Chronic pain undermines Marriage
 

I need recommendations for counseling services for my husband and myself. I have been dealing with chronic pain(peripheral nueropathy) for nearly 3 years now and my marriage is severelly damaged. I would really appreciate any feedback on workshops or therapists in the Northern California/Bay area regions of California. We have done some therapy through our childrens therapist(adoption therapy), but it is not working out. We are a whisper away from divorce and I don't want to go there.... I would really like someone who understands chronic pain and its impact on a relationship/family.

Any feedback would be appreciated

I'm wondering if better advice/suggestions might be proffered in the chronic pain, peripheral neuropathy, or caregiver support (if that applies) forums.

Google: "chronic pain" marriage counseling california workshops

Best wishes,

Dr. Smith gave you some good advice. I'm also wondering if perhaps you AND your husband could speak with your doctor -- are you seeing a pain management doctor?

Maybe if your husband understood chronic pain better, it would help. It's more than just "hurting all the time." If affects all areas of our life -- and your husband obviously doesn't understand that. Maybe if you took him with you to a doctors' appointment, the doc could explain it better.

Best of luck -- I'm sorry you're having to go thru this along with suffering chronic pain. God bless. Hugs, Lee

Thank you Dr. Smith and Leesa.

Dr. Smith - Is there a way to move this thread over to another forum?
I haven't yet googled the combo you recommended and hopfully it will show me a workshop. I have found therapists that work with chronic pain and couplse counsling, bu tso far none of them takes insurance, nor have I found a workshop/clinic/retreat intense type therapy session that our therapist has reccommended.

Leesa, thank you for your advice. My husband does go to many of my appointments, but he just blocks them all out now. He blocks out my pain, and focuses on my behavor instead. Its sad - we've both done that to each other. We really need to find a work together and not let tension,stress and my pain and disability get in the way.

Just copy (Ctrl-c) exactly what's in bold letters and paste (Ctrl-v) directly into a google search window. ;)

I sort of understand that, and I don't. When I was very young and foolish, I accidentally stepped on my (then) fiancees glasses and broke them. Having perfect eyesight (at the time) I was insensitive how important they were to her - not realizing how blind she was without them, and putting a low priority on getting them fixed. The next time I came home from work she was in tears because she couldn't see to do anything. To try to understand (and perhaps as some kind of penance) I went blindfolded for a day, and it (pardon the ironic humor) opened my eyes. :yikes:

It's a lesson neither of us have ever forgotten. Now in later life, we're both extremely sensitive to each others' pain & suffering, accompany each other to doctors (and take notes/ask questions) and act as mutual caregivers.

I don't know if it would help for him to monitor/join some caregiver support groups, or talk to some spouses in similar situations. I can imagine some things that may be going through his mind, and IMO, he needs to be set straight.

My best wishes for you both,

Doc

Something that helped my relationship was to completely stop talking about the P/N. My mother had it along with F/M and Parkinsons and I dreaded having to see her to the point I was totally stressed out before I even got there and I did love my mum however there is only so much I could listen to.

My partner started to get the same glazed over look that I used to get when she was with me. There was resentment on my behalf because she didnt understand but how could she? she isnt me and DR SMITH gave a good analogy with the glasses. In Pain and not being understood = frustration = anger :(

I no longer ever ever mention it but she can see me wince at a 9 or 10 shock and can see me limp etc. When it gets really bad I go to bed but Never talk about P/N , whats the point?

Good luck , really hoping you can work through this.

Zorro brings up an excellent point from the other side of things. We all go through a learning curve with any kind of chronic pain, and one thing we learn is that talking about it, even though it preoccupies us as the painees, turns normies off. I lost a lot of friends and social invitations until it dawned on me that when people ask, "How are you?" it's just an expression - they don't usually really want to know (some exceptions of course).

I made a vow that pain/medical stuff is only to be talked about with people who do understand, and even then only in a support capacity/setting (like HERE). When I stopped talking about it, I thought about it less, and friends started coming back.... s-l-o-w-l-y.

Spouses should be among those we can open up to/with, but even so, there should be limits, or it can drive a wedge. My wife tends to worry about me so much she asks if I'm alright, or how I'm doing, several times a day, and that can drive me nuts. Communication is paramount in any relationship; she's learned to back off a bit (bit of a control freak) and I've learned to answer the unasked question much as Zorro has - with a look/expression.

We also make it a point to have many evenings/days when certain stressful topics are just taboo - let 'em go for a few hours and enjoy the things we always have together - watch a movie, play a game, dinner with friends.... There's still conversation - just normal conversation.

Doc

When people ask me, I just say that I am fine and go on right away and ask them how they are. That way it gets the conversation away from me. Sometimes I think it's just a knee jerk reaction to asking how I am. Or if they ask anyone else for that matter.

I'm lucky though as my better half understands as he also has pain. For most people it's just a part of getting older. :(

:D That is so true!
Could you imagine If chronic pain people told the truth?

How are you?

