Chronic Illnesses Ruining My Relationships

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
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sardsy75
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Chronic Illnesses Ruining My Relationships

Postby sardsy75 » Tue May 06, 2008 10:43 am

Hey

I'm a muddled mess at the moment and really dont know what do, say, or where to turn. I DONT want this to be an "oh woe is me". I just dont know what to do or say anymore.

Just so you know what conditions I'm talking about, they are (in no particular order):
- Refractory Familial RLS
- Hashimoto's Disease (Hypothyroidism) (NOT Inherited, first ever in family)
- Raynaud's Syndrome (Inherited)
- Fibromyalgia (Inherited)
- General Immune Deficiency (Inherited)
- Chronic Fatigue Syndrome (Inherited)
- Hypotension (thanks to all the parkinson's meds i've had thrown at me)

Put all of those together and you've got one heck of a handful of crap to deal with day in, day out.

I know I put on a happy outter shell, but it's time for a reality check.

I'm not happy.
I'm not well.
I hate who I am.
I hate how I look.
I hate being so tired and worn out all the time from doing simple tasks such as a load of washing or cooking dinner.

Sex ... what's that?
I don't have a sodding clue when that last occurred ... its months ago now.
I don't want it.
I hate it.

Yes, it's affecting "family" life. I use the term "family" ever so lightly as I'm being told more and more often that I'm just a bear with a sore head who does nothing but yell and scream at everyone all day every day. I've even been told that the girls ask if i'm asleep or in a bad mood when they get picked up from school ... that's SUCH an ego boost ... NOT!!! N.B. In my own defense: No, I DONT yell and scream all day every day. It's only when I happen to be yellin or screamin that it's suddenly "oh here she goes again!".

Troy has been offered a job at one of the smelters via one of our close friends. Only thing is, it means 12 hour shifts. He's terrified that I'm gonna rip into the kids or just lose the plot and end up in hospital from a breakdown of some sort.

He keeps bringing up the fact that he bent over backwards, and then some, last year when I was confined to bed for so long; so what. That was then, this is now. I've got my first client and i'm working as much as I can without wearing myself out.

I've given up telling him if i'm not feeling well, or am in pain, or am ready to cut my bloody legs off ... all he does is roll his eyes and think to himself "why me?". So, I haven't told him that i've had a headache for over a week; my brain/legs have been playing up on a daily basis from the minute I wake to the minute I finally doze off; that I ache from hair to toenails; that my feet have been burning so badly for weeks that even putting them in a bath of cold water does nothing.

To him ... I'm just complaining ... and what is he supposed to do?

Well ... I suggested he could get in here and talk to you guys; or look up each of my conditions and learn more about them and why they're so hard to manage all at once; or ring my doctors. Ahhhhh ..... no. He'd rather keep having digs at me about apparently doing nothing else but yell at him and the kids (which I DO NOT DO!!!!).

Yes, I'll yell at the kids when they've done something wrong. What parent doesn't??? But it sure ain't 24/7!!!!!!!

Today, I woke at 7:45am (I have NO idea what time I eventually dozed off this morning). After attending school parade (the school band that Karrissa is in did their first performance), I came home and started work; around 10am. My "office" is one corner of our bedroom. At around 11am I was suddenly hit with a sleep attack, so, saved my work, and moved from in front of the computer to the bed. I slept fitfully for 3 hours. When I awoke at around 2pm, I had some lunch then resumed working (i'm wading through bank statements dating back 2 years). When I emerged for some fresh air at around 4:30pm, Troy ripped into me about sleeping all day. GRRRRR!!!!! So, I ripped into him for sitting on the couch ALL DAY watching tv. He reckons he doesn't want the job at the smelter because I'm nothing but useless and do nothing around the house. Yes, sex, or lack thereof was mentioned. Why the hell do I want to have sex with someone who keeps trampling over my efforts at not only staying upright and mobile, but being the best stepmom I can, and the best "housewife" I can.

