posted
I'm WORSE again, and I feel like IT'S ALL MY FAULT. I feel like I'm letting my LLMD down, everybody down. I hate letting people down, always have.
Horrible symptoms are back. I can think of reasons: I tried to do too much; over extended myself, didn't listen to my body, forgot meds because I got lax on doing a chart, didn't eat properly, care for myself well enough, get enough sleep, wasn't wise....
I know the symptoms might disappear, at least for a time, again. I might get better, at least for a while, again.
But how do I cope with feeling that IT'S ALL MY FAULT? (And, is it?)
-------------------- cecy sunshine "I remember me." Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Nobody is perfect. You'll find the balance. It just takes time.
Feel better,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
I would guess this "guilt thing" spills over into other areas of your life too? Chill! You can't get well if you're consumed with guilt.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Cecy. That's funny, I feel guilty a lot too.
Last month when I saw my LLMD, I felt very proud of myself because I had really had a GOOD month -- almost a whole month of no head pain! Good stuff to report!
However, when I go next week, it will not be a good report, and I will feel a little like I am disappointing him. (Chalk up to six weeks of Flagyl.)
I think there's a strong aversion to going to a doctor and admitting that you're actually much WORSE than the last time you saw him! Despite that being an expected progression in Lyme disease.
I feel guilty if I lie down when I really need to because I'm not "being there" with my daughter. Similarly, I suppose I ought to feel guilty because I'm not resting and taking care of myself, either (can't afford to, gotta work).
Push it aside and don't own the feelings, they're just remnants of our upbringing.
"Show me someone who doesn't feel guilty and I'll show you a MAN!" (an interesting saying I heard somewhere!)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thanks so much for your quick support everyone! The "oops" and then living with it just caught me for a minute, and I needed to hear all that: to be reminded that "Nobody is perfect." (Thanks, Heather.) To be told "You'll find the balance." And "It just takes time." And "Chill!" (Thanks, Lymetutu.)
I do sound like a little kid: "my fault, you're fault, its fault." There's not a question of fault; it's excess baggage. Yes, probably from childhood, like not doing well on a test and seeing the red marks saying "wrong" "wrong" "wrong". Maybe I should change my terms ("I'm doing worse") or let go of what "worse" conjures up, translate it into different feelings. Or letting it be OK. Maybe "worse" isn't even a negative. I learn the most, and re-asssess priorities better when "worse." So "worse" can be "better," an opportunity.
Hey Michelle, thanks. I needed that, too. You tell me I'm not alone at "this place" in my learning. Sorry to hear your next report in won't be as "good." My aversion to telling my LLMD I'm doing worse IS because I don't want to disappoint him. Thanks for putting that into words. And for telling me that "worse" is "an expected progression in Lyme disease." I didn't know that. WHEW! It helps to know.
I had to laugh about your "being there for your daughter" but not resting, or resting but not being there. "Not being there" for my family is a big one for me, too. I hear you exactly, and have laughed at myself for actually feeling that way sometimes! Then I remind myself that life is a trade off. I don't think we ever reach perfect balance, because it doesn't exist. I'll try to take better care of myself and push aside negative feelings like guilt. I won't own them. Your joke about men and guilt reminded me that men seem to be able to brush things like guilt aside as extraneous. Oh, and God bless you in your work and caring for yourself and daughter. You are doing an amazing thing!
Weird, but I didn't see it for what it was, a "guilt thing." I can see that, in someways, it might be things I've done or didn't do that made me worse again. So what? I forgot that nearly anything can re-trigger Lyme. And looking for "causes" isn't moving forward. I don't have the energy to waste on "blame." Don't I feel dumb! Yep. Dense too. But that's OK. I am in some ways and that's OK too. Still learning. My mom says, "flow with it." I find I STILL fight it rather than accepting the downs. I've got to think "SEA."
I love to stand on the beach and watch the waves in their random beauty. Much better to see Lyme, and life, like that.
-------------------- cecy sunshine "I remember me." Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
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(I added waves to my signature pic so I'd remember. AND made sure they are irregular. I've been saying to myself "chill, chill." It's got a kind of rhythm and makes me smile.)
