Lack of support
 

WOW.

Ok, so I've spent a lot of time hear complaining about the pain, and the doctors, and asking about my meds. Today I have a new complaint. Well, not just today, but everyday- it's just that today I've kinda had it up to my ears with it.

Does anyone else here feel like they have no support from family, friends or loved ones? Or like they just don't understand?
Most days I feel no support or compassion for the pain I am in, or the frustration I feel. Seems that most around me are just getting tired of hearing me b$%#ing, or maybe it's that I'm reflecting based on how I might feel in their shoes- IDk-
When I try to talk about how I am feeling, physically or emotionally, I get the reactions of either someone trying to 'trump' what I feel with what they feel, or a simple 'Yeah, but, it'll be ok' blowing off. I feel guilty for expecting compassion, and guilty for even posting about it here- like I should just 'get over it'. But then I know that is not right, and that I shouldn't have to.
Everyone deserves a pity party once in a while, and this is mine!
:partytime2:

I do understand what your saying. I feel this way now and again. I'm great at pretending I'm not in pain so of course to all those around me have know idea what my pain is like. I often say that someone was to walk just a few steps in pain they would want to jump out! I'm here and do understand!!

http://i275.photobucket.com/albums/j...gs/Hugs-15.jpg

I have stopped talking about my pain unless someone notices my stide is off, more limping etc. I have also been asking the CRNA about doing some trigger point injections or my nerve blocks. He is just not comfortable with "shooting" me it seems. My spouse seems to think if I would just "do more" makes me want to screem at him. The other night he was having muscle spasams in his back and was fussing about it. Told him welcome to my world take your meds and go do something. He slept on the couch that night! He was very suportive with my intial injury (in 1998) but does not recall or care about things that make my pain worse.

Hi 72daywmn,

What kind of support or compassion are you expecting from these folks?

I think your reflection is spot-on. I've seen it with others, and I've been there myself.

How do you want them to respond? How do you think they should respond? IOW, again, what are you expecting from them?

The facts are that most normies don't know how to take us (how they should act/respond) - we scare them, and they react out of that fear.

I've been involved in pain support groups almost as long as I've been in pain. I've met people - "drama kings/queens" - who are so wrapped up in their pain that that's all they ever talk about (in-group or out), and if they can't monopolize the conversation - every conversation - and be the constant center of attention, then others "aren't being supportive." I've met others who came to meeting after meeting for over a year and never spoke about their pain once (like internet lurkers) - though a few of them never shut up anyway.... :eek: and everything in-between. That's all ok, because part of - part of - the function of support groups is to provide a place and people who do/will understand, who we can vent to when we need to.

Outside of support groups all bets are off. Normies, with as much love, compassion, and understanding as they possess, just aren't equipped to deal with us. And they know it. Sometimes we forget.

After I realized I'd driven away my nth friend, I took some time to analyze what happened. I realized that when people (normies) ask me how I am, they don't really want to know (Yes, I was dumb enough to tell them - in great detail). I don't do that anymore. I used to talk about my pain, feelings, & frustration openly, and watch those same looks. I've become more selective about what I talk about and to whom in social settings. There are some I can talk to about these things, and some that I can't, but that's not their failing; I can't expect everyone to be the same or understand. I'm careful not to bring up the subjects of pain & health, and I talk about other things instead. If others ask, I'll start cautiously and gage their reactions, and back off when I sense discomfort. I don't need to talk about it as much anymore, and when I do, I have certain people & places (like here) I've developed relationships with for that particular purpose.

The result is that I'm easier to be around and having more fun. People aren't afraid to be around me anymore. I'm getting invitations again. I can't always accept them, but folks aren't concerned that I'll be a wet blanket. If I have to leave, I excuse myself with a smile (or grimace), and they understand.

Everyone's needs and expectations are different, so my experience won't necessarily apply to anyone else, but it's working for me.

Further reading:
http://www.chronicpain.org/articles/tsocp.html
http://www.medpagetoday.com/Blogs/21266?

