How your pain effects friends and family - coping for them.
 

My elder daughter and I are so alike that we always fall out .. she's the one who will irritate me and I will grumble at.

It must be extra hard for family and friends when they are with someone who is in real bad pain all the time .. and taking drugs that alter your personality and you can get withdrawal sympstoms from even after 2 hours after missing a dose ..

How do your family and friends cope with you when you're at you're snappiest .. or when you're crying for absolutely nothing? What can they do?

They don't know that this is "normal" for sufferers of chronic pain and I really think there should be support for them.

There may even be one on this forum somewhere, but as this is the only place I come to, perhaps if there is, someone can direct my post there.

Thank you xxx

Dearest saffy
 

:grouphug:
This is the perfect place to post this very heartfelt question..,! Thank you!
I am typing this on an IPAD for the very first time, so forgive me if my typing seems a bit sketchy ;).
I am in the labor room watching my precious daughter SLEEP thru her contractions :cool:Because she just got an epidermal block,!! This is SO AMAZING!!

I am feeling so high on life right now because my grandson will be here within the next few hours!! I have so much Id like to say....but don't know where to start.....plus I am very awkward on this amazing little IPad thing. :o

I better push the post button on this to see if I did this right and I don't think I clicked on the remember me button, so I'm afraid this will time out on me before I get it to send.....

HI Saffy, I think you brought up a very good point and I agree that it is hard on family and friends when you are sick and in pain all the time. My husband is pretty good for the most part and he is very supportive and even helps me out at home and with all my doctor appointments, he even had to learn about all my medical care including my cath treatments that I need. Sometimes we do get into it because he does not truly understand why my emotions are so crazy. At those times I lean on my mom and she always understands because she has many of the same conditions I have and has been in chronic pain too. She is really good at being supportive and encouraging and she makes me see things in a different perspective. However, I also have a therapist and she is really great and I think she has helped me learn how to deal with many of my health problems that won't ever go away. I tend to get very depressed and she is a big help too. My friends have stopped coming around and I never see anyone anymore so really the only interaction I get from them is on facebook. It is hard though for people not in pain to understand and it used to make me sad about all the friends I have lost but now I realize they were not that good of friends to begin with ;) I consider myself very lucky though because I do have supportive people in my life and I used to not have any support at all and went through it all by myself :( Hope that answers your questions! Take care and have a good day! :hug:'sTara.

Well howdy doody wallawalla bing bang !!!
 

It worked!! Oh boy am I hooked on this. :D

One of the neatest things about NT is that there are so many different places To share a discussion such as this. There is a Support for Caregivers somewhere in the main menu....that would be a fine example of a place to talk about this....but to be honest I am glad you started this thread right here. When I get home from hospital I will love to get back on here and share some. Thoughts....
Meanwhile Im sure others will be happy to jump aboard your thread.

I hope everyone here is doing good.....low pain levels.....
Higgs all around from a VERY EXCITED NANA RAE!!!!! Loops I sAid HIGGS all around but I don't know how to backspace to correct. :p but Im sure you know I meant H U G G S :rolleyes:

......I just love this place, cuz somehow you all put up with me. :grouphug:

RAEEEEEEEEEEEEEEE Im so excited for you all!!!
 

I hope by the time you get to read this on our 'IPAD' that you will at last be a nana!!:hug::hug: Do let us know ASAP!!!!! well when you have back down to earth that is;)


Saffy Ive had some very bad days indeed but I will say that my family have been great. My husband, bless him, is probably at the end of his tether with me, but he never gets annoyed with me at all. We actually at times have a joke when I complain about my back etc, he would say, 'oh I know how you feel, my ears are killing me too boom boom' But overall he is very good and caring. My daughters are excellent too, my eldest one in particular. She is always here with me looking after me, especially before I had the stim and she had the baby.
People are generally very good. I try not to complain too much if I can but overall they have been very good...........

