posted
I feel bad and find I'm whining too much. My husband is tired of hearing it and evidently so is my best friend. Both have let me know that all I do is talk, think and bellyache about my pain and frustration.
I'm going to try hard to stop this as I know it can become too self-absorbing.
My friend told me I should get out more, get dressed early every day before work (I work from home) and concentrate on something else.
My husband told me I'm better off than his cousin who has lupus so I should count my blessings.
I know you guys will understand when I complain or need to talk about this disease, but the rest of the world wants me to shut up about it.
So, I'm depressed and just feeling sorry for myself. When I shared the letter to friends that was passed around here last week, my husband said it was proof that I'm fixated on my illness. My friend said, in a rolleyes kind of voice, "where the heck do you come up with this stuff?"
I think I'll just pull the covers over my head, shut up and go to sleep. Thanks for letting me vent. Posts: 867 | From PA | Registered: Jan 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hugs tothepoorhouse- I just wanted to let you know that i do understand.
My mom ignores me when i talk about lyme and rolls her eyes too.
my dad said to me today that since im out of work that he wants me to look into starting a home based business so it will give me something to do during the day to stay active.
The reason they dont understand is because we dont look sick....they cant see how much pain we are in and they just dont believe us.
hang in there, vent whenever you want to.
We are all hear to listen.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Poor Poorhouse.
I know just how you feel.
Did you know a diagnosis of Lyme or any other serious illness can actually precipitate a post traumatic stress type disorder?
Breast cancer patients, for example, are expected to take about a year to stop being absolutely fixated on thinking about it nearly every second of the day. And stressing about it, and worrying, and what if this, and what if that, etc etc. ???
I'm a year post-diagnosis, almost, and find myself still thinking about it quite a lot. Part of it is the need to read everything new and educate ourselves all the time, as so little is known by the mainstream about Lyme.
Your husband and friend could try a little more empathy. Sheesh.
My friends were always very understanding, but I never could imagine the idea of a husband, so have no advice on that one! Sometimes men get to feeling that they ought to be able to "fix" things and he may be frustrated that he hasn't been able to "fix" you, is a thought. Perhaps someone could point you to some articles that would accurately describe how you're feeling?
Hang in there. Vent away to us!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
They feel frustrated too because they can't fix it for you, and lets face it, this stupid disease does dominate our thoughts. We do become very narrow in our mental horizon.
For me it helps to go to work each day and focus on something else.
Also, when I was on homeopathy, the doctor was giving me something for my emotions and it was really good stuff. I felt positive and upbeat through it all.
I only quit the homeopathy when Rheum. Arthritis was diagnosed and I became focused on it. I'm now looking at the extreme measures of root canal tooth extract in an effort to get well.
Once I know the bacteria source has been dealt with, I intend to tackle the bacteria itself more aggressively and may well do it with the homeopathy. That stuff created one MAJOR herx reaction.
It is great to come here where we can talk endlessly about our illness and debate back and forth about which treatments work and which don't and what should we try next. But with our healthy friends and family, we should try to step out of our small, illness based lives and take more interest in what is going on with them. If the mind has the capacity to heal, it must also be able to keep us perpetually sick if we dwell on our illness too much.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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'If the mind has the capacity to heal, it must also be able to keep us perpetually sick if we dwell on our illness too much'
Shame on you !!!!!!!! you sound like too many doctors, it's not our minds keeping us sick and you must know that by now.
Positive thinking has its place but for someone who is not so sick they can go to work each day to tell someone stuck at home in this illness to take more interest in others shows a sorry lack of understanding.
I'm glad you can go to work each day and focus on something else but please don't tell those who can't how they should be feeling, you never know what next year will bring.
Posts: 51 | From England | Registered: Oct 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there poor house,
I understand quite well where you're at... Try to understand that the depression,tears and manic like conversations you have about your disease is part and parcel of the disease.
My wife, cousins, family and friends did get turned off and accused me of being OBSESSED with my disease...instead of understanding that the disease was obsessed with me.
They were supposed to be my sounding board...but they would tire easily whenever I went too far with my explanations, new info, remedies...etc.
I can only hope that you'll come here and discuss or vent whenever you need encouraging responses.
We, know what you're going thru more than anyone around you...and are best qualified to help. While I don't quite agree with luvs2 mind over matter approach...cuz I've always been strong minded...and still fell into PTSD as far as this disease is concerned...which has been attributed to perpetuating the disease/immune cycle, in most chronic illnesses...