Oh you know , feeling a bit more suicidal than usual this morning , ended up bawling all night due to being burnt alive from the inside out on a pain level of 12/10 and Im maxed out on anti seizure meds and pain killers plus anti depressants all at once mind you so not sure if Im hallucinating or this conversation is real, anyway Im about to call an ambulance to get to an ER.

So how are you?

Could you imagine actually saying that to anyone. I would like to see the look on that persons face.
My friends actually make fun of me because whenever they ask I say I am fine. There are a select few I will tell the truth but I don't even do that often.

I think people actually do care. They just can't do anything for us so they feel helpless.
My kids don't always ask even when they know I am not doing well. I was insulted by that but I had a talk with my daughter and she told me it scares her. She feels helpless, and I found out that she is afraid this might cripple me or worse yet take my life. I explained to her that is not going to happen. I also found out that my girls are afraid of this being genetic. The point is I would have never have known what she was thnking if I hadn't asked. Sometimes I think I know what someone is thinking and find out it is the complete opposite.
Blaine I hope you find a good therapist that can help both you and your husband let each other know how you're feeling. It must be so hard for you to have this added to your pain. Good Luck, hopeful

Didn't I say I did make that hideous faux pas/gaffe? Well, y'know... noobs. :o Live & learn - sometimes the hard way.

We've got a couple of close friends who really do want to know, even when I don't want to remind myself by bringing it up! :Doh:

My wife keeps urging me to write a book(let?) of nuggets of wisdom for painees & their loved ones. But who'd actually want to read something like that? When it was new to me, all I wanted to read was how to make it all go away! Had to go through a few stages of grief before being receptive to much, and by the time I was.... Besides, there are already a ton of blogs out there by painees that say pretty much the same kinds of things. :Sigh: :Dunno:

Doc

Don't have to imagine - BT-DT. In a couple of cases, it was the last I saw of those faces for quite a while. Looking back, and having been on both sides of that fence, I don't blame them at all (and I shoulda taken pictures :D ). There was a person in a live support group I was in for a while that we tried to strike up a friendship with, but they couldn't turn it off... ever, and that made any kind of socializing very difficult. We discussed it a few times, but it never stuck, and eventually we grew apart again. I'm always available for support, but I've found that for me, I've got to maintain some separation too.

Absolutely people actually do care, and it's not just "people" who feel helpless that they can't do anything for us; we scare the bejeebers out of our own doctors too. (And remember what I said about blogs in my above response?)
http://www.medpagetoday.com/Blogs/21266?

That's one of the things I really appreciate about my therapy dog. He's the one member of my support network who seems to know he can do something (lick the tears [and skin] off my face), and is there to do it, any time, day or night. He's also good feedback, because when I'm so bad off I cry out, he gets scared (thinks he hurt me) and runs for his crate.

Doc

"Absolutely people actually do care, and it's not just "people" who feel helpless that they can't do anything for us; we scare the bejeebers out of our own doctors too. (And remember what I said about blogs in my above response?)
http://www.medpagetoday.com/Blogs/21266?"

Well that blog put everything into perspective for me, brilliant everyone should take a few minutes to read it

That blog is awesome. I have a PCP and a neurologist who seem to understand their limitations. My PCP actually admits it outloud. He said 2 weeks ago that as far as they have come in 2011 understanding autoimmune disease they are still stupid when it comes to these diseases. He's awesome. I have jumped around quite a bit with neurologist and keep coming back to my original. I thought the bigger hospitals etc had to have someone more knowledge than a neuro from the suburbs. He even says try one of the bigger hospitals I'm just a small suburban doctor. Everything I learned everywhere else was the same things he said and tested for. I am staying with him now. I wish they were all like this. I had to make a decision that I have to trust someone.
Hopeful

I've had similar experiences, and I was aware of what Dr. Rob says in his blog before I came across it, but it was the first & only time I'd seen a doctor put it in writing, so naturally it's been a keeper. My former PCP just dumped me unceremoniously with a form letter that said, to the effect, "Our relationship is no longer therapeutic. You have 30 days to find another doctor." I think it may have been code for what the blog was saying; the guy was frustrated/uncomfortable, and I was learning more about my condition & treatment than he knew (not that it mattered to me). He wouldn't even take my calls for discussion/explanation. My wife & I did some fast but serious homework to find a new PCP, starting with a list of doctors provided by our insurance carrier, and using tips we found online. We found our current PCP, who has 20 yrs experience in pain management, but decided he needed a change for some of the reasons stated in the blog. He only had a slot for one new patient, but we talked him into taking us both as a package deal. :p He's been incredible. Candid, communicative, open-minded... almost more of a friend, though he maintains professional limits as he should. He's the foundation for the conventional medical portion of our support team, and we bounce a lot of ideas off of each other. He not only listens to my input, he takes notes! :eek: We've exchanged many articles via mail over the years (he seems to prefer snail mail & phone calls over email) and we do a lot by phone to save on office visits. Specialists have been added to the roster as we find those who make a good fit with the rest of the team. The only one I'm not exactly thrilled with is my neuro; he cut me loose because he pronounced me "idiopathic" and couldn't/wouldn't do anything for me (and as the blog says, "move on to a patient who [he] can fix, save, or impress"), but I keep emailing him when I find/do something that works. I'll probably replace him when I find a good one.

