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 06-19-2013, 02:02 AM #1
CRPSsongbird CRPSsongbird is offline
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Exclamation Just plain tired

Sometimes, just sometimes. I just wish it would end. I am normally a happy person. I can usually deal with whatever this crap throws at me, and still keep being me. I can still love life and live it, well around the CRPS anyways. But lately. It has been so hard. I been trying to oull myself out of this funk.

I just feel so...

Sick
Hurt
Angry
Depressed
Grieving
stressed
Sad
resentful
Manic
Nauseated
Hurt
Confused
Frustrated
Useless
Broken
doomed
Done
desperate
Hollow
Frail
Frayed
lost
helple
crazy
vengeful
exhausted

And so many other things that I can't even put into words. Sometimes, whens it takes everything I have to get through work, or even just the day, because I just feel like bursting into tears and crawling back into bed...

My arm CRPS is progressing. Its turning more red. It's still not super cold, but the last flare up I had was the worst yet. The pain was so intense I was vomiting. Granted the pain died down a bit, nut y daily pain level is still way higher than it had been. I had been having such a "breakthrough" for the last almost 3 months. Between my new medications, lifestyle changes, and altering how I was living, everything was going really well.

I had kept my head up and stress down when I was "let go" in march for missing too much work, and being down to part time. I stayed strong and kept positive and was thrilled when I found a job only 3weeks later. even better it turns out I love the new company I work for, so even though there is typing involved its not quite as much as the last job and I like it.

.....Then my CrPS reared it's nasty head. Looks like not only does cold and damp are a trigger, now so it heat. We've had a but of a het wave.....and my doctor and I think I'm like one of the 3% percent of CRPS sufferers whose symptoms are also triggered by hot weather......

I just can't take it, I really can't! How in the world can I life my life? I was already coping with the fact that I can't do a ton of things with my daughter that I used to... now I'm going to have to extremely limited my activities outdoors in the summer too? I can't go (gently) swimming on a hot day with my girl???? How am I supposed to live like this? How can I give her a normal mother when I have to deal with this...
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Old 06-19-2013, 03:50 AM #2
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Oh Songbird how I wish we could just wave that magic wand sometimes and make all this crap go away...

I read through your list and I recognized every word. I'm doing ok at the moment, but I can feel that bad time so close to the surface - like this better patch is just the skin on custard, and that one false move could send me back there. There is so little we can do, but so much goodwill out here for us all. At the end of the day, you have two choices - to fight on or to give up. I know that you will fight on, because you just will. You are tough and brave. You have to believe that this bad time will pass, and that there's something better ahead.

When you are in that deep black pit of relentless pain, you can't see anything but the darkness around you. But there is hope, and you have people who love and need you, and sometimes that has to be enough for now. I went through times of thinking what's the point in carrying on, I wish I was just not here now, I just want to stop hurting.

Of course there is a way out, and personally I believe we all have a right to make the ultimate choice if the day comes where there really is nothing left but pain and fear. Try making a list and thinking the whole morbid thing through - it actually helped me get out of my pit. I divided a piece of paper in half, and wrote the grim reasons why on one side, and good stuff on the other. And I listed stuff. And after I had written the crap stuff on the bad side, I stopped and thought about what the good stuff in my life was. I put my husband and children, then my parents and sisters (even if they can drive me mad at times), my dog and cats, paused, then wrote my piano and cello, the book I'm writing, sitting in my garden, cooking a big fat chocolate cake when my kids are at school and seeing their faces when they walk through the door, watching a perfect summer sunrise, eating ice creams with my children... It's amazing the things you find that actually make you feel good. Things you want to do again, see again, feel again. It made me realise that I wasn't ready to give up all that and let this win. It REALLY made me think. I cried for hours, but I turned a corner that day because I just had to. I keep the paper in a safe place in case I need it. It helps.

Everyone is different, I'm not saying do this and you will be fine. If only! Just that this is what helped me at a really bad time.

CRPS takes so much away. It is a relentless thief, a murderer of so many dreams and plans. But it does not have to win.

You are a fantastic mother to your little girl, and I'm betting that she wouldn't want to be without you for a minute. The reason? Even in your darkest time, she is there in front of you and the first thing you think of. Even if you couldn't move from your bed, you could still talk to her, listen to her, be with her - those things are worth any number of Disneyland trips, running through woods, dancing with them... Those things are lovely, but you have to find others that you can do without aggravating your pain. Sit down with her and talk about the CRPS, that you hate the fact that you can't do some of the things you would like to, but ask her what things she can think of for you to do together that wouldn't hurt you too much. I did this with my youngest, and she got really creative with it! I think she enjoyed it in that basic way children do. We made a list of things and we pick something from it when we want to.

I arrange for her to do active things like swimming, etc with another child's mum if my husband or mum can't help. And if she resents it we talk about it, I try not to let her get angry about it all. It doesn't work all the time, but she knows I hate it too, and I think that counts for a lot. I feel really blue when she is out doing something that I wanted to do with her, and someone else is there instead. I think it's only natural. But when she comes in I ask her to sit with me and tell me all about it, so that I can see it too. Kids understand more than we know, and the basics of being a good mother you already have there. You're a better mum that many that have full use of their bodies....feel proud of that.