This dang disease persists whether I think positively,negatively or not at all about it.
Crying jags,depression,anxiety,rage,bi-polar disorder...etc are all linked physiologically to tbd's. SSRI's do give help to some but not without treating the disease as well...and finding the right SSRI can be a long road.
I do not understand luvs what you mean when you say, once you determine the cause of the disease???
Uhhh...IT's a TBD....maybe in your case it is not!? If you believe you'll get better with alternative methods...well GOD bless and good luck.
If you're positive for HLA B27 then you do have RA., and possibly not lyme disease...but I would be very leery about using the immunosuppressant drugs they give out for RA...especially if you have had a diagnosis of a TBD as well....they(the ducks)gave me those before I knew what I had and they dang near killed me....
They told me I had ankylosing spondilytis,post polio syndrome and PTSD...and dang near killed me treating the wrong diseases.
Elinor is right about those of us that can't work. She might have been a little easier on you luvs, but I understand her frustration/anger.
I get so fatigued sometimes(most days) that I can't even shower without being tired...
I'm glad for you luvs that you can work! Perhaps you don't have a TBD at all...hope you don't. I hope you don't get where some of us are either cuz you'll probably want to eat those comments you made about positive thinking.
Nuff said... Hang in there...zman
[ 05. April 2006, 09:53 AM: Message edited by: lymie tony z ]
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
This is an interesting topic. I think the confusing thing about lyme is the neuropsychiatic issues it creates.
No doubt, my personality has been altered. I am less wide-eyed and boyant, more depressed, suspicious and sometimes angry. (This is new for my family).
I am obsessed with the disease and talk to everyone about it. In the grocery store, I see people I barely know and when they say "How's it goin?" I lauch into the whole boring thing...
Part of me does this cause I am so shocked about what happed to me with this disease (undiagnosed here near lyme,ct),
The other thing is maybe the persons eyes will light up and say..."Oh, let me tell you about my sister/brother/dad etc "
and then maybe they will say that after a couple years of treatment their loved one is in perfect health and put it all behind them.
No doubt, I have developed OCD and major depression.
Elinor--I can see how you may get upset about the mind body connection not being true for lyme.
BUT...I just finished reading "Anatomy of Hope" by Dr. Groopman. He is an oncologist who has worked with end stage cancer and AIDS patients.
He has seen people with metastatic late stage cancer who had less than 1% chance for recovery move to complete irradication of cancer over time.
He found that patients who have an inner hope (a future picture of themselves as stronger and healthier person) do better than those who do not.
He also went through his own horror...a back injury that led to dumb ducks who operated with promises of pain free living, making it much worse. He suffer in excruciating pain for TWO DECADES!
He created a small world for himself where he didn't move very much (trigger major pain), and didn't do very much-afraid to make this hurt.
Then he saw an expert in back injury, a doc who questioned everything he belived about his suffering. "You are worshiping the volcano of pain." he said.
At first, Dr. Groopman thought he was just another quack--he didn't trust anyone.
The new doc explained that the body and mind keep a memory of pain in each cell and FEAR of enduring that again causes us to change everything we do to please the volcano god-and shrink our lives.
He said the body can relearn how to be well. He gave Dr. groopman a new picture of how his life could be-with pain free full move3ment.
He put dr. groopman through major physical rehab that involved excercises he would never imagine doing--and was terrified.
Pushing through initial limits caused the pain to worsen. But over time, the muscles and nerves are retrained to the "new normal".
Once he made the choice to stop worshiping the volcano and imagine himself in a healthy state--the universe and his body rallied.
Eventually, Dr. Groopman recovered the movement he had lost for 20 years.
He has committed his life now to understanding the connection of hope to healing...the chemicals triggered when we decide to fight, grow and heal.
I loved this idea. I continue to fear my painful disease and be obsessed with it, but I have begun to visualize myself living a large life-a life worth living and worth fighting for.
No distracted husband, bored friends or dumb ducks will get in my way...
Sorry so long!!! But this group is part of my healing and I love you all for being brave with me.
-------------------- We are spiritual beings on a human journey...
It's hard when people don't understand how you feel.
Would you consider taking any medications for depression?
