[chaos]

I am going to an outdoor event this weekend that I will attend no matter how bad I'm hurting. I was out almost two weeks ago and had to seriously hold onto my DH's arm to get by later in the day. I do not want to depend on this, he says it's okay but it doesn't allow me to walk like normal. My dad left his travel cane at my house, and if I put it on the shortest setting I think it's right for me (my arm is just a little bent while holding it straight-ish down). My pain is the same on both sides as the injury was in the middle of me. I'm right handed, but it's my right hand that is tremoring. It seems if I lose any balance it's toward the right, so I'm guessing that's a better side to use it on. Maybe switch it back and forth? I use my mouse with my left hand so I should be able to do that.

I kind of wonder if my DH is embarrassed or something if I do use the cane. He knows what's going on but still I see him hoping it's just not that bad. I'm the one dealing with it. People use canes all the time, and I can just tell people "my neuropathy is acting up" without explaining everything because nobody knows what CRPS is.

I don't normally need anything, but want to be prepared and the weekend before last was the first time I really needed support. Any tips, advice or opinions would be great.

[zookester]

Originally Posted by chaos

I am going to an outdoor event this weekend that I will attend no matter how bad I'm hurting. I was out almost two weeks ago and had to seriously hold onto my DH's arm to get by later in the day. I do not want to depend on this, he says it's okay but it doesn't allow me to walk like normal. My dad left his travel cane at my house, and if I put it on the shortest setting I think it's right for me (my arm is just a little bent while holding it straight-ish down). My pain is the same on both sides as the injury was in the middle of me. I'm right handed, but it's my right hand that is tremoring. It seems if I lose any balance it's toward the right, so I'm guessing that's a better side to use it on. Maybe switch it back and forth? I use my mouse with my left hand so I should be able to do that.

I kind of wonder if my DH is embarrassed or something if I do use the cane. He knows what's going on but still I see him hoping it's just not that bad. I'm the one dealing with it. People use canes all the time, and I can just tell people "my neuropathy is acting up" without explaining everything because nobody knows what CRPS is.

I don't normally need anything, but want to be prepared and the weekend before last was the first time I really needed support. Any tips, advice or opinions would be great.

Are you going to PT? They would be the best to ask. Normally if say you have a bad hip/leg on the left side you would place the can in your right hand. I certainly wouldn't suggest making this a habit because you may wind up adding compensation pain to the mix of what you are already dealing with. That is also a good reason to either ask you PT for sizing or go to a pharmacy and ask for assistance there. You want to walk as normal as possible so that the firing order of muscles don't change.. and thus become even more problematic. If the fit isn't right it can throw everything off from your neck to your feet.. not fun.

When someone who doesn't know me asks me what is going on with me I just simply say I have a condition that affects my nervous system - similar to MS. It is the easiest way I have found to answer quickly without questions to follow.

Good luck on your outing.

[SloRian]

I have a walking stick that I use instead of a normal cane when I need to, and I decorated it with bright curly ribbons in colors that I like to make it as cheerful and pretty as possible. It's kind of a "if I have to use a cane, then it's going to be on my terms, and I'm going to make it pretty!" kind of thing. A little bit of control in an out-of-control situation.

I still feel bad for my kids and husband, because I'm in my early 50's and my parents and my in-laws are in their 80's and can run circles around me, and "all the other moms" at school are normal, ya know? but that's just reality - I need help walking sometimes, and it really helps. They're used to it now, and will even remind me sometimes if we're going somewhere where I might need it. But I totally know what you mean - it's SO hard to have to actually see something like a cane, when you keep wishing so hard that it isn't true. Best wishes for a good resolution for this! I think the best thing to do is talk it out, and work together, and try to balance your needs and his needs. Maybe sometimes you can skip the cane and use your DH's arm if that's what helps him, and sometimes you can use the cane if you don't want to have to hold onto his arm 100% of the time.

My middle son was born with caudal regression syndrome and has no legs (well, he kind of has little stubbies, but basically no legs). There were times when he was a baby and he was in the stroller that I would cover his body with a little blanket and put a scrunched-up blanket under the top blanket so it looked like he had legs, because I didn't feel like using the extra energy that it took dealing with people's reactions to him, and I wanted people to see him just as a cute little baby. Most days I didn't do this, but some days I did. It might be a bit of the same thing with your husband - it might just be a little break for him if you sometimes just used his arm - do you know what I mean?

