rough week, just ranting
 

This week it has really hit me how much this stupid disease has changed me. In the middle of the week I was at the grocery store with my husband and we used the self checkout. One of our items had a coupon on it, and the computer said to give it to the attendant. I turned around, she was about 15 feet ahead of me. To my right and a little ahead across from me was another girl checking out, stepping side to side to put things in her bags and to my left coming straight up to go between the self-checkouts instead of coming into the store normally was a customer pushing a cart. My CRPS is pretty much my entire left side now, and I quickly took a step backwards and waited for him to pass before taking the coupon over to the girl waiting. When I turned around and came back my husband who didn't understand what had just happened said that he didn't understand why I was confused by the process. I completely lost it, right there in the store, and broke down in tears. I wasn't confused, I was scared out of my mind that someone would bump me or hit me with their cart. Then my husband who is generally amazing and supportive felt like a jerk, and I felt worse for crying about it and making him feel bad. Which just made me cry more.

Then I had to deal with today. For a long time, while it was still just my leg I continued to go to church. Even though I had a lot of pain from sitting, I could adjust how I sat and be there at least for a little while. Now though, with it in my arm and shoulder too I'm back to the fear thing and stopped going. It isn't that there are so many people and I'd have to navigate that without bumps, although that scares me some. It's that church people touch. I realized this week though that I had filled up all our tithing envelopes and needed to give them to someone and pick up more so I had to take them in. I stopped in after church and talked to a few people, carefully staying on the edges of the crowd by a wall I could keep to my side. I had to stop someone from touching me. I need to talk to someone about something, and a gentleman offered to help me find him but I simply told him that I can't be there navigating through that crowd of people. I probably looked like a deer in headlights.

The worst of it is, if it weren't for the fact that people can't help the obsession with touching other people on the arm, I could totally go for a little while every week. I went to comic con in April of this year. Yes, I suffered greatly from the day of activity, but was able to navigate the crowds because it was spread out and people don't go around trying to touch other people there. It also makes me sad to think about having lost something that is so important to me because of fear and pain. Most days I deal with this like a grown up. I put on a brave face, smile through the pain so others don't have to suffer with me and try to live as normally as I can. Some days though, like today, it just hits hard and it's just too difficult to keep the mask on. Sometimes, I just need to throw a good tantrum about how none of this is fair to be able to keep going for a few more months... until the next time something breaks through and I need to have another.

Aw, Adelaide, what a hard time you've had! I do not mean that at all
in the superficial way either. Like many others here I GET IT!
I have a splint for my wrist that was made by P.T to encourage my thumb to
bend again (it won't) but I wear it in public on purpose for a lot of reasons.
CERTAINLY NOT FOR SYMPATHY!. It does kinda warn people not to try to
hand me things or touch etc. with no words or explanation needed.

I understand how much it hurts to have limited participation in things
that matter deeply to you. Many, many times I put on the brave face as well
and smile and hide the pain & fear especially to loved ones.
:hug:

Adalaide,I'm so sorry your dealing with so much at the time.
Emotional and physically is a huge thorn. I'm also scare while I'm in the grocery stores,kids running around,people pushing you,is ridiculous how people behave this days.
Nothing worries me more than be hurt,is likes when I got up the car,my body gets in paranoiac mode,always looking around and protecting my injure foot and also my scs surgical sites,they hurt as hell.
I wish we all can have that imaginary light that say red,don't get close,yellow,be careful and green I'm ok, sadly We can't control others bad behavior,is real frustrating,
I wish that episode can stay behind soon and you recover your trust on being outside,we always going to be scare,we shouldn't ,but is unfortunately our reality.
Receive gentle hugs and blessing hoping you soon will get better,from Jesika. :hug:

Hi Adelaide, I'm so sorry you had such a rough week. I completely understand your fears and have felt the same way at times. One time I fell down the stairs because I lost my balance because of the ringing in my right ear (tinnitus) and down the stairs I went. My husband jumped out of bed and came running down and asked if I was ok. I couldn't speak. I couldn't move. I just started crying hysterically because I thought I broke something which terrified me because I know that rsd can spread with another broken bone. I finally sat up and hugged my husband and said I was physcially unharmed, but mentally I was a mess. I must have sat at the bottom of the stairs with him for about fifteen minutes before I could stand up on my own. I thank goodness for my husband and son. I also thank goodness for the friendship and support I've gotten from people on forums like this one. It helps alot to know I'm not alone. I hope it helps you alot to know that you're not alone either. You have two families now. Your family at home and your family here on this forum. I hope that calms your nerves a little. As for being afraid to go out because of fear of being bumped into, I understand, but I try to go out a little as well as keep taking the stairs, because if I don't, then my rsd will own me. And I won't allow that to happen. It's taken enough from me. I hope that your rsd will not come to own you either. Just remember to take it one minute, one hour and one day at a time. And always remember that you have a friend in me. With love, Renee.

HI Adalaide, sorry you are having such a rough time right now. I totally understand what you are saying.
It sounds like worship is important to you, and I would hate to see you give up that part of your life. I don't know much about your story, but can you make an accomodation for your CRPSy parts that would signal to people "don't touch"? For me, it is my right leg and right foot. I walk with a cane in my left hand and my husband walks on my right (CRPSy) side and between the two it creates a bit of a barrier between me and people. I also sometimes use my wheelchair, hate it, but it does give me a protective "zone". Just some thoughts.

I also have noticed how many of us refer to "the mask" we wear to get through our day, to function, to not burden our loved ones with the reality of our pain. It is perfectly healthy to take off that mask and unleash the pent up emotions that build up behind it. It takes way too much energy to hold onto those emotions.

Wishing you wellness ~ Lottie

Adelaide
Sorry for your day/experience. I can totally related as I have RSD in arm too and wore a brace, soft splint thing for years and years, still do sometimes. The fear of someone knocking in to you, or actually knocking into you, is our reality and it is natural to feel like you do. It can be overwhelming...

We are here, and get it! Thanks for sharing with us and I send virtual hugs