To make me feel just that little bit "better" he's even said to my face that he wouldn't want to have a child with me anyway because, despite the fact that I cant be a "good mother" to HIS kids, it's more than likely that anything I "spit out" is gonna be a sick piece of crap just like me and he doesn't want any part of being a sick kid's parent! THAT was a low blow ... and has had me simmering for quite a while now.

I'm 32 for gawd's sake. I've had enough of the crap that's being thrown at me. Can't I get a break? Cant I get the person I love most dearly to see and understand how much i'm hurting and need his support, even if it's just a sodding hug once in a while?

Nope .... I'm just a monster who know's nothing better than to yell and scream at people ... apparently.

Well ... hope that made sense to someone. I'd better get back to earnin my keep.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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sardsy75
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Re: Chronic Illnesses Ruining My Relationships

Postby sardsy75 » Tue May 06, 2008 12:05 pm

sardsy75 wrote:Sex ... what's that?
I don't have a sodding clue when that last occurred ... its months ago now.
I don't want it.
I hate it.


Just thought I'd jump in here before y'all say the most obvious thing ... "Ya got three kids in the house, what do ya expect???".

Well ... those three girls, under federal court orders HAVE to go to their mother every third weekend, and for half of each of the school holidays.

So ... we should be at it like rabbits. Come to think of it ... we used to be ... right up until I was bedridden this time last year, and it's just waxed and waned from there. The busted thumb didn't help the situation either.

The other thing that gets to me is that he insists on staying up well into the wee hours of the morning EVERY NIGHT (we're talkin anywhere between 2am & 4am), when I on the other hand, have to make sure I'm in bed, WELL before midnight or I don't have a chance in hades of gettin a good night's rest.

It annoys me; and yes I've told him. It's even gotten to the point where I just dont go to sleep at all simply because he's not beside me. Yes I've told him that as well, but got told "Can't help ya there, i'm used to stayin up late!" AAARRRGGGG!!!!

Now, my bed buddy is our new kitten, Raven. But even that's a problem sometimes, especially if she's spent most of the day sleeping and when I want to settle down for the night she goes into Raven Lunatic Skitso Kitty Mode and bounces around the bed and bedroom.

I'm about ready to throw the towel in here.

Over two years of hard work, sickness, family deaths, family feuds, and I'M the one ready to throw myself out!

I love Troy to bits. I love the girls to bits. I hate how everything keeps getting on top of me and turning me into someone unrecognisable. I want the old Nads back ... and so do they.

The happy go lucky, slight crazy, impulsive gal who lived life like there is no tomorrow.

I miss her!!! I want her back!!!
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Postby Polar Bear » Tue May 06, 2008 1:39 pm

Nadia, I am in work at the moment, but just want to say.... well... really... that I just don't know what to say to help, but just want to say I appreciate that you are in a crap spot at the moment, and I am thinking of you.
Betty
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Postby ViewsAskew » Tue May 06, 2008 5:25 pm

Hey, girlfriend. Until you can get this turned around, you'll just be forced to accept our hugs instead. Deal?

Nadia, I've been there and it's a horrible place to be. I know how much it hurts. I also truly believe that it's almost impossible to solve these things ourselves at some point. Too many things get said and it's so hard to get past them.

What are your thoughts about seeing a neutral third party to help you both work through some of this?
Ann - Take what you need, leave the rest

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Postby becat » Tue May 06, 2008 7:37 pm

Oh Man, I am wanting to warm up the turbo broom and jet myself to My Aussie Mate.

My first reaction is that you need to find a safe place to be until you get better. But you and I know, Nadia, that parts of this are because of the fact that your body fights you. You have few defenses left as this point.

And I can say without guilt, I have been there and I have fought that fight. There were times I really thought of myself the way others saw me, true or not.

I'm not the best fighter. I cry first, and it can take up to 10 minutes before I'm done. But honey when I'm done crying, fighting is the only thing that come next. But Nadia, fight the right fight for you.