Sorry if any of this has sounded preachy or like I imagine myself to be a great moralist I don't!

Take care of yourself and your little girl, and I hope tomorrow is brighter

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 06-19-2013, 10:47 PM #3
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I know I sounded fatalistic, and probably suicidal. but Im really not. I feel much better just having said all the things I was feeling. Trust me no matter what I'm going thorugh I w0ould never do that, I could never leave my daughter! Thanks for your words of support
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Old 06-20-2013, 12:26 AM #4
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I'm glad you're feeling better - it's just so important to let loose and vent, and this is a great place to do that. One of the worst things is that people around you just don't understand - but here, we do.

I wanted to add something about the mother aspect : you're worried about how you can give her a normal mother, and I understand that. I have 3 kids. Yet I've found, over and over, that when I meet new people, the ones that are the kindest and most compassionate and wisest are those that have been through hard times. If you keep loving them and working things through, you are giving your kids really valuable lessons and developing a deep and wise and compassionate character in them. It's not easy, and I wish we were all healthy, but there are beautiful things that can come out of this. Keep loving them and talking with them, and best wishes and prayers to find a good treatment that helps you!!!
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Old 06-20-2013, 03:01 AM #5
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Quote:
Originally Posted by CRPSsongbird View Post
I know I sounded fatalistic, and probably suicidal. but Im really not. I feel much better just having said all the things I was feeling. Trust me no matter what I'm going thorugh I w0ould never do that, I could never leave my daughter! Thanks for your words of support
I never thought it! And I know just what you mean - personally, I think there's a BIG difference between feeling hopeless, wishing the pain would end, and not knowing how to carry on - and considering suicide. I did the former for a few months, but I didn't come close to the latter. But it did help me to think it all through in terms of good and bad extremes. I think I just got stuck in a pit of pain for a while and couldn't see anything else.

I've vented myself a few times (as you know lol). Someone is always there, for which i am so glad. Support is a brilliant painkiller! When you are really down, it's amazing how much it helps to get it all out. Glad you are feeling better today

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 06-21-2013, 06:53 AM #6
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Quote:
Originally Posted by CRPSsongbird View Post
Sometimes, just sometimes. I just wish it would end. I am normally a happy person. I can usually deal with whatever this crap throws at me, and still keep being me. I can still love life and live it, well around the CRPS anyways. But lately. It has been so hard. I been trying to oull myself out of this funk.

I just feel so...

Sick
Hurt
Angry
Depressed
Grieving
stressed
Sad
resentful
Manic
Nauseated
Hurt
Confused
Frustrated
Useless
Broken
doomed
Done
desperate
Hollow
Frail
Frayed
lost
helple
crazy
vengeful
exhausted

And so many other things that I can't even put into words. Sometimes, whens it takes everything I have to get through work, or even just the day, because I just feel like bursting into tears and crawling back into bed...

My arm CRPS is progressing. Its turning more red. It's still not super cold, but the last flare up I had was the worst yet. The pain was so intense I was vomiting. Granted the pain died down a bit, nut y daily pain level is still way higher than it had been. I had been having such a "breakthrough" for the last almost 3 months. Between my new medications, lifestyle changes, and altering how I was living, everything was going really well.

I had kept my head up and stress down when I was "let go" in march for missing too much work, and being down to part time. I stayed strong and kept positive and was thrilled when I found a job only 3weeks later. even better it turns out I love the new company I work for, so even though there is typing involved its not quite as much as the last job and I like it.

.....Then my CrPS reared it's nasty head. Looks like not only does cold and damp are a trigger, now so it heat. We've had a but of a het wave.....and my doctor and I think I'm like one of the 3% percent of CRPS sufferers whose symptoms are also triggered by hot weather......

I just can't take it, I really can't! How in the world can I life my life? I was already coping with the fact that I can't do a ton of things with my daughter that I used to... now I'm going to have to extremely limited my activities outdoors in the summer too? I can't go (gently) swimming on a hot day with my girl???? How am I supposed to live like this? How can I give her a normal mother when I have to deal with this...
I feel like I could have written that! I ask myself the same questions about my life and my daughter. I was looking forward to summer too but then when we had that heat wave I was hurting! It is so unfair to our kids! But they know that we are doing the best we can and that we love them! Keep your head up we can and will get through this!!
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Old 06-22-2013, 01:28 AM #7
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This is the place you should feel free to vent such things. Sometimes I wonder who else but us (with rsd/crps) can really understand these feelings.
Sorry, for delayed response I was sedated for nerve block.
I think we must all be so tough to endure this.
I feel like just like this sometimes and then it is all I can muster to pull myself out of it.
I can't imagine what it's like to fight cancer and bless those who do!
But every treatment for us is a "stab in the dark" or considered experimental.
One doctor just the other day (regarding colonoscopy) told me that the rsd won't directly kill me, I just may wish it did but, cancer can, howeveer it can be prevented.
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