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Discussion Starter · #1 ·
Hiya

This is my first post here, and it’s sort of to outline why I joined.

My husband has SLE and Hughes Syndrome. We met at University, and so I only knew him for a few years before he was diagnosed, we’ve been married for 10 years this May so knew he had SLE before I said ‘yes.’

Although he takes a pile of meds twice a day he is able to work, but once he comes home he’s not generally fit to do much, which I understand. I still get frustrated (which I feel guilty for) we have an 8yr old son, and I work full time too. I fully expect that one day I will be the main wage earner, so I have to work.

He looks fine, which means that people don’t really get it. The can’t see the 30% kidney function, the 2 stokes he’s had, the joint pain, the high blood pressure the stained dry legs from side effects of the meds he has to take. Only I see that.

I suffer myself with high-blood pressure and depression which has various other associated issues like self-harming and social anxiety disorder, and those I try to hide and push out of the way.

I guess I just need somewhere to vent a bit, where people will understand maybe that for me it’s the little things as well as the big things. It was sort of set off this morning when I had to take him to the Docs, he’s in such pain with his feet that he can hardly walk – probably gout the Doc said – and a friend of mine who I love to bits replied to an email saying ‘hope he gets better’ it just made me want to scream ‘he won’t’ it will just be another pill which may reduce his kidney function even more *sigh*

Umm, I guess I’d better stop there before this gets waaaayyy too long.

Terri
 

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Welcome to the site, and it sounds like your husband is very fortunate to have you and a lovely son in his life. I know I am very fortunate to have my husband who helps immensely with our daughter and animals & me ;)

It certainly is physically and emotionally trying to be in your position too. There are a few others here who don't have lupus but know someone who does have it and hopefully they'll come along soon to offer their views and support.

PS: my dad has gout. He's managed to avoid going on daily medication by taking one Aleve (naproxen sodium) a day. And doing the symptomatic treatment pills when he gets hit with it of course which is a rare thing since he started taking the naprosen sodium NSAID each day at a low dose. WIth kidney issues medication certainly does become a problem... it's not fun.
 

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Sorry to hear about your husband. He is very lucky to have you there for him. Just remember if he gets short with you or has some sort of attitude with you it most likely will be because of the disease and don't take it to heart. You guys really must be in love for you to stick by him just don't forget that. Laurie:wink2:
 

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Discussion Starter · #4 ·
Thanks very much for the posts.

Yeah I care for him a lot, he’s a good husband and a good Dad.

I have to admit I was hesitant at posting, I was worried it would sound like a ‘me, me, me’ post. Some days I do feel like screaming ‘what about me’ but I don’t lol. I am at least aware of what a selfish illness depression is, and it’s hard at times to push it to one side and carry on as normal but I try to.

My therapist did point out to me that I tended to make allowances for him at times when it wasn’t the illness when he was simply being a lazy ass. I also know that there is more he could do for himself and that frustrates me to a crazy level at times. Still he is a big boy and I can’t make all the decisions for him.
 

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First of all, he is a very nice looking Husband. You must be really proud of him. Perhaps he is lazy sometimes,maybe you could sit back a little and not jump to do things immediately for him. Having said that I am equally guilty as it is often easier to do it myself!

You need a bit of time for yourself, with a lovely Son and a job you can't get much time for you. Try to take some even if it is only 15 mins. here and there.
x Lola
 

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Discussion Starter · #6 ·
Oh my icon isn't my hubby - it's one of the Torchwood charaters - and yeah he is VERY good looking *giggle* I make lots of Torchwood and other icons.


Yeah it's a fine balance of working out what to do and putting up with pissiness when I dont' do it *sigh*
 

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Hi Terri

Just a sugestion, try to have some time just for you. Perhaps you and a few close friends or an outing alone. It helps me alot to get away from my house every chance I am able and feeling well enough to do so.
I live with the Lupus, amoung other problems, and so I know this helps free my mind if only for a short while. It's hard to live with this disease everyday, get help with the depression if you haven't already. We gotta do what we need to in order to make it through the tough times.


Take good care of yourself
Best wishes,
Annada
 

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Oh Angel, I don't watch Torchwood. My Daughter and Hubby love it. Is the picture John Barrowman? They go on about him!
I am sure your Hubby is just as good looking though.
x Lola
 

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Most people don't get it...

Hello Terri,

You are without question a thousand percent right on the mark when you state people don't get it. My own in-laws and the entire family make me feel quite worthless. I don't ever tell them a single thing anymore as far as my health is concerned. Ever. I slipped up I believe in January it was when we last talked... I had a wicked migraine and mentioned that purely by mistake and the response was 'oh.' It's how it's said, the tone and all...
I stopped mentioning anything to them because their responses were always very hurtful. :tears:
Even my oldest daughter is very critical of me. Believe me it hurts very badly.

