Chronic Pain and Guilt
 

Hi All,

I deal with guilt relating to my health issues and I wanted to know how you all deal with it.

I feel bad I cannot do many of the things I used to. As you all know, there is an endless minutiae of tasks that need to be accomplished daily, weekly to run a home and family and a life. I am woefully behind in all of them and feel terrible that I cannot keep up. I am also one of those people who, if I said I was going to do something, I do it....when I have to cancel, I feel especially bad.

My husband has to pick up ALOT of the slack and my elderly Mom does not get all the help and TLC she needs, despite me hiring a part-time companion. They never complain, they are very helpful and sympathetic...the guilt is all mine.

This week, my husband took 5 days off work for a little birthday vacation.
I did force myself to go out to dinner the night of his birthday, but, today, could not even manage going out to the movies. (This week has been a very bad flare for me.) All I ever do is apologize to him and everyone else and I try to make it up to them when feeling better.

Would love to hear how you all feel and deal with this issue.
Thanks so much, Diandra


P.S. I am asking the favor that, Please don't let this be a thread where 250 view it but only 3 respond. Anyone with Chronic pain will have an opinion or feeling about this and this forum works best for everyone when we are sharing , not just taking. Everyone's opinion is valuable, truly.

How to deal with Pain
 

Dear Diandra,This rocker Dan.I first off wish to thank you for the lovely welcome to the forum! I have studied medicine for over 42 years and am NOT a doctor but i do know a bit and what you asked is something i am really into!My former Wife and me were both pain Patients well before pain clinics.Susan was struck by a car on foot,and my story is half from youth as a stuntman and a severe beating by some sheriffs while handcuffed which left me crippled and walking with a cane.The part that you have to understand is that having Children as we both do,can lead down paths that are hard to "lay on a child!"They sometimes whatever reason can blame themselves and try and over compensate for our shortcomings be them ever so small.We can only do so much and trying to hide not lifting a bike or needing help with the groceries when other kids moms or Dads do not is something depending on age you have to explain and expand out words from there.Keeping in mind little ears can hear farther and better! Never ever be ashamed as to a disability or injury.And please keep in mind that the world is "there for you"if you let it be! For a example,just yesterday coming back from the Hospital and my doctors i was tiring to push a luggage cart filled with several bags of food.People(i live in a condo Resort)I let people help me open doors and holding the elevator and even asking if i wanted help putting my items away!I was good up untill them helping me put things away,so for around the 25th time i lifted a case of water above my head to put on top of the Fridge.Big 25th mistake! I knew i should have let the person do that for me,but my darn pride stopped me and i wound up in bed for an hour and had to take a bit more of my "breakthrough medication."So we all have to except or even ask for help when needed.you seem like a very nice person from what i have read and we will help others,so why do we not let others help us?PRIDE...........A foolish emotion.So if you or your husband need help,i truely belive there are people who will help you to your car at say Wal-Mart.But only once was i offered.But when i ask,people come running to help!And refraining from overdoing it will stop you from what i have known but"One Trip Dan"as my wife used to call me is only making the pain worse and later in life you need all the help you can get without more pain from early in life! i wish you and your Family all the best!Peace, RD

Hello Diandra
 

Surely I understand what you are saying and yes it is terribly frustrating.
We can't beat ourselves up. Try to be easier on yourself because you are already going thru too much. I do what I can on a given day and when the 'really' bad days roll around, then it's a 'heating pad' day for me.
Having a supportive and helpful spouse is a huge blessing.
Certain friends will just sorta 'fade away', at least that's been my experience.
It's hard for most people who don't comprehend chronic pain to understand what we really go through.
You can only do what you can do. To try to 'keep up' the house will wear you down and the stress of it will bring on more pain.
This forum is such an incredible place to be able to come to. We're all 'in this together'.
Some of the things that I've done to help cope simply require accepting that this is the way it is right now. I always hold on to the hope and prayer that it won't always be this way.
You will always have your 'true blue' peeps in your life. That's where the treasure is.
You've started a great thread and I'm sure you'll get good feedback. :hug:

As far as seeing that hundreds have read but not replied, a large number of those 'reads' are simply engine bots roaming the web. Not even human.
Other times people just simply don't know what to say, but that doesn't mean they are uncaring. Another thing I notice from time to time is that a forum just isn't very active for whatever reason, but it usually picks back up again.

