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Guilt and Fibro pain
While I have PTSD, agoraphobia, social anxieties off the wall and fibro-fog seems to settle in all the areas where the synapses used to fire - I'm curious about how the rest of you deal with the physical limitations of this condition. I have a lot of pain (yes, I've been through the list of medications for 10 years now - no more new meds - thinking of having a tshirt made) and the more I move, the more I hurt. I've been married for almost 30 years with 5 kids, youngest 15, worked until 10 years ago and always kept a pretty clean home with the mom cooking and holidays, etc. Now, my day consists of waking sometime between 1 and 3AM, using the computer for a few hours, struggling to do the basic cleanup for a couple of hours, 2 loads of laundry and a shower and I'm practically dead. Then it's only 9AM. So I watch the tv, because my avid reading isn't really going so well when I can't remember what was on the page I just turned and re-reading is getting old. I don't 'do' phone calls, they scare me. Obviously I have a few psych oddities that I'm hoping you all don't! So the question I'm getting at:
Does anyone else feel this extreme guilt? My husband is wonderful and will do anything I ask. But I feel an overwhelming guilt from asking for help from others; I sometimes feel as if no one really understands this pain and since they can't see anything, I wonder if they think I make it up just to be lazy and sit in front of the tv. I do take vicodin, ativan, trazodone, lunesta and a couple of blood pressure meds. I've had 4 different counselors, 2 for over 2 years each all to no avail. My mind is so fogged up I just realized I forgot why I was writing this. So, I'll stop with the question I see I did remember to ask. Thank goodness for the title! Take care all. tt
Does anyone else feel this extreme guilt? My husband is wonderful and will do anything I ask. But I feel an overwhelming guilt from asking for help from others; I sometimes feel as if no one really understands this pain and since they can't see anything, I wonder if they think I make it up just to be lazy and sit in front of the tv. I do take vicodin, ativan, trazodone, lunesta and a couple of blood pressure meds. I've had 4 different counselors, 2 for over 2 years each all to no avail. My mind is so fogged up I just realized I forgot why I was writing this. So, I'll stop with the question I see I did remember to ask. Thank goodness for the title! Take care all. tt
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I'm getting a bit of relief from Lyrica and am now able to do 5 minutes of exercise here and there now. I do find the fibro fog the worse though. My memory is so bad and I have days when I am afraid of the phone too. I work from my home office in sales of software to companies and this is really affecting my performance. I've had physical problems (fibro is just the latest) for so long and could always rely on my intellectual talents and now that is going out the window. I'm doing all I can to keep my sense of humor and that is helping a bit. I just can't take myself too seriously. I'm learning to let my standards for housework go - I can only do so much. My husband tries and I say if he doesn't let me hire a housekeeper then he can do what I can't. I am the major breadwinner in our family and find the pressure way too much. I do feel a bit of guilt and I'm sure that will grow should I not be able to work any more. I do hope you can find some kind of relief. I live for my massages and soaking in the tub.
Wishes of luck with the new treatment Kitty.
Yes, I was always the 'brains' of the outfit - probably most wives are with taxes, bills, dr appts, school conferences, etc. My husband used to joke that he didn't know what anyone was getting for Christmas until they opened it.
Not anymore. He's reluctantly stepped in. It took a while, but when thing just didn't get remembered he realized I can't be counted on for all that much paperwork anymore. I did manage the taxes this year. But the scary part is that I know if I did them again today they'd turn out completely different.
I don't do massage. I have a real problem with strangers touching me. It's been recommended by many, I know. After trials and errors (including six months of oxy and taking myself off that - nasty for me) I just use Vicodin to take the edge off, a heating pad when it makes me cry, the Ativan actually seems to help the pain by calming me down too. Otherwise, I just endure it. I used to hate to have my family see me cry but I've come to the conclusion that it doesn't really seem to bother them that much. I know there's only so much consoling they can do, and like you said kitty I get tired of feeling like I'm whining, but I could never walk by one of my kids or spouse crying without at least acknowledging it.
I'm brilliantly deducting here that this type of disease/syndrome/pain must break up a lot of families and cause some very hurt feelings. Perhaps the fogginess is a blessing so that we don't remember quite so clearly.
