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giggle
07-25-2011, 04:39 AM
I don't know, at the moment I am feeling really strange.

It has been so long since things have started going down hill and there is still a month before i see the neurologist. I wish my GP had sent me a long time ago.
Its been so long, I am starting to become complacent. Im starting to just accept the way I am. I just want to give up trying to find out why. I hate that I do this, its why I am in this position in the first place. But it doesn't help, that I am all alone in this. My partner, although superficially supportive, doesn't want to know about it. He has no idea what is going on with me and he refuses to even try to listen. I guess I cant blame him, just makes me feel like no one cares. I gotta wonder how he can claim to love me, cause if he were sick, I would want to know everything I could. Hell, when he gets a cold I try everything to make him comfortable.

Everyone around me seems so resentful of my illness and unappreciative of how bad it is... that Im starting to question whether Im justified in worrying about my condition.

I am so tired of trying to struggle through everything that should be easy. It shouldnt be hard for a 30 year old to pick up a juice bottle. Everything takes so much will power but its that will power that is causing people to just think I am fine. Just writing this post has exhausted me.

I dont even know where to go from here.

steve.b
07-25-2011, 05:13 AM
it sounds like fatigue has started to bring its friend depression.

this is about where you were when you first found our little family.

time to give you a "kick up the ####"

you need to be the real you, for both you and your daughter.

lovedbyHim
07-25-2011, 05:26 AM
it sounds like fatigue has started to bring its friend depression.

this is about where you were when you first found our little family.

time to give you a "kick up the ####"

you need to be the real you, for both you and your daughter.


I do see depression here Hun. Are you on anything to fight it? You sound numb and then start to believe noone cares. Please will you see about something to lift you a bit, before it gets too far down. Here is a hand to pull you up. Steve put that foot down (grin)!

sharpiessave
07-25-2011, 08:39 AM
Man, I know exactly, yes, EXACTLY how you're feeling right now. It isn't often we get to say that to other people. But this site is a place where empathy replaces sympathy, and we're all in the same rocking boat.

I was looking through my med journal just now, searching for the day I felt like you. It was Marchc 7, and I quote (explatives deleted) "I'm f-ing pissed off at this whole thing now. I'm sick of feeling like sh--. I can't do anything, ANYTHING anymore! F---! I QUIT!"

The next week and a half were repeats of "Pain, massive pain, I don't care. . ."

I don't think anything anybody would have said could have made me feel better. I was in All-Me, All the Time mode, and it couldn't be broken. Nothing distracted me from it.

So I say wallow. You need your time to wallow; it's very important. What's happening to you right now sucks monkeys, and you don't deserve it, and this certainly isn't the way life is supposed to be lived. We got one hell of a raw deal.

You'll know when you're done wallowing. Your body will tell you. Maybe you'll giggle at a dumb commercial, maybe you'll just finally want to get the earth out of your house for the first time in days. It will come, but until then, wallow away dude. And give some serious thought to the anti-depressants. They've worked for me too.

giggle
07-25-2011, 02:45 PM
I see a psych regularly. She doesn't prescribe meds and my GPs idea was to send me to her, she wouldn't prescribe meds either. But aside from that... if I am looking down the barrel of a parkinsons diagnosis, I cant take antidepresents anyway.

I'm sure I wouldn't feel this way if I wasn't so isolated. Coming onto this forum is fantastic... but it doesn't substitute real life human compassion. I don't want sympathy at all, I want to feel like someone close to me actually gives two hoots about how hard and how scary this is. I talked to my partner about it the other night and told him he needs to pay more attention and actually take in what is wrong with me. He said he didn't want to because its serious and it scares him.
The reason I asked him to pay more attention, is because I took him to my Rheumy appointment and he embarrassed the hell out of me by being a complete idiot. He quickly skimmed over my list of symptoms (which I put explanations with on the list too) just before going in to the appointment. I dont know if he was trying to impress me or what, or try to make himself feel better about the fact I have been dealing with this illness completely alone (yes, every appointment up until that point, I had attended alone. And he never even wanted a recap of events after them). But he started reciting bits and pieces which werent even important from my list and most of it he got wrong anyway. The Rheumy started getting annoyed with him and told him she wanted to talk to me. But that wasn't the worst part, perhaps five minutes in to the appointment with my NEW rheumy, he started asking her about me getting onto disability. Of course she said no, she doesn't even know me!! And now I look like some nutter that just wants disability.

