as they do with unemployment. I agree that this guy is being selfish, and he probably has no clue just how obnixious this is. Does he meet you at the door with a Martini, slippers and the newspaper laid out, a la '60s television?
Even without a chronic illness this is a recipe for problems.
If you are a highly competent person, and I suspect you are, your high-wire act may look far easier than it is. Your husband needs a not-so-gentle reminder that you don't have a lot of reserves. There's nothing like being bugged for sex when one is totally used up and tapped out to bring up all these other problems of who does what, when.
Bluedogs, DON'T EVER censor yourself. As a man of a certain age raised a certain way, and as one who seems to have given much thought to life and relationships, your observations are, at least to me, always enlightening.
i was thinking of the: mortgage(s), the yard, the pet(s), the kids, the teens, the commuting, the carpools, the bills, home equity, the parents that are ill, your spouses unemployment status. you are a sandwich generation. and now you have this good ole disease and all the great poisons that come with it.
you have resentment from how the treatment takes away the things you hold dear including a wee bit of time for yourself (what's that?) to make it to the gym. but you can't make it to the gym because you would fall asleep on the drive there or on the nautilus circuit or yoga class. so you stop slowly doing things that feed your soul and make you, you, at night, before work, during work. you start robbing from you, dropping your spoons. you have no reserves. that has nothing to do with no longer being a sexual animal, or the cessation of having intimacy desires, being able to do the dance of the sacred. it just means you are tapped out. your mind can map out the fantasy or the arrival, your body is asleep.
yep, highly competent people do make things look graceful to quote Alto and Methotrexate removes the vestiges of reserves or spoons. You can be the most highly sexually attuned human in the world and MTX can have you face down snoring. it aint pretty.
"he rather have you feel nasty at work."
i would suggest to him that this would hasten the yuck stuff in the relationship rather than healing it. because you would be asleep at work or in the bathroom, again at work, and this would make you think of the additional sacrifice you had to make (on top of holding it together)
I bet he did not mean it. He loves you and he does not really want to make it any harder than it is already for you to function throughout the week while working.
making up is the fun part :). Have fun.
Ros
I agree your hubby was insensitive (at best). I hope you are able to work things out sooner rather than later. You certainly have your plate full right now. Blessings!
One thing that came to me is that people like those they do things for. This is psychological finding. (sorry cant give the reference but will be out there somewhere on the research.). It invokes interest and connection. So maybe some very little things to start with that you just get him to do to get more in tune in the wider sense. Obviously he must like you already but this is a different sort of connection apparently.
Many males define themselves by their work and it is hard for them to have self respect without it. He may be feeling a kind of depression. Doesnt make his attitude kind but helps explain it. (others have made similar remarks in this post).
Similarly with sex. Such an intimate psychological interaction with who we are. So trite to say it is different for men but it is. Even so in reverse how many females simply cannot cope without a man, any man, in their lives?.... You must have seen it even if perhaps for women it is less about sex itself.
And there are posts to read through on here about sex life and RA and the impact it can have on that side of ourselves.
Men like to "fix" things and RA isnt so easily fixable. His times of understanding show he cares enough to want to fix it. So there will be frustration. I am hoping he can get to that place of realising that your life together has changed but as the buzz goes can still "move forward" and words need action as well.
I wonder what sort of meals you guys eat? If he isnt so good at cooking could you enrol him in a man only cooking class? Could you food play together and have him learn about crock pot cooking say or easy stir fry. Many of the top chefs are men - could you get his ego involved in that concept? It would make such a difference to your life if, while he not "economically active" , he took over that.
Does he do any housework? Can you ask him what he could do to help and get him to think how he might do that?
The joint specialist visits are a help. My husband had one of his biggest changes of attitude though after he told his own doctor about my RA and the doctor told him how dreadful RA is and Many Things....He still cant cook but will help when not exhausted himself (he is workaholic farmer) with some things I find very hard.
Vent away and hopefully little ideas will emerge to make your life a bit better and having an outlet is fantastic. I either go cyber dead periodically or DS locks me out - probably in the process of one of their "upgrades"... but I am super dependent on this site and the lovely people on it.
And ps dont change your drug day but you could try experimenting with extra Vits (I find 1 -2 K vit c helps a little - I take the day before my mtx) and spreading the mtx dose out - if you take pills and not injection - over the day. But sometimes i am still stuffed next day.