Once more, attached is a schematic of my support network (team).
© 2007 Used with Permission

good thread.....
 

I need to take this thread and turn it into a tiny IV that will flow continuously into my blood and into my heart; I need the reassurance that this page provides - I am not alone, we are kindred. Even when some of you write of pain and disappointment I feel better, because I feel the extension of myself in those words. I don't feel quite so lonely and isolated. What all of you have written has made me feel better, and I am going to keep writing here.

I have not been very successful in finding a therpist however. The ones I have found are too expensive - but they are ideal. It is monstrously devastating. I am hoping that by becoming a part of this network of supporters I will feel better and it will reflect on my dynamics of the relationship with my husband (and others as well), but how does he get help and we get help together? We live in a VERY isolated area, I can't drive due to my Ganglioneuritis, and we have no monetary resources and all the therapists I have found that have experience with chronic pain - do not take insurance..............:Sob:

so can I spew here

I was struck down by my chronic pain at the height of my life; I was a go getter, do it now, gett'r'done gal. I worked at my children’s schools: preschool and elementary. Volunteering for every committee, in all their classes, volunteering for two horse riding clubs we belonged to(president of one), participating with a civic group my husband and I had pushed to startup. When someone needed something done they came to me, if there was a new committee to start up they called me, and if there was an open position they called me because I would be there! I was active, energetic, organized, involved, independent, helpful and got things done - happily. I was on the demanding side, probably controlling and pushy at times - but it was what I did and I did it good.

That is what is hardest for people to adjust to - they (nor myself) can't adjust to who I have become versus who I was. They honestly want to know how I am doing - because they can't reconcile the new (sedentary, dependant, helpless, angry, inactive) me with the old. So many people saw how I changed, and it hurts to try to push them off, when I know that at this point I don't think I am going to ever get better.

Because I have a condition that a "mystery illness" that further makes it hard for people to understand about whether or not its going to go away or not. They really do care and are as tired of it as I am - but then all we ever talk about when we get together is my condition - so that is what I have become - my condition. I know that is not what these people mean to do to me, they just want to help, they are concerned. I always try to highlight them on my most recent treatment and condition - but to tell the truth, I am often am just my condition. I don't do anything else. I can't do anything else. My pain and condition do not allow for anything other than to focus on my condition -sick twisted circle isn't it?!

The closer people ask and then we move on and talk of ther stuff, the closest like myself and my husband and others get all messed up in the pain and aggravation of it. We get all wound up and screw up our relationships’ - how do we fix that when I don't even know how we get there?


I look back at this and read it and honestly feel vomit at the back of throat -

HOW did this happen to me - I had it all right; a happy focused life, a decent marriage, 4 children, a home and now ALL of it is in misery and in jeopardy. We are in financial ruin because of my medical bills, my marriage is at the bottom, my children are miserable because my marriage is miserable, and I can't get off the couch.............................

i was feeling better, now i feel like *%#& again....

gonna go for a while.....


This thread is gold, your words are iridescent, your message is luminous, please keep the support flowing ...

You betcha kiddo. Do it here, and you may be able to save from doing it some less appropriate (for you) places.

You sound in many ways like my wife (and to a different extent, myself). She wound up just having to retire ahead of schedule (which left us short of prepared) because between her own health issues, job pressures, and being my primary caregiver, it was affecting her and us in some very negative ways. Things are tougher now in some ways, and better in others.

I still, after many years, have not fully reconciled giving up my business and the other creative and productive endeavors I was engaged in.

Yeah, that's what the person we tried to establish a friendship with was like.
That's what making a point to leave it alone for an evening, or a day, and do something "normal" for a few hours is about. It's not easy-peasy. It takes some analysis, rethinking, adjustment, behavioral modification, and just plain hard work, but you can do that. You are more than your condition; try to show/prove that to yourself and those around you. Ask your friends/co-workers specifically not to ask you about these things, and be open and tell them why; they'll understand and cooperate because it's something they can do to help you feel better about yourself (if not feel better physically). You're a teacher, so I know you know what attitude and cooperation can accomplish.

I'm wondering if your husband might not be feeling like some of the doctors described in that blog. He loves you and wants to make you better - he's your partner, lover, protector - and he feels powerless and ineffective, and perhaps guilty about that, and maybe it comes out in unpredictable ways. Possible?

These are things we are pretty much all going through. They are more than events. Catastrophic life-altering illness is a process - a journey - and in many ways it's very similar to, and involves, the stages of grief.
Google: stages of grief

The more you learn, the more you become aware of your condition(s), chronic pain, its politics, doctors & medicine, this journey & these stages of grief.... all this.... stuff - the better equipped you will become to adapt and survive and cope.

Doc

Thats the toughest part isnt it? acceptance.

I know I now accept because I have ditched my idea of buying a yacht to sail around Asia and am currently planning where to put grab handles in the bathroom/shower so I dont slip over on my numb feet :

Exiting the world down the track with advanced P/N was never in my grand plan. Oh well at least we can come here and talk without guilty about it :)


On the bright side who knows maybe they will find a drug that completely takes care of the pain its all I can really hope for.