I also like what Rocker Dan said about not being 'ashamed' of a disability or a weakness.

It's nice to have met you and I'll enjoy seeing you around NT! No other place I'd rather be.
Caring,
Rae
:hug:

I love all the posts so far ! Such great people :)
 

Diandra...
 

In no particular order...

1. You may disagree with this (and that's OK), but the guilt doesn't come from you; it comes from how/by whom you were raised. It's their hang-up; don't let it become yours, or your baggage.

2. If you were perfectly healthy, you'd still need help as you aged. Try to think of it like... life has moved some of that forward on some of us. :rolleyes:
(Well, it sounded good when I thought of it... :Dunno:)

3. Don't be afraid to discuss it with your support network (spouse, family, close friends, here) but stop apologizing (THAT gets tedious). However, DON'T discuss health/medical issues at every social occassion. At the very least, don't bring it up. In casual situations, "How are you," is a figurative idiom. If you're not discussing/talking about it, you have nothing to excuse/apologize for.

4. Learn to not make promises you can't keep. The friends worth keeping will understand. Be aware that this can be a slippery slope. Invitations may dwindle for a time, but will return as you learn to cope with all this.

5. I agree with The Hippie that kids have big ears, but they also have compassion and understanding well beyond their years—greater than any adult.

6. Kübler-Ross as applied to Chronic Illness—Mourning the Loss of Good Health Learn it—and learn to recognize it for what it is (and isn't).

7. chronic illness guilt

That's enough for now. ;) :D

LOL! Good luck on that one. You just never know... ;)

Doc

Hi All...as always, everyone's responses are so helpful.

...Dan, you are right on the money that pride gets in the way. Certainly pride is a huge issue for me and I need to work on that. I was also one trip person and tried to do it all, figured I was out and dressed and just pushed until I could not any longer.

...Rae, accepting how things are is also something I need to work on. I am usually good about that but after 20+ yrs, I notice each time I get knocked down, I am slower to get up. these past few weeks have been an especially bad flare and it has been hard to hold on to "this too shall pass" philosophy that I generally keeps me going. Thank you SO much for explaining the thread hits as being from roaming engine bots, I honestly had no idea.

Debi...yes, everything you said did make sense...I do hope you reach your goal of food shopping, cleaning and cooking dinner. I did hire someone to do the heavy cleaning twice a month and I do use a delivery service for food shopping..the cost to deliver is very low. It sounds like you have a very nice relationship with your Mom...you both seem to appreciate it each other. My Mom is 90 and has dementia. It is nice to have her here as I feel better keeping an eye on her but she never remembers I have health issues and needs a lot of help. Can your sweet Mom come to my house?!?!? The love between you two is really so dear. You are both blessed.

Doc....thanks for the Kubler Ross stages reminder. I feel like I keep cycling thru them. I generally am pretty accepting of my lot in life, like I said, after over 20 yrs, when I have a bad flare and pain is so much in the forefront, I uncharacteristically this week have had a loss of my strength to keep my chin up. You had suggested not apologizing...I don't know what else to do when my husband has taken over everything all week on top of his 60+ hr a week job at the age of 63. He truly is an angel and aside from doing for him when I can, apologizing is what I do, and of course I thank him. I simply have "fallen" this week...my normal strong resolve went flying around the room and petered out like a balloon that had just been blown up and let go....I am not a whiner and honestly am ****** at myself for letting go of my resolve but, hopefully this week when I get the facet joint shots for the first time I wil feel some relief from this flare.