Yes, I was always the 'brains' of the outfit - probably most wives are with taxes, bills, dr appts, school conferences, etc. My husband used to joke that he didn't know what anyone was getting for Christmas until they opened it.
Not anymore. He's reluctantly stepped in. It took a while, but when thing just didn't get remembered he realized I can't be counted on for all that much paperwork anymore. I did manage the taxes this year. But the scary part is that I know if I did them again today they'd turn out completely different.
I don't do massage. I have a real problem with strangers touching me. It's been recommended by many, I know. After trials and errors (including six months of oxy and taking myself off that - nasty for me) I just use Vicodin to take the edge off, a heating pad when it makes me cry, the Ativan actually seems to help the pain by calming me down too. Otherwise, I just endure it. I used to hate to have my family see me cry but I've come to the conclusion that it doesn't really seem to bother them that much. I know there's only so much consoling they can do, and like you said kitty I get tired of feeling like I'm whining, but I could never walk by one of my kids or spouse crying without at least acknowledging it.
I'm brilliantly deducting here that this type of disease/syndrome/pain must break up a lot of families and cause some very hurt feelings. Perhaps the fogginess is a blessing so that we don't remember quite so clearly.
I haven't seen that movie but will definitely try and do so (if I can remember to do so). I actually feel a bit less guilty about my housework going undone. My husand says he doesn' see it any worse than before. I can't get him to realize that the fibro didn't just spring up one day but that I'd been suffering with the fatigue and headaches for a long time before the daily pain hit. So yes, I haven't been the best housekeeper for a long time but am finally getting to the point of telling people that they are coming to see me, not my house.
The hardest thing I find is keeping up with the paperwork, bills, taxes, etc. It is just too much for my brain these days.
For massage I go for myofascial release. Helps immensely!
The hardest thing I find is keeping up with the paperwork, bills, taxes, etc. It is just too much for my brain these days.
For massage I go for myofascial release. Helps immensely!
I have been told that my fibro fog is convenient memory loss!! I have also gotten to point instead of saying i have am in pain( so im not whinging ) i have told my family just assume that i have pain unless i say im having a good day today. Ive had FM for years now,you would think that they would get the hint by now.Ive gotten to the stage now that if anyone else has pain now i say to them oh just get on with like i am told.Then i get told oh but your used to it !! How can ya get used to it? but as for the phone ,well i have dialled numbers and forgotten who i have called LOL I am a talker and i dont care if i muck up what i am saying or forget why i called... I have tried many treatments lympatic drainage nearly killed me its deep muscle massage and the pain afterwards lasted for days,so i am going to try bowen therapy much more gentle,will let you know how i go...
Thanks for the empathy. It really does help to know you're not alone, doesn't it. Have you seen the movie "Lymelife?". It has, among other actors and storylines, Timothy Hutton as a husband/father who has lyme disease. And how everyone around him at first accepted his illness but when he didn't get better began to silently accuse him of being a lazy hypochondriac. And how he tries to hide his pain and fool others into thinking he's looking for work to provide for his family. It was on again yesterday and wow it reminded me of what the types of illnesses we're dealing with really do to people who can't see a symptom. Wouldn't it just be easier if our left arms were put in a cast?
the guilt, obligation, and pressure we feel i think were the original CAUSE of our fs/ me/ fm - yes? we just didn't know it at the time. these forces bend us so out of shape - while we're not realising - starts from when we're born! - until we resemble something we're completely not supposed to be. then our system just collapses with the inner conflict and says 'no more'.
then we get the sickness. then we feel bad about feeling bad. and resist and fight and object to our circumstance - a fair enough response. it's this non-acceptance BY OURSELVES and by OTHERS that prevents us from resuming our natural state, the shape we were always supposed to be.
in our society too, we want everything fixed and quickly. sickness has to be healed, not fixed, and it also isn't a one-minute process. so the whole cf/fm/me condition is cruel and severe in terms of social context because of the sheer mysteriousness of it - !
it took many months - and still in progress - but after worrying so long about what 'should' be (and wasn't), and what i should be doing, and what others were thinking, and the discomfort and resistance and guilt, i began think more of what actually is - what GOD THINKS - and well, he doesn't really make any of these judgements. he would say 'you're sick, look after your body, rest, treat yourself well, you're tired, you have to stop reading now, go to sleep, don't listen to (ignorant comment of well-meaning friend), i think you're great just the way you are, you really need the rest, etc'.
