Profound Loss of Self....

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+Lyme
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Date Joined Apr 2009
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   Posted 7/18/2010 11:46 AM (GMT -6)   
I do not know how to describe it -- maybe others of you can, and I"m sure we've discussed it before.  Right now, this troubles me the most, because it seems that if I hadn't lost my self somewhere, I'd be better able to deal w/ everything else this disease entails.
 
First, I think about my self too much. It seems as if we all do.  I feel like I might feel better mentally if I could get past this, but I can't.  I think about myself too much, yet mostly it feels as if I'm grieving for the loss of my self.  I don't know where I went. I don't know what happened. I don't really know who I am anymore.  I search and search and get nowhere.
 
The grief and the loss feels profound. The feelings of loss are often unbearable.  This horrible depression and grief (which we have discussed at length) generally came around the same time of day,  each day. Altho it often started near the end of my work day, and I was grateful for that, and I was able to be relatively normal at work (tho they don't know who I used to be....), now it has started sometimes at work and that scares me.
 
I had been able to keep this part from my boys -- they know I have lyme, but like everyone else, do not understand all that it means.  I have been spending some time w/ them on most Saturdays -- usually to eat and watch a couple shows, and I have felt OK and enjoyed myself, inspite of the exhaustion.  Now it is creeping into this place that used to be 'safe'.
 
I went there OK yesterday after having gotten a good haircut.  Then I immediately realized my front tooth was badly broken and it looks horrible and I don't even know how it happened. And I've already used my dental insurance limit for the year and am in debt to the dentist.
 
Anyway, obviously this is not just about a front chipped tooth. There is so much about myself that I hate and  who I don't know.  They could not understand what happened to me because of a chipped tooth.
 
I can't tell them everything I feel. They do not understand the disease and the things that I feel -- the grief and the depression and the pain -- it would hurt them.  I am now just a negative person who seems to be feeling sorry for herself all the time.  I don't want to be this person.
 
Don't misunderstand -- they do not accuse me of this -- they just dont understand how having a couple of things wrong causes me to lose it and feel totally hopeless.  And it is me who knows I have become a negative person who feels sorry for herself all the time. I hate this person. I want rid of this person. I can't stand this person anymore.
 
I CANNOT GET A GRIP.
 
Will we ever be able to find ourselves again?  The loss of self. That's what this is about.  We could write for hours and hours (and have) and yet not fully describe it.
 
It feels as if that tiny tick literally sucked the life out of me.  And he broke me.  
 
(and yes, I am in treatment for depression)
 
Does most everyone feel something like this?


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 7/18/2010 11:56:20 AM (GMT-6)


Jeminij
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Date Joined Dec 2005
Total Posts : 1336
   Posted 7/18/2010 12:09 PM (GMT -6)   
I have been where you are. When I was in the depths of this illness and going through treatment I felt this way. I journed a lot. It really helped get the feelings out. I wrote a lot of goodbye letters because I didn't think I would make it. I didn't think I would get through it. I was depressed and it was awful, but the good part is that with treatment that part gets better too. I had actually journaled that I had lost my spirit. I felt like an empty shell with nothing inside. I only felt sick and couldn't get outside myself so I know what you are saying. When I got well I had a spirit symbol tattood on the back of my neck and it is a reminder that not lyme or anything can take me away again.

I took it one day at a time. Sometimes one minute at a time. Just know that this is all a part of this horrible illness. It isn't you. It is the bacteria and it is causing you to feel this way and you can get better from you and you will find yourself again. I promise you will.

+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/18/2010 12:54 PM (GMT -6)   
Thank you, Jeminij, so much. You made me cry -- the way that you felt.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1336
   Posted 7/18/2010 4:35 PM (GMT -6)   
I know you will find your way out of it too. I just kept telling myself that it wasn't me and that it was lyme and when the lyme got better I would get better too. It really helped. I never returned to that state again even after relapsing years after staying well so for me it was all lyme related and it does get better and I want you to know that. Maybe you could start a journal too. It just helped to get it all out when most people couldn't understand.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 7/18/2010 6:23 PM (GMT -6)   
I also want to thank you jemini.  I feel like I have alienated myself once again from friends and family and can't get out of this funk.  I try and cover up and I am so sick of having to explain my moods to people.  if they only knew what it felt like to struggle to get through each day.  I am hopeful that I too will be well one day.  It's the only thing that keeps me going, that and my two wonderful boys and husband.  Lots of love.

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 7/18/2010 7:28 PM (GMT -6)   
Wow.  Here you can get information more on target than 90% of Psychotherapists will give you.
 