A really hilarious thing happened once when I was doing the fake-legs-under-a-blanket thing. Some total stranger came up to me and bent over the stroller and started cooing about how cute he was, and then she said "I just LOVE babies' feet!" and actually reached out and whipped off the top blanket and came face-to-face with his stubbies and twisted, deformed little feet. The look on her face was priceless - she stood there with her mouth hanging open, unable to make a single sound except a kind of gasping noise. I said my usual explaining thing that I had perfected for that period of shock when people saw him, and that gives them time to recover, and finally she recovered a bit and stammered out something or other and fairly ran off. I bet she never did that again!

Anyway, here's a gentle virtual hug, and I hope you two can work this out with compassion and understanding, as well as an acknowledgement of reality. And I recommend ribbons for that cane!

[zookester]

My heart goes out to you SloRian!!! And to your son <3

[SloRian]

Thank you! He's a sweetie and well as a little rascal!

We ended up amputating his feet because they just got in the way and they were really misshapen. He loves to come up with foot jokes. One time when the wrestling team was coming home from a meet on the team bus, they were in a very minor car accident - they bumped the car ahead of them (it's a small bus). The bus driver shouted back to the guys, "Is everyone OK?" My son immediately yelled back in a terrified voice "I can't feel my feet!" Everyone was shocked for a split second, then they realized who said it, and the whole bus burst out laughing!

[zookester]

Originally Posted by SloRian

Thank you! He's a sweetie and well as a little rascal!

We ended up amputating his feet because they just got in the way and they were really misshapen. He loves to come up with foot jokes. One time when the wrestling team was coming home from a meet on the team bus, they were in a very minor car accident - they bumped the car ahead of them (it's a small bus). The bus driver shouted back to the guys, "Is everyone OK?" My son immediately yelled back in a terrified voice "I can't feel my feet!" Everyone was shocked for a split second, then they realized who said it, and the whole bus burst out laughing!

OMGoodness that is awesome!! Thanks for sharing such an inspiring story. I'll bet he brings a lot of perspective to your life.

[SloRian]

Originally Posted by zookester

OMGoodness that is awesome!! Thanks for sharing such an inspiring story. I'll bet he brings a lot of perspective to your life.

Yes - it's really all about the heart, not the body

(but it sure stinks when the body hurts so much ... )

We should have a cane decorating contest!

[Allanira]

I use a cane when I go out because I'm never out for a short time. If I'm in a flare I use it here at the house. I didn't start using one till this year because the pain got so bad I could barely walk and thank you to my dog and son I slipped in water and really torqed my knee. I taught myself how to use it. Its just a black adjustable cane but it works. My son tries to play with it. He also brings it to me when I need it. He has tried putting stickers on it but then pulls them off lol. I say if you need it then use it. If not set it in a corner and leave it.
SloRian your son sounds adorable. Hes one of those that doesn't let life get in the way. Also ALL babies are cuties. No matter whats wrong or not wrong about them. Its not whats wrong its the personality that matters. He is still a loving caring person. I use to ride the school bus with 2 sisters that had down syndrome. They were smart, funny and so sweet. Others made fun of them but I didn't see their differences as others did. They were normal in their own way to me. Also I don't like when people take liberties with my goobers. I am going to try and raise my sons like I was raised. Not seeing the differences between people but seeing the PERSON. Shoot I was in middle school before I realized some people judge someone by skin tone. I had never realized that someone was "different" just because their skin was darker than mine or they had a disability. Heck I still don't think their any different. Its the people that decide to remain ignorant and are jerks that are to be pitied. Its lack of knowledge that is making them idiots. I even told my husband one day while at walmart after seeing people discriminate and older person that a few villages were missing their idiots and probably kicked them out lol. I then while using my cane help her to get to the sitting area in the pharmacy.
For all of us, we have whats called an invisible disability because it doesnt show all the time. People ask because they can't see it. They can't comprehend the pain and emotional turmoil we go through daily. Just because I try my hardest not to use my cane at my home doesn't mean I don't need it. If I fall its to the left and thats my bad side. People also don't care like they use to. We have become a society of me me me and I I I. Its all about me. I dread what my family and friends will think back in east Texas when they see me on a cane, and at the same time I don't care. I am already educating my family about this disease and if someone doesnt like it they can kiss my big white (well red) toe. Just not the left please it hurts lol. I'm not going to let them slow me down with their narrow minded ways. I have a cousin that has MS. She is still a silly person, she can make anyone laugh. So she uses a cane or a wheelchair or what ever she needs to. We all do. Keep smiling guys. Don't let narrow minded people get you down. oh and I'm looking at getting a pink cane lol.