Doc

"My spouse seems to think if I would just "do more" makes me want to screem at him"

Pooh.....is your spouse my first physiatrist ? Or my husband ? Sounds just like their words of wisdom....lol

72,

About 6 months ago, my 16 yo son said "Yeah, it's been going on for 6 years already.....get over it"

It felt like he punched me in the chest.

That night was a big ol' pity party !

This past Tuesday morning, my 15 yo son spent a half and hour SCREAMING in my ear because he WANTED to make my pain worse (severe headache d/t occipital neuralgia) because I woke his brother up for a shower before him. After the pain finally subsided, I had a good ol' cry for myself because I raised such a monster. By that evening, he apologized and we had a long talk in the hot tub.....not about my pain and the impact that has on him, but about my sil with stage 4 breast CA with brain mets and how he feels so bad for his cousins who are younger and don't know the seriousness of her condition.

Just like we can be overly irritable because of the stress of chronic pain, our loved ones can also find inappropriate ways to vent their frustration. I get that now, when my pain is managable, but when it's soaring then I'm back to the "my kids are heartless monsters and I've failed as a mother" pity party.

I think it's normal and natural to have some days like that....when we mourn our old "healthy" lives or get angry about being ignored by doctors or feel unsupported by family and friends. When you get stuck in that rut for too long, I do think it's important to seek psyciatric help. A few moments of frustration when you are dealing with insensitive schmucks is just a vent......and that's allowed !

So....Who, in particular, was being a schmuck to you ?

I've had 26 years of this chronic pain, and believe me, we don't get support. It's just as simple as that. Our families think that we should do more because we'd "feel better." Or they think we should see "new doctors" because maybe we haven't had "enough done" yet. :rolleyes: Or maybe buying a new outfit would make us feel better. :mad:

I've heard it all. I just refuse to listen anymore. I don't get support -- All I get are most suggestions about things that I've ALREADY DONE!!! I guess I'll have to write down every procedure I've had done and put it on the fridge. Maybe they'll leave me alone. I'll have to mail it to every friend/acquaintance too. People are always sending me newspaper articles about some "miracle cure."

The only support I get is from my BRA. Hugs, Lee

I would consider those things supportive, i.e encouraging. It's not that they think we haven't done enough; it's their attempt at imparting hope.

Normies have no idea what to do or say, but I believe they try to do their best, and that's a lot better than ignoring us or figuratively stepping over us as we lie in the gutter.

What's your definition of "support"?

Doc

you're not alone
 

I too, try not to "reveal" if I'm in pain....especially at work. Even though they're nurses, most just don't get it. I've cut my hours down to weekends to lessen the stress on me. The only way someone figures it out is if I limp more or move stiffly. My kids are grown and doing their own thing so it's just my husband and I. I used to be really **** about my house cleaning but just don't let a messey house consume me. My husband of 6 years, God love him, has seen me in pain and discomfort most of our marriage. Although I feel guilty sometimes, he never nags or rags on me, and does help with the housework. I'm lucky to have him.

So, if you're not getting the support you need, come here and share with us. We'll "listen" to you. God knows we've all been there at some point.

Rhonda :hug:

My definition of support is just try to be understanding. Realize that I cannot do the things I used to do ~ and PLEASE do not offer suggestions as to treatments as I've had them ALL done. :rolleyes: if YOU have heard of them, so have I ~ I don't live under a rock. ;)

I think MOST of us just want understanding with MAYBE a little compassion thrown in ~ NOT pity. I HATE pity.

And unless you REALLY want to know how we are, don't ask. LOL You might get a long drawn-out diatribe of every painful spot on our body! lol

Have a great day. Hugs, Lee :D

That's good, even if a little imprecise. You don't think normies try to do that? Understanding us/how we feel is a little (little?) like trying to describe a sunset to the blind (and I've actually tried that). Do you explain to folks what you want/need/expect, or are they just supposed to know?