I'm just on way way to drugged up
Sleep time. The only time I can sleep at the mo so I will wish you all a good night and thank you for your involvement inthis thread. I awIt the baby news xxxx

I have a daffy little I pod touch which fits in my purse perfectly but takes some time to type on.

Joy JOY It's a BOY!!
 

http://dl10.glitter-graphics.net/pub...ar500lxyn4.gif I'm in Heaven!!

My Grandson was born yesterday 4:51 pm (CST) !! :Heart::Head-Spin::Heart:
7 lbs 6 oz ...... 21 inches bundle of JOY!!!
....... Jackie, you were RIGHT!! There's nothing that compares to this level of Joy!! My head is in the clouds!
What a miracle to see my Grandson being born!!

Thank you my dear friends for your prayers and well-wishes :grouphug:

I hope Jenna's headache has subsided! I've been praying for you!! :hug:

Saffy, I'm so glad you started this thread regarding family and friends and how we cope.....
The number ONE thing I learned from being my daughter's 'birthing coach'.....is the simple nugget of truth that says....."MATCH HER MOOD" !!
If our families and friends could only understand that we live with our circumstances every day......all we REALLY 'need' is ..... understanding.
We will have good days and bad days.....
Sometimes saying 'nothing' says it all. Just a loving hug. Understanding.

This is 'Thanksgiving' Season......
I am so very THANKFUL ...... :grouphug::grouphug::grouphug:
God Bless!
Rae

Hi Rae
so happy to hear your grandson has arrived safe and well!!
jenna:grouphug:

Congratulations nana Rae
 

Rae how wonderful your little grandson has finally arrived. I hope your daughter is doing well too. And hey don't you forget to rest up too. Because nana duties are tiring too. ;). But enjoy enjoy enjoy I'm so exited for you all

Give all our love :hug:

Take care

Jackie :hug:

Congratulations!!!
 

Yay Rae!!! I am so happy for you:circlelove::You-Rock::yahoo::yahoo:! Enjoy spending time with your new grand son :) Babies are definitely little blessings and this is so exciting! Take care and have a great Thanksgiving :)

How wonderful ... a grandson .. Aww . am so happy for you! xxxxx

Happy Thanksgiving 2010
 

From me over here in the UK, I send Happy Holidays to all my dear American friends celebrating today xx :grouphug:

Saffy.....
 

I've been wanting to comment on this post, Saffy.....and now that I've collected myself off of cloud 9 from all the excitement of the new arrival....I can think more clearly..... :o

My daughter and I used to 'go at it' also......I think our female hormones clashing played a part in that though. Now she is 23 and a brand new mother. I've been very supportive during her pregnancy and a couple of times she came over and was having a bad 'pregnant day'.....She would cry, saying "Mom, I don't know what's wrong with me, I just keep CRYING...."
I would say "That's ok hun, let's sit down and we can cry TOGETHER"....:o and so we did......for no particular reason.

I truly believe that communication is 'KEY'.
Call a 'family meeting' together and sit down as a family and read to them a medical explanation of what you are dealing with.
Explain to them that some days are better than others and that the medications contribute to mood swings which are hard to control at times.

Sometimes I just want to be 'left alone'.
Sometimes I get 'snappy' as well. Let a 'cool down' period go by and after awhile, go to whomever you snapped at and apologize and explain to them how frustrating it is to deal with these gammets of emotions.
Describe the pain.
Educate them. Let them know that the medications take a toll on us and if we miss a dose or run out of the medication, our bodies suffer withdrawal....and explain to them what this feels like.

And if there come times or circumstances when things just seem to be getting 'out of control'......maybe go to a counselor together.

Families need to stick together. Especially now, as the holidays approach.
Pull together.....Pray together.....
....and it's 'ok' to cry together. Some of the most meaningful moments are shared with tears.

That's my 2 1/2 cents..... :o

And Saffy, you have a WONDERFUL family.......I've read your chronicled blog.
Thank you for sharing it with us....

