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

Sorry you are having a more difficult day today Bram. I can totally relate to those emotions. We have lots of storms coming daily for the next week, but it is sunny and hot out now. I see neighbors working in their yards and all I can do is watch Even if I felt a little better, I can no longer be in the sun because I break out in a rash. Drs figured I am allergic to the sun now. It is not from any medications, we ruled all that out...it really stinks.

My face has been in a bad flare the last few days and my leg hurts more when the weather is bad. My hands are hurting more from using them to type disability insurance appeal letters. This is why I call it "CRaPS" instead of CRPS!

I have been in a mood myself lately and am having a harder time snapping out of this one. I hate this stuff too and wonder how I can continue. I, thankfully, have a wonderful husband who helps me through.

I hope your pain eases soon so you can do more of what you like to do!
All the best,
Nanc

CRaPS is definitely spot on Nanc! Sorry you are having a bad time today with your face, that must be really sore, and being allergic to the sun....well, that's just plain mean.

What do you do to pass the time? Apart from typing out insurance forms obviously Hope you have some things you enjoy that you can do without too much pain. I spend a lot of time either on my iPad, reading or playing the piano. I'm a big list-maker too, but it's not as much fun when you know other people will be doing most of it - and not liking it either...

Hope you have a better evening, and take care of yourself

Bram

Yeah Bram, it is just plain mean being allergic to the sun....also allergic to pork, fish, shellfish, gluten and a ton of meds

To pass my time?? iPad and TV!! Not a lot I can do since my hands, shoulders and left arm are affected too. Can't go for a walk because my feet and left leg are affected. I have a Kindle, but haven't been reading much lately because my vision isn't so great in my right eye (lots of flares in my face lately).

We have many projects to get done in our house, but I can't do them. My husband was born with cerebral palsy which affected his right side, so he can't use his right arm or hand. I always did the two-handed things like hanging pictures, putting stuff together, etc. we had to get his sister to come over the other day to hang pictures for us (redecorated our guest room). Not being able to do these things has been hard for me to accept. So, I understand your not liking others having to do the items on your list!

Hope you have a better evening too!
Take care,
Nanc

Bram - hope today goes better. (If it is still today for you, since I am in on different continent!)

I love my iPad, because I can sit in peace with my foot up and relax. I used to be somewhat antsy and found it hard to sit still. My iPad helps me sit still when I need too because otherwise I do ignore the warning signs and get myself into trouble. My house is much messier than it was before this started. My husband and kids help, but their standards seem lower than mine . They have picked up some of the slack and I have compromised too. I've learned that I want a clean house but I don't need a clean house.

I like CRaPS too, but I won't say it to anyone at work, so they don't think I am saying I have crabs!

LOL! Yes, you wouldn't want to have people think you have that!

Sorry for your (extra) bad day, Bram It just really, really, REALLY stinks, and there's no way around it. Keep fighting for the good things - it sounds like you have a wonderful family, especially your husband! My husband, after being great for so many years, has been going through an anger phase for the last few years, and it's been really difficult for the family and ramps up the stress, which makes everything worse. But poor guy - it's pretty understandable - he married someone with a serious chronic illness (I have CFS and fibro, then a brief RSD episode that spontaneously resolved); our middle son has a serious physical disabilities - no legs; our daughter with RSD; plus his dad with prostate cancer plus brother-in-law alcoholic plus plus plusplusplus ... then the only healthy person in our family (our oldest son) went across the country to college! We've tried counseling, but he doesn't want me to talk about the issues in front of a counselor - just wants to talk about the minor issues, so we can't get anywhere.

Anyway, didn't mean to get into my own rant, sorry ... rant away, because it really IS such a sad thing what we lose ... but there are still so many good and beautiful things left.

A few years ago when I had shoulder surgery, my husband's company took the top executives for a free trip to Hawaii. It took everything we had to get me there - loaded up with pain pills and pillows! And I ended up spending about 80% of my time on the bed in our bedroom, while everyone else (including my husband - I insisted that he went) was swimming and snorkeling and touring around. But I could hear the ocean, and I enjoyed that beautiful sound.

Yeah, those lovely, sunny days are hard ... I used to be so strong, and I'd just look at sick people and think that they needed to just suck it up ... well, at least I'm not arrogant and ignorant like that anymore!

