Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-23-2013, 11:48 AM #1
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Frown Depressed, tired of not being able to do what I want

Well, Yule totally sucked. We celebrate on the 21st as we're Pagan. I had a plan to cook a bunch of Tapas. My DH didn't clean all week, is a huge procrastinator, so I had to clean the kitchen and do all the cooking on Friday night. Saturday comes and I was not moving as quickly as I wished, probably doing well considering, but I was not getting any help at all.

I totally freaked out on both DH and DD for not helping. They were both on their computers or the PS3. It took DH and hour to get off the computer so we could go get cat food and the rest of what I needed at the store. I yelled bad. I had to take a Xanax so I wouldn't freak out so bad that the neighbors would think I'm murdering them.

My brother and his wife were supposed to be coming over around 7. They got there a little late, but I knew their schedule was them running around that day. I grabbed my brother and told him to help. He did, but was so tired that he needed specific instructions for everything. We didn't eat anything until 10 and I only cooked half of what I wanted (the croquettes were supurb).

Did I get a single present. Nope. Sure, money is tight and we're getting my settlement soon, so we'll be able to go shopping then, but a single present would have been nice. It could have been a spoon or pair of socks, and the thought would've been there. Dh didn't even take DD (age 11) out to get me something. I did get my tattoo worked on a week ago, so I got myself something, but that doesn't count. The thought is to actually think about others, to share and be generous.

He can't help, he can't give, he's being a HUGE jerk. He gets SAD and with it being so cold lately he hasn't gotten any sunshine, but refuses to take vit D either. I get to deal with this every year between now and March. I'm so ******. Normally I just deal with it, understanding he can't help part of it because of the SAD, but I've always been able to make up for it. Not this year and I just can't deal with it. This morning I was trying to find something to wear to work. I asked him, "didn't you do some laundry yesterday", he said yes, but it wasn't hung up and folded, just in a pile. How am I supposed to know what is clean or dirty when it's all in a big pile, now wrinkled again.

I want my body back. I want to be able to stand and cook, or just go when I want. Be able to get things done. Be able to watch DH's back so when he does things half way I can help him finish. Be able to enjoy a day off without it feeling like all I do is work or sleep.

There is no way I can EVER host a holiday dinner again without other people helping me, really helping, not just a little here and there.
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Old 12-23-2013, 12:32 PM #2
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Chaos, I'm so sorry you've had a rotten time of it after working so hard.

He does indeed sounds like he's been a giant pain in the behind rather than your help and support at such a special time. It's not fair and it sounds as if you put a lot of effort in for everyone and got very little out. It's so sad when even your family don't understand what you're going through.

Did you tell them how hurt you were that they didn't bother with gifts etc for you, or just some help? It's hard when you have a younger child because they need a little help and encouragement with gift buying, but you shouldn't have to do that yourself as well...

I so understand you wanting your old body and self back, and just to be able to do the things you used to. I feel the same. I'm lucky to have a supportive husband, who although he does a giant fail every now and then is pretty darn good day to day, but we went through a bad time early on and I still get big blues when I don't want to have to ask for things I should be able to do myself...I bet we all do.

I hope you can maybe sit your family down and explain that you just can't carry on like this, that you can't do what you want to anymore, and that you need their help around the house regularly. A list of chores up on a wall/door for them to choose from and tick off works ok for me, and means I'm not actually having to keep asking them (some smaller chores I mark specifically for my youngest who is 10, so the others don't just do those!!). I nudge if a day or two goes by without anything coming off it, but I think they feel a little less nagged A lot of the problem for us was that so much of what I did they just didn't realise I did, and didn't see themselves. I refresh the list every week and add in anything left over. It works ok, it's not a solution (we wish) but I feel less helpless and naggy, and I think they maybe realise how much I used to do (and still do!). You could even give them small treats for doing the jobs, my kids like that.

Anyway, I'm glad you got to have a bit more of your tattoo done - what is it you're having, it must be big?!

Take care of yourself, and I hope things improve for you soon. I'll be hoping the New Year brings you a fresh start in your home

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

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Old 12-23-2013, 12:45 PM #3
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In the past couple weeks he's just gotten extra jerky. His responses to me have been "have DD do it" or "stop nagging". I have written stuff down before and it ranges from never doing it, doing a little or taking the note down and throwing it away. I complained about our bedroom to him and he started complaining about DD. Um, she has nothing to do with what I asked. I haven't been able to get him to focus on ME. Sometimes he is super helpful, just not this week.

I even gave him a list of stuff he could get for me at Target. He got frustrated with being in there and left. Mentioned something about a video game and I told him that NO, don't get me that. I rarely play video games. He's just thinking about him, always.

He's getting accupunture tonight and it better help or I'll throw a knife at him.

I'm getting this: http://www.thepinupfiles.com/elvgren/ELVGREN_img_04.jpg
But zombie, she'll be greenish and has stiches across her body. It's on my thigh and takes up a good part of it. I've had about 4 hours of work done on it so far. I need her body colored in still, I got the clothing, shoes and lips colored in last weekend. I'm kind of like "whatever, it's going to hurt anyway, just do it" camp. It didn't make my CRPS spread.
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Old 12-23-2013, 01:24 PM #4
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Hi chaos

Well it sounds like you've done everything you can and he's just digging his heels in and being, as you say, a complete jerk. Not your fault, and if he is in a bad moody selfish patch then hopefully he might come out the other end and realise what a plonker he's been. I hope for you and your family's sake that that happens fast...

My older daughter (late teens) is sooo impressed by your tattoo! She is desperate for one lol. I'm glad it hasn't caused any spread.

Take care and have some chill time if you can, you deserve a treat or ten

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 12-23-2013, 03:41 PM #5
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I'm sorry chaos...that doesn't sound like it was enjoyable at all. I hope things start to change for you soon. My boyfriend can be insensitive at times...but what you are dealing with is just unacceptable. Sounds like you have done everything you can to ask for help, explain your needs and frustrations, etc...wish I had something more to offer than just sympathetic ears to listen. Sending good thoughts your way and hoping things get better quickly.
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Old 12-23-2013, 05:32 PM #6
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I'm sorry you had such a bad experience Chaos. I wish I could have been there to help you and I would have brought you a present. You deserve it after all you did and all you been through. I wish I could get you all presents for being my friends and being so brave dealing with rsd as well as the holidays. People can be insensitive even family members. I've been there myself. But you have a kind and caring family on this forum. I hope your New Year is better and that you feel better soon. Take care and remember that I care and am always here if you need a friend.
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