My mom's attitude
 

My mom thinks that just because you take a pill all the pain is gone..done...like it's never coming back. I'm SO SO SO tired of telling her "Just because you take a pill that doesn't mean the pain is gone" "What happens when it wears off. I'd be in complete agony." I said "Prevention prevention prevention". The pills i'm referring to is a muscle relaxer for my back. I have lots of internal scar tissue from SCS surgery. The pain is horrible. Last Sunday I had to sit for 2 hours because my aunt and brother came up. That started the uncontrollable pain. It's been 4 days and it hasn't settled down which is normal. And thanks to Thanksgiving Day I just got done sitting for maybe 4 hours and the pain is even worse. That's when she said "Just take a pill". It's not magic! It's not going to work if I was already in severe pain. It didn't do a thing.

I wish I could live alone. I have had RSD since 8/2005 and my mom STILL doesn't know the name of my condition. We had a fight over the phone when I was housing sitting at my dads last Sept. and I said "Do you even care?" (regarding me being in pain). I also ask if she knew the name of my condition. She didn't say anything. If my daughter was going to be in severe pain for the REST of her life I would try to find out as much about the condition as possible. I would dig and dig and dig until there was nothing left to look up. She doesn't "get" me and I told her that over that phone call. She doesn't care to. She acts like I'm normal. She has never showed that she cares. I'm basically alone in this. So upsetting. She's never given me a hug or sat next to me and said "It will be ok" or "We'll get through this".

Anytime I try to explain something, which would help her understand me (along with the RSD) she rolls her eyes and walks away. Like I'm rambling on and on about something. I want her to understand me!!!!!!

It's a holiday and i'm in tears. Holidays = Pain. I can't sit, stand, walk to far.
I used to love the Holidays pre-rsd but not so much anymore.

Had to vent .I'm gonna go calm down a bit. Whew! that was a mouth full.

I hope everyone else had a great pain-free holiday!!
Heather

I got this with my extended family too.... I do not understand why you wouldn't want to look up something that was causing your sister/daughter/dughter-in-law so much pain, and has changed her life so much. It used to really upset me, because I always want to find out what it is someone is dealing with so that I don't upset them without meaning to, or if there's anything I can do to help them. I just don't get it.

I think there is a massive massive huge enormous lack of knowledge about our disease, and because they don't know about it, people are inclined to be dismissive - they think that if it was really that awful, everybody would know. After all, everyone knows about cancer don't they? I suppose it's a default response - that it can't be that bad, so therefore we are over-exaggerating.... I discovered later on that my parents had told my daughter that I made too much fuss about my leg. That made me so mad, but also I was really upset and just despairing. I thought, if my own mum thinks that, what hope do I have of making anyone else understand?

You have to live with it as best you can. You can't force people to seek the information about it, all you can do is keep telling them little bits of stuff about it that they might remember. You can print off the wikipedia page on CRPS or something similar, although I found they didn't really want to be faced with that much information at once either. Sigh. The media could do so much to help us - the recent Daily Mail story really helped me, because my family noticed that, and I think it gave everything I've said some validity. Mind you, that annoyed me too!!! Lol. I thought, oh so you believe the blinkin' Daily Mail, but not me?! :rolleyes:

I really feel for you. It is so hard. Sometimes I still get upset by it, but not as much. I think it's just another side to this that we have to get used to. I've become more laid back and patient in terms of that side of things I think - I wasted a lot of my energy in being angry or upset in the early days, and it exhausted me on top of coping with the pain.

Breathing exercises, chocolate, someone to offload to, and a good glass of red wine and a funny film are all excellent at helping me cope with the frustrations of this :winky: I heartily recommend them! I've also been seeing a counsellor occasionally, and that has been really helpful too in terms of making sense of how I feel and what I can realistically do about things like that. I spent a lot of time thinking that I ought to be able to do something about it, when really I couldn't, and trying to understand and accept other people's points of view is much healthier.

It's not really their fault. Unless you're living with something like this, you have no conception of how awful it can be. And a lot of folk assume an unknown condition must be fairly minor, they don't do it to be cruel - its just the way society functions.

Take care of yourself, have some me-time every day, and treat your body to something nice, even if it's just a hot chocolate and an episode of a favourite show. And keep positive, because that's what will get you through :)

Bram :grouphug:

I am so sorry
 

I feel so sory for you.I do understand..I tell people too.THey look at you like we have 2 heads and 3 eyes..Tell her to read about it..Put something about RSD on the computer to read..I have told friends to read about it.I know they do not look it up or they would talk about it..So like you say just because you take a pill does not mean its going to work or even help.Sounds like she is maybe scared to know whats really wrong with you..Maybe that's how you she confront her..Have a daughter -mother talk..Tell her yes I have these issues,and yes this can get worse..Show her pictures..Good luck..Take care ..