You fight like your staying or you fight like your leaving. If your staying you'll find that common ground and stand firm inside that circle. Like Ann said, maybe a third party with no ties to you both could be helpful, just expect that at some ppoint they will want to talk to you alone. You'll have to face up to what life has dealt you. It's not easy, but so damned worth it my love. And whne you fight like your staying you don't say things just to make yourself feel better at the time, because hurtful things stick in the brain. The next time on of you is having a bad day, you'll remember what was said and just wonder if the other meant it for real.

I can here the stress, the anger, feel the pain, but only you know, if you love Troy enough to work this through.

I know how hard kiddos can be, and when one of the older goes off, then everyone does. Yours by birth or not. My stepson is really not my STEP SON, why?, because I damn well raised him. He's not mine by default.
And yes, I was that mother,like you, did she sleep, is she in pain today, should we just play elsewhere? I hated that part of me for so long. I don't often use the word hate, makes one's heart small and green.......but I wanted my lovely boys, troubles and all, to have a good me. So I had to find that within me, and yes it took time. But when your child crosses a line that you have set, don't punish on 10 all the time, set limits and enforce them, at the right level for the (sorry lack of words here) crime.
Reenforce that you love them, but you expect a certain level of decorium from them.
ANd be gentle with yourself, as Mark would say. Could have , would have, shoulda, can't make up for the right now.

As a parnter and mother, you fake stuff on purpose to allow your children and partner breaks from our own sufferings. It's just! That is why a thrid party might help and draw that line sharp, what you say there, can only come out in nice workable tones at home. And away from the children.

I am not sure that anything I have written is wroth the read or of any help.
But you will not be alone, I know that when I do not get to see the moon at night, it's because it's with you and my son. Soak it up my love. Set your mind on good and quality things. Set it on whether you need to stay and fight for what it right, or not.

We'll be here with you every step of the way.

Theres sunshine out there for each of us. Our minds and hearts, our actions define us, not the body we live and struggle in.

Lastly, sorry girls and gentlemen, I'm southern and one of the first things I got told my the elders in my family (the woman) is that sex is not jsut for love in a marriage, it is how men get relief of stress, like us talking. Nope you don't have to really do much, but be there in spirit and in love.
I might get some crap for saying that, but I beleive it's true. Even if for you, a pain pill is needed, just do it, but do it for the right reasons and for love.
And use it wisely, it's not a weapon. I understand where your standing on this one, and felt the same at one time, but if your staying, kepp that path open.

I love you
HUGS FROM EVERY PART OF MY HEART.
Lynne

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Postby ViewsAskew » Tue May 06, 2008 10:09 pm

Regarding sex (and, please let me provide a warning in advance - this will likely be explicit, including sexual language. Knowing that teenagers do read the forum, I will be as discreet as I can).

As Lynne said, sex is many things. And each of us sees it in different ways. As couples, married or in a long term relationship, sex is a way to bond with each other, to show our affection, to feel close and loved. It's also just plain fun (except when we're not feeling well or there are other problems). When we can't participate the way we used to, one of us may have a huge feeling of loss - including a loss of love. We may know that not having sex isn't about us not loving the other person, but he or she may have a hard time making that leap.

Now for me.... If I'm sick? I'd rather poke needles in my eyes than have sex. Same if I'm tired. Same if I'm anxious. It doesn't matter....all drive goes OUT the door whenever anything takes claim on my emotions. Hubby on the other hand LIKES sex when he's sick...it makes him feel better. Huh. If he's anxious? Yep, sex. If he's tired? Yep, sex. In fact, the only time he won't choose sex is when he's asleep or has a work deadline.

During a week when I'm in tip top shape, I'd maybe like sex 3 times a week. Him? Every day, twice a day.

So, we're set up from the start to have problems.

Here's what we've done. It may or may not work for anyone else.

I acknowledge that I am not made the way he is, but that there is nothing wrong with how he's made. We both agree not to make the other one feel bad in any way about our desires (or lack of them).

