[Roseanne]

Before I got diagnosed with Lupus I was always quite an active, outdoors type of person - kayaking, cycling, abseilling, hiking ect, but since my joints are painful much of the time and I tire easily, I have had to give a lot of that up. I have come to terms with this over time, and resigned myself to the fact that I will never be as active as I was, but it is proving much harder for my husband to accept it. He was brought up hiking and skiing in the Rocky Mountains, and while living in the UK goes surfing and climbing on occasion, and runs about three times a week. He told me it really bothers him that I can't do these things and that it is dissapointing... how can I respond to that? I am trying my best to keep as active as possible and am hoping to start some gentle cycling again in the spring, but I am never going to be able to keep up with him.

Does anyone else have this kind of problem, and how do you respond?

 

[BigSis]

hi Roseanne.
I had this problem. My husband has always been sporty and still always has a cross country run or a marathon to train for.
His answer to most problems was 'more exercise' and he really struggled to understand my fatigue.
During this past year when I have been more ill he has come to understand. Ironically because while flaring i lost so much weight that he could see that i was ill.It's funny how people still need evidence of illness:sad:
We do walk together but he now allows me to set the pace:wink2:
Also he respects that I have developed different interests according to my capabilities. I paint, garden and after many years have picked up my flute again!
Perhaps if you encourage him in his activites and show him you can cope with being left behind....at least for the moment, he will feel less bad that you can't join him.He may be feeling guilty that you can't take part while he still enjoys being active in this way.
Take care

 

[sam101360]

You know, it's funny...my hubby and I have always had different interests when it comes to activities...

He was always into baseball and golf. While I was into SCUBA and cooking

I did take up golf and did fairly well before I became ill and joints got to bad to hold the club and swing.

Now I garden (indoor - aero garden) and watch TV...I need to find another hobby that's for sure.

Together we:

Read - I read a book and if I think he will like it he reads it...then we talk about it

Walk and go for long drives (we take the dog - as he loves the car too).

We are huge movie fans, so watch alot of DVD's...I make neat snacks and we cuddle with the lights off...watch and snack.

Swim, we live in Florida, he heated the pool and I can go in year round.

I think BigSis is right, you need to help him understand that it's OK for him to do these things without you, and find something new to do together that is within you realm of abilities and will still hold his interest.

Stephanie

 

[acard]

Roseanne,
I absolutely know what you are going through and it is the toughest part I think sometimes about this disease.
My hubby only came around when he too could see:wink2: just like bigsis said how sick I truly was and had to give up my job.
I think you need to tell your husband that you realize that there have been so many changes, but it is very hard on you already that you really need support not someone who is disappointed and putting some demands on you. You may be able to go back to some of those activities, but just not now.
Can he walk with you, hold your hand and enjoy that? There is stuff we can do in the water-would he swim with you? My only other gentle activity I can think of is yoga-would he be willing to do something like that? I think he is going to have to compromise until you are feeling alot better.
I don't have a lot of advice about what you all can do together because I don't know what all is going on with your lupus. I can say that I am sure he will do whatever is best for you. He like so many other spouses will come around. Just keep your communication going.

I hope you will be skiing again -I sure am dying to go to our mts. that for the first time in several years have awesome powder. I however will never be able to ski again I don't think. I am willing to watch hubby and daughter and sit in the lounge sipping hot apple cider, coffee or cocoa I am not picky.:lol: Hey, we can ride snowmobiles8)

I hope you feel better very soon here.


Hugs,
Becca

 

[ixora2508]

My boyfriend and I used to do many things together ,when I was undiagnosed he did get upset because he dont understand.. but after my rheumatologist had a chat with him about the disease and expained it to him .he starts to understand that I am not faking an illness .Lately we speant less time in the sun but still love doing things together although deep sea fishing and sunbathing is something i stopped doing ages ago...sigh nevermind i am tanned already.

 

[denalirat]

Hi Roseanne,

This has been one of the toughest things for me to deal with. As a 24 year old young adult, I feel like I should be invincible and people often have those expectations of me as well. I have had symptoms for several years, but went through a 1-2 year remission where I was able to become very active again. I am very much into outdoor activities -- backpacking, hiking, sea kayaking, fly fishing, rock climbing, etc. When I came out of remission, nobody could understand why I couldn't do these things...obviously I had done them before, so why not now?

My family and boyfriend are great about these things. They don't get disappointed in me and actually work to limit what I do, as I often challenge my limits a little bit too much. While my boyfriend likes doing outdoors stuff, he doesn't like it to the extreme level that I always did so we haven't really run into things there. I imagine that when I feel better, I'll be the one pushing him to do more active things and he'll be telling me to go away! :lol:

Anyway, I try to participate in more things now that I can handle. I've pursued more with my photography and I read a lot...both things that I enjoyed before lupus and both that I will continue to enjoy. I try to do the things I miss when I can handle them...sometimes that means playing the piano and other times it means doing a very short hike/walk through one of the incredibly "wild" city parks here. It is all about moderation and I just have to remind myself that I can't feel guilty for what I can or can't do. It helps to have other people (such as my boyfriend) remind me of these things too. I try not to worry about the people that hassle me over it...they simply don't understand.