You have a great attitude! God bless!
-------------------- cecy sunshine "I remember me." Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
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I had the hardest time not being there for my daughter (she's 18!!!) and my husband. Lying on the couch when they got home in the evening with no supper in sight was the worst for me. Most times I would literally force myself up, dizzy and staggering around, practically burning up dinner, forgetting ingredients, yelling at the dogs who came in to check out what was cooking and basically being a crazed maniac.
Now, if you step back from this scenario it is quite funny and my daughter pointed this out to me. Kids are great. They would rather have me happy and chatting from the couch while they order pizza or chinese or just snacked.
I'm better at this now. My daughter grocery shops and learns the value of helping out in a family faced with a health crisis. My husband is so dear that he never expected me to do anything but get better anyway. This was all stuff I did to myself.
So hang in there, your doctor is a big boy and probably isn't really disappointed in you anyway. You are doing your best. A good friend pointed out to me that I would never consider being this hard on anyone but myself. Hmmmm.
((((HUG)))) Posts: 460 | From Illinois | Registered: Aug 2005
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posted
"Show me someone who doesn't feel guilty and I'll show you a MAN!"
That's hysterical.
I'm new to this site. Diagnosed 3 weeks ago-- Igenex--after 6 years of going to docs. On one hand it's comforting because I see so many people are going through the same thing I am. On the other hand it's depressing because it takes so long to get rid of those dang critters.
Posts: 33 | From Florida | Registered: Nov 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Ewok, It's good to see you here. You're right about this being a tricky disease, but at least now, you know what you're dealing with.
Like you, I bumped around from duck to duck for 9 years before finally knowing what was wrong.
Now that I know, I feel I'm making progress for the first time, even if it's slow progress!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
I agree that guilt is a lifelong pattern but just brushing it aside is easier said than done. I like the proactive method.
If you know you havnt been taking your meds, eating right etc then take charge and make a plan so you arent giving yourself ammunition for the guilt gun.
You cant be perfect but you can make a chart of what you feel is most important and then stick to it to give yourself ammunition for the empowerment gun.
You could do something silly and basic like a chart with meds & diet coloum etc and give your self stars or points. Anything that will be a visual & mental reward and motivator. Just telling yourself "Im goint to eat right" doesnt always work.
Give yourself the gift of empowerment instead of guilt.
Posts: 561 | From connecticut | Registered: May 2004
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posted
sofy, thanks, good advice. I'll give myself the gift of empowerment, or try. I'm so overwhelmed right now with impossible tasks and dreams. I can let some of them go, because one has to. An "I think I can" attitude seems best only on little things now. So much that used to apply has reversed. "Don't put off till tomorrow what you can do today" has become "Put of till tomorrow what you don't have to do today." I seem to mix proactive with "the struggle between two goods" -- life is such a trade off!
chroniccosmic, thanks, I needed that. I'm where you are. My youngest is 19 and has born a great deal through all the downhill of my illness. You know, it seems to be easier to blame, than to pat one on the back, even, or especially, when it's oneself. So I pat myself on the back in little things. Maybe that's what sofy is talking about. "Don't beat yourself up" should be pasted on my door. I think perfectionists have this to learn, and moms...especially moms. Thanks for the (((hug))). Back to you! I smiled; I smiled at "basically being a crazed maniac." I suffered a setback yesterday -- had what one writer has called "a fit of the vapours" -- because a family member suddenly told me that promised help I'd been counting on to complete a 30-year project I'm trying to complete by summer was a no go. It was so sudden that it swept me off my feet. She said, "I don't think you'll ever get it done anyway." Ouch!!! That's what some people told me when I bore two children while working on my master's degree. I completed it. This present setback seemed so much greater! And, relatively speaking, it is. I'll just have to find a way around it. So hard, though!
Heather, you're so positive. Like rain-washed air. Thanks. I'm doing a little better right now.