no see i feel a tiny bit guilty about going blablabla about god, but it WORKS for ME, and we can get into all sorts of bad shape feeling selfish, but please - DO THIS, DO what WORKS FOR YOU, DO what you have to to be COMFY, no matter how small.
guilt is crippling, and continues to make our condition worse. i had been guilty for quite some time before recognising it. here's a good basic article on the psychology of guilt:
http://psychcentral. com/blog/archives/2007/11/27/5-tips-for-dealing-with-guilt/
it isn't specific to "guilt-in-illness", but has a bit of relevance
take care, everyone
p.s. yup my housework has truly declined and i don't have friends over much. this is changing, and i have some people over because 'this is my life' - 'for now' - and the state of my home is part of it. i sure understand this
then we get the sickness. then we feel bad about feeling bad. and resist and fight and object to our circumstance - a fair enough response. it's this non-acceptance BY OURSELVES and by OTHERS that prevents us from resuming our natural state, the shape we were always supposed to be.
in our society too, we want everything fixed and quickly. sickness has to be healed, not fixed, and it also isn't a one-minute process. so the whole cf/fm/me condition is cruel and severe in terms of social context because of the sheer mysteriousness of it - !
it took many months - and still in progress - but after worrying so long about what 'should' be (and wasn't), and what i should be doing, and what others were thinking, and the discomfort and resistance and guilt, i began think more of what actually is - what GOD THINKS - and well, he doesn't really make any of these judgements. he would say 'you're sick, look after your body, rest, treat yourself well, you're tired, you have to stop reading now, go to sleep, don't listen to (ignorant comment of well-meaning friend), i think you're great just the way you are, you really need the rest, etc'.
no see i feel a tiny bit guilty about going blablabla about god, but it WORKS for ME, and we can get into all sorts of bad shape feeling selfish, but please - DO THIS, DO what WORKS FOR YOU, DO what you have to to be COMFY, no matter how small.
guilt is crippling, and continues to make our condition worse. i had been guilty for quite some time before recognising it. here's a good basic article on the psychology of guilt:
http://psychcentral. com/blog/archives/2007/11/27/5-tips-for-dealing-with-guilt/
it isn't specific to "guilt-in-illness", but has a bit of relevance
take care, everyone
p.s. yup my housework has truly declined and i don't have friends over much. this is changing, and i have some people over because 'this is my life' - 'for now' - and the state of my home is part of it. i sure understand this
Guilt is probably the biggest problem I've had since being diagnosed with CFS/FM. I used to work full time, took time off to do all of my kids' school field trips, cooked, full time hockey mom and now....nothing. I don't even eat because I don't have the appetite or the energy to make myself something.
I'm divorced and have had to change our custody arrangement to only having my kids on the weekends. They're 13 and 17 and have had to learn to fend for themselves but my 17 year old is lazy and just won't eat.
I feel INCREDIBLE guilt for not being the Mom I used to be. I feel terrible for having a messy home. I often wonder if my kids are embarrassed to have their friends over but weekends are really the only time for them to socialize so their friends do come over. My fiance works in Louisiana (we live in Canada) so he's away for 3 weeks at a time. When he's away the kids know that we're eating take out and I can't drive them anywhere. When he's home everything is great because he cooks and cleans and drives them around, takes them to movies, goes to all of their hockey games, etc. He has become "Mom" and I just sit at home feeling guilty.
You are not alone.
I'm divorced and have had to change our custody arrangement to only having my kids on the weekends. They're 13 and 17 and have had to learn to fend for themselves but my 17 year old is lazy and just won't eat.
I feel INCREDIBLE guilt for not being the Mom I used to be. I feel terrible for having a messy home. I often wonder if my kids are embarrassed to have their friends over but weekends are really the only time for them to socialize so their friends do come over. My fiance works in Louisiana (we live in Canada) so he's away for 3 weeks at a time. When he's away the kids know that we're eating take out and I can't drive them anywhere. When he's home everything is great because he cooks and cleans and drives them around, takes them to movies, goes to all of their hockey games, etc. He has become "Mom" and I just sit at home feeling guilty.
You are not alone.
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