Rae
:hug:

My husband is at the end of his rope with his family. For me, dealing with him being in pain all the time has become normal almost, but I still cry with him at night, I cry in the shower when he cant see me and when Im alone. I feel so incredibly helpless sometimes although I do all the footwork, research, deal with the lawyers and work comp for him so he doesnt have the added stress. I wish there was something I could do for him. He hasnt walked in 3 years. So no more walks and holding hands together. We used to be quite active and all that came to a screeching halt.

Now, I understand fully what RSD and CRPS is. But his family, who I have tried to explain it to several times, including giving them info to read and websites to go over, still have the idea that he should simply put down his crutches and walk. "Just walk on it anyway, get used to the pain" something that everyone has said to him. "I know so and so and they have the same thing you do and they still work so you should be able to just bare through the pain and do things too". IGNORANCE *sigh* and omg, it hurts him so much that his family just doesnt seem to want to understand what hes going through.

Im looking for a support group in mid michigan if anyone knows of one. Also, does anyone know where I can get GOOD material on rsd? For the life of me I cant find anything more than a one sheet pamplet.

Welcome MarriedtoRSD !
 

Thank you for sharing!
I am so very sorry for this battle you and your husband are faced with. RSD is a horrible thing.....something that so many do not understand what it's like.
I call it the 'Silent Disease'....because no one can 'SEE' the pain. It can be such a lonesome feeling knowing that others simply do not comprehend.

It's so good of you to stick by your husband the way you do....and to be looking for support.

I see you've found the RSD Forum here at NT......The folks there are wonderful and I know you'll be embraced with much compassion, as everyone here understands what it's like to suffer with this.

Thank you for sharing from the perspective of the spouse's viewpoint. I'm sorry that his family does not comprehend what you are going through. I hope you have a good doctor there in Michigan. My mother lives there!
I know of several here who are from the Great Lakes area.

It's good to have you!
You'll find many caring folks here!

Rae
:hug:

Family Impact
 

Yes it is felt by all who live around the sufferer. The impact arises in different ways. With our daughter, it surfaced as anger with God, not understanding why I had to have been hurt so badly and the pain had to linger for so long...... So sad to see it separate her for a time from God, and yet, now there seems to be a reconciliation going on there.

It is hard for the family to see a member in constant pain, hear the crying out, see the gnashing teeth, the gritted responses to questions, knowing they are not in anger, just an attempt to manage the pain. So, yes, as Rae has well and lovingly pointed out the forum for families of sufferers is a good place to connect.

Oh, and Rae Woo Hoo and Hooray on becoming Nana!! To a healthy bouncing boy!! What a Thanksgiving!!

Mark56:hug:

Thank you Mark!
 

Thank you for that!! :hug:
It is SO GOOD to have you back! You have NO idea!
I was bewildered when I logged on and saw that you had been posting!
THAT, my dear precious Bro, is all the more reason to be THANKFUL during this season!!

A very Elated!
Rae
:hug:

baby joy
 

I just couldn't help but share in your excitement over your grandson. I am very happy for your family. Enjoy each wonderful moment you have. It is indeed a gift.:yahoo:ginnie

hi
 

I would like to say that I have a truly remarkable husband. I do however snap at him at times when I am feeling really bad. But he is wonderful to me, he understands, he has seen me at my worst, best, and in between. I have found my true soulmate. :hug:

I try very hard to actually remind myself that this will pass, that what I am feeling is temporary and to keep my mouth shut and go and meditate. I have only learned some meditation about nine months ago so I have a ways to go but what I have learned has been very effective for me. It was not by design that I used it for my back pain/nerve pain. I started off trying it out for my severe migraines, and one day I thought, hey why not! :winky:

What is even harder for me is extended family, I have a sister that does not understand on probably any level about what I go through and though she may not mean it the way it sounds she says things like "aren't you too young for all this", or "do you really think its wise to take those pain pills".
Then there is my mom, now I love my mother dearly. She calls me every single day, whether or not we really have anything to chat about or not, but its okay, its nice to hear from her and I am thankful I have my mom to talk to. However, she asks me everyday "are you in pain"? Again, she does not mean to hurt me or upset in anyway shape or form, this is my issue not hers. It just somedays it really rubs me the wrong way but I pull back and do not ever get snarky with her, I just answer her and move on. But its hard, I am in pain everyday and I tell her that. So why would such a simple question tick me off sometimes? I have no answer for that one.