-kit

 

[confused1]

My husband and I were avid birders, hikers and mostly just plain walkers. We rode bikes and spent hours gardening together. For years I got sick every time we went backpacking or went to the beach for a vacation. It wasn't until I was diagnosed that I learned that the sun was making me sick. I'm very sensitive now and just don't go out much. It is a hard adjustment. My husband lives to hike. We live in a place where a major trailhead is about 1/4 mile from our front door.

I think everyone has to deal with this in their own way. You grieve for the loss of your good health and normal life. Your husband grieves for the loss of your companionship. So hard. The stages of grief are all there, including the anger part. It helps if you can keep the feelings focused on the disease, not on each other.

Whether you've found it yet or not, there is something you can do with your husband and both enjoy that doesn't make you sick. Movies, books, ames, dancing (a bit), Marriage counseling may help you both make the transition, because like it or not, you are no longer the person you were. It's not fair. It totally stinks. But there it is.... you can't do the things you used to. But you can do other things. Now to find one -- or several. And let your husband know that he can go hike or surf or whatever and that you'll be tere when he comes home. Then schedule some time you two can spend together.

Good luck. This is something nobody ever asked for or ever was prepared to cope with. But I believe you are strong enough to do it.

Keep us posted. Come back and tell the good, bad and ugly, LOL.

Hugs,
Sunny

 

[peonyprincess]

Roseanne,

First and foremost, I am so sorry that you are going thru all of this turmoil. There should be no reason that you are experiencing such disappointing comments from your partner. When you got married, you would have both agreed to love and honour in sickness and in health. Maybe he should be reminded of this. My husband has stood beside me and helped me walk. He has pushed me thru WalMart when I could walk to further. He parks closer to shopping areas or drops me off first. When I cannot get out of bed, he takes care of the kids, the house, etc as do the kids. There are times that I get very down on myself because I cannot do certain things. He tells me that he could never be disappointed in me. The shopping centers might be disappointed because I cannot come out and visit, but he is not disappointed in me. He said that the only time he could be disappointed in me is if I do not want to spend time with him.

Talk to your hubby and let him know how you feel about hm saying such hurtful things to you. He may not realize that it hurts you so much. If he continues remind him of your marriage vows and see if tht works. Or if you need to, because men can sometimes be rather dense, you may have to shame him into the realization that while he may not be happy what the Lupus has done to you both physically and emotionally.

Good luck and I wish you the best. We will always be here for you.


Nancy

 

[setApart]

Over the past 3 years I've dealt with many medical problems, a bad car accident which resulted in neck surgery to replace a disk that was ruptered, varicose veins, steroid injections in lower back due to back pain from car accident, knee surgery(which I believe is related to my lupus inflam) and being dx w/ lupus, then gaining 40 lbs to boot, this has all made me somewhat depressed, I have 3 small children, so the chronic pain and fatigue were so overwhelming, but since starting plaquenil has helped so much. But now my hubby is making it so bad my making smart comments about my weight all the time and then telling me I'm too obsessed about the lupus, well if I'm not gonna find out what's wrong with me who will, he doesn't seem to care. When I first told him I had it he was like well how long do you have? Then he gets on me all the time for not cleaning the house and says things like " so your telling me the lupus is so bad you can't clean the house" I work full-time it's so it's hard sometimes. The other day he actually told me no one would have me because I was so big, I told him he'd better stop saying such horrible things because something might just happen like someone might just actually find me attractive. I'm not extremely overweight just about 40 lbs. Sorry for the rant, I just had to release some tension.:sad:

 

[Maia]

setApart: your husband is almost textbook abusive emotionally/verbally if not in other ways. You deserve better than that & he's unlikely to change without (1) an admission of his problem & (2) counseling.

It's not so much about someone else finding you attractive but about you realizing you are too good/attractive/nice for an emotionally abusive man & you deserve better (& would rather be alone than put up with all that from him).

My husband is more like Nancy's - he is not very good in the emotional/talk/discuss the problem but he speaks volumes through his actions.

He drops me off at events, he drives for me, he watches our daughter evenings/weekends with little help from me, prepares meals frequently (simple ones but he does it without complaint!), he agreed to hire a maid service but before that he did well over 90% of the cleaning. He mows, shovels snow, picks up dog poop, cleans litterboxes, etc. etc. etc. All without one word of complaint. And he happily snuggles with me in bed at night (before we part to separate rooms! *lol*)

I hope you realize that you deserve much better than what you're getting!

 

[helloos]

I too was very active and now am not.

I found it takes some time to adjust and to try to do other things that you can and find new hobbies and interests and some other ways to stay in shape. To me accepting the change for life, I don't do. I always keep room for the "hope" and try to look at today only.

Of course, listening to the body is number one. If the body doesn't feel like it can do anything, sometimes I just lay on the ground and do some stretching and light exercising.

I am wondering if you husband meant that it bothers him to see that you are not doing the things that you enjoy rather then it bothering him that you can't keep up. If you used to do these things together, then both of you are noticing that absense. It is important though to try to do other things together that you can both enjoy and that won't put any strain on your symptoms.