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...
Since being diagnosed with RA a few months ago, I've noticed some changes in my relationship with my wife. At first she seemed very concerned and followed me around and waited on me like I was an invalid....I didn't like this btw, since I've always been an independent type person.
Fast forward two months later and I don't see that anymore, Yeah, she'll ask how I'm doing today but at times, I don't think she really understands. I love her dearly and we've always been honest with each other but I've got so I hate to tell her how I really feel. A few times just the other day, she ask me to do this or that, go here or there and I said I really didn't feel like it and it seemed she got a little upset. I really don't think she understands how this disease has taken it's toll on me emotionally and physically. I've lost almost 30 lbs in the last 4 months, I can't seem to stay awake more than a few hours at a time but at the same time, I don't sleep well at all. Only on nights I take the Mtx do I sleep all night. Other than that night, it's two three hours and I'm up walking around, napping throughout the day while she is at work.
My desire to be intimate is not there anymore. We've always had a great relationship when it comes to being as one but lately, I just don't have it in me. I'm either to tired or sick to my stomach. I feel like I'm cheating her or somewhat of a failure and my manhood is slipping away. Perhaps, it's depression that is setting in, or perhaps it's just the nature of the beast. Either way...it's taken it's toll.
Thanks for listening and I'll add that I really enjoy this board. It's a place where I feel comfortable enough to sound off and be understood. To be honest, I don't think people that are perfectly healthy understand any of this, the emotions we go through daily and how hard it is for us with RA to really be ourselves like we used to be.
Fast forward two months later and I don't see that anymore, Yeah, she'll ask how I'm doing today but at times, I don't think she really understands. I love her dearly and we've always been honest with each other but I've got so I hate to tell her how I really feel. A few times just the other day, she ask me to do this or that, go here or there and I said I really didn't feel like it and it seemed she got a little upset. I really don't think she understands how this disease has taken it's toll on me emotionally and physically. I've lost almost 30 lbs in the last 4 months, I can't seem to stay awake more than a few hours at a time but at the same time, I don't sleep well at all. Only on nights I take the Mtx do I sleep all night. Other than that night, it's two three hours and I'm up walking around, napping throughout the day while she is at work.
My desire to be intimate is not there anymore. We've always had a great relationship when it comes to being as one but lately, I just don't have it in me. I'm either to tired or sick to my stomach. I feel like I'm cheating her or somewhat of a failure and my manhood is slipping away. Perhaps, it's depression that is setting in, or perhaps it's just the nature of the beast. Either way...it's taken it's toll.
Thanks for listening and I'll add that I really enjoy this board. It's a place where I feel comfortable enough to sound off and be understood. To be honest, I don't think people that are perfectly healthy understand any of this, the emotions we go through daily and how hard it is for us with RA to really be ourselves like we used to be.
I just had my first grandchild eights months ago. Due to this dang disease, I wasn't able to pick him up very much during the first five months of his life as my body just plain hurt too much.
I can, at times, pick my grandson up now. I know it's a big deal to my family as I can hear them talking behind my back that "he actually picked him up today." They act like I've had choices in the past.
I still work, Grandpa, so I try and store up my energy to get through my work week. Plus, I hate having to cancel a commitment my wife made at the last second because I feel terrible. This is starting to happen with some frequency.
My marriage has definitely taken a hit. My wife thinks she understands the disease when in reality, she doesn't get it at all.
I feel safe on this board so I will just throw it out there. I am in my late 40's and my sex life has taken a gigantic toll. With the testosterone, thyroid, pain, and sleeping problems, it certainly is a burden. Plus, my sex drive has definitely decreased. As a man, it hits you pretty hard. I take medication for this also, if needed. But, don't feel alone because as depressing as it is, it is part of the disease process.
I, without doubt, still mourn for the virile, masculine, and athletic man that I was.
The unrelenting pain and incessant fatigue just seem to take a big, big toll on my body.
My wife told me recently, "I feel like I'm single because every time I go out, you're never with me." Yes, this stung pretty hard.
We are currently trying to work through the challenges brought on by my health problems. The oddest thing is that all of the women that I work with really, really like me and recognize my intellect, wit, and willingness to help at any point. I need to transpose their attitude to my home life.
They are just so worried about me at work. In fact, one of my colleagues was able to hook me up with a superb Rheumatologist who "doesn't take new patients."
I'm trying the best that I can as I'm sure you are doing. You cannot give more than that.
Keep the lines of communication open and I bid you good tidings.
Warm regards,
TheWino
whino...great advice about keeping teh lines of communication open .. ...to here what is on a mans mind and in his heart is very very sexy :)
I am so new to this that "how I used to be" is still fresh in my boyfriend's mind. Maybe loved ones forget in some way, given time, that you haven't gotten better physically, but you have gotten better at coping.
So, it seems to me that this is a delicate balance between complaining too much... And maybe not complaining enough (?).
Maybe complaining is a bad word... Maybe articulating is a better
word.
Love life? Total backburner. When you can barely take the pain from just walking to the kitchen, well, extracurricular activities are less important. Hard to make "Ow... Ow... Pop... Snap... Owwww!" sexy.
I'm a 55 year old man and was diagnosed 3 years ago. Long story short, my RA got progressively worse to the point I had to stop working 1 year ago.
I feel the fatigue part of RA, or what I commonly refer to as the "FOG" is more of a problem for me than the pain. I can deal with the pain a bit, plus with pain meds I can make it through most days but still can barely walk. I am still have a hard time dealing with the FOG part.