[Brambledog]

Ahhhh canes, walking sticks, crutches, wheelchairs......

I was so scared of using anything. I'm 42, I was 40 when this started. Still young in my heart and my attitudes, took my health and vitality and strength slightly for granted. And thought I had another 40 years to gradually slow down.... I never considered not being active and energetic into at least my 70's, like my parents....

Gosh this is hard. I fought for ages against using anything but clearly-medical-look-a-doctor-made-me-use-these crutches. But in the end you need to use what makes your life easier. Whatever gives you back some of the you that feels like it was ripped away.

I've been able to NOT use aids for the last two months. But with the last month and the creeping gnaw of the monster getting angry again, I see them propped in the corner looking at me, I see my wheelchair in the garage, all cobwebby and forlorn, and I don't want to be in it. I don't want to be that person.

But you know what. That person IS me. I have CRPS. It has made a right mess of my left leg, my left arm too, my right toes. I hurt all the time. I lost my job, some of my friends, my sports, my joy of walking and running, my freedom to be alone wherever I want. I lost some of me.

So what. So freaking what. I am just a slightly different me. CRPS doesn't own me, it just means I have to do things differently now. So I will use whatever I have to to still be me. And I like to do stuff.

I like to go to the park, to wild beautiful places, to big stores with my kids to pick out clothes. I like to collect conkers, to walk on the beach, to go to the cinema and watch a loooong film. But I need a little help, so I'll use the darn things. And I don't care who sees or what they think.

I've learnt that people only have a problem with it if they see YOU having a problem with it. So be proud of yourself for doing what you can. Smile, talk, act natural. Never ever be embarrassed for trying to live your life against odds like ours.

I use my cane on the right because my weakness is in my left leg. It's quite a cute cane, dark wood with a shaped top to sit in my palm, because I can't tolerate the normal shape

Sorry, this turned into a right old speech!!!!!!

I was talking to myself I think. It's time to use my old friend with the dark wood again, and I guess I just needed to realise it and accept it.

Good luck everyone and walk tall. We are all of us amazing for even getting out of bed today

Bram.

[mrsD]

I've used canes since I was 40 or so. I found them difficult. I have carpal tunnel (some nerve damage) and cane handles require you to flex your wrist to some extent and this hurt my hands.

I now use aluminum walking poles. The handle is much higher,
and part of the pole, so no leaning on it, the same way and no flexing. They can be used with the wrist extended. These poles are very light weight and there is minimal strain on shoulders etc using them.

I have PN and a left adductor tendon injury in my thigh that didn't heal 1000%. I use the walking stick in public, and for stairs. No one stares at me or watches me at all. (the cane attracted too much attention). I was not accepted at any of my second jury duty calls, and have not been subsequently called again. All the lawyers stared at my cane during the voir dire interviews, and I was excused from all those that cycle. So if you want off a jury...try using a cane! LOL

Last week my lower back went "out" and I couldn't manage to walk, so I used my walking pole indoors. It is so lightweight and easy.

I got mine at Dunham's sporting goods, it is green, for $15.
Last year I bought a second, a red one, online at Ebay which is identical and also adjustable etc, for $4.95. I tend to lean it against things, and temporarily loose it around here. So having 2 here helps me with that. We live on a hill with a huge backyard, with 20 steps to the front door...so since I cannot handle stairs well anymore, with my balance issues, I must use my pole.
I have one upNorth that stays there, since we have an outhouse and lots of rocks to navigate. I use it outdoors there for balance as well.

The hiking poles can be very expensive...but my green pole has lasted over 5 yrs now. They are not intended to put all your weight on them, but they do take some. The rubber tips the inexpensive poles come with, wear out quickly on concrete etc, so I bought a Leki pole tip and it has lasted 4 yrs.

If you are worried about social stigma and staring, I found no one really cares about a hiking pole. People did stare at me with my cane ALOT... a younger person with a cane is strange and people do stare at impaired people with disability aids. You will just have to get used to that over time.