There are some really skilled LLPsychotherapists, perhaps you can reach out to one?  Where are you guys? Maybe I can help.  Feel free to PM me.
 
Tracy

bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 7/18/2010 7:29 PM (GMT -6)   
Well you sure did nail that one, Lyme+

It's the part of the whole scene that really makes the whole scene. It is the biggest mind bender. We exhaust ourselves lookiging for answers. Try everything and then beat ourselves up because EVERYTHING didn't work.
then we label it "depression" My Dr. in Seattle who origionally diagnosed me (correctly and completely) told me there is something about this disease that attacks your "will to go on" it keeps beating at you and beating at you.

We talk about brain fog like it is being foggy but it is lack of oxygen in our brains or the ammonia thing poisioning our brains.
i couldn't imaging having children. My Mom would have had to take them if i did. Only now my Mom is gone from leukemia but I know know it was lyme induced. this is the other scairy part. you see people around you and they have all kinds of problems but don't appear as bad as you and you know inside that it is lyme. This thing is everywhere and it is ripping apart the basic fabric of our society family by family.

don't beat yourself up anymore. You have to get back in the game and take what you can get in terms of "normal" moments. After a while we loose our point of reference as to what it is to even be well. we get a pain free day where we can actually sit up in a chair and we feel this overwhelming sense of gratitude for that one moment. It's like acid some days for me.
I just can not believe what is happening. do you know for 15 yrs I was batteling Hep C trying to figure out why other hep C people were not in so much pain and exhaustion. Now I know for 9 months that it has been a life time of lyme I really feel like I took a bad tab of acid and can't turn it off. I felt just as sick before I knew but now suddenly I am seeing it everywhere like it is this ENTITY invading people's systems and literally ripping us to shreds.

The fact that we live in the good ol USA and can't even get insurance to pay for testing and then have to fight over whose testing is correct is the real most unbelievable phenomenon. As we watch them all fight over health care reform , seeing how clueless they all are that for sure is enough to make you depressed and suck the life out of you. We are all drowning and they are describing the water. ( remember Jack Nicholis in "As good as it gets")

You keep on expressing how you feel ..lyme+ .. it makes others feel they at least drank the same punch and we will overcome.

meantime if you email me .I got this mazing Noni from Kuai that gave me 3 good days earlier this week before the monsoons came and my migraines kicked in.
hep c , lyme
Dad has lyme


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/18/2010 7:49 PM (GMT -6)   
Thanks, Bucci. I may email you yet.

Often the 'monsterous' part passes, yet you still don't feel like you're free of those horrid chains and don't know where your Self went.

I've been meaning to address your Hep C. I am very concerned for you. I had a friend/ex-coworker who died within a few months of dx. I dont say this to alarm you, but to emphasize the seriousness and the weight you must feel.

I also have a bro-in-law who had it for quite a few years. He was always very quick to mention that he could die of it -- as his family kept expecting the same from him as from when he was healthy. He cured himself a couple of years ago, and he says he is definitely cured. He gave himself shots of interferon, but I do not know anything about frequency or doses. But, w/ not enough help out there, he took it upon himself to fight it, and he won.

I am anxious to see how my treatment w/ my new doc goes. He's an infectious disease Dr who understands Lyme -- well, as much as anyone can. And he has no problem w/ prescribing long term abx, a life time worth, if needed, he says. Right now I have a 6 mo script of Augmentin. Within the next 2 weeks, we will start babs treatment, whatever that entails. So it will be interesting to see how that goes, w/ my insurance covering him and now whatever he prescribes. If I am ever denied any treatment he prescribes, I will take my ins company to task.

I am both flabbergasted and saddened by those who are denied proper treatment by their insurance. I am positive this must be illegal.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 7/18/2010 8:05 PM (GMT -6)   
Right on. email any time. this guy sound good. you just keep watching the movie and let yourself disolve. This is the ultimate practice of Zen having lyme. I mean that seriously. we can get angry and we can cry and we can scream till we are on the floor in a puddle of our own tears hysterically laughing. That is how far this disease pushes you. when ther is nothing left to talk about or figure out or make a meaning or diagnosis out of ..then we go for the ultimate transformation. This is not a disease .....it's a spiritual practice.

yes I had the inteferon treatment in 2005. I lasted 10 weeks before it almost killed me. It made the lyme worse is what I was told by lyme doctor. Every thng that could have gone wrong as far as side effects with inteferon went wrong. from the heart tho the thyroid to the ACTH in brain to no adrenal function .......it was disaster but seems like another life time ago (5 yrs ha ha) Hep C is a cake walk compared to lyme believe me. The hard part about hep c too is t is your liver and amonia to your brain so the darkness and depression and breakdowns is there too like with lyme.

