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 06-04-2007, 07:29 PM #1
sue k sue k is offline
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Default Going crazy?

Hi Everyone,

Iam feeling really guilty right now. My grandkids are the most important people in my life. The only problem is that when I spend more than an hour or two, I can't take it. I seem to have very liitle patience at at all if any. Its not just them. I notice that I am like that with everything and everybody. I was not always like this. I can't even stand to go grocery shopping. I find myself getting angry if another shopper gets in my way or the wait in line is too long. I've noticed that it has gotten worse in the last two years. Is this part of RSD?

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Sue K.
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Old 06-04-2007, 08:09 PM #2
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I also feel your guilt. I have homeschooled my son since April 2006. We have always been able to just leave and go where when we want, and why we want. I cannot now. If I wake up flared, we don't leave the house, no matter what was planned.

Keep in mind that when you have your grandkids you do NOT have to jump around and keep up with them (not that I am saying you do). Kids have soooo much compassion it is quite amazing to see.

My suggestion: Look for craft books, craft ideas, etc that in the 2 hour time frame that you can give them, they leave with a memory of a fun thing with grandma. Please keep in mind it is the memories and not the things you buy them to compensate for not being able to keep up.

Also if they are old enough, since you have internet (obviously) there are instant messages that can be done. Some instant messages offer games that can be played between the two people.

If you offer their ages I can help you look for some fun (in home) things to do in a short amount of time.

Hugs. They will remember you for you, not for your disease.

Also, when it comes down to shopping, I try not to do it too often. I am the only one in the household with a license though. My mom came over and she drove us to Jonathan's sports last Thursday, then we went to Chuck E Cheese. She and I sat while he played, then I stood and did a couple of games with him. Then my mom offered to buy us dinner for a couple of nights, so we went to Target. At the end of this I was crying and Patrick had to help me into the house (almost carrying me). So basically: no driving, no major walking, standing for about 5 min @ CEC, and walking slowly leaning on a cart in the food section only at Target and I was 10 plus and crying my eyes out. We left at 1 and were home by 4. Hmm, I can't even give my family 3 hours of my time before I get so badly set off that it scares my own mother.

I feel your guilt.
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I AM NOT A DRUG SEEKER,
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Last edited by junk4myemail; 06-04-2007 at 08:18 PM. Reason: Wanted to add about going out and shopping.
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Old 06-04-2007, 08:33 PM #3
HopeLivesHere HopeLivesHere is offline
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Default Normal to me

Hi Sue,
I am in the same situation except my grandchilden are on the other coast.
I have a 4 year old grandson I've never held in my arms.

I was so irritable I couldn't stand to be around myself !!
My doctor told me this was part of depression, the only sign I ever showed as I never felt depressed. But I researched it and it is one of the signs.
Trazodone helped me, but i still am very irritable. Sometimes like a pot ready to boil over. I hope you can explain this to people honestly and that they wll understand why you are so irritated. Takes a lot of hard work to overcome this.
All the best to you,
Hope
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Old 06-04-2007, 10:44 PM #4
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Let's see....constant pain and lack of sleep not a good combination. We are human after all.
I used to be the queen of patience, I had a daycare for over 10 years. Patience was a number one qualification.
So now I try to make quiet time just for me, it's like charging my batteries. That way I can have more patience for the ones I care about.
Jeanne
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Old 06-05-2007, 04:36 PM #5
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Hi Sue,
I know what you are saying. I try to plan for my grandson. Rest up the day before & not plan anything for the day after since I know I will need to recover. I still do things while around him that I would not normally do. I try to be more "normal". I try to move too quickly. (Yesterday, I whacked my knee so hard against a table leg that he winced.) I don't know how old your grandchildren are but mine is 9 and I have to keep reminding him of my limitations. But, I do try to plan things that he enjoys. Children are more pleasant when they are doing something they like to do. As for the impatience, I think alot of mine comes from frustration. I'm frustrated that I can't do what I used to be able to do. I think this is all do to the RSD. I wasn't that way before I got it.
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Old 06-05-2007, 05:44 PM #6
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Thanks everyone,
Christine, thanks for the ideas. My gramdkids are 8,4,6, 3 and 2 mo. I got the RSD 3mo before the first one was born. They have always seen me like this. Although it has gotten worse than before. More so this year. My oldest my grandson seems to get frustrated with me real fast. But he loves the computer so I try to play gameswith him. I just recently got a computer so its getting better with him.