When things are not going well for me, he agrees to not "bother" me about it. For me, that means not asking, not bringing it up, no hurt sighs, not saying, "If you love me you would..." (not that he's ever said that, but just that he shouldn't say anything that I would interpret as I am a bad wife for not doing this).

The next thing we agree to do is to find a time each day to do something to take the place of sex. Usually for us this mean snuggling. It is sometimes when we wake up and sometimes when we go to sleep. If I am not sleeping well, I snuggle with him at his bedtime and when he goes to sleep, I get back up. If he's staying up later, he agrees to snuggle with me until I fall asleep.

Those help, but he's still faced with wanting sex daily and I might have weeks (or months) where I don't. So, what is he supposed to do? Not have any? Or am I supposed to do it even though I don't want to?

We've opted for me taking the lead and bringing him to orgasm, but leaving me out of the picture except to provide his relief. It works on many levels - I am not guilty, I am not involved (in the sense of my body being invaded), he feels close to me (better than him doing it in the shower), and we can maintain a sense of being a couple, sharing an intimate time together, of loving and being loved. If at some point during this I happen to feel a stirring of lust, in addition to the poignant love I always feel, I can hop right in. That doesn't happen often, but it does happen.
Ann - Take what you need, leave the rest



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Postby ctravel12 » Wed May 07, 2008 12:26 am

Oh Nadia I am so sorry to hear what you are going through. I wish I knew what to say but if I was there would just hold you and tell you that I am here whenever you want to talk, vent or even cry.

Would hugs help (((((((((((((((((((((((hugs)))))))))))))))))))) if so, I just sent you some.

Take care my friend.
Charlene
Taking one day at a time

cornelia

Postby cornelia » Wed May 07, 2008 9:06 am

I'm so sorry Nadia, it's next to impossible with refractory RLS and all your other conditions to look after 3 children and do household chores. You have a university degree, so I suppose you can earn good money. Wouldn't it be better (less demanding) for you to work more and then spend part of your earnings on a housekeeper?

Ann, you are always so resourceful, always trying to find solutions, I like that.

Corrie

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Postby cmoore1958 » Wed May 07, 2008 4:31 pm

Oh my sweet Nadia, my heart and hugs are going out to you right now. I wish I could just wrap you in warmth and love and make it better, you know I would do that for you girlfriend. I'm here if you need me.

Regarding sex . . . WARNING this may be somewhat explicit . . . I have other conditions in addition to my rls that make me deal with a lot of pain and suffering. My husband is the best and most supportive of me in that way and I know I am lucky. I think some of that support comes from me doing what I can to fulfill his needs as well as take from him to fulfill mine.

Sometimes when he reaches out to me and I see that look in his eyes my heart does a flip flop and my mind gets confused. I do want to love him as he deserves, but I just can't muster up the energy to do so all the time. I start these moments immediately be telling him that I'm not feeling very sexy right at the moment and am not into sex either. But . . . I tell him I am here for him and know he has his needs and desires based on his love for me. So, I tell him I will be his for the taking, but know up front that I may not be as responsive as he'd like -- not because I don't love him but because I physically can't do it at the moment.

I've found that honesty is best in these situations with my hubby. He appreciates that I offer my body to him for taking care of his needs. As the "event" is over I sometimes find that is was pleasureable and other times I cry silently over the physical pain. But the closeness we have as a couple because of my willingness to be there for him in this way is worth whatever I go through for the "moment". Our love is stronger and more understood.

I know that the way I handle things does not work for everyone and I honestly do not know how your hubby would react to the honesty offering approach. But it would be worth it if you could allow yourself to get lost in your love for him and let it happen.

As far as the housework, agaiin, I have the most absolutely loving and helpful hubby in the world. I thought about renting him out. :lol: He does all the laundry on his day off and does all the floors (vacuuming and mopping). When he sees me doing something and knows I don't feel well he steps in and takes over. I love him to pieces and thank God daily for him. I honestly do not know what I would do without a hubby that supports me and my health issues.