Oh heather,
Don't get me started on family!! I have the opposite problem. My kids judge me and just don't understand.
I worked hard all my life until THIS. I've always done all I can for them too.
This group is where we can get understanding at least from each other.
I wish there was more awareness out there for us.

If you're living with her, it might help to speak with a therapist and determine if things can improve between the two of you, or if would be better for you to move out. --Even if it requires you to get subsidized housing and/or other help...

In many ways my mother was (and is) incredibly supportive, but with all the additional stressors of being permanently disabled, and chronically ill, it was just too difficult for me to continue living with her. It would be difficult for many parents to maintain a balanced relationship when their adult child becomes dependent on them (financially, physically, etc.)

BEST OF LUCK!

Try printing thos out and giving it to her, if she doesn't bother to read it or doesn't change her attitude then lit love is right move out the stress of having to deal with here is making things worse.

Please read my life with RSD/CRPS

These are the things that I would like you to understand about me before you judge me.

Please understand
that being sick doesn't mean I'm not still a human being
I don't feel well often times and I might not seem like great company, but I'm still
me stuck inside this body.
I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.
Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.


Please Understand
the difference between "happy" and "healthy".
When you've got the flu you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time, in fact I work hard at not being miserable.
So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.
Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.



Please understand
that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.
Imagine an athlete after a race. They couldn't repeat that feat right away either.
With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.
So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.



Please remember
that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.


Please understand
that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.
Please don't attack me when I'm ill by saying, "But you did it before!".
If you want me to do something, ask if I can and I'll tell you.
In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.



Please understand
that "getting out and doing things" does not make me feel better, and
can often make me seriously worse.
Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.



Please understand
that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.



Please understand
that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.
It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.



Please If
you want to, you can suggest a cure to me, but please don't act as if
it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.
If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.
There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.
I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

Please understand
that getting relief from an illness like this can be very slow if not imposable.
People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.



Please understand
that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.


I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.


THANK YOU!

Kevscar ---- Thank YOU so MUCH for this post
 

After reading these posts I must say that's what's so great about this forum. A great place to come to be listened to with understanding ears...

Hi again Heather :)

I just wanted to add that one thing my pain doc and OT said to me a while ago is that you have to adapt your environment to limit your pain, both current and future. This means simple things like moving a chair into a better position, or excusing yourself and moving about to avoid stiffening up etc. My OT said politeness and social expectations are just the worst things for us, because we don't want to make a fuss....so we force ourselves to suffer through a situation we know will cause problems.

She was so right. I've learnt to help myself a lot by just being realistic about what I can do, and making it clear to other folk what I can and can't do. So if people come to visit and they just sit and chat for ages, after a while I will just say "I'm sorry, but I need to move around a bit and stretch my back out. Don't feel you have to go, I can still chat!". They might raise their eyebrows the first time, but it's surprising how quickly people accept it and learn that it's just who you are now. I do the same thing in doctor's rooms, shops or other people's houses - and as long as I smile, briefly explain that I need to sit down etc because I have a nerve disease affecting my leg (my stock explanation lol), and don't make a fuss, most places and people have been lovely.

The other really important thing I was told is "who cares what other people think?! You're not hurting or insulting them, so just do what you need to do to look after your body." This has also helped a lot. I had to use a wheelchair for about 18 months, and I hated it at first, but once I stopped worrying so much about other folk's reactions, I found it so much easier (and I didn't get judged like I was dreading), and I'm sure pacing myself by using it and other things is what has got me back on my own feet again :winky:

Fear is what holds us back so much. Most people are fine with things as long as you are polite and explain briefly why you need to do something. Family might be a bit surprised, but they learn very fast!!

Hope this helps a bit. Don't suffer more than you have to - you have enough to deal with just getting from day to day :rolleyes:

Bram.

You are the first person who talks about the pain in your back. My back kills me. I live in hot tub or heating pad, I have to watch where I wear my Jeans at. I just had surgery 9-13. In your case did it get better or keep getting a worse.

so true
 

I love the way you put it..You are so right..You know we do not think about it,,but we should.We have to do what works...I remember when I had to first start using a wheelchair.I went to PC to get a few things with my hubby..I just sat there crying,because I worried what people would think,because I look healthy...I have to admit I still hate using it,but I do not cry any more.It is What It Is.....