So even after that, he has no intention of learning what its like to be me at the moment. He has zero empathy or compassion. And I have no family or friends here. The best I have, is my once a month appointment with my psych to cry my eyes out. It still doesn't make the only person I have social interaction with care about the way I feel. I mean depression or not... he simply does not care. Its not just a feeling I have, its the down and dirty truth, he doesn't want to know about it... words straight from his mouth.

giggle
07-25-2011, 03:10 PM
You are right as well steve, fatigue is getting the better of me. I barely feel awake most of the time but fatigue is coming on really quick now and hanging around pretty much 100% of the time. Not just your regular fatigue but utter exhaustion.

Its so cold as well, our house doesn't have heating because its pointless, the house doesnt close up fully because its open to the garage which has a huge gap over the roller door. Its as cold inside as outside minus wind factor.
But the difference between now and then, is that I didn't want to bother living back then. And now I just dont want to bother getting a diagnosis and just keep on trying to get by as I am and pretend nothing is wrong, just like my partner is doing.
Regardless of what he said, I am feeling rather certain in my heart that if I get a bad diagnosis, that will be the end for our relationship. If he doesnt want to hear the realities of my struggles now, imagine if I was diagnosed with something like parkinsons?

Thank you sharpie... there are a lot of complex ways to deal with how I am feeling, but I guess just letting yourself feel the way you feel and accepting it is probably the best way to go about it. Thing is, no one would let me get away with that. I need to go to work, pick the little one up from school. I get a puppy next month... that should be some good therapy : ) She is identical to my first dog, who was my best mate all through my teens and early 20's. I adored that dog, I had her cremated and will keep her ashes for ever. If this little one is anything like her, I will be one happy chappy : )

I dont really feel sorry for myself, I feel angry. I feel angry that all my life I have not felt like anyone close is that concerned for me... perhaps its my independent streak that makes them think I can do it all alone. Any time I have shown weakness, its been thrown back in my face.
But I am so jealous of those families you see on TV or in movies, where one of the loved ones gets sick and they all show their support and gather around to make this person feel loved. Or a partner that goes to pieces over their lovers illness and they will stop at nothing to find out whats wrong. My partner doesnt even know my symptoms. The only thing he picks up on is my walking into obstacles because he can laugh at it. Or my suddenly falling over to my right for now reason, just because someone moved towards me. It is pretty funny, but still, there are some pretty scary things going on. A once smart and very strong girl... now I can barely lift a bottle of juice and just thinking takes all of my energy. I could do laps of the block all day long and not be as tired as I am after making one post : / Stupid brain.

Sorry to be such a whinger : (

Manderson
07-25-2011, 03:22 PM
Aw Giggle <hugs> I'm glad you're getting the pup ♥

Sometimes I feel complacent too. I have 2 more weeks from tomorrow for my appt. and now I'm starting to just give in to whatever it is I have. I get used to feeling this way and from what I read about what others are going through, I don't have it so bad so maybe I should just STFU about it. <sigh> My H keeps telling me not to get involved with forums like this because it makes me think too much and "you're not even sure you have lupus or RA." And maybe I don't, but I sure as h*ll have something.

As for your partner: bleh on him for being so blase about you.

giggle
07-26-2011, 12:23 AM
COMPLACENT! Thats the word. : ) Thank you.

Its a lot of hard work, when others dont even seem to care if you get the diagnosis or not and especially when the diagnosis is unlikely to make anything better lol
(BTW, when I say "others" or "people" dont seem to care, I dont mean my lovely fellow lupies... I mean in the real world, those around me. I know all you fabulous people care : )

I feel exactly the same way manderson... but then again you have to wonder... is it that others do really have it worse, or are they more in tune with their bodies and able to communicate changes better? I know I am not great with recognizing whats going on with me. I have adapted, as usual, pretty quickly. And because I have adapted I am giving it a fairly low rating. But a lot of others give their illness a very high rating. Its all very individual. Someone with your amount of pain may rate it a ten when you rate it a six... I wouldnt give up. My lupus was very mild, in my opinion, but what I have now, is not cool. I have adapted, but i have to keep reminding myself that its not normal to walk into walls, to fall over when someone walks towards me, to not be able to lift a juice bottle, to have trouble understanding human language... thats not normal and it needs to be assessed and treated. Its just so hard, when like you, I adapt to whats happening and life goes on. I am seriously the kind that would keep going until I dropped dead in my tracks and never have known I was on deaths door. And thats a scary thought.