I don't ask any of these questions sarcastically. I ask them rhetorically to elicit some dialogue/introspection.

Something I've noticed is that when someone here on NT says/suggests something, it's recieved quite differently than when suggested by a normie, even if essentially the same. Have we become prejudiced/jaded?

I get that, but I also think it comes off as a little arrogant. I don't live under a rock either, and I try to stay current with my situation, but I sure don't know everything, and I don't really care where/from whom some suggestion comes from if it's something I can use or pass along. E.g., I'd never heard of that scrambler therapy before I posted about it the other day, and if it weren't for a normie who knew somebody, I'd have never known about/found my first CP support group many years ago.

Yeah, I went through that phase, and watched as friends & family deserted me like rats from a sinking ship. I learned from that, and things (relationships) are much better now - even if I'm not.

My main point is, normies may not understand and never will, but it's up to us to educate them - as best we can, and as best they can understand - in order to give us the support we need/want. I have some books on disability etiquette; they were written to educate normies how to act/interact with disabled persons without offending. Something like this one:
http://www.unitedspinal.org/pdf/DisabilityEtiquette.pdf

Yet the only thing I've seen for chronic pain is things like this:
http://www.cafepress.com/+pain_warning_posters,95421429

Maybe we need to put some compassionate thought into something better; something to educate normies about supporting us the way we need, if that's possible. [As the Japanese saying goes: Fix the problem (in this case, the "support gap") - not the blame.]

Doc

Pain is an output from the brain when it senses danger. It is like a smoke alarm it doesnt know if the toast is burning or the whole house is on fire. Also, past experiences affect pain output. It is real.
Pain comes from mechanical or chemical irritation, and an overactive nervous system.
Once tissue is healed and pathology is ruled out pain may persist for several reasons. The good news is the brain is plastic and can be retrained not to send out a pain signal. Neuroplasticity.
Neuromatrix of pain explains this well. Google those terms and see if they help your understanding of pain. This is not an easy journey but is winnable. And as much as some dont like it...movement is key. Gentle easy movements within the pain free or easily tolerable range, say 1-2/10.
Be easy with yourself. Knowledge is power and you have the power to change a lot of pain issues once pathology has been ruled out.
Peace\
Bob

Doc, I know exactly what you mean with this- and I think that's the hardest part about my condition. I have always been *the strong one* to whom everyone else has turned when they needed support or answers. Now I am finding that those same people don't have the strength to support me.
I think in general I am surrounded by a lot of these drama queen/kings who are now having trouble when I can't put all of my energy into their needs or wants.

I make it a point NOT to talk about my pain or condition or anything related to it unless I am specifically asked, and even then, I don't go into details (which YES, is why I am here, on this board, with other folks who can relate to my situation.)
But even when I am asked- which lately I hear a lot of "Why don't you open up and try to talk to me/us about what you're feeling or what's going on? We can't help if we don't know"- then these same people that ask end up saying the typical things:

"You should try...(stretching, exercise, a new doctor, etc, etc, etc.)" :(

"I knew [fill in blank] who had that, and they don't [act, hurt, cry, complain, etc] like you do" :rolleyes:

"You'd feel better if you would just [get more sleep, eat better, live healthier]" :confused:

"Oh, just take your medicine and relax, and it will all be okay" :eek:

"You need to [get your mind off it, suck it up, tough it out]" :mad:

(On this my favorite saying is 'If I have to pull up my big girl panties anymore, the elastic will break and I'll really be showing my ***!")

And then my personal favorite response to my talking about pain is when someone (a 'normie') tries to TRUMP my pain with theirs- if I say (and again, as I said, this is only after being asked!) that it feels like there's a lightning bolt shooting down my leg and I can't go to the grocery store right now, they will say something like "Yeah, my knee's been killing me too! I think I need a couple of Advil" and proceed to ignore or blow off what I just said by going into details of their knee pain, then change the subject entirely.