Chronic pain undermines Marriage
 

Just read through this thread. It is so thought filled and brought to light the many aspects of dealing with chronic pain. We are so fortunate to have this type of forum, where we can come and get insight from others. :grouphug:

Donna

I do not know, Blaine, if this applies in your case, but I have had to have a very long, drawn out over days, discussion with my husband in order to clear up this issue. We have been married 29 years, and have been together since we were 17. We have 5 children, and his devotion is unquestionable, but we never seemed to discuss my condition. He took me to Johns Hopkins, sat in on all the consultations, picks up my meds, talks to the pharmacist about how much oxycodone is too much, (evidently about 6 times what I am using), etc. He would not mention it and avoided the topic though and I started to feel as if I must be complaining all the time for him to be so oblivious. I am not much of a complainer, my mother was a hypochondriac and I have a lot of hang- ups about having a chronic health condition, which make it really important for me to feel understood without having to ask for attention.

He started to see a psychologist for severe work related stress, close to a nervous breakdown this past summer, and it made him more thoughtful about what has been going on. He is, quite simply, terrified about my health.The progression, very slow from childhood, has really speeded up in the past four years. He can only deal with things by fixing them or ignoring them and he can't fix me. Suddenly one floor living and walk in showers with seats and grab bars aren't in the distant future. I walk with a cane and need his help to get up from a table in a restaurant, my legs are ridiculously long and cramp up from sitting in a small space. I cannot drive more than a few miles without cramping in my right leg and back, so need help to get some of the shopping done.

So we are having some communication issues and at the bottom of them is my inability to clearly state what is going on, and his fear of the fact that I am in fairly constant pain, losing strength, and likely to get worse.

We do not have financial pressures, which I am sure adds a whole extra layer of stress to an already difficult situation. We do have a lot of child related stress as three are grown, daughter is married and expecting a baby, and all are having trouble with jobs in this economy despite having college and graduate degrees. Also one very angst-ridden high school senior who doesn't want to go to college and a special needs 12 year old, scheduled for yet another surgery this winter.

Thank you so much to everyone for listening and writing, it has really helped me. Even if I don't find a therapist - hearing your stories and your comments works just as well - NO! BETTER!!! Because it makes me feel like I am not an alien any more. I have a place in society again, even if it isn't where I was before, I can manage two lives - my social life of old friends, and my private life of new friends "Chronies of Chronic Pain"::p

Sorry it took so long to respond. My kids brought home a couple of virus's and that knocked me out until today because my condition is autoimmune related. I felt run over by one of those big trucks that flatten out the road.

On the brighter side my husband and I have made gigantic strides in the past week or so. We have really began to talk; I have worked hard to appreciate him more and be very vocal and more aggresive and demonstrative (is this even a word?:p) about it, and he has worked hard to listen to me about my concerns about how he treats me and talks to me and the kids. It has worked so far, but I catch myself wanting to withdraw from him in anticipation of things going wrong. It is so hard to be cautious and open at the same time.

Susanne - your story really affected me. While my husband and I have only been together 16 years, we also have special needs children(that in itself really compounds problems inthe marriage at times) I felt like I was reading my own tale when I read what you wrote. My husband also has many of the same traits as your husband - he is very unhappy at work (looooong story; dream job turned into a nightmare and now can't get out), ignores things if he can't fix it (I call it ostrich head in the sand scenario - not very nice I know, but even he admits its true), frustration at my condition and not able help me (me being an independent type and not wanting and even resenting help doest help things either) and watching my body deteriorate from lack of exercise and all these nasty meds i'm on. I could go on - but you get the idea. I hope you can get some comfort from this website - I know I hate what has happened to me - but I am really happy to have found this site. Do your grown children help?, are they aware of the dynamics in your marriage? I feel so guilty about raising my children in a chronic pain/chonic illness household. I really fear the repercussions of that. I was from a severly neglected household as a child and suffered health problems because of that. Now I notice my children becoming "oversensitive" about thier health. I don't know how to balance.
You mentioned that your condition has been lifelong or since childhood, so how have your children adapted? did it impact them? I am sorry if i am to intrusive - this just really scares my and i ...:icon_cry: i just can't help that i am screwing them up!


Donna - please keep coming back - :grouphug: feels good doesn't it...

Zorro - I just adore your strait forward talk!! Thanks

Hopeful - lucky you getting a great neuro! talk to you again i hope

Dr. Smith - your advice, links, EVERYTHING has helped so much.. :Bow::Bow:

and everyone else who have answered my other threads - youve kept me sane these past months

and thanks to all the lurkers...............it a great site!

I have CMT, a hereditary neuropathy which in my case only caused me to be very uncoordinated, slow, and clumsy as a child. I had very high arches, and the awkward high stepping gait and tendency to walk on the outside of my feet, characteristic of the condition. My half-sister wore leg braces from childhood for what I believe is the same condition, but I have no access to information from them since our father was married to her mother while my mother was married to another man. Can you say dysfunctional? I took a lot of abuse because of my awkwardness, a lot of it from family, but school was no treat. Being nearly 6'2" didn't help.