Ewok, I was diagnosed a year ago, also Igenex, after 11 years of going to docs. Ditto on the comfort, and the downs. Hang in there! There will probably be almost random ups and downs (the "waves of the sea" thing). Ride them. If you've ever body-surfed, you can relate to taking a plunge and finding yourself dragged along the sandy bottom below the waves for a time. We try to flow with as best we can.
Andie, keep making progress!
-------------------- cecy sunshine "I remember me." Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
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posted
Gee, I've been looking over this link for the last few days and it's rather overwhelming after struggling for years and finally being diagnosed with "false negative" lyme disease last month. Definitely as you say, my doc is a duck, and has referred me to see an infectious disease specialist later this week, which I hope is the right thing to do to treat my condition with no end in sight.
I have so many questions and concerns going through my head, that I just don't know where to start. For one, my husband is always angry at me or makes me feel guilty for being sick and not being able to do as much as I used to...he is never satisfied with whatever I get accomplish and is actually jealous that I am stuck at home sick and in bed, and thinks I am just staying home for fun...like the pain isn't killing me already. Duh? He has no inkling of how hard it is to crawl out of bed and get tasks done, let alone taking care of myself and fixing something for myself to eat (healthy or not). My husband also thinks that I am being negative every time I want to share some findings I found or have just learned about Lyme disease and so forth. I am sorry to say that it's apparent that he hardly gives a crap about it or what I am going through. He is more concerned with his own personal needs and his S.A.D., no matter that I am now going through a rough time with constant joint pains for practically 2 months now without any relief yet and finally being diagnosed with LD after I'd already suspected for at least 2 1/2 years!!! He also wants to know about support group for family members of lyme patient, as if he is actually the victim and not me. Where can I turn next when my husband simply doesn't understand and is constantly belittling and criticizing me??
Posts: 90 | From Maryland | Registered: Jan 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
It's my fault enforces negative thinking. Try telling yourself over and over again "I'm going to focus on doing everything I can to aide in healing myself". Postive thoughts.
The Serenity Prayer sits on my window sill above my kitchen sink. There are many things we can do to help with healing ourselves, there are somethings that we might not be able to change. It is what it is. But keep searching.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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quote:He also wants to know about support group for family members of lyme patient, as if he is actually the victim and not me. Where can I turn next when my husband simply doesn't understand and is constantly belittling and criticizing me??
Moose the best thing would be if he could talk to others about it. He'd probably be more supportive or at least a little more understanding if someone else has similar experiences to you and he hears their story.
My mariage suffered much from lyme so I feel for you. I do remember reading on here somewhere about an online support group for spouses.
Loribelle
Frequent Contributor (1K+ posts)
Member # 6293
posted
Moose - I was thinking along the same lines as Sven... It would be great for your husband to join a support group for families.
Also..... do not get so lost in your own 'thing' that you forget your husband. He is definitely going through his own set of troubles - related to your illness. You should try to understand that his pain is as real as yours. His needs are not being met. Once you understand and acknowledge that, and empathize, he will begin to want to understand you as well.
Absolutely I am not trying to make you feel guilt or shame you. I am, however, trying to point out to you that the spouse who is sick is not the only one who suffers.....
Take care of you but please do not forget... I think your life will be better when you open your eyes wider.
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![[hi]](graemlins/hi.gif)
Thanks so much for your quick support everyone! The "oops" and then living with it just caught me for a minute, and I needed to hear all that: to be reminded that "Nobody is perfect." (Thanks, Heather.) To be told "You'll find the balance." And "It just takes time." And "Chill!" (Thanks, Lymetutu.) ![[loco]](graemlins/loco.gif)
There's not a question of fault; it's excess baggage. Yes, probably from childhood, like not doing well on a test and seeing the red marks saying "wrong" "wrong" "wrong". Maybe I should change my terms ("I'm doing worse") or let go of what "worse" conjures up, translate it into different feelings. Or letting it be OK. Maybe "worse" isn't even a negative. I learn the most, and re-asssess priorities better when "worse." So "worse" can be "better," an opportunity. 
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
but please do not forget... I think your life will be better when you open your eyes wider.
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