I've learned as everyone's said that when people ask me how I am doing, they don't really want to know, so I just smile and nod, and say something jokingly like "I could complain, but it wouldn't do me any good"

But ya know, the truth is, I'm not even really talking about people not listening, or wanting to hear about my pain and condition. My main complaints about a lack of support are:
About people who know about my condition, pain, limitations, etc, and still need to be reminded from day to day that I cannot jump up and go at a moments notice, or drop everything to do what they want to do, when they want to do it.
about people who have seen me struggling to walk from my chair to the toilet and don't seem to understand that the condition that limits my mobility at home would also make it impossible to go shopping at the mall- and that this frustrates me just as much as it does them.
about The people who work at the store who act as if I'm being lazy by riding the buggy around because I look too young or otherwise healthy to have any mobility limitations.
about the people in the store who get angry because the buggy takes up more room in an aisle than an individual standing up, and that I take longer to
make my selections because I can't move as quickly as normies.


LMAO- You get that too???? At least once or twice a week, my in-laws mention some new cream or cure they heard about, and most involve things I've already tried or are scams. (They are in their 70's are targets for scam artists trying to sell them some new anti-aging or arthritis product!)
I try to take it with a grain of salt, because at least they are trying to show they care, the best way they know how.


I couldn't have said it better myself!

Thanks to ALL who responded to this thread- it shows to me the truth- we ARE all in this together, and we can all relate to these same issues.
Without this board, and my new friends, I'd be a mess! :grouphug:

Lack of support and at end of rope
 

The pain is beyond bearable. Dr's don't listen or care. Have nobody in my life and am out of any direction as the State and fed Gov't have tied it all up in knots with laws that discriminate and nothing anyone can or will do about it. Have contacted everyone in every level of Government known. There is nobody left to contact. It will be over soon as it is unbearable and the system is broke for injured workers with chronic pain. They crush you financially and penalize you for returning to work. Nobody cares or understands. Have been robbed, left for dead and have fought back but am out of any options left.

25 hang in there, this site will give you support and more. How sad to read you were robbed and left, words fail me when I think of where humanity has gone. Living in chronic pain nearly everything is debilitating in one way or another and joy or pleasure hard to find, but please, don't let it or the system win. :hug:

Hang in there... Its hard, but hang in there...

Wow, we're all the same......
 

Out of the 3 friends I had, I'm down to one & she blows me off too. The other 2 ignored my calls and voice mails and emails! I guess they thought if they ignore her, she'll go away! No, they are the one's who went away.

The one, offered to take me grocery shopping NEXT Wednesday!!!! :shocked::Thanx:

I'll just starve until then. Did she hear herself? She knows me! Oh yea, she ignores me too some times. It's easy for them not to respond when you call, leave voice mails or emails!

Our pain is invisible to them. They can't see it so they can't feel it. :OuttaHere:

I too understand and I hope coming here,, you get what you need! :Heart:
We care about you!

Here is the difference thank You for the reply
 

The difference is soon will no longer be here as there is no other option with this never ending pain. Nobody is the judge of another and this pain must end. if I could make your situation better I would. I can no longer take the pain, abuse, denial, shunning and suffering. I pray there is mercy for my soul. There is nothing left to fight for nor the energy to do it.

My heart just breaks for you. I was in a similar position 11 yrs ago. I felt life was not worth enduring in the pain I was in and I was bluntly, a burden to everyone and felt I just made everyone sad. I had written all my letters to try and explain to my husband and family why I chose to end things...I truly believed everyone once they got over their sadness would be better off.

Obviously my plan did not work. My husband was away on a business trip and my plan was to check into a local hotel and then he would not be the one to find me. That week there were several conventions in town and not a hotel room available in a 25 mile radius. I spent hours and hrs calling around and fell asleep exhausted from trying to fulfill my "plan". I awoke the next day, so overwrought that my plan had failed that I took several tranquilizers to calm down and slept for another full day. Long story short, at doc appt the next week my doc sent me to a pain specialist who completely turned things around for me and I am glad I failed at my "plan".

