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 07-01-2013, 10:45 AM #11
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Crabs with CRaPS hahahaha. That should be on tshirts!!

Seriously, I'd just like to drink a beer every now and then, but every med I have says don't drink. *sigh* so, I drink diet Pepsi.

It is nice to see and speak to others that are going through the same things I am. Sometimes I wonder if all these dumb tests I'm having are just going to yield the result of an rsd flare. All that for nothing. I guess it's better to know than not know.

TK
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Old 07-01-2013, 07:54 PM #12
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Quote:
Originally Posted by Brambledog View Post
Right. I'm giving you fair warning - this is a small rant at Sods Law. Or Crips Law as it now is... I'm ok, just having a moan at the sun, bless it, which is making me wish I could go out and enjoy it!

So, today. It's a lovely day. Husband has been rowing, elder daughter went to town with a friend, youngest went to the park to play...

What have I been doing? Sat inside wondering why my feet and leg choose a nice sunny Saturday to really fire up so that everything I do today has to be in 5 minute slots of time.

1 load of laundry in the machine, laundry room tidied.....5 minutes
SIT. OUCH.
Unload dishwasher, reload it, tidy kitchen a bit....another 5
SIT. OUCH.
Play piano for 10 minutes
SIT. OUCH.
Collect all upstairs things in a box ready to go back to where they should be...
SIT. OUCH. OUCH.

You get the picture!

I want to be outside in the sun wandering around town, getting the last few bits before we go away, choosing a t-shirt, taking my kids to buy a few things for themselves. Watching them laugh and pick ridiculous things out for fun... I was going to go in today, but by the time my husband returned from rowing, it was clear today was not a good day to do even the tiny route I had planned in town. My feet and knee have been so painful every night recently, I can't bear the thought of them being even worse because I've ignored the warning signs. But I feel a real wet blanket for staying home while they go out. 'Poor mummy with her bad leg'....sigh...

Days like this all my usual resolve and bravado just melts away, and I so WISH I was the old me again....slim and energetic and fun, doing twenty things in an hour and chasing my kids around in the garden. Now I feel fat and slow and a burden every time I do go out.

I HATE CRPS!!!!!!!!

Hope you are all having a better afternoon

Bram
I totally get how you feel. It has been great weather here! We have been organizing our house and redecorating my daughter's room... and what do I get to do?? Watch! It really sucks. It makes me feel like a lazy *****. I feel guilty because this is my house too and I am not helping, so what do I do I help anyway and now I am hurting. I want so much to be able to have helped paint my daughter's room and help hang the wall decorations. I want to be able to reorganize and clean my house and not just tell other people how to do it. Although my dad has a new girlfriend who is quite understanding of my situation, which is refreshing and surprising (It is hard for me to trust it)But since I have been ignoring my pain and helping anyway, I am unable to take my daughter to the river to play now that it is hot out. It is very frustrating watching your old self disappear and not be able to do the things you want to do. It makes fighting hard to do, but then you remember why you are fighting. You have to keep going so that you can find the things you can do and find out who the new you is. We have to find the happiness in who we are now so that we can keep fighting, keep smiling, and keep living and not just be alive. I hope that you all are doing better today!!
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Old 07-01-2013, 11:57 PM #13
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Bram, are you sure about not taking the wheelchair? You don't have to use it, and if you DO find that you need it, it's right there. I finally swallowed my pride and use my son's extra scooter when we're on trips, and it helps SO much!

Another option is to see if there is a place that rents wheelchairs/scooters close to where you're going to be.

Have a wonderful trip!!
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Old 07-02-2013, 03:40 AM #14
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Angelina - that is EXACTLY right! I do feel lazy, I know it's stupid, but the little bits I do now are a lot for me, but hardly noticeable to other people, and I can't keep saying 'I would do that myself, but...' - people's eyes glaze over!

SioRian - thanks I have booked a golf buggy to use on the island while we are there, so I will be able to get about a bit. We have a rowing boat booked to get over to the other islands and I couldn't put the wheelchair in that! I've been proud of myself not using my chair or crutches for ages, but I realised yesterday that I have actually been doing less! Although I can walk a little bit further and am not so unsteady, I still can't walk far and have been having a lot of lower leg pain, so I've been avoiding going anywhere much. Hmm. Not quite the plan! So on Thursday we are going out and I'm taking the chair so I can get around properly.... What a muppet. Pride is all very well, but...!!

Thanks guys

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.

Keep smiling!
.
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Old 07-02-2013, 04:15 PM #15
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Bram, sorry for the late reply. I'm so sorry you have been having a tough time with the lovely weather and, like the others, I understand. The weather was so nice this weekend and I did pretty much nothing. Before CRPS, we would have been out making the most of the sunshine. Having said that, my husband was just out of hospital (he came home Friday), so he wasn't really up to much either. We were quite a pair this weekend - wonky and wheezy.

I also get what you guys mean about feeling lazy. I feel like I just need to suck it up, to push through it. I feel like I just need to be stronger and ignore the pain.
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Old 07-02-2013, 05:32 PM #16
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Thanks Kim Sadly 'sucking it up' is a lot harder in practice, and usually leads to a flare....as I'm sure you know! Whenever I try to do too much I suffer ten times as much later, I've learnt that a small push is ok to try, a big one is sooooo not worth it

Laziness is just a state of mind lol

Bram in a silly mood
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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.

Keep smiling!
.
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