My kids have been sick for 7 years (possibly since birth) and I went on Zoloft for awhile. It did help me a lot. I stopped taking it when I started taking Trazodone for sleep.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
Thank you all! And know that I'm right there for each of you too!
I do think we have to find a balance to survive. I think I do let the disease live my life sometimes, rather than me. I'm going to work on the mental aspects of taking account of all of the good things in my life.
I also like the idea of concentrating a bit on the future. Sometimes this battle is so daunting but I can't let it rule me or hurt my relationships. If I can't fix the lyme, I can at least review the way I've been dealing with it in a negative way.
I do believe in the power of prayer, positive thinking and yes, I am already on Zoloft as a mood elevator. (Maybe I need more?)
I love you all........I think I'll soak my feet for the pain, then paint my toenails to make it NOT about the pain, but a fashion step forward.
I'm going to try to think of the glass half-full whenever I can.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
big, BIG, B I G Apologies from me please.
I re-read my letter and it did sound cold. Not what I meant at all. I'm so sorry.
My friends and family have also politely expressed an exhaustion of hearing endlessly about Lyme disease, so believe me, I haven't been the "social butterfly" through this disease. I was out of work for 6 months myself as a result of the disease.
I noticed during those days that I was in more pain when at home and less pain when I got out around people. Not that it is a cure but it did help.
I am very fortunate that my career has been in insurance and I am able to sit at a computer and talk to people. There are days I can barely drag myself in, but once I'm working and talking to people, I kind of forget the disease (until I get up and move) and I do feel better.
In the very beginning of my illness, I had migraines, brain fog, short term memory issues. The homeopathy cleared all of that up and my only symptom since then has been joint pain. Good days, bad days.
Believe it or not, the Rheumatologist who ran extensive tests, the results do not mention HLA B27. LLMD did get a positive Lyme test and I live with ticks so I am at risk.
I totally understand the fixation on this disease as I am living with it too and the symptoms seldom let you forget. What I meant to say is that mental distraction of any kind that takes us away from the illness is a good thing. Not a cure.
Tony Z, I'm strong minded too and I also got sick. Please believe me, I wasn't advocating the "Positive Thinking as a way to Healing" position. We really are sick. I was pointing out that if the mind can affect healing, then it stands to reason that it can also prolong illness.
Again, I am truly sorry. My message did not sound the way I intended. Please forgive.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Luvs............ truly a great and well stated response. Thanks for that .......... I was following this thread and wasn't quite sure I wanted to jump in the middle of a controversy ....... but I must say you really handled this well ........... I will learn from this.
Thanks, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
tothepoorhouse...
I am sorry your family is so unsupportive...
When I get a new symtpoms I usually tell people especially my mom ...
(because when I go to the dr if im not expereincing the symptom I usually forget about it)
I think that when your sick to the point your disabled and you are stuck in the house most/all the time...
well at least I knoe I am constantly trying to overcome symptoms to do everyday things I need to do to function at a basic level....
So when I talk to people this is what my day consists of but I do try talk about topics in their lives too
(their jobs, news, projects they are working on, their health issues etc)
My whole family is really supportive... they know I am really sick even though I no longer look it...
My boyfreind left when it became apparent I was goingto be disabled long term.
I guess the ones who werent supportive are out of my life and I am glad... who needs the stress of unsupportive people.
I have a cat and if no one else understands something he does.
I really do think that visualization can be helpful in something...
Seeing myself well with my life back makes it more real...the hope of recovery more complete.
posted
I'm so with you, Tothepoorhouse, and everyone else in this thread. My family and friends try to be supportive, but they mostly can't figure out how to do it, and rarely call me.
But I am sooo lucky - my spouse is an incredible listener. Sure, he glazes over sometimes, but he lets me go on and on, and is willing to get passionate with me when I feel worried, wronged, or ignored. There's a special place in the afterlife for that one.
Even so, I can't tell you how helpful reading and posting here has been for me. I feel that PTSD thing goin' on, and I'm accepting it as part of the disease process.
The positive thinking thing is fabulously interesting to me. I used to be one of those "Your Mind Can Heal Anything" people. I'm a Reluctant Cosmic Reiki Master, for heaven's sake!
The mind body connection is absolutely important, but in my experience, healing miracles - even small ones - just don't seem to be available to everyone all the time. I've seen tremendous inconsistency over and over, with others and myself (obviously).