Numbness started in my feet about 12 years ago. I was afraid that it was a sign of diabetes, although I have neither history nor symptoms, and didn't mention it to the doctor until it had progressed to a complete loss of sensation past my ankles. It is past my knees now. Glucose tolerance is normal. I blamed the pains in my legs on varicose veins. I do not like doctors and I prefer to ignore symptoms until they go away or I m sure they will show up on an objective test. Pathological fear of appearing to be a hypochondriac like my mother who used her health to try and control everyone.

Four years go I suddenly could not lift a plate at dinner. Diagnosis was carpal tunnel in both hands, they should have suspected something since it was bi-lateral but didn't. Three years ago I developed a severe staph infection in my foot from an infected callous I couldn't feel. The podiatrist recognized severe neuropathy and said he wouldn't see me again without a full neurological work-up. Neurologist diagnosed probable CMT, sent me on to Johns Hopkins to be sure, same result. I take 1800 mg. Gabapentin and oxycodone as needed.
My balance is poor, I walk with a cane, I tire easily, and I hate stairs. And it gets slowly worse. Five years ago I had few of these symptoms, so my children suffered minimal impact from my health. My biggest fear is which of them it will strike since it is hereditary.

My daughter, the eldest, has always been a big help, but in the past few years she is quite properly wrapped up in her own life. My sons help when asked, but don't volunteer. It is, I am afraid, the nature of boys. My eldest son is in China, he is the most helpful when home. The youngest is very empathic and aware, but is small and weak, so while willing.... Our two youngest were adopted as infants, but not as special needs, so we did not expect severe learning disabilities and orthopedic problems. We spend a lot of time at the local children's hospital.

My older children have some idea of the stresses in our lives, but not entirely. I do not feel that they should be burdened or worried. We are dependent on each other and have to work on this ourselves. Time alone together is most important. Do you get enough of that?

Do not worry too much about how you are affecting your children. No one's situation is perfect, and you can do everything right and still have regrets if you are honest. Please feel free to ask me anything at all if it will help. You are dealing with more health problems than I am.

I can't believe I came on today and this discussion was happening. I am home sick today. When I get ill it seems to be so much worse then before. I always have been prone to getting ill now I know why. The doctors say my neuropathy is auto immune even though doesn't show in blood work. I think they are correct. No other cause can be found. They have run every test possible.
I have a question for those of you who have auto immune. If you get a virus or bacterial infecction does it seem to be a lot worse then before you had neuropathy? I am on my second round of antibiotics and still having trouble. I've missed 4 1/2 days from work in the last two weeks. (Worried about that because my neuro is trying to get IVIG for me and I will need time for that). It's a wonderful life!!!
All kidding a side I do feel it is wonderful. Although sometimes this really gets me down. Blaine and Suzanne, I have been very concerned about what my childern must feel about me through all of this. I grew up in a house with a mother who was a hypochondriac (spelled wrong). I remember myself and my siblings being so sick of it as we got older. If you had a cold, hers was worse etc. We use to laugh about it. I am scared that is how my kids feel about me. I feel bad everytime I bring up my illness. I can't help myself recently. I am so afraid that I am turning into my mother. Who by the way turned into a wonderful woman, just has no coping abilities.
My children are all grown. My oldest daughter told me a few years ago they don't think I am weak. She said she thinks I am the strongest person she knows still getting up and going to work everyday with this. I wish I could believe it. That was also said before I started to talk a lot about it to her. Now she seems distant when I bring it up. My youngest and I had a conversation. She said it scares them is many ways, what will happen to me, is it genetic, etc. Maybe I should stop talking or complaining to them about it. Whatever thoughts everyone has will be appreciated.
hopeful

This is very hard to write, but I am speaking from experience both with my mother, who was a chronic complainer whose three daughters were completely estranged from her because of the endless drama, and as a mother of five with a deteriorating chronic pain condition: find someone else to talk to. Write down the worst parts of your day in a journal, pour out your heart and desire to be completely understood in writing and try to keep your health out of the majority of your conversations with your family. Fight to preserve some normalcy in your relationships with your children and husbands.

Hopeful, the scenario you describe, where your daughter tunes you out, is very real. We certainly did it with my mother. I don't think it matters to the children if the ailments are real or imaginary, they don't want to hear it. We have a strong need to be understood, and it is natural to seek it from those nearest to us, but it puts too great a stress on those relationships. find a support group or buy a journal, come to this site often. Spill it here, and face your family as a woman with more to her than her illness. I know that it is hard when your body is screaming at you every moment, but it is worthwhile.

What a courageous person you are to say that :hug:

Unfortunately or fortunately, people like being with people like themselves, its been that way since the beginning of time, you only have to look at religion or race , sport , work, social class etc , we all tend to be drawn into or away from certain groups.

now zoom in and consider sick or disabled people...unless your a nurse or a charity its most probable that most people would rather avoid close extended contact with the chronically ill. after all its a huge downer isnt it?

the sicker we are the less chance we have of being accepted so do the best to suck it up and as Susanne says 'spill it here' because we are like minded

QUOTE=Susanne C.;828997]This is very hard to write, but I am speaking from experience both with my mother, who was a chronic complainer whose three daughters were completely estranged from her because of the endless drama, and as a mother of five with a deteriorating chronic pain condition: find someone else to talk to. Write down the worst parts of your day in a journal, pour out your heart and desire to be completely understood in writing and try to keep your health out of the majority of your conversations with your family. Fight to preserve some normalcy in your relationships with your children and husbands.

