No one Understands at all

Hello Lynny23,

I'm sooo sorry that you are having such a rough time.  I'm usually on the lupus thread, but I look at posts on the RA site, cuz I really think that is what I have more than lupus (only have 3 symptoms but rhuemy says it's lupus).  Regardless, I have autoimmune issues.  I wish you could get him to go to one of your appointments and let the doctor explain how the disease works and what you may experience from day to day and how he could help so you have more energy to do the fun things with him?  Unfortunately it took my husband seeing me become bedridden before he really realized how sick I had become and he was soooo worried, because he knows that was not who I was.  That's when he went to the doctor with me and realized that this was serious.  I was always active, probably overdid it on many occasions, but that was my personality and he realized that I needed more help at home and with daily tasks.  At first it really bothered me that I couldn't do as much as I did, but in the long run maybe if my family would have helped out more I might have not pushed my body to the brink.  Do you have a good relationship with his family?  Maybe by talking to them they could also help him to understand how to help you and to strengthen your relationship.  Take it one day at a time, but please don't overdo it.  I realized that I had to take care of me regardless of what was going on at home - so if the laundry don't get done, it don't get done, if the shirt is wrinkled - let him iron it, if you are to tired to cook, order take out, but always take care of you first!!

Hugs and Angels,

Lynnette

DX - sle and carpal tunnel

RX - plaquenil, prednisone, etolodac, lisiniprol, darvocet and flexeril, hormones and vitamins

Lynny,

Sigh. I know exactly where you are coming from. Everyone has good advice and it's worth a try but it didn't work for me. Some husbands, friends, family will just never get it and that's why a lot of us come here or to other RA forums.

My husband saw first hand how bad this disease is because it hit me like a ton of bricks and he had to feed me, dress me, take me to the bathroom for a couple of months until the right med combo kicked in. Obviously he attended the doctor visits with me and heard all the details. First off the care giving got to him. He told me I'm not a caregiver type- sorry and that absolved him of all guilt for being angry with me because he could not just yank off my sleeves in the morning so I could get in the shower. He would roll his eyes at how long it took me to shuffle to the bathroom and try and lift my feet that felt broken over the tiny ledge of the shower. He would shove spoons of pudding in my mouth faster than I could eat it to get it over with so I could take my pain pills in the morning....I could go on & on. Now that I have overcome such disability he takes advantage like I hear you talking about. I am so fatigued but I get everything done but never fast enough or good enough. Now he complains more about pains he has- I mean it actually sounds like RA he is talking about! I tell him go to the doctor- you must have RA. He doesn't believe I can't drink on MTX and will not stop drinking so it's not a temptation for me. He is totally non supportive.

Someone once advised me to fake that I can't do things. They said never carry something heavy even when you are feeling well enough that day to carry it because people will hold you to being able to do it. They can't grasp that one day we can be OK and the next maybe not...

I can't do that. I never was one to ask for or want help. I am very independent but darn- I hate being taken advantage of too.

I wish you all the best that you can bring your husband around but sometimes we have to ask ourselves....is it just their personality? How did he handle other obstacles between you? My husband didn't change because I got sick. I did. I needed help, support and understanding that I was able to do without before....

It's far from gender specific.....I have some of the same problems with my wife; as hard as she tries to understand and accommodate me, her patience is limited.

The simple fact is, only we know what we're going through and there's no way to prove it to anyone else. Our doctors, family and friends will be what they will be. They have the luxury of pretending that things are that simple -- that we can just "will away" the difficulties -- but we do not.

House pride has to take a back step, my kids are older and I get them to help me out with the washing, vacuuming etc. Just making dinner can be a huge obstacle on a bad day, especially if I've been working. I make extra on good days and freeze meals for the rough ones. Shopping can be a nightmare all that lifting, I had to ring for help when I was really bad or use the internt shopping and get them to deliver into my kitchen.
I'm just re organising my priorities of where I expend the energy...Plus I have the afternoon naps on bad days, hard with little ones though. Do they go to daycare or give you a break at all?
Good luck with it all, we've all been there or are there with you, golitho

Hello! I just got married and know what you are going through. My husband and I have been together for 4 years and he just thinks I should "SUCK IT UP". So for the first time I brought him to the doctor with me and made him sit while they drained 15 cc off my knee of fluid and shot me up with cortisone. After that he actually asked the doctor questions and after we left and got in the car he turned to me and said "I am sorry, I never thought it was that bad or painful". It may help for your hubby to see and hear it from a doctor.

Wow-do our husbands have a clue??  This is my first day to the forum, and I am totally blown away.  All of you echo what I have happening in my life daily.  Thanks for all of the shoulders, though!  Definitely make time for yourself.  I started doing yoga when first diagnosed after the meds kicked in, and it helped greatly (physically and mentally), and I get a massage once or twice a month. My husband complains that I don't want to do anything all of the time.   Gee, I work full time, take care of almost everything at home and he is unemployed!!  Stress-what stress??  He hates it that I go to bed so early, too.  Thank goodness for all of my girlfriends and support groups like this.  Keep the faith, ladies (and guys)!!!

Wow, I am just reading this forum. I am usually on the FM and Thyroid threads. I am very sorry to hear the lack of support from your husbands. I am not married, but I had a boyfriend who left me after learning about my pre leukemia diagnosis. 2 weeks before I was to find out whether or not I needed a bone marrow transplantation, he dumped me. He said this was not the relationship he wanted. If I had this done, I would have been in the hospital for 4 months. My ex boyfriend did not want to waste his time in the hospital because he had to take care of his dog. That is what he told me. Could you believe this. I know they have dog sitters and he has the money to afford it. Now that I am not needing this transplantation and he knows I don't need it, he decided he wants to be my friend and hang out. So I can hear your pain and suffering about no support. I just wished they could be more understanding. I have a lot of medical problems and not having the support worsened my situation. The worse thing about having all this pain is not having the support and understanding feeling like no one knows what you are going through. They think it is all in your head. Iam also a breast cancer survivor. Good Luck to all of you. My heart goes out to you.
Simplistic007

Having kids with conditions like these, and seeing them have to go without the parent that you could be if only your body would stop getting in the way....is often more painful than the physical agony itself. Be patient with yourself. Be willing to go easy on yourself particularly when it's most difficult to avoid joining in with the chorus of external voices that are being unfairly hard on you.

Simplistic....what your uncle is going through is all too familiar. It's the same old song, unfortunately. Almost all of us have to face it in one form or another. You just can't understand what this is like until you experience it every day for years on end. No amount of agony felt for a day, a week, or even a month can open the door to understanding what this is like.