Thanks again for letting me vent and chat, its nice to have found a place to be able to post with others who "get" what you are feeling.

L.

Tinkster
 

Praying that with the perm implant, this too, shall pass and all will be well with you. Your family and friends will see a new you, a revived you, a return of the one whom they knew before pain if all goes as it has for me.:hug::hug:

Mark56:hug:

Oh Tinkster, you've said it so WELL!
 

:hug:I know EXACTLY what you are describing! I think alot of this frustration we face is because of the fact that somehow 'THIS' has become our 'Identity'....
and I for one do NOT recall signing up for this @#$%^&!! :eek
I had much higher ambitions in life......
I tend to default to going off to be by myself.....I guess so my significant others won't have to see me with that 'look' on my face. That 'look' that spells out 'PAIN'! I have become so much more NON-sociable than I used to be......it actually gets to a point that it 'erks' me if a friend pops by my house unannounced saying 'HEY! Let's go do lunch or something!'......
One would think this would be a wonderful thing....but NO, not to ME. They just don't understand that I simply can NOT jump up at a moments notice and bounce happily out the door. And more times than not, I am NOT up for chatting on the phone either.

The flip side of this is......I really believe that we must hang on to SOME form of Hope....we must believe within our hearts that things WILL improve eventually..... Or at the very least, we can learn how to make the most out of the 'good' days when they roll around.

I like to start my days with 2 cups of coffee while I watch my favorite commedian's monologue in which I have recorded on my DVR from the night before. That gives me a good enough dose of 'humor' to get the day going.

Thank you for that input Tinkster.....it is so 'spot on' with how I feel many times.

:hug: Rae :hug:

Isnt it amazing how we can all relate to one another when it comes to our moods and how we cope with our family and friends.

I too hate being labelled 'my sister, you know the one with the back problem,' or 'my friend, you know the lady with the back problem':mad: its really annoys me!!!! Because before this 'back problem' I was known as JACKIE...AND IM STILL JACKIE>.........

My family do tend to treat me a bit with kid gloves......they know that Im in pain and they know my limitations. But Ive now gotten to the point that IM sick of talking about my pain with them. They just dont understand. Its not the same as coming on here and sharing how we feel and what mood we are in etc.

So Tinkster you have certainly come to the right place and you have certainly hit the nail on the head. Its like reading my own story as well as Rae!!!! we all have so much in common when it comes to this dreaded chronic pain syndrome!!!!!!:grouphug:

I REALLY appreciate this discussion!
 

We all speak in unison on how we feel! :hug:

Sometimes I get 'peeved' thinking about how, considering my closest friends have been in my life for about 30 years and my family even longer than THAT....if they TRULY wanted to 'understand' what we are dealing with, WHY don't they get on Google and read up on what this is that we battle.....
In my case, I've repeatedly said, "I HAVE PERIPHERAL NEUROPATHY IN BOTH LEGS"........ok, I'm pretty sure that if the tables were turned and a friend of mine was down and out and provided ME with a point blank diagnosis such as this, I would take it upon myself to READ UP on this and TRY to understand EXACTLY what my 'loved one' is dealing with!

Nobody does this!! Instead, I get 'blank stares' when I expound upon this subject. This is part of the reason I choose to 'bow out' of the social scene if it means having to talk about "ME and my PROBLEM" constantly!