Hopeful, the scenario you describe, where your daughter tunes you out, is very real. We certainly did it with my mother. I don't think it matters to the children if the ailments are real or imaginary, they don't want to hear it. We have a strong need to be understood, and it is natural to seek it from those nearest to us, but it puts too great a stress on those relationships. find a support group or buy a journal, come to this site often. Spill it here, and face your family as a woman with more to her than her illness. I know that it is hard when your body is screaming at you every moment, but it is worthwhile.[/QUOTE]

Hi Susanne, I think that is good advice. I am going to give it a try. I think they are also not use to me not being able to cope. They grew up with me being in charge. I was the one that ran the roost (as my mom would say) they are not use to seeing me not be able to be the person I was. As I write I think it just dawned on me that I need to give in and find a new me. Should we do that? I still won't give into the fact that this is here to stay. Maybe I need to face this and find the new me. I just don't want to give up the old me. I liked her. I was so active and healthy. Managed to work full time, get my undergrad and then my masters. The only part I think I know was good for me with this disease is that it forced me to slow down. It also gave me a different perspective on my husband. We are so much closer now, still have our moments, but nothing like before. I just realized the marriage part of this has made my children much happier. They are with us all the time even though they are grown. I guess there are somethings to be thankful with neuropathy?
The reason why I try not to come here and talk about how bad or sad I am is because, I don't want to bring anyone else down. All of you have enough of your own stuff happening.
Again, thanks Susanne, I realize I went off topic but I am going to try your advice. I am sure it won't be easy because neuropathy is such a huge part of me. Sometimes I feel like it is me. Not good.
Hopeful:hug:

HOPEFUL I LOVE YOU AND YOU ARE WONDERFUL

yes i am shouting that at you

You don't bring me down when write in about your pain, your make me human! BY admiting and exposing yourself in this manner, you allow me to be vulnrable as well. I could not do this if others did not reveal themselves as well. Please dont ever feel like oooops i shouldn't tell you how to feel..... Please don't think I get sick of hearing from you or judge or condem because you have low feelings. I have them to. I have come from a mother who did not allow for ANY emotions what so ever - other than her anger! So I can come here now and share my depression over my condition for the first time - i need to know that you feel like I do - I feel bad sharing my pain as well. It is very hard for me to share my pain with others. Dumping on others was never allowed in my household when I was a child. It is allowed now! And it is neccesary! I am happy to share the pain that you struggle with sharing the pain!

I also love the part about how you say you are the neuropathy - oh yah, been ther. done that. I have a good friend who shares this wonder with me as well. As I have beeen advised on this site work on some of your relationships to aviod that, but ya, sometimes you are just gonna be your condition - especially on bad days, but thats why we can come to this site. Thanks to all the people who have refined and maintained this site - because it has really saved me this past month.

Susanne - I really love your advice. I have had to really become a different person so I don't inflict my angst, pain, frustration, etc, onto my family to much. I modify my activity levels so that I don't get into too high of a pain threshold. It kills my kids and husband to see me in ANY pain what so ever. So from active go getter I become a sit and do nothing. I often get too frustrated watching them do stuff, so I have to get up and leave the location they are in for a while. That hurts me emotionally, but I find I get snappy and short because I am frustrated that I cannot participate in family projects, acivities and chores. They understand and have gotten used to it as well and would rather I sit off in the distance and read a little while, while they do things so I can get my emotions under control again. But it is so hard for someone who grew up independent (forced upon) and self-sufficient, to sit back and have everyone do everything for her! It hurts too that my kids and husband have to do so much more work because I can't maintain my fair share 3/4 of the year.

But doing it this way keeps me from being in too much pain (along with all my icky meds!) and still been an emotional and vocal part of thier lives in a positve way.

I was very afraid of coming on too strong in that post, I am relieved that it was taken the way I meant it!

If I understand correctly, both Blaine and hopeful have autoimmune issues. From what little I know that means that you have many more complications, but also more chance of treatment than hereditary neuropathy.

For me, proper pain relief and pacing are the key to a more normal looking life. If I take my pain meds I can sit on the bleachers through my son's basketball game, kneel for a bit at Mass, or sit at the sewing machine for a little while. I get exhausted, and it still hurts, but I can do it. I am a lot easier to live with.

At my age (50) I am not worried about eventual dependency, frankly that is the least of my problems. If it helps me get around, keep house, do some, ( not all) of the things they expect from mommy, and not be a pain in the neck to live with, good enough. I won't be quite the super-nana I expected to be when grandson #1 arrives in the spring, but I can still sew and knit a little. I don't make as many cookies or put up as many decorations. "good enough" and "cleaner than it was" are my mantras.