Thanks y'all for your input....you are a great bunch here, truly you are and I am filled with gratitude for your kind and supportive feedback. XOXOXOXO Diandra

I'm 21, and engaged to the absolutely most beautiful girl. Unfortunately she suffers from multiple chronic illnesses while I only deal with chronic pain. I feel very guilty that I am sometimes unable to tend to her needs. We were both competitive swimmers at a fairly high level when we met, and since then, we've both fallen down the Ill Hill. I also competed in triathlons, with aspirations to complete the Ironman, but my back have out too soon. I also loved to golf, it's the only thing I have in common with my distant father and now the opportunities to see him have dwindled due to my pain, and I feel AWFUL. I went to watch the local Ironman race this last weekend and could barely contain my tears, as I felt like a failure for not achieving my dream, albeit I was fairly close. All my potentials went out the window, and now I struggle with school and work because I let the guilt of needing others to help me through the day get to me. Luckily, I do have my fiancée who can relate, and we have the ultimate relationship, but there are many struggles and fears I do not make public, because I know it would only increase my guilt. I do not know yet how to fully deal with it, so I appreciate everyone's posts and opinions about the subject.

Hi Diandra! I understand exactly what you mean about feeling guilty about not being able to do the same things as before your health issues. Prior to my sub-arachnoid hemorrhage and stroke, I was an EMT and was able to multi-task on many different levels. Things are extremely difficult for me now because of chronic pain in my neck, back and right knee. In addition, I suffer from neuropathy on the left side of my body secondary to the brain injury and stroke.

It takes me four hours to clean my kitchen to a satisfactory level, after which, I need at least a two hour nap and heating pad, in addition to my various pain medications. It's frustrating at times, but I still try looking at the positive. I'm here; I've been seizure free since September of last year.

I still struggle with depression and with people who don't understand that I am not the same person I was before my health issues, and will never be the same person. My neuro-psychologist tells me that a lot of people cannot understand what people with chronic pain go through because they can't see it. They look at us and say "Well you look OK to me." or "Stop using your stroke as an excuse. I'm sure your brain is healed by now."

I don't apologize to anyone for not being able to handle everything anymore. There are those who care enough about me to research and understand the ins and outs of my conditions and what my healing process will entail, and there are those that don't. I do the best I can with what I have, and that's all I can do. Please don't beat yourself up for doing the best you can. Hugs to you. Eva

hi HD, geez, 21 is so young to have to be dealing with all this yet how fortunate you have found a partner who has similar issues and understands. my husband used to say, I wish It could be me for awhile instead of you dealing with all these health issues and all I can say is, I would never wish this on anyone, especially someone I love and I am sure your fiancé feels,the same way.

Ms Eva...I certainly understand the invisibility of your health issues and the lack of compassion by some folks. It is frustrating. I do appreciate your reminder to stop beating up on myself for my limitations. I try so hard not to but my husband married a well employed, healthy woman. and now he has me...(..Lord, that sounds awful ) and he just did not sign up for all this. He is a dear and says, I didn't sign up for it either. I wil work on accepting what I can do.....Thanks, D.

Hi Diandra
 

There sure are no easy answers for chronic pain. It takes a toll on all those around you . I was lucky after many years on Morphine I was able to get off that drug and control it with something not so dangerous. I do lots of PT. I have lost friends in the course of this condition. It takes some special people to be around those of us that need some help. I know that coming here to Neuro talk, has helped me to cope. I hope it helps you too. ginnie:grouphug::hug:

Diandra,
I, like you, feel, my husband married an independent woman (he said that was what attracted him to me (we met while both of us were widowed). I really feel badly for him. He does not complain; but when I mention having really a bad day, he rarely responds. I really think he has no idea. But, that could be just my own looking for understanding.

Understanding is another issue with so many chronic pain sufferers. My husband and I meet with his never married sister for lunch about once a month. I don't go out often; but when I do, usually try to go to restaurant that service is pretty quick. His sister often makes little jabs especially about a a foot rest I have to keep my back of legs from feet hanging on floor aggravating the PN. Also use elbows on table to keep pressure off spine pain. I shouldn't let these things bother me; but unfortunately they do. I mentioned a while back about her making me feel like I am faking. Instead, I was told there was not a mean bone in his sister's body.