keep us posted about your treatment. I kind of think he is on to something with peple being on antibiotics for rst of life especially if it has been so far gone and long time in system. What does he do for pain???
hep c , lyme
Dad has lyme


Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 7/18/2010 11:20 PM (GMT -6)   
+Lyme, I am glad you shared your feelings here. I often feel similarly and have thought how nice it would be to have a forum somewhere on the internet to voice those feelings. These are things I don't want to burden my family with, that my friends won't truly understand (except the ones with Lyme, and for them I present a positive face), and that I think I will only be comfortable voicing to strangers who are or have been there. Who but one of us could understand the complex gnawing away at our lives that Lyme has levied? For me it's like a slow drip pushing ever further into my mind and my body, making it impossible to be who I was, to live as I did, and to anticipate a future of hope and promise. Any anticipation of tomorrow that isn't sullied by an undercurrent of fear and resignation feels like fantasy; it seems so unreasonable.

I think it's okay to be down sometimes. Even if there isn't a brain chemistry issue, there's a lot of loss with Lyme and grieving feels normal. I hope tomorrow is a better day. Meanwhile, it is a comfort to know someone understands. You articulated it so well.

Rose
I have Lyme; it doesn't have me.


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 7/19/2010 1:22 PM (GMT -6)   
+Lyme, I'm glad you started this thread....it made me face some things about myself more honestly. It does seem as though I have become horribly self-absorbed since becoming ill, maybe this is just a survival mechanism but I don't like who I've become either!

Sometimes it feels as though I'm caught in a whirlpool of diseases, spinning round and round and being sucked deeper and deeper every day into some sort of vortex of chronic illness. No matter what I do I can't get out, no one will be able to rescue me, and I have to say goodbye forever to the active, healthy person I used to be.....this depresses me more than I can express.

Maybe the reason I won't let go of my job (I still work part-time remotely even though it is sometimes difficult because of pain/brain-fog/other nasty symptoms) is that it sort of "defined" who I am as a person, at least partially. And I imagine somehow that as long as I'm still "working" I'm still at least partially able to be "me". Is that it??

I do feel for all of you on this thread! And I'm glad we have a place to post where people do understand.

JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 7/19/2010 3:46 PM (GMT -6)   
I think all of you have done a great job of expressing what this does to you. I feel the same way - holding on to a part-time job because without that, who and what would be left? I can't be the mom, grandma, wife, anything that I envision. My family does not understand, despite trying to explain, having them read articles. My hubby comes closest to understanding, thankfully; I don't know what I would do it he didn't at least try.

I think many of these feelings come with the grieving of having a chronic illness that is so unpredictable. We never know when and where this ugly thing will manifest. And all from a miniscule tick - something we must still be constantly vigilant in protecting ourselves from while be equally vigilant in trying to care for ourselves.

It is too much.

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 7/19/2010 5:22 PM (GMT -6)   
Lyme,

I did not read all of the posts here so forgive me if this is repeated, but did you have your adrenals checked yet? If this depression comes on at the same time of the day, it has to be something physically wrong, like adrenals or thyroid. I'm leaning more towards adrenal problems.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/19/2010 6:40 PM (GMT -6)   
Hey CajunGrl -- long time, huh? I know, I know! Those danged adrenals! I KNOW they are a part of this! Getting someone to believe it is another story!

Labs show my thyroid is definitely low, meantime, LLMD wants me to go back to family Dr w/ that, yet I will be requesting that he treat it. I am also positive that my adrenals are low. My previous LLMD said they were, and I requested that my new Doc test them, however, I don't think he did.

A dog park friend loaned me her book about Adrenal fatigue and altho I realize books aren't the answer, I recognized every symptom and tested as 'severe'. I've been a total worry wart about it ever since, and mainly because of the change in my body shape and the horrible increase in girth.

Plus, I have committed ALL of the dirty deeds leading to adrenal fatigue. Pushing yourself when overtired. Been hypoglycemic for many years and have too often relied on my adrenals to signal more sugar to be released. Wore them out, I think. Plus, I have relied on coffee and cigarettes to get me going and keep me going when I am exhausted, suffering lack of sleep, or stressed out. Sometimes alcohol, too.

Still, from what I read in this book, there is not a specific treatment for this, beyond healing yourself w/ diet, rest, sleep, exercise, etc. I am taking a natural bovine adrenal supplement I got from my Chiro, but have not noticed improvement from that, still I am taking it.