I keep a health journal, writing down what I ate, if I went for a walk or did some simple yoga stretches, but most of all writing down how I feel. It really seems to help keep me from whining.

You do have to work to find a new normal. It isn't very different from adjusting to other changes in life, growing older, kids growing up, etc. And you are still you! Being able and active isn't all you are. Hopefully you will regain some of that with proper treatment, but don't define yourself by how much you are able to get done. That is a losing proposition as we age, even without severe health issues. Work to stay sweet and pleasant, cut yourself some slack, and your family will never mind having to help. But don't expect them to be mind readers. That breeds resentment on both sides, and again I am speaking from experience. If you are anything like me they are used to having you do everything and they have no idea what is needed or involved in running a house.

Get out of my head!!! :hissyfit: :Clever: :icon_mrgreen: :doctor:

Doc

thanks for the kind words it is wonderful to have a place to voice how I really feel and get responses and encouragement from people who really understand.

hopeful:hug:

I am sorry if I get off topic a bit - but for the entire length of this day so far my mind has been revolving about the motherhood/parenthood issue. I see how concerned we all seem to be about the effect we (or really our conditions)will have on our children and the adaptations we must make in order to not influence them in to negative a way. It is really, really striking me internally about my own relationiship with my mother for some reason today.

I thought I got over our lack of a relationship a decade ago. My mother is an emotional iceburg. It is so sad; she has isolated herself phyically (she lives somewhere in Mexico on a sailboat with her 2nd husband) and emotionally from myself and my family (she and her husband did not even want to be called grandma and grandma). She is very unapproachable, bitter and brittle. My husband comes from a fairly emotionally stable famioly (at least when comparing to mine) and he has worked his bottom off to help us meet in the middle; he has given up as well. She is just to emotionally blocked off and unstable. I have tried through so many methods to reach her, but there has been no way to be close her or communicate with her. So I have left it up to her and kept our relationship just on the surface; light-hearted, friendly, not really deep nor how I want. Intimacy scares her, discussions about the past are not allowed. That is really okay with me now - if she doesn't want to be close. So in the Autumn of the year I developed this condition she e-mailed me a farewell letter "because we were not close". Huh? I wrote back saying I am sorry that she felt that way and what could I do to help and she just wrote a long list back of my faults and critisizing me. It was horrid. my husband went beserk and theatened to have nothing to do with ever again - and this is the man who ignores all problems and never gets mad. I was very patient and wrote back saying that again I was sorry I hoped we could work out, blah, blah. Well it has been 2+ years now, and I really get mad sometimes (and sometimes more than others!) because I would really love to have a mother to talk to about all these parent/child inluence/relationship issues!

Today especially its getting to me. Hearing how everyone is considerate about thier kids - I turned 40 earlier this month and my mother doesn't acknowledge i'm alive. My kids don't have a full set of grandparents, and I would love to be able to talk a mom about my questions and feelings like I talk here.

I don't know why it is bothering me now, she has always been this way. Its just making me sad today.

About two years ago I just decided that I couldn't handle dealing with my mother anymore. She was demanding and self-centered to a degree that was absurd. I too envied people with more normal families. I moved out at 17. Despite having no real affection for her, or perhaps out of guilt, because of it, I did much, much more than my older, legitimate, sisters to make her happy and include her in our lives. She always brought me down, and my husband would say that the worse thing we ever did was not moving far, far away.
I think it was some combination of my health and peri-menopause that made me decide to make a break. I couldn't keep up with her demands anymore, and she would never accept less than 100% compliance. I think that as we get older and more disabled we are struck by two realities- that we will never have a loving, nurturing mother, and that we don't have as much time to waste on it as we used to.
She died this past summer and was buried without a funeral Mass, or any memorial at all. I have never felt so free. It sounds nasty, but I carry a lot of psychological trauma from her abuse and neglect.
Have you ever watched Hoarders? It is the only regular TV show I have ever watched. I am struck by how mean and abusive some of the elderly Hoarders are to their adult children. My mother's house was lovely, but her selfishness and attitude were exactly the same. Sometimes the show makes me cry, it brings up so much baggage. You are not alone in feeling the way that you do.

Great minds think alike :D

Is this some past life karma , or what ?

Im seeing a real pattern here with mothers :D

NO i don't get on with my mine she is opposed to me in every way and this past summer even provoke me into defending myself which in turn made the very issues i had almost got over after year being housebound a year - far worse. ( I had actually planned to go out the day she provoked me )

Seriously if it had been any one else I would of strangled them I was so angry and still am.. and as result our relationship has hit an all time low .

It will not matter though , I know she would do it again as people in general dont change

No one asks or wants to talk about my issues so by default its though I - they do not exist which of course just ****** me off even more because it leaves u feeling like its not important or trivial / delusional at best.

