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.

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

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.

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

Hey there sweet girl

I'm right there with you on the guilt trip....and it is so emotionally and physically draining. When I was laid off after 26 years in Sept 2012 I had so many plans. Plans for the house, plans for the yard, plans to do things with my 6 grandchildren and finally, plans to go back to work. But that all came to a crashing halt. Hysterectomy, rare uterine cancer, 6 rounds of chemo and then the small fiber neuropathy monster. The guilt when going through chemo wasn't too bad. On good days I could actually do things and not suffer for it later. But that doesn't work with SFN. On the few good days I have I try to do things that need to get done in the house. I CANNOT believe my house looks like this ! And yes...I have people I can ask to help but just feel too guilty to do it. My kids and grandkids are good about popping in and out and taking out the trash or cleaning up the kitchen if needed and I so appreciate that. But that is not the cleaning I need done.

For years, I'm 51, I cooked a huge dinner every Sunday and had anywhere from 10 to 15 people at my house. I'm unable to do that anymore and it just tears me up inside. It was one of my great joys to see everyone eating and having a good time. Kids running in and out.

My mom, 83, had an addition build on to our house. It's a small apartment and I am thankful she is here. She says she does not know what she would do without me but I feel the same way about her. Sometimes she takes more care of me than I do her She comes everyday during the week and washes our clothes, makes up our bed and washes whatever dishes are in the sink.

My husband works a full schedule despite back problems and large fiber neuropathy. He's very little help around the house.

And grocery shopping......I just can't do it. I've tried and used the scooters but the next few days are h ell for me. I'm home 99% of the time. I only go out to dr's appointments. Every once in a blue moon I'll feel well enough to drive. Another few days in the bed or recliner. My daughter has been great about getting my groceries.

All I want to do is be able to grocery shop once a week, clean my house and cook dinner. Those are my goals right now but seem so far away. Which is depressing.

I'm just randomly typing...not even sure if it makes any sense but at least I feel better

Take care everyone and thanks so much for being here on this site.

Debi from Georgia

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.
(Well, it sounded good when I thought of it... )

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.

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.

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