I think the key to that is his understanding of what I have and constatly asking for updates when I go to the doctor. I just got a new diagnosis yesterday and he was immediately with me on line to research it. Maybe if your hubby was more active in your appointments and what the doctor and others tell you he would understand more. My hubby is going to my next neuro appointment with me so he can ask some questions he has.

My heart aches for you during this time. I hope and pray you will be able to work through your family issues and intimate difficulties with a lot of success. Keep us posted on how you are doing.

Love you girlfriend,
Cyndi
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Postby ctravel12 » Wed May 07, 2008 6:10 pm

Hi Cyn
Just read your post and all that I can say is that I feel so forutunate that I know you and so glad that you are the friend to me that I need. That was a beautiful post and know that it came right from the heart.

Love you gf and do not ever change, which I know you will not. Like you have said so many times God led you to this site for a reason and I feel the same way. I have met some wonderful people and the bond that we have cannot be broken and I am so blest for that.
Charlene

Taking one day at a time

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sardsy75
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Postby sardsy75 » Thu May 08, 2008 9:56 am

My wonderful, dearest girlfriends,

You have no idea just how much your messages of support, suggestions, and love (and huggles) have meant to me.

I want to write a reply to each of you who has posted, as you've all contributed so much, so this may take a while.

Cyndi, Ann, I have tried and tried to tell him in so many different ways that if he wants it, he can have it, twice a day if he wants; but it's to no avail and that's what upsets me the most. He just flat out refuses and says "why should I when you don't want to, and it just wrecks you anyway?" :cry: :oops:

I had to see my Gatekeeper today; for a refill on ALL my drugs. He was surprisingly accommodating, after we nearly came to blows last time! Anyway, when I woke this morning, all the glands in my neck and under my arms felt like they were doing battle with each other so I was glad I already had the appointment. He gave me the once over and at the moment has concluded that its a mild recurrance of glandular fever but if I get any worse I'm to go straight back to him. So, yup, as usual, I feel like utter crap. What made it worse was that Troy and I had planned to go out and set all the crab pots again today, but I quickly ruled that out when I could barely speak, let alone swallow. Will see how I am in the morning when he goes to check them.

That's it for me for now ... going to take myself to bed with a cup of hot chocolate and a book. The night temps are really starting to drop, and I HATE the cold!

Will post my proper response as soon as I get my head around things. Until then, love and hugs to you all.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Postby ViewsAskew » Thu May 08, 2008 5:58 pm

Nadia, not that you want another something...but autoimmune problems, are just so difficult to get at sometimes. I can't help but wonder if much of this isn't being caused by something else. It just reminds me of what my hubby went through with the undiagnosed celiac. He had alopecia, thyroid, fibro, Lupus and other diagnoses. In the end, it was something completely different. His body still does some odd things now and then, but mostly he's OK.

I'm not saying you have celiac...but there are hundreds of autoimmunes and when one is out of whack, they tend to bring on others (if I understand that correctly). Some just tend to go together. A good friend of mine has Addison's and celiac...one made the other worse. She has to remain completely gluten free or it will set off a reaction from the gluten, which will set off the Addisons.

You've probably had the same thought many times. It's finding it that is the hard part. And, maybe it's not that, it's just how things are. Whatever it is, I hope that you both are able to find a way to move forward.
Ann - Take what you need, leave the rest



Managing Your RLS



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sardsy75
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Postby sardsy75 » Wed Nov 12, 2008 10:48 am

Well, the "Out of Service" sign on the bedhead has lost a couple of cobwebs.

Only problem is ... I can barely walk from the pain in my hips.

This is SO unfair!
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Postby Neco » Wed Nov 12, 2008 4:42 pm

Tell him to be more gentle? umm...lol..

I know, that sucks.. I think I'm going for the world record on celibacy. 12 years and counting :?

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Postby ViewsAskew » Wed Nov 12, 2008 8:16 pm

It really is unfair.
Ann - Take what you need, leave the rest



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