Suffering so much for something not even acknowledged by medicine ( in regards to my main issue ) amongst other things and being housebound might as well be some form of ritual abuse, afterall if your life has no meaning on any level you might as well not even exist- and sometimes i wonder if theres any point even do.

m

Some mothers can be "muthas"... :rolleyes:
It's (a) taboo in every culture (I can think of) to hate your mother. Likewise it's taboo for a mother to hate a child. Some people have been able to justify/rationalize/reconcile this by admitting, "I love my mother/child, but I don't like my mother/child," particularly when the mother/child is an abuser, mentally ill, or just not a nice/likeable person.

I could go on about the fallacy of the ideal family portrayed by media (The Hardys, Nelsons, Andersons, Stones, Bradys....) like the fallacy of the ideal woman portrayed by same (plus fashion models, Barbies, etc.)

I think the real damage comes from the guilt we feel when we think there's something wrong with us, or that we're in the minority, when we come from/live in a dysfunctional family, but I think the dysfunctional family may actually be the norm.

Doc

True, I know a lot of it is just her social conditioning but she has wicked streak too I dont like much like what we call " neds " or chavs round here.

Its one thing to cause misery its another to get off on it belittle you for being too " sensitive " if u dont play along - and that is something i loathe and have little time for.

I do not get off making people feel worse- life is so short and the margins too enjoy it for us so thin , they will never know until they've suffered ( i mean really suffered themselves )

When youve suffered you learn not to take anything for granted, most of all yourself.

m

Aaaghhhh - This is sooooo her! :eek: :Thats-Funneh: :Grin-Nod:


Back to the topic of the marriage/our-conditions/influence-on-children -

.... I just found out my 13 yro son is failing two of his classes, back-talkng to his teachers, not doing ANY of his in class assignments (he does his homework because at home I am here to check on him), and just goofing off and playing around in his classes all day.

Now two off his teachers have know him since I brought him home at age 6 1/2 and they know he has an extremely high IQ, but is also has RAD (reactive attachment disorder). Peter is adopted and has overcome most of his issues with this disorder. It really hasn't been much of a problem the past couple of years but as you see he is acting out again. One of his teachers wants him out of her class completely. But he also gets a's and b's on the assignments he does do, and is in leadership class, and was on the honor roll last quarter -this is all new and is a reflection my husbands and I marriage problems I'm sure. We hafe reassured that everything is going to be okay, but I know it will take I long time for him to feel comfortable due to his attachment disorder.

For those of you that dont know; in the simplest form attachment disorder occurs when children from newborns to age 3 or so do not get thier most basic needs met regularly. Like getting fed when hungry, held when scared, ect. Those children then ONLY feel compfortable when they feel uncomfortable. Does that make sense? These children actually cannot handle good feelings. Take for example his biological sister; she was 3 1/2 when she moved in and anytime you said "good job", or a likewise positive comment, within 15 minutes or so whe would go hurt an animal, her sister (our other daughter, a bio-child), or break a toy, or worse. So it takes YEARS to get them past thier history and they will always struggle with these feelings. Peter has come along way. We do an immense amount of therapy with them.

But now he is 13.........I know why he is acting out, and we are doing the traditional therapy with him for this. We talk, and a lot of cuddling is the most theraputic for him. Call it a form of holding therapy - we just sit on the couch with him on my lap and we talk or I just hold him and I read a book. He is amazingly respecful about how much pain this causes me, so I know her cares. He also has to really do a lot of physical work to burn off his anger and resentment.

Only now he is 13 and is being smarty pants and just not doing what he is told. How do I get through to a 13 yro when I can't physically do anything about - remember I can't use my arms much without causing severe pain. I tell him to do somthing and he jsut sits there and does ts in his own sweet time. Or not at all.

These new teen-type of behaviors are what I don't know how to handle, and I feel a little water-logged/overwhelmed. I don't know when to stop, when to intervein, when to let it go. Do I call him on him waiting ten seconds to getup to his chores, even though he does this 16 TIMES A DAY. When he takls in a sullen voice how many times do I let it go? I have studied and learned so much about adoption,attachment disorder, gifted children, gate-childre, highly-emotional children,exteremly independent children, shy children - aaaaaaaaghghghghhghg, ........ dgomasnr;oigjae'r gfmnafkvmasdklvm ad;lvmaero geojg'pbvmb mpk
]aewk4far340eitfkpaergjolkb';ls,................... .....................



................... i cant think i cant fit eny mor in mi brane

Welcome to real parenthood! :eek: He's an adolescent. He's beginning to think, decide, and choose for himself, right or wrong. Part of him is wanting/expecting to be treated like an adult and have more say in things, but of course it doesn't happen overnight. Another part of him may be looking for boundaries - boundaries he can stretch, manipulate, challenge....

This is one of the epic battles waged in every generation since the dawn of time. (Yes, I know there are kids who somehow missed all this and were complete angels through puberty, but that's rare.)

It's the Parent/Child/Adult (transactional analysis) power struggle at work.

Growing up is a learning experience for both child and parent. There's support/help out there for this too, but like everything else on the internet (or in books, on TV... wherever....), there's going to be good and bad advice/counsel.

Doc

I dont understand the need for kids when we have more than we can handle with ourselves - whats wrong with a new hobby or pets its less expensive ??

Far too many people in the world any way, last thing we need is more to just to deplete our already depleted resources imo.


m