Dealing with Family????

[kathy d]

Dear Fellow RSDers,
I just thought I would post a note to ask everyone how they deal with their family when they are not accepting [or just want to ignore] me and the RSD problems that go along with it such as a wheelchair, crutches, etc. It has been over two years now and I still feel like a social outcast. They say the dumbest things [then once in a while they get it] and they really don't give me any support/help and can't understand why I just don't get up to do things [When the agony is too great]. My father passed away in March 2006 and for the five months before he passed he refused to come into my house because he could not stand to see me "lying" in bed. I have spoken with Dr. Schwartzman about this problem and he has assured me that their reaction seems to be the norm with every family. The first year and a half I cried all the time and was so hurt but as the time has gone by I think they feel if they ignore it that it will go away and they don't want to deal with it. My son has noticed it and asked me about it. He is very hurt too. I just thought we could chat a bit about handling other family members or friends that are having a problem with RSD and chronic pain. Thanks so much and I keep everyone in my prayers all the time. Before my injury, I helped everyone so much all the time and now when my son and I need them there is no one around. I feel a bit used by them. Any suggestions???
Take care,
Kathy d.

[JJones]

it must be so frustrating so very hurtful for you. I don't have any suggestions for you, but I do have a empathetic shoulder and (((Hugs))). RSD is so frustrating and scary to deal with in the first place that to have family not support you must be very difficult. Is there any chance that they would read about RSD and become educated about it?

Hi, by the way, I'm new here. Diagnosed with RSD in '99, diagnosed recently with peripheral neuropathy. and just found this forum.

All I can say it you know you are in pain, it is real and you must do what is right for yourself. Before I moved, my previous pain doctor would joke with me and say if anyone tells you the pain is all in your head, you just tell them, "yes!, it is!, that's where the brain interprets pain signals from the nerves!!" For all of us, our pain is 'in our heads' but that doesn't make it any less real. :) My thoughts are with you and I hope your days get better.

[rainbow422@aol.com]

Hi Kathy!

I sent you a story via private message that works great when handed to family and friends that seem to not get it. I hope it helps, although a bit of a read, it has helped me more than once...

Huggy's

Rain

[Sandel]

Hi Kathy I am so sory you are still having to deal with that denial from your family.. mabie it will take talk shows like montel to wake up some people.. I am so glad you have your son to help, he sounds like such a sensable sensitive young man.

So how bout lets try that again the montel thing.. We do need to get the word out and get RSD a known condition.. I will find the info on difrent ****** and post it soon. Any ideas?

Rain Hi can I bother you to send me a copy too?
Thanks so much

And welcome JJones welcome.

HUGS ALL ROUND,
Sandra

[kathy d]

Dear Rain,
Hello this is Kathy d. and I am somewhat confused [which is not too difficult for me lately]. Where did you send my private mail to?? I didn't know we had one. Do you mean my aol account. It is kdunn9951@aol.com. ANY information that I can get to help down accept my disease would be appreciated by me. Most of the time I just get so annoyed with all of them. I have sent them emails on RSD, I bought a book on RSD and living with it and I was going to have my counselor and my workers comp doctor get together with my family to help them. My one sister was the only one that called him. I think they are full of denial.

I asked my mom today why family members just think I can get up and go anywhere for a gettogether party in two weeks with no problem. I have been using a Ketamine cream for over a month and it gave me severe dizziness problems and I am still not 100 % back to where I was before I used the meds. My sister says "Oh, you will be well by then." My mom said people think I look great and then that means I MUST feel fine! I told her they were totally wrong and I am in constant pain every day and I think I look like crap. Oh well, I'm done figuring them out and move on in life and know how my life is each day. I pray alot!!!
Thanks for all your help and see if you can send it to me.
Kathy d.

[moonshine]

Hi Kathy D,
I have just returned after BrainTalk Crashed, I usually post on Spinal Disorders but peruse a few other forums.

I had to reply as I totally understand where your coming from when it comes to family being totally unsupportive. I have a Son (16 yrs) as well who is so supportive. Considering I have 4 siblings all older and a Mum who is remarried, my Dad is the only one who helps me out at all, but unfortunately being Male in his generation hes not too good on the emotional side (eg. someone to have a cry and talk to) but he does his best and I can't thank him enough for being there.

I was like you always helping out my family in anyway possible, never hesitated. I used to be the first person they would call when they had a problem or needed someone to talk too. Since talking this over with my Pain Psychiatrist i have stopped being their support person until they can at least make an effort to be there for me too. Not that i constantly complain, i actually have alot of trouble opening up, as i used to think if my family don't care why would others.

As my Mum and Sister are totally unsupportive towards me I was advised to limit my contact with them, have finally done this over the last 4 months. Its made such a difference to how i feel about myself and i am not as depressed as this was really depressing me how they could be that way.

Not saying you should do the same thing but you need to look after yourself first and don't let their ignorance and selfishness get you down as the situation might never change, and I know from experience it can really eat at you. I know its very hard to understand why some families are like this especially since if it was one of them you no doubt would help them out heaps, and that makes it even harder to understand why they're like this.
Sorry i wasn't much help but keep talking this over with your Dr as it does really help to vent it.

I have posted a couple of letters (maybe the same as RAIN sent you) that I gave to all My Family members, it did help a few to be abit more understanding, shame it didn't last long.

HUGS
Vicki

[moonshine]

LETTER TO PEOPLE WITHOUT CHRONIC PAIN:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand.
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 have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time I'd still like to hear you talk about yours, too.

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. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", concentrating, "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

„ Please understand that chronic pain is variable. It's quite possible (for many, 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 next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!¡¨ If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do.


Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine.

Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.


Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.


In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.[/COLOR][/COLOR]

[moonshine]

TIPS FOR DEALING WITH PEOPLE IN PAIN

People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down).

Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.



"I WOULD IF I COULD"

There's a lot of things I could do,
at least according to you.
Where there's a will, there's a way,
and I won't plan a strenuous day.

I appreciate the offer,
but I'm afraid I'm going to pass.
Like the gauge that reads empty,
the car starts, but soon runs out of gas.

I know it's hard to understand,
but some things are beyond me today.
At times I hardly make a move,
and just barely get through the day.

Sometimes walking across the room,
is a mental and physical strain.
I know I would enjoy myself,
but I wouldn't enjoy the pain.

You think I'm being difficult.
Believe me, that isn't true.
You can't begin to imagine,
all the things I'd like to do.

Nobody willingly gives up,
all the pleasures of the past.
We fight to hold on to them,
wishing forever they would last.

My life now has limitations,
far more than you can see.
If My "No" disappoints you,
Imagine, how it's affecting me!