If we could let go of guilt and wanting others to understand we are in pain and not making up excuses, etc.; most of us would probably feel much better and less depressed. Need to really work on myself and let go of these feelings.


Gerry

Hi Gerry,
I know what you mean. My husband and siblings are very fit, all very healthy. We went on a family trip once, on a plane and I refused to carry on my bag and was the only one who checked a bag. There was grumbling we had to take an extra 5-10 minutes to get my bag...and I overheard a couple them commenting about it when they thought I was out of earshot. It is hard not to get hurt. These are people I thought loved me and they were criticizing such a stupid thing. I talked to my husband about it later and he said, because I never bring it up and never complain and look fine, people just forget my issues. And I guess he is right but I had been out of work on disability for awhile at that point and they knew it so I thought it was kinda mean.

I agree with you about trying not to let this stuff get to us. I have found I just hang out with people who "get it" and don't give me crap about it. I have a small circle of family and friends that fall into that category so that is who I spend time with. I keep reminding myself how lucky I am my husband is so understanding. Thanks for your response Gerry.
D.

Hi Diandra, I know how you feel. I am in my early 50's and have been in pain since I was 34. In the past ten yrs the pain has gotten worse. I had spinal lumar fusion, I had a SCS installed (did not help me) and I had a pain pump installed. My husband had to start cleaning, cooking, paying bills, etc. I felt so guilty, I felt like I was letting everyone down. About four months ago I decide not to discuss my pain with anyone unless they really understand what I am going through. When ask how I feel my respond is I am O.K. As for the cleaning, cooking, working outside, etc. I just do the best I can. I still have guilt and alot of pain. But I thing everyone here well help us through this and we will be able to help others along the way. One more thing, no matter how bad I feel I was keep smiling. It kind of helps me through the day. Rockport

Thanks Rockport....good advice to keep smiling. And I agree to just not talk to people who don't get the pain issues. When I think back to when I was healthy and pain free, I probably wasn't very understanding myself.

Are you by any chance from Rockport Mass?
I grew up in Massachusetts.
Diandra

This is something I struggle with a lot too. I have accepted the fact that my house will never really be that clean because I can't do housework and I don't want my husband to have to do everything. When I get stressed about things not being organized or the kitchen being too dirty to cook dinner I just remind myself that it's not all that important. If people want to judge me because my home is a mess that's their issue, not mine.

Not being able to go out I find harder to deal with. I don't want my husband to limit his life because of me so I encourage him to go out with friends even when I am in too much pain to go out. He's been very supportive about it, he knows my limitations and doesn't pressure me or make feel bad about not going out. I still get depressed about not being "normal", I don't think that will every fully go away. I manage to keep myself feeling well by staying busy with things I enjoy that don't cause me pain.

The important thing to remember: you don't have to live your life according to other people's expectations. There is nothing wrong with living your life the way you need to.

"because I never bring it up and never complain and look fine, people just forget my issues."

Yes! its a viscous circle. if you complain your a drag to be around but if you suck it up everyone thinks your okay and then don't believe you if you ever cry out again..

Yup, we're danged if we do, and danged if we don't. :Ponder:

Doc

Guilty ! Dang right you are here Doc
 

Only by choice. I used to feel guilty all the time, worrying about being a burden and how annoying life must be with me. Now, not so much, I've grown with my pain, I've matured and realised what I once used to say in many of my training sessions is oh so true, we have the power of choice over our emotions. We can choose how we feel, how we react and how we behave.

We choose to feel emotions we imagine other people are thinking. A lovely lady I met once said to me, you would worry less about what people think if only you knew how little they think.

My husband says to me all the time, don't worry about it. I know better now, he really genuinely does mean don't worry about it. There is give and take in all our relationships and I have given our relationship my all.