As far as pain goes, I have Lupus & FMS and numerous other problems... I live in pain 24/7 and 365 days a year. I have not yet had a restful night of sleep. It's been so long that I've had a true night full of sleep. I fall asleep and am up an hour to an hour and half later in a lot of pain. I don't believe in popping a pill... I'm one to occupy the mind in other constructive ways rather than ways that are destructive. Destructive is not at all good for the mind, the body & the soul. Sometimes I read. But if pain is truly out of hand, I will watch a documentary or do something that occupies my mind and hopefully will help pain go down a couple of notches. I am *constantly* scolded by the doctors and by my own family for not taking medication when pain acts up. I have tried to explain to them I don't LIKE the feeling of being doped up. I don't like the feeling of losing my memory more and more each day... I will take breakthrough pain medication if I truly need to. My own girls accuse me of being a lazy arse. Yes that hurts like the dickens. They'll constantly say you don't do anything, why should I do anything? They'll also say it's your house, you're t he one who has to take care of it. They do not even clean up after themselves. They do not lift a single finger to help around the house. All they want is our vehicles and take off to college, take off to work, take off to get nails done, hair done, tanning bed, whatnot... they expect us to pay for the gas which is over $3.30 a gallon now.... (that's cheap compared to many other states) but still... one income. The girls are 22 and soon to be 21. It pains me a great deal they just do not understand the pain.
My husband is an ABSOLUTE SAINT. He is truly one in a billion. He truly is. He helps with the laundry, the kitchen, vacuuming, you name it he helps do it. He is not a handyman at all though. He would rather clean house than spend time outside the house doing anything. He is a through & through city boy. He grew up in NYC all his life. I will do the mowing of the yard and the upkeep of the property since the facade says an awful lot about the owners of the house. It's very important to us to always keep everything very clean.
However, I have become much more ill since October of 2005 and things haven't calmed down yet. I'm still on chemotherapy. I am NOT lazy. I am extremely exhausted, and believe me, if I could I WOULD do anything to clean house, to stand and cook meals.... standing becomes so painful for me that I get very ill and start throwing up... (that is a new thing of mine). I don't know why I throw up when pain gets bad. It wasn't like that before.
It upsets me to no end when people think we are being lazy. We aren't being lazy at all. We are trying to stay as stress-free as possible to avoid any flare-ups. Flare-ups aren't easy by a long shot. They happen at the drop of a hat.

Your husband is truly very lucky to have you. Believe me I appreciate people like you. I truly do. I thank my husband every single day for everything. I mean it when I say Thank you... I make SURE he knows how appreciative I am of him.

As far as behavior goes... that is something we can control. I don't EVER lash out at my husband. He doesn't deserve it at all. I have no right to make him feel bad or guilty when he does so much after a full day at work and comes home to help even more. We are extremely close and talk a lot about how I'm feeling, etc. He has his moments and it's at such times he needs my positive input. I can't for the life of me see what on earth a negative input would do to anyone.

I am extremely glad you're seeing someone just to let off steam and to be able to collect your thoughts together, etc... I applaud you for that. I wonder how his family is when they learn of his illness. How are his friends? Your family?

For me, I am not a social person at all. I'm a loner and like it that way. It's who I am and I feel protected that way. I have two friends who I've been friends with a very long time... one of them constantly says, "I hope you feel better soon" and "I'll pray for you"... I hate that! Hate that! I am going to have her read the "Spoon Theory" so she will be able to understand what it's like for me. Everyone really has to have a copy of "The Spoon Theory".... There are a couple of things I have changed in that theory because it doesn't quite fit me... But... as far as you go.... may I please make a suggestion... I ALWAYS tell my husband to GO have FUN.... his fun is golfing, and w/o question hanging out with our friends.... It makes me very happy to see him get out and enjoy himself. He needs it. When I was healthier and not in so much pain, he let me go away for a week every single year... but believe me, I have no desire or interest to go anywhere at all now... the sheer thought of it exhausts me. But... tell your husband you would like to go to a class or take art class or something... something FOR YOU and ONLY YOU.

Even though the girls hurt my feelings every now and then.... I make it a habit to make sure we have a mother/daughter day... I make absolute certain it's just one daughter at a time because having them both together will cause jealousy with one of my daughter's and I cannot tolerate that. So recently I went to "Fired Works" where I got something off a shelf that I really liked and did ceramic painting.... my daughter got something s he liked and did ceramic painting and it was fired... I haven't finished mine... so I will bring my youngest daughter and let her do something whilst I finish my piece... it's a way for us to go out to lunch and just spend quality time with each other. I don't ever and I mean ever discuss how I am feeling. I find whenever I discuss how I'm feeling, it is when they say very hurtful things. My youngest daughter rarely if ever says anything. It's my oldest who always says very painful things and when I'm very quiet, she'll just say 'what?'.... she'll keep at it and I'll just say nothing. She keeps at it and I'll just say, there's nothing to say, you've made your point rather clearly. She'll say so what's the problem? If I EVER spoke like that to my own parents whom I haven't seen since 1989 I would just be buried alive. I could never, ever speak so bluntly to anyone. It's just not who I am. Some are far too blunt and some know when to bite their tongue. Oh well... :shrug:

I'm sorry this went on so long... But you certainly deserve a standing ovation. Come by often and just vent as much as you want. No one is going to bite you. No one is going to condemn you. You are ENTITLED to feel how you feel. You are human!

I've been at the computer a long time and I'm starting to get a bit antsy and need to get going... Time for art.... I LOVE ART.... love it!

Please join us anytime you can in chat... we have an awesome time in chat! Don't we all?!!!!! :wink2:
 

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Hello Angel
I'm one of the other people on the site who does not have Lupus.
My wife does and that is why I joined.

You are correct when you say that people do not understand. It is hard to understand this thing.
Even the people with it and the family like us struggle with it and we deal with it in our own way each day.

It is easier for people to understand what they can see and alot of what Lupus does they can not see.
Some of what they do see they have a hard time trying to make an association with Lupus.

This does have its effects on us as well. It is not easy to see someone you love in pain and hurting.
 
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