Please talk to those closest to you, tell them what you are going through and ask for help. I did end up telling a good friend who also endures pain. If you don't have a friend to talk to their are help lines or pm me and we can talk.
You are in my prayers. 25 yrs in and still fighting must be beyond horrible.
You have friends here....please talk to us. private msg me anytime at all.
Diandra

Totally understand.
 

I am here if you want to talk or chat about anything. We are in the same boat. You are not alone. People do not want to hear our agony and suffering as they have enough of their own and they don't understand. Its all a me, myself and I world now unfortunately. Me well I am not one of them. If I can help I will. I am here by any means of communication you'd like as I have discovered the Precious Present.

Hi There,
Just thinking about your friend's offer to take you shopping several days later. Of course that must really be a different hurt; one they themselves can understand.

There are several places you can order over the internet (Walgreens often for me) that deliver orders free over $25.00 and my delivery arrives in only a few days. Quicker than relying on unreliable friends. Right???


Gerry

Here For Anyone
 

In 2012 I finally admitted to my GP that I was so depressed from fighting chronic pain for over 20 years, cluster headaches for 20, coronary ischaemia for 6 and multiple other physical and mental health issues that I was on the verge of ending it.
He sent me to a counsellor who helped keep me going - somewhat - until 8 May 2013. At 8am on that day I was told I had diabetes. 2 hours later I was diagnosed with rectal cancer. Devastated, I called my counsellor for support and he told me he wasn't equipped to offer that level of support. Months of trust and treatment went down the drain.
The next call I made changed everything. It was to my daughter to tell her my test results but she had the most wonderful news of her own - she was expecting, and I had a reason to fight on.
Yesterday (8th) I was taken out for the first time in months to my Granddaughter's first birthday party!
No matter how bad things get, something great may be just around the corne

Wow Dave....you are the epitome of making lemonade out of lemons! Way to look on the bright side. You are an inspiration to me. Thanks.

Pooh - I could have written this. I suffered catastrophic injuries in an MVA. I hide my pain, as much as possible. If my husband notices a wince, he tells me the pain is my fault because I don't do anything. OMG!!!! Couldn't be the spinal cord damage, twisted hips, torn to shred shoulders, etc..., It's bad enough to be in chronic pain - but to be BLAMED for it!!!!!!!!!!!!!!

I've never been a complainer or a slacker. I worked my butt off to beat my devastating prognosis and regain what function I've got. I make dinner, do stuff for our child, etc..., etc... all in horrendous pain.

My PT is always telling me I'm amazing and she doesn't know how I do it. My husband tells me I'm lazy and self-indulgent. This, from a man who treats hangnail removal like it was arm amputation, without anesthesia.

So I just shut my mouth, fake a smile and soldier on. It's lonely inside our little pain cocoons, isn't it?

Congratulations on being a grandpa.
I agree with you, the way to keep going is to look beyond our suffering. We have to find external reasons to keep up the fight. There are a lot of great things happening out there. As bunged up as I am, I know that there are people who need me.

Diandra, Hockey and Everyone
 

Thanks for your kind words, I signed on here not for sympathy, but to reach others and learn/exchange. I cannot talk to family, and have no trust in Counsellors. As stated, one abandoned me at my darkest hour and another triggered anxiety attacks I had been successfully supressing for years just to prove they were still there.
If anyone wants to bounce anything off me - even just moan - feel free.

English Dave
 

You have like so many of us here on NT the right spirit. We all try so hard to get on with our daily lives and go about our days trying so hard to lessen the burden on our loved ones. Sometimes I think we try so hard they forget what got us here in the first place, we didn't consciously choose to be this way, it is something that has happened to us and if we could, we would immediately turn back the hands of time and change whatever action it was we took at the time that eventually lead to us becoming a victim to chronic pain.