Right?? :Soapbox:

My god Rae you have took the words right out of my mouth!! today on the phone i got a call from my sis in law wanting info about something for 'her' when she had the info she said how are you? i replied busy getting everything sorted before surgery this week.. did she ask me why i was having surgery? 'hell no!'! :p . i think the same as rae why cant people google what you say you have if they have any heart or even cared about you to start with!! my father was quite worried about me having this scs surgery which i only found out a few days before my trial but yes he used his brain and googled RSD and scs and spoke to a few people about it and after spending the day after the trial with me he has become one of my strongest supports and cant wait for me to get my scs!!
I can understand why Rae you opt out of social occasions i have been doing this a lot lately and will continue as could not be bothered to explainor feel i have to explain away my pain. when i had the cast on my leg this summer people could see the cast and understand there is something wrong but when its pain no one understands they just think you should be over it at this stage and have no time for u.
The above is why this forum is becoming more important each day to me as everyone here understands where each person is coming from! big hugs to you all :grouphug:

Oh, Mark, how is your back?
 

The question I get time and again. Sure, the back was among the original car wreck injuries, my head, my arms, 28 surgeries later, I am doing better, but it is the PN in both legs which is the bummer, nerve pain, numbness, and "how's your back" Aw heck, I just tell them "doing better"........ legs still messed up...... stim works...... what a blessing......

Yeah,
Mark56:grouphug:

:DThank you for that, Rae. Sometimes you just really need to hear that you are not alone out there. Not that you would wish this on anyone my gosh no! I dont recall being on any forums since my back surgery in 2007 and I have realized how much I miss the support and understanding that comes from others that are on a journey much like your own.

I remember that this year has been particually difficult for me. I do have a terrific pm doctor. However, he was trying epidural steriod injections for both my back and my leg and I just was not getting any relief. My mother has been fighting kidney cancer for four years now, she had two strokes and had to temporarily be placed in nursing home. But prior to the nursing home she was very very ill and we were in fear that God would call her home. Now I may joke about her and her phone calls but she is truly my dear and best friend. Praise God she rallied again and came through, she is home now and doing pretty good. Then around May of this year we had to put my basset hound to sleep, he was ten years old and I had him since he was an eight week old puppy. Things just seemed to continue to crop out, the car broke down, I was in some of the worst pain I had ever been in, I got a diagnosis of FIbromaligia in the summer. One day I had just had it I was soo very upset and I cried out saying there was NO GOD, none, it was a lie, and big fat farce and if by some miracle there really was a God he hated me and was screwing with my life for sport. I promptly went to bed and had a good cry. :(
Suffice to say after that outburst I was better, things looked brighter the next day as they often do, you remember your blessings, the good things in your life and go from there. i had a long talk with God too. :Sorry:

For whatever reason this is the life I have, pain and all. Maybe its to make me the person I am, doesnt mean I won't go for the SCS and try to make it much better :D but maybe those of us that live in chronic daily pain are the ones that are very special people indeed. :)

Thanks again for such a warm welcome from some really nice people.

Tinkster, I know just how you feel, and everyone else on here a well! I have RSD/CRPS. Had a SCS implanted in Feb, it failed, revision surgery in June, it seems to be failing as well. My mother in law (on our drive home from the doc) turned to me and said, "I just thought you would get this stiumlator and that would be it, RSD would be out of our lives. I guess its not that easy huh?" REALLY?!?!?!?!?!?!
As everyone has said it would be so nice if people would take the time to understand our illness before trying to discuss them. Just hurts sometimes.

@Saffy
 

There is actually a medical study that found that for chronic pain patients, the worst people to be around was family & close friends, the more time-the worse arguements.
For example, I got pain at 16 and had to scream at fam, who denied andminimized my pain..

During my withdrawal from Oxycodone .. and believe me, it was HELL .. I threw my eldest daughter out. It was the hardest decision I've ever had to make, and made me really ill with panic attacks and anxiety. All I had needed was peace in the house and she had once again taken something from our younger daughter's room and I just snapped. At 23 she should have known better.

In saying this .. it's the best thing I did as she is living with her boyfriend and they are really happy together ...