Good News and Bad News

carakitty · 01-29-2012, 07:58 PM

The good news is that Mr Kitty has a diagnosis now for these chronic health problems which have been getting more and more persistent over the past few years.

The bad news is, that diagnosis is Lupus.

I see how things have progressed with his mother and his sister, who both have it, over these almost 15 years that I've been with him and I do not want the same fate for me or my daughter. I feel almost doomed to living a life of an almost but not quite single parent and part of me says to RUN LIKE HELL while the man is still mobile and not completely disabled and dependent on me for help with medical care.

The other part of me asks "what sort of heartless bitch just up and leaves a chronically ill spouse like that?" and also wonders if possibly getting back into couples therapy will help things at all.

One of my old journals was recently unearthed from a box in Mr Kitty's office. It was 10 years old. It seems like so much has stayed at an unhappy, stagnant state since then.

I don't know if anyone has advice or wisdom, but thanks for hearing me vent.

Saya · 01-29-2012, 10:26 PM

I'm so sorry, carakitty

. If I recall correctly, a former Gnet member has lupus, and while she's had a very painful time, she remains a really awesome person.

And I think its natural to think that way. Whenever there's something big and redefining in a relationship, good or bad, its suddenly not the relationship you signed up for. Give yourself time to reflect on it and no matter what the outcome, I'm sure couples therapy would be useful.

Acharis · 01-30-2012, 03:47 AM

I'm so sorry carakitty.

I'm not sure if these are feasible or you've thought of them already... but if you decide to stay and you have the money/support, outside help could be really valuable.

ie. Childcare/relatives/the Kitten going on camp or having sleepovers with friends, a cleaner coming once in a while, ordering groceries online and having them delivered... it might help save some of YOUR spoons if you're doing everything.

And Mr Kitty could go on a lupus forum if he feels like venting and screaming?

But think about what you want to do, whatever you decide you'll be doing your best. I'm sorry I can't be of more help

Solumina · 01-30-2012, 01:48 PM

Being a caregiver for someone with a condition like that is extremely emotionally taxing when the relationship is otherwise going well, if it isn't, which you have indicated, then you are going to have to take a really hard look and decided if it is even something that you can do, after all it would be better for you to get out now while he can still take care of things on his own, such as finding a professional caregiver and whatnot, instead of cracking under the stress when he is totally reliant on you.

I strongly suggest that you go to a counselor, couples therapy would be great but I think it would be good for you to have at least one session with the counselor on your own.

I wish you the best of luck, whatever you do the path ahead of you isn't an easy one.

carakitty · 02-13-2012, 05:20 PM

Thanks for the support, guys. Still don't have stuff figured out but we're working on it.

Fruitbat · 02-20-2012, 04:06 AM

CK - hugs hun.

My father had Lupus, one of 3 men in Australia who had it at the time. It affects men differently to woman. He was on predesterone (spel?). He had mood swings, and it was sometimes difficult to be with him, but he was okay once they got his drugs right. But he was still a short tempered bastard who played his kids off each other and was a right twat (not sure if it was him, PTSD or the Lupus)

My father didn't have any of the hand twisting or body deterioration.

My advice is to sit down, do some internet research and then sit down the specialist and get your questions answered.

You are the only one who can answer the question of whether you stay or go. My thoughts are what's the point in hanging around for some noble cause if you are both going to be miserable.

If I were in your shoes, I'd sit down with Mr Kitty and the specialist and have a talk about everything that the future will hold for you - the good, the bad and the ugly.

Then ask yourself if you want to deal with it.Oh and being a carer is a fucking shitload of hard fucking work. Your life changes, depending on the condition. It's rewarding and really really hard - god that sounds just like being a parent.

carakitty · 03-09-2012, 07:57 PM

I started journaling again. In a paper one. It takes me fore-v-e-r to write things out by hand but it seems more effective than typing it out. Besides I can scoop the paper journal up + shove it into my huge-ass purse for going out + about if I want to.

Mr. Kitty + I really haven't talked much about stuff. I've talked with a Priest at my church and my sister a little. The journaling has helped some too, but I feel like no real progress has been made, still.

Fruitbat · 03-11-2012, 05:06 AM

Quote:

Originally Posted by carakitty

I started journaling again. In a paper one. It takes me fore-v-e-r to write things out by hand but it seems more effective than typing it out. Besides I can scoop the paper journal up + shove it into my huge-ass purse for going out + about if I want to.

Mr. Kitty + I really haven't talked much about stuff. I've talked with a Priest at my church and my sister a little. The journaling has helped some too, but I feel like no real progress has been made, still.

Super big hugs. It takes time to make your decision, and to be honest, I'm not sure if it really is just one decision to make. It's more like a creeping thing that happens, you slowly come upon the realisation that it's either going to work or not.

Try writing with a soft pencil - like a 2b or 4b. I love writing with pencils, my words flow easier.

be kind to yourself CK, it's a big decision and whatever decision you make, it will be the right one.