After 12 years of dealing with healing and illness, I now believe that those of us with super challenging diseases like Lyme must have signed up for a PHD level life lesson before we came this time 'round.
When this is the case, my theory is that there will be no easy fix, no matter what. That doesn't mean I shouldn't try and keep looking, but I've finally become okay with the idea that not all things can be fixed. Hard for me.
But then again, there are days when I chuck all the cosmic theorizing and decide my life just sucks for no reason. Luckily, I get bored there after a few days, and wander back to a more cheerful frame of reference.
posted
I'm so glad to see this thread and all the posts. I have been sooooooooooo depressed lately that I don't know what to do. A couple of months ago I was starting to feel good enough to apply for a couple of jobs and even went to an interview. I didn't get it and now am very glad because I've had a major relapse - I would have been fired within a month because of calling in sick or coming to work and being totally non-functioning.
I think that's what's the hardest right now. Like it was all a cruel joke and now I'm almost back to square 1.
I already take an anti-depressant - Wellbutrin 300mg and don't know what else to do. My husband also is tired of hearing it all even though he doesn't say much about it.
It seems like I do get obsessed - but when pain is a constant reminder - how do I not?
-------------------- Pam Live well. Laugh often. Love much. Posts: 53 | From Ohio - south/southeast | Registered: Oct 2005
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geniveve
Unregistered
posted
oh yeah, i understand completely. my husband calls it my "disease of the month" and always lets me know that i'm faking it.
we had an argument over the lawn just this week. the back was about 6 inches tall and needed mowing. he does not do yard work.
he told me since i was "retired" and not doing anything there was absolutely no reason i couldn't get off my but and do this yard work. anyway, big argument.
so he went off for a two day hunt with friends and i was determined to do yard work. DUMB< DUMB>>>
i mowed the front and edged it, sweeped the grass up. the next day i took at least 8 hours to mow the back even tho it's not that big. i just was physically exhausted.
so who suffered? stupid ole me that's who... my neck is absolutely killing me and my lower back is out.
all because i was so stubborn and let him push me into doing something i just could not do.
don't feel bad, i really truly understand. anytime you ever want to vent, just send me an email.
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I totally understand where you are coming from. I really, really do. After all, I come on here and complain all the time it seems like!
This illness is so horrid in that it not only affectes us physically but mentally as well. I complain to my hubby, friends and such all the time. I guess I am lucky in that they just smile, give hugs, words of encouragement. However, I do know that they too get sick of hearing it!!
Have you looked into counseling? Thats helping me out quite a bit. Gives me a chance to complain to someone else and work through those issues without burdering my hubby or friends too much.
Hang in there. Come here and complain anytime!! Many hugs to you!
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
My heart goes out to you who have such hard, sad stories of depression. I've been blessed with great support because many in my family have lyme etc. so we all are supportive. (we could have our own support group)
I do find that since I go to a "hospital for special care" now for PT I can count all my blessings more. There are so many hurt from tramatic accidents, children too. Their strength, humor is inspiring...I have nothing to complain about. It is all relative depending what each of us are exeriencing.
So those that feel depresssed, it's okay to feel that way. You are the only one who can feel what your feeling, no excuses are required or needed here.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
ttph,
i hear ya. i know it helps to let it out here because the people in my life either do one of two things.
1. They say that they do the same thing or are the same way...which minimizes that it's lyme
or
2. They say something about all the time i have been on anti-biotics and will i ever get off of them or do i have to be on them for the rest of my life -- which is way to poor a prognosis for me.
vent and vent and then let it go when you can
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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First off when you are in the throws of Lyme there IS nothing else you can think of b.c you are suffering so much. I think that is the part healthy people HAVE NO CLUE about...
I can be feeling so badly and be going about my busines like everyone else where as if someone healthy was feeling like me they would be in bed.
So for someone to just suggest you take your mind off something that is so physically debilitating is crazy.
The second part of it all IS the Post traimatic stress of it all.
Even though I feel better than I did in my horrid Lyme years, I still have a daily underlyng fear of going back the way I was, and ANYTHING such as a cold/flu etc that triggers one of those aweful feelings from the old days sends me into complate panic mode that I am going back there again....
Its hard to say how to balance all this...
I do meditation excersises, and have done some healing work with a shaman as well as spoken tp a good counselor. But no matter what only those who have literally walked in our shoes can understand the day to day struggles...
I am sorry your family has not been as supportive lately.
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