My partner... he is generally a good guy, in theory. But he is very very selfish. I thought about it today... and I think thats why he refuses to have anything to do with my illness. And blase, thats the word that describes him perfectly : ) It doesnt have anything to do with him directly so it doesnt concern him. Having money concerns him though, hence why he came with me to the rheumy to mention the disability.

Forums like this are perfect. Generally, people around you may not understand... but the people on here do : ) There is always someone with information, or someone going through the same thing. Look at you! You get it... you understand the complacency and just the fact that you understand has helped me feel just that bit less alone : )
Just like Steve is always there to kick me in the butt and tammy is always there to make sure I am looking after myself : ) Terry is always there to pull information out of only God knows where, sharpie has her fresh way of dealing with things and tgal ... well she's been through it all and always has something to relate to and some advice to give : )
And Robs always there with an inspiring story, a witty comment or a funny to share. I could keep going, but there are too many to mention!!

What would I do without this forum? Your H doesnt understand, because he's not experiencing what you are. He doesnt know just how lonely it can be, to have an invisible illness. Whats worse is, what isnt invisible, just makes people think we are stupid. We are forgetful, we have trouble understanding whats being said to us sometimes, we seem lazy because we are late because our joints were so painful it was hard to get ready... its hard to get respect as a lupie. Ad walking into walls and falling over spontaneously and you really do become the source of jokes for your work mates LOL

Im glad you are here manderson, because today it was you that made me feel less alone : ) Welcome to the long list of people here that made me feel accepted.

Nonna
07-26-2011, 03:36 AM
Giggle, I'm here. I've been there also and lost when the relationship ended. My ex walked and left me with 2 kids. Sick and having to go back to work- my symptoms weren't as bad then. I just couldn't hold on to things always dropping them and grabbing the wrong thing of the shelf. Talk about wanting to give up. But there always seems to be a reason to go on.

So - wake up and smell the roses, bundle up and find a spot to look at nature. It always makes me feel better. I loved going down to the beach in the winter and watching the waves - made me feel better and helped me think things out. Can't say if this will work for you. But you never know,

I am here for you if it is parkinson's . If not I'm still here.

Manderson
07-26-2011, 05:13 AM
Aw thanks sweetie!

You know "adapt" is another good word. I do that and I have just enough medical knowledge to make me dangerous to my own self. And I'm ever so helpful to others when it comes to researching and helping them. But for women in general I believe that's the way it is. Others before ourselves and that may be why we are the way we are and our partners as well. Maybe we've conditioned them to think "well, there she is still scrubbing the floors and doing all the marketing and the laundry......she can't be all THAT sick." In my case, I know that H is worried and while he doesn't express it verbally or go around tearing his hair out over it, he does look away from the sports on TV when I get up and can barely take those first couple of steps. Or he'll go out to the kitchen and refill my coffee cup. Also I think by advising me to stay away from Google, my medical books, and internet forums, he thinks he's protecting me somehow. I know he feels it's useless to worry until I know something definitive. But I live, therefore I worry. <sigh>

gkf109
07-26-2011, 06:36 AM
Hi giggle, I too know exactly how you feel, people just don't get it, my wife who I have been married to for 16 years doesn't get it either, I can't work anymore, the bills are piling up, and we are going through all are savings, my flairs come very often now, and they are more intense and last longer, all this I believe is caused by stress! Lupus loves stress, my, wife brings this stuff up all the time,than she gets mad because I don't talk to her about it, but she doesn't understand what it does to me, and I don't think she ever will, but that is how I deal with it, my best advice to you is to not let it get you down, try to stay positive,and look for something to do to keep your mind somewhere else.

giggle
07-27-2011, 05:21 AM
Thanks guys : ) Thanks Nonna.

Manderson... my partner is great when its in his best interests. I discussed it with him, he agrees, thinks its his biggest personality flaw... but he doesnt mean to be that way and he will try harder. I dont think he will lol but it feels good to know he wants to try to change anyway.

I had a pretty good day today, felt really well. That just makes me feel more complacent lol

gkf109... stress definitely makes things worse. Its frustrating... I want to work, but the stress of working makes me worse, the stress of not working makes me worse. LOL