OK, lets see if I can get this out before she comes back... nothing like a game of chase with a toddler.

What I mean to say is that if you put on your happy face for people, you present yourself as feeling much better than you do and they come to believe that. We all do it, it is human nature to hide some of your suffering and present yourself as well as you can in a social situation. It is a problem for most people here with friends, family, and spouses/significant others. It is very important for you to find a constructive and factual way to say " well I don't feel great but I am here doing the best I can" and hope that people who are your true friends will understand. There are lots of good ways to convey that message without whining about it. My husband always tell me to just "stick to the facts" It is a good motto.

My favorite answer I think came from Wittessea on another thread (sorry I didn't look up the link)- "I am not feeling any better or worse"

I also often use, "I am getting by", "today is a [good/bad] day"
My boss is getting accustomed to my 'good' weeks and 'bad' weeks.
My 3yo can even tell people that my arms hurt and usually rememebrs to be gentle with me. I am also not past making my self look much more pathetic than I feel when the time requires it (like askig for a carry out at the grocery store). Or passing off a "I know I look OK, but my arms are actually quite defective" And giving a generous and heartfelt thanks for the help.

If what you want is for people to just bug off, you can also say- "well today I just wanted to forget about my arms and have a good time"


It is hard, and the wrold is not out to get you, but remember that people are generally stupid. They are used to interpreting exactly what they see and not lookign to read between the lines of your words, actions, or expressions.

At any rate, there are some good older threads on this topic, and I am going to have to run...maybe someone could pull one up?

I am sorry that you feel so crappy..believe me, I understand.

and the Francinator is back, demnading to be loved, so I must go now.

best to you
johanna

Can I add some thoughts and respond to others comments??

Siccy, I am so sorry for your physical and emotional pain and frustrations. I'm glad you come here to share your feelings and concerns, I think the others are right in that this is the place to come and vent and have other people know what you are talking about. TOS and RSD are very difficult conditions to deal with. It is devestating to get the diagnosis and then find out that so little is known about treatment and then that treatments can vary so. I went through 4 Dr.'s before I found one that could diagnose me and then on to another before I started getting any relief from my pain.

I went through all kinds of medicine changes as well and each one takes its toll on your body. Those changes in themself can cause depression symptoms.

As the others have said, Hang in there... better days will come. I am 1 year post op. and the swelling in my neck and arm went down at about 6 months. Then I began to feel some what better. It's a long hard recovery, I will have good days and then feel like I have regressed.

I had to learn to pace myself and let alot of things go. I had to recognize that I am not the same person I was before and may never be that person again. That's me,and what works for me.

Financially, there are some places you can turn. HubbywithRSD mentioned some sites on the RSD forum that offer financial help. Also Joni Erickson Tada has a foundation that provides wheel chairs for those in need, and helps with finances I believe. Keep searching for financial help if you can, it is definitely out there.

And keep coming back to the forum. There are people here who care about you and want to help and support you.

Flippinout, it is good to see you back!! I hope things are going well for you.

gbsb, I can't use the tens unit. It just makes me worse! It really flares me. Dr. Ellis says thats not unusual, alot of tos'rs can't use them, so if lowering the dose doesn't work maybe move on to another form of treatment??

HeyJude5050, the quote that you are never given more than you can handle is from the Bible. It's one that gives me comfort on those really tough days.

Dawn,Jo55 and Johannakat all have really great advice (as usual !!)

I too want to welcome those of you that are new to the forum and I hope that you can find answers as well as encouragement here.

Take Care All,
G ~

Gromily,

I did know that quote is from the bible and I do believe it is true. I was just trying to lighten things up a tad. I try very hard to never ask "why me."

I do have bad days but I know that things CAN be worse.

I do know people who could not handle half of what the folks on here deal with on a daily basis. That is probably why they don't have the same burden.

That is also why I shared the Strong Woman card on the site. It reminded me of everyone on here. (men too).

God bless and take care,

Judy

A month of two ago we had a discussion about what to say when people ask how you are - it seems alot of times its just to be polite. One of my favorite answers (one i've now adopted as my standard answer) is "no better, no worse." Then if they are interested, explain/expound away. but yes, it is frustrating when friends/co-workers - the people you see day in and day out- look at you like nothings wrong - you must be crazy.

Thanks for your support.I really needed to ventand know Im not alone.I used to post on the old forum every now and then.I stopped when pc crashed.I am
going to doctor soon to see if I can get some counceling.Its been six years
for me with tos and rsd.
I guess reality set in when doc told me to quit chasing my rainbow.
Somehow I just cant accept Im not going to get rid of the pain.I have tried to keep positive .Maybe god wants me to slow down .Changing my direction and it will have its purpose.I have always concidered myself somewhat strong.But Im bending.
How do your families (kids) deal with your limitations?My daughter thinks I
am an alien.She clings to me.I feel like I let her down in so many ways.
Sometimes I feel like her and my husband may be better off without me. Anyone else? I love my family but I feel like I am altering there life.
I push myself hard to stay on top of things.What use to come so simple
isnt anymore.I try not to complain.
Again ,Thank you for the support.
Siccy

Hi Siccy,
I doubt your family would be better off without you.
So put that out of your head
My guess is that if any family member in any family gets a long term medical problem it alters everyones lives. That's why we are families.
I am not married and have no kids but I can say it's frustrating and embarassing to have to ask my parents and brother for help. It's no fun watching your 60+ year old Mom carry things and debating whether you want to risk a flare up or more intense pain.
Be thankful you have your husband and daughter, go see that doctor and try to keep moving on.

Siccy the fact of the matter is that regardless of what we do there will always be a bit of time throught the day, hour, minute or second that we all will experience some sort of pain and that this pain is a reality we must live with. Unfortunately it is not us that contols the pain, but the pain that contols us! Guess what I am trying to say is moderation and trying to find out what we can and can not do is a key factor in how we may be able to function. Sort of like the accelerator pedal on a car, the faster we go, the faster we hurt... today I hav been typing more than normal and know that I will be paying for it later on though to me answering some of the mail I am getting is much more important than thinking of myself... and that you say you are not important to others is just a bunch of rubish, I beleive the worst we can do unto others is just to up an quit... love of a child is unconditional and they so depend on the time spent on them wether it be reading a book or out and about for a walk... so should you not make one of the conditions for your child be love in whatever it is you do ?!?
My best to you and your little one MARK-n-GOOBER

Hi Siccy,

I feel your pain. I have so been there!! You need to go through all the garbage to get to the good days. I have to look at it that way because then you really do appreciate the good days, Whatever that is for you...we are all in different places despite the same diagnosis. I hope you do feel better soon. I find my cat helps a lot she really makes me get out of bed and makes me play with her and laugh. Animals are the best. People too can help, if they understand....even if they dont. At my worst time when I was ready to end it all, I lay all the burden on my boyfriend and would cry until I couldn't breath anymore. It helped and he helped by just being there and holding me. I hope and pray that you have someone who will be this person for you. Sometime I wish we could reach through and give hugs to each other....gentle ones, but alas I must stick with this..... !

thinking of you and always here to help !
love and hugs,
Victoria