Besides a certain diet, I believe the only or best treatment for low adrenals is the same as active EBV (which I have) -- more sleep, stress reduction, and a nutricious diet.

So, I"m figuring that if I would just freaking take care of myself, along w/ Lyme and thyroid treatment, my adrenal problems may resolve.

PLEASE tell me if you know otherwise, OK?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/19/2010 7:04 PM (GMT -6)   
Your words touched me deeply!

-Rita-
Regular Member


Date Joined Jun 2006
Total Posts : 60
   Posted 7/21/2010 12:30 PM (GMT -6)   
I just heard about this today from another Lyme friend, there is apparently a really good book coming out that deals with what you are describing. This has to be the way most people with chronic illness feel, regardless of the source of the sickness. See what you think of this book...How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. From what I read on Amazon.com I think I am going to order this when it is available for purchase.


DX in 1994 - SLE, myositis, firomyalgia, sjorgens, raynaud's, elevated ANA, lymphadenopathy.
Postive IgG and IgM 2009.  Daughter and son also have Lyme. 
 
 

Post Edited (Marika) : 7/21/2010 12:43:44 PM (GMT-6)


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/21/2010 9:33 PM (GMT -6)   
Thank you very much for this, Marika! I will look for the release of this book!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Traveler
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Date Joined May 2007
Total Posts : 35853
   Posted 7/22/2010 1:59 PM (GMT -6)   
When I read these types of posts, it always breaks my heart - I know these feelings all too well & I am sooooo sorry that others are feeling the same. Special thoughts of comfort to all...

+Lyme,
It sounds like you've been following me around!! I have done all of those dirty deeds as well!!! However, I am taking a homeo tx for adrenal fatigue/exhaustion & am feeling better!! As a mater of fact, I was wondering last week just how much my adrenal med was working while cussin' a headache - wellllll, the headache went away within 20 minutes of taking my med!! And I really don't feel like it's taking both hands to just drag my butt around the house anymore!

From what I have read, there is no reliable test for available for adrenal fatigue, only for adrenal failure & I'm really trying to avoid that!!!

If you are interested in which product I'm using, I'll be happy to share!

The 'loss of self' issue is something I have felt severely as well. I rarely speak of my hardest times, because it makes me feel like I'm whining ((roll eyes)), but I have dealt with bouts of some pretty serious depression as well. I've been battling with it again this spring/summer, as life has become a challenge once again for me. :(

It's no wonder that we become absorbed with ourselves & our treatments, since there are so very few who even understand what we are living with, much less how to help us get through this insidious illnesses. It takes up so much of our time reading & investigating different avenues of healing with so many different docs...

Okay, no more random thoughts left - giggle!
Even the mightiest oak tree was once a little nut who held it's ground!!! May we all find peace along the journey to find healing.
Trav


Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 7/22/2010 4:05 PM (GMT -6)   
The way I was tested for adrenal function was via an insulin tolerance test. It was kind of an ordeal. On an empty stomach, in a doctor's office with a nurse in attendance the entire time, I was hooked to an IV. Blood tests were taken every ten minutes at first, more frequently as the test progressed. The IV administered measured doses of insulin, creating physical stress. I felt fine, felt fine, felt fine, and then suddenly just crashed. They'd discontinued the insulin just before that based on blood test results. They then measured the adrenal response to this physical stress. At some point I had to drink sweet juice. My memory of that part of the test is kind of hazy. Because I did have some adrenal response, I was not diagnosed with Addison's disease (adrenal failure). However, the response was very slow and weak. The endocrinologist called it borderline adrenal insufficiency. Subsequent reading suggests to me that another name for this condition - not a medical term apparently - is adrenal fatigue. Traveler, I'd be interested to learn what homeo tx you are taking for that. I take a tincture from the ND, but maybe there is something better.

Hey, I can relate to the "nut who held its ground" sentiment....

Rose

Rose
I have Lyme; it doesn't have me.


rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 7/22/2010 6:19 PM (GMT -6)   
I too feel like crying for you for me for all of us. Life is a series of losses, we grow up then we slowly begin to lose, memory is not as good can't ride a horse like we used to etc.. Lyme seems to make the normal process of aging much more non-subtle and faster. I think journaling saved mi life literally at some times during this journey. I think this place is wonderful too. With the exception of mi one friend I dont talk about this. the others know but I prefer to NOT refer to it. they know plans are only ideas that may or may not materialize depending when the day gets here how i feel. Lyme plus I used to ball for like no apparent reason. I always felt better afterwards. I also used to rage, gotta watch this one. Don't get mad but i will pray for u