Thanks
Sue K.
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Old 06-05-2007, 06:01 PM #7
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[QUOTE=sue k;108999]Hi Everyone,

Iam feeling really guilty right now. My grandkids are the most important people in my life. The only problem is that when I spend more than an hour or two, I can't take it. I seem to have very liitle patience at at all if any. Its not just them. I notice that I am like that with everything and everybody. I was not always like this. I can't even stand to go grocery shopping. I find myself getting angry if another shopper gets in my way or the wait in line is too long. I've noticed that it has gotten worse in the last two years. Is this part of RSD?

[SIZE="2"][COLOR="Blue"] Hi Sue! First of[ all .. "Congratulation's" for having all those grand kids!! I'm jealous, I only have 3 LOL Anyway, when my oldest grand child comes over, I too feel guilty. It's usually when I am in bed and in so much pain. she kisses me on my cheek and her and my little girl(whom we have had legal custody of since she was 2 mos. old, she is now 7 yrs. old) kept wanting me to play with them. so, I felt guilty.. got up slowwwwwwwwwwwwly.. and put on "that nice face' and played when I didn't feel like it. I know the both of them sorta guessed I was not up to it, so my daughter says mama, go on back to bed, me and Hannah will do something else. this about broke my heart./COLOR I don't get out much either. My husband bought me a brand new car (paid in full) too and I don't even drive it!! I'm afraid my hand, wrist and upper arm will be in such pain, I'll go in a ditch. Anyway, there is play dough, twister(remember that game?) where I spin the dial and the two of them play! Also I have a ton of computer games they go on too. well, take care and remember, you are not alone in this. hugs Sue Love, Desi ]
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Old 06-06-2007, 03:04 AM #8
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Hi, all you lucky grannies! My son got married a year ago, but they aren't as "ready" for babies as I am

I wanted to post this before you all got too "down on yourselves". I had a "regular" grandma, and a "quiet grandma". "Regular" grandma is NOT the one I remember most, not at all. I actually can't dredge up a single powerful moment I spent with her... except a negative one when I broke a piece of her china.

But "Quiet" grandma, wellllll, she's a different story altogether! I remember her most for all the reading she did to me. She could cure all my ills with just one book... ok, sometimes two, lol. She's the one I remember talking to me, the one who listened when I spoke to her, really really listened. She wasn't all distracted like the rest of them... mainly because she was in her bed most of the time. But she'd call me in to her, and ask a simple question: "Book, game or talk?" I'd usually end up staying and do all three, lol.

"Quiet grandma" was also poor as dirt, the others weren't. But for all the fancy things they bought, I had no respect. It was the books and homemade gifts from poor quiet grandma that I remember most fondly. She gave/made them with such love!

I only have one keepsake from poor quiet grandma... her plain jane gold wedding band. I never wore it, let my mother keep it for many years. But once I met Michael, I asked for it back. I finally felt like I was in a relationship she would approve of, lol! I feel her love even more firmly when I slip that ring on. I also smell her cheap, awful, too-much-on Avon Roses cologne once in a while... it still makes me smile to this day.

So, DO NOT place yourselves at the bottom of the totem pole anymore! Turn that bed of yours into a nice safe haven of fun for those grandbabies to run to when they need you... and don't forget to call them into you once in a while too. They're too young to spend much time thinking about the people that aren't in the room with them... but they'll come to you gladly when you ask them to. Don't forget, they also might be afraid of hurting you... you need to explain to them what they can and cannot do. They'll feel safer and more secure about coming to you when they know they aren't going to cause you more damage.

I hope this helps a little bit... it made me cry to write it, but in a good way.


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Old 06-06-2007, 08:29 AM #9
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what a lovely story. i wrote on the sue k/joan m thread about how i 'gramma', and i do sometimes doubt myself as to if i am good enough but when my 18 year old grandson comes by, and brings his friends, i know that what i have to offer is good enough. he and the other boys, i have six grandsons, have never been embarassed with me, and even when i would medicate, and then drag myself, to their basketball games in high school, they would yell, 'hi gram' from where ever they were and that was the sign that it is not what you do, but just that you are there for them, even if you can't get off the couch that day.
they are the focus of my life in so many ways and you are right there are no distractions but the pain ...
thank you for sharing. you were loved. joan
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Old 06-06-2007, 12:51 PM #10
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What a wonderful story you shared with "Us grannies" Rogue. This too made me cry, yet.. when you mentioned the cheap smelling Avon roses cologne.. made me smle. wow! I think you had a wonderful "Quiet Grannie" that gave you so much love. This post made my day, Rogue. much love and hugs, Desi
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