It would be different if it were just a one way effort, but we are both in this together for better or for worse. We made a conscious choice when we got married, not knowing what could or would be coming down the track. Do I wish it was otherwise, oh yes! But, you know what, it could be worse, it could instead be him that suffers the constant pain and I would not want that! So now when he tells me if he could, he would take my pain, I know, instead, I have taken his.:hug::hug:

Pam,
 

Thank you for putting this in prospective. I have often thought how fortunate he/I are that he is able to get around so well with very few issues. I wouldn't want it any differently.


Gerry

you are walking in my shoes
thank you
everything you speak of is how my life is
you make perfect sense to this woman
whose passion in life
a table full on Sundays
everyone enjoying some good cooking
i think this is what pains me most
not to use a knife like i could
i so live like you
for to do what we both love
just sucks the life left in me
i am unable to do it anymore
my daughter comes and cooks once a week
loves doing it
love having her
you are Not alone
love
me

Sorry is my middle name anymore
 

Used to be self sufficient, working full time and very active. Now ... well, not self sufficient, work at least three days a week four hours a day, and not so active when in pain.

I used to push through like most of us have done. But I have found that anymore when I push to make others happy, I can't be happy myself,

Pain has a hold on my body daily. I deal with the bad days as best I can, and enjoy the good days and hope that there are more of them than bad.

I used to say that someone else always has it worse than I and remind myself not to complain. BUT lately I can't help to say I am sorry to others.

My husband hates it when I say Im sorry. He says what are you sorry for? I say for being in pain and feeling like a broken record, same ole same old day after day.

I hope you can find the relief you need from your pain. I haven't found mine just yet. Neurontin and ultram by day and muscle relaxers by night just don't seem enough. Exercise when I can and take naps during the day helps.:hug:

Never thought that hiding pain was so much work. So let others know you are in pain, they might be able to take the load off you for a while. Get the relief you need and keep on keeping on.:hug:

Hey there sweet Lady :)
 

Good Morning Strhuntrss :)
 

My husband hates it when I say I'm sorry


And I say I hurt and my husband says he's 'sorry' that I hurt....Bless him.

And you are sooooo right.....hiding pain is a load of work and wears me out. But since I'm home 99% of the time I don't hide it anymore.....it is what it is and we all (my family) just has to deal with it the best they can.

And the Neurotin/gabapentin......I was off it about 6 to 9 weeks and I found out real quick it was helping me.....didn't now before because I'd never gone off it. I've just gotten back up to 1800 mg (my personal max dosage) and I think it's finally working again. Really doesn't do much for the pain but really helps me think straight which does help me manage the pain better...that and vicodin every 3 hours.

And I, like you, am in pain 24/7.....some good days and some bad. Mostly bad. This came on suddenly after chemo ended in March last year....I can even remember the day I went to my PCP...May 12th....and she said....neuropathy and it's going to get worse....boy did she hit the nail on the head.

We all struggle everyday to do the best we can don't we ?

Thanks

Debi from Georgia

WOW :eek: I think you're the first person I've ever heard say that! (the thinking straight part) Usually (self included), I read/see something about gabapentin/brain/memory fog and/or memory loss. The stuff affected my ability to think/focus/reason/recall so badly I couldn't function effectively or tolerably. I still have after-effects from it (and others) years later.

If only, if only... :Sigh:

[Please don't read anything into this; I'm happy for anyone who can find relief from pain or its effects.]

Doc

You do the same
Yes blessed we are to have
our daughters do so well
doing a wonderful job keeping her
husband
And then again he has been around
when we had a beautiful home
he was fifteen coming around the house
This momma was always known in the neighborhood
Feeding then hot dogs hamburgers and an ice pop
But what is mostly missed are the big HUGE Sunday meals
I TRULEY miss the feeling of a good knife in my hand
miss cutting a whole chicken in no time
Here is something I had to master in my sick fathers mind
I had to peel a potato so thin you could see through it
As for onions I cried a lot lol
Jeez was he a crazy man
There was hell to pay if not done so
Why did I share this
Every time I peel a potato
I think of him and proceeded to peel
"And did it my way"
Lol
Keeping the faith
Be well and to your loved ones
Me

Hey there Dr :)