To have the wonderful news of a baby joining your family is surely a sign life can go on, I'm sure that baby will bring you many moments of pure joy. Stay strong, I can empathise with you in so many ways, I've suffered chronic pain for well over 30 years, I'm fed up with it to my eye teeth, I'm over the side looks and rolled eyes from family members who should know better. Big hug to you :hug:

Pam,
 

Are you still going to have the injection/procedure done on Wed., Dec. 17th. You have been in extra special thoughts and prayers.

Gerry

Dave,
 

It sounded like your world was collapsing; and there is always something around the corner.
FYI; I was diagnosed with rectal cancer Sept., 2012. Since I was already in the hospital; Had surgery the day after diagnosis. As often said/written "One Day at a Time"!!!!


Gerry

Yep
 

Hi Gerry, yes I'm in hospital, had the procedures done this afternoon and they decided I needed to stay overnight. I am completely numb from the groin, pelvis to the waist and my legs don't hold to the ground well, giving way unexpectedly. Fingers crossed this will be successful. Thanks for asking :hug:

Pam,
 

Praying:smileypray: all goes well and is successful in lessening your pain and "no impacting"!!! Please keep us informed.


Gerry

Feel better Pam
 

Thinking of you Pam.
Hope your procedure results are completely successful and you are able to enjoy the holidays.
Please update us when you are feeling better and have some spare time
(yeah, right!).
Nothing like being hospitalized a week before Christmas.
All my best, D.
:):):):):)

Christmas
 

Hi D, we did a quick recky and this is either the 7th or 8th consecutive time I've been in hospital a week before Xmas, sadly I have ended up back in hospital by New Year's Eve every time. So this year I'm saying NO im not going to give in to the supreme indirect bullying and pressure from family members to participate and show my face. They simply just don't get it, just because I look ok on the outside, I'm not on the inside. Oh and as an added bonus, this year I've just been diagnosed with pneumonia. There is nothing quite like trying to hold a cough because it hurts so much to cough.

I will have some good news to share next week, I can't say it now just in case, and I'm going to need all of you to put on your thinking caps and share your best advice so I can make a good well thought through decision. And yes I did something "silly" thinking it cant cause any harm and nothing will come of it!:hug::hug:

When is enough enough?
 

VA Dr is cutting me off my only medication. 27 years too many meds to list and the last and only one that has helped will be gone. I have no faith at all in Dr's anymore. They do as they please and do not listen to the patient. For all those Drs out there I only have this to say, I pray that one day not one of you has to go through what it is like to be in pain 24/7. Yes you get woke up with the pain if you sleep. 27 years now. This just may be my undoing of fighting as Dr's have the last say. What ever happened to "patient's' rights"?
There is nobody left in this world except where they are pushing me into the anti-depressant world. My mind is sound and they are doing all they can to set me back again! Been there done that and I won't go into the details of the devastation that caused in my life. Dr's are accountable to nobody! I'm more convinced than ever that we the one's who suffer just fill their bank accounts. A number is what we are nothing more nothing less. The oath says "do no harm" yet they do and there isn't nothing a person in pain can do or say especially at the VA. We are all human and when one is alone it is much more difficult to fight. You just get tired and worn out. What do you do when there is nobody to turn to? When you find somebody they betray you or say one thing an do another. We are the forgotten one's in this society. Serve this Country for this? I hope that others on here get relief, find relief and don't ever end up where I am at this point. I have been frustrated before but this is beyond frustration when one has exhausted all options and there is no where to turn. Dr's are NOT God but they think they know what is best for the sufferer. Dr's "listen" to the patient, don't pass judgement and decide what YOU think is best. Especially for a patient who has been through the gambit. :thud::thud::thud::thud::thud:For all those who are suffering have the best Holiday you can have. You are not alone.

Yikes, pneumonia after surgery....your poor immune system is taking a battering. You are smart to tell family NO, I know the temptation to do until we drop...you really have no choice between the procedure and pneumonia, you must be beyond exhausted.

Hope you are home now and able to rest. It must be warm in Aus now so hope you can sit out back and enjoy some nice weather.
Hope recuperation goes well, no obstruction issues and a peaceful, relaxed holiday.
D.