Hello Bram. Hope you are having a better day today.

I am in a funk too. Well I've got mixed feelings really. My oldest daughter just left yesterday with my granddaughter of 10 months. They are headed back home to Colorado. I thoroughly enjoyed their visit. The baby couldn't be any cuter or sweeter. She is beautiful. My daughter is pregnant again. She is still in the first trimester; there is a definite glow about her. Beautiful.

I tried my hardest to squeeze as much together-time as I could from the visit. I snuggled with the baby, well as much as there was time for. I mean the little girl is busy playing, crawling after the dog, looking out the window at the people outside, tearing apart block figures, etc ... so fun! I also tried to spend quiet time with my daughter. I say tried. I tried to play with the baby. I tried to visit with my daughter. Tried. Truth is ... I slept much of the time. I wore myself out the first day. I over did it. So sad. For the rest of the week I was lucky to get bits of playing and visiting in between my own naps. I felt awful. No, I really felt awful. I felt/feel both mentally and physically awful. My pain is at its tops. My meds are at their tops. I was faint,confused. My naps are at their tops. Like I said, so sad. I'll have an interesting visit with my psychologist later in the week.

Bram please forgive me for ranting. What I intended to say is that we CRPS/RSDers are all in the same boat. We understand how you feel when you are down. We recognize your pain and stress. We are pulling for you and trying to encourage you to feel better.

Sunnier days are ahead. I am hoping you will get to get out and enjoy it soon.

I recently had a miserable day because of the heat.

For those that don't "get" my screenname, finz is the name of a Jimmy Buffett song.....and a dance that involves putting your hands together up over your head with arms held straight, and singing "finz to the left, finz to the right and you're the only bait in town".....a dance that is NOT good to do when you have TOS and RSD.

Sooooo, June 20th, Jimmy Buffett came to town, and we made the pilgrimage to the concert. All day tailgating in the hot sun. Add cocktails, jello shots, shot skis.....you get the picture. Look forward to it all year, but that day I had one drink and couldn't stomach the second one. I foolishly started the day with a few diet cokes to try to wake myself up/get some energy, but I think it just made me dehydrated. I was so bright red from the RSD and heat exhaustion, total strangers were begging me to reapply sunscreen even though I was sitting in the shade under an easy up the whole day. I had to start the car and run the AC and try to sleep it off in there instead of having fun. Boo !!!!!!

At least the show was awesome and the evening was cooler so I could enjoy it.

Totally understand! I had a busy Friday and Saturday and felt like poop all day. Cramps, spasms, burns, pains. My left hip is killing me. No idea why. My left side tends to stay pretty low usually. I'm just so tired of wheelchairs, walkers, taking it easy!! I hope you feel better. I hate being young, well fairly, and deprived of things. It takes so long to get ready to go anywhere.

Hope you feel better! This disease is a bum, sometimes for sure!!



TK

Hey everyone

PLEASE don't apologize for posting your own woes on this subject, each one of your posts gives me that sense that I am not alone with this, that many of you struggle with the same thing on some days (well, many days, but let's pretend it's 'some' ) and that gives me a boost in a funny kind of way...

You are all fighting the CRaPS fight (not crabs lol, funny mental image there...) every day, and you are all amazing. I think we all win a little battle every time we get up on the morning, I know some days I just want to close my eyes again and try to sleep - if only

I'm doing ok generally, it's just that this heat is bringing with it new feelings and symptoms, and I'm whacked out with a headache. Wonder if somewhere there is a land where the temperature is always comfortable, the wind is never too strong, and the barometric pressure is constant?! Oh, and money grows on nice shady little trees..... A little too much to ask perhaps!!

We go on holiday soon, no planes but a long car ride and a ship for a few hours, then a smaller boat trip.... I am hoping I feel ok that day and make it there without any dramas. I have decided not to take my wheelchair, and hope that is a good positive decision! I keep telling myself that so many people have it worse than me, and can't go away at all or have no loving family to go with. I am lucky in many ways, I wish the CRPS would let me feel it more often!

Hail fellow sufferers. Keep being fabulous, and hoping for a break from this...

Bram