I've been married for 21 years (oops - just realized my anniversary is next week...!!). I guess in a way I am kind of lucky in that my wife is partially disabled from a permanently damaged sciatic nerve from a surgery 8 years ago. So for her it is much easier for her to understand I think since she is in constant pain.
RA has changed my life - actually has turned my life upside down. But now things have settled down a bit. To try to put it into words, I feel like our marriage has gone to the next level. Intimacy is pretty much gone, but that has been replaced with a great feeling of companionship now. I guess the feeling might come to older married folks once in their 60's or so, but it came a bit early in our lives.
I think the key for her to understand is my educating her on what this fatigue does. She has read everything that I have on the subject, and we talk about it often. But since both of us are in constant pain, we make a practice of not complaining to each other too much. Only on those really bad days will we bring it up.
Another part of the "manly" part for me was when I had to stop working. I've been the sole source of income for our household since my wife had to stop working 8 years ago. All my life I've been a worker, and when times got tough I automatically would work more to keep us afloat. That part bothered me so much the last 6 months I was working - how would we survive? I am supposed to be the rock here and keep the money flowing. The day I walked away from work was one of the hardest days of my life.
The first year was very hard, but things have settled down now. I wish I could give you some sound advice instead of my rambling above. A couple key points which I think are important:
Try to get your wife to read about the effects of RA and understand them. This is key to moving forward.
I know it is so hard to ask for help, but you will need it. RA doesn't go away so you need to get used to letting other people help you - very hard to do!
Don't fight the fatigue/fog. Even now on Humira, Methotrexate, Prednisone, etc, the fatigue is still ever present. There are still the mandatory 2-3 45 min naps everyday - my body just shuts down. If you try to fight it, the next day it will only be worse. Oh and by the way, I am also up every 2 hours at night like clockwork.
Don't be too hard on yourself. At first I was mad at the world. I've never been sick all my life and just didn't know how to deal with it. Now after 3 years I've gotten used to it I guess. It was so hard to go from the active person working 70 hours a week to sitting in a chair most of the day. Once I finally admitted to myself that this is the way it was going to be for the rest of my life, the sooner I could adjust and try to get on with my life the best I could considering my condition.
I feel weird when I visit my Rheumatologist - the place is called XXXXX Arthritis and Osteoporosis Center as well as a research center. I am the only guy in the waiting room of a dozen or so patients each time I go there.
Thanks again and God Bless all of you and God Bless this board!!!
Point to my rambling - keep talking, keep listening .... when you feel good enough, hold her, dance with her, snuggle ...
When you hear her crying quietly knowing that we aren't what we were, reach around her and pull her close ...
And when she hears you crying because reality slips in and we let down, she will become the person we knew - years ago and moments ago
Don't lose one minute looking over the shoulder, take her hand and walk along, we do and we love it and each other because we care for each other
I am so sorry I'm not what I used to be, true, but I am finding things in me that are better, that make me think about things differently and finally ... if I need something and I struggle to get up off the couch or out of the car, I always say "Honey, Can I get you something, I made it this far"
Rambling over. I understand - I am living your life as well.
Be well, dear friend
Peace
Bluedogs2
sorry guys that there is so much estrogen in all the waiting rooms. do you go on that site RA guy, i think it is? I enjoy that site.
remember that pieces of the intimacy journey can be substituted for the whole enchilada so to speak...and that any kind of vulnerability or intimacy is a momentary joy, a little oasis in the sameness of this disease, don't reach for the aphrodisiac but just remember that when it presents itself it is powerful enough to temporarily unseat the discomfort or at least to force it to push over for a second :)
you seem to write well and talk about the office folks noticing your wit. write her a haiku :) a poem, weave magic with words
Ros
You are so bright. I used to write poems to my wife but, since reading you post,I realized I haven't for many years. I am going to take you up on your idea I enjoy playing around with words anyway. Thank you for reigniting that spark.
For all: I do buy my wife flowers all the time: two to three times a month. I raised three daughters, who have all moved out, but I wanted them to know what to expect from a gentleman and how they should expect to be treated.
To the original poster: I did this more than a decade ago and my wife still talks about it. The next time you but her a nice present, make a game out of it. I wrote ten or twelve notes with each note asking her to look in another spot.
For example: the first note was on the door when she got home and said I have a present for you. For more information, look in the oven. When she opened the oven, I had a note hanging that said. For the next round look on the dining room table. This note stated, you are getting close, please check the mirror in our bathroom.
Her anticipation grew with each note. I could tell she was having fun!
Anyway, I sent her to ten or twelve spots and she finally found her jewelry under her pillow with the last note.
I know that she loved this because I recently came across the notes I made her for this 'fun game' hidden away in her jewelry box from ten or twelve years ago.
Maybe, I will do this again.
Everyone has great ideas. I'm thankful for everyone's support.
Grandpa: I only hope for the best for you, sir. I know the spot you are in and am there myself. This dang disease robs one of a lot of dignity.
Sincerely,
TheWino
I will share something I don't often share.
My husband had prostrate surgery at a young age. Second youngest patient his surgeon ever had. As far as my love goes it remains the same. I love him no matter what. It bothers him much more then me.
Now I have multiple conditions that cause chronic pain.
I went from super women to being limited.
Never sat down always doing something to living in exhaustion & pain daily.
I don't think he gets it at all. For that matter I honestly think he's in denial. Even after hearing my doctors.
It's very hard to have the ones you love the most not understand.
In reality no one can totally get it unless they walk in our shoes.
The little things matter. The love yous, listening, small gestures.
Most women appreciate those small things. I promise you that.
She's a lucky lady. You care enough to share.
You'll be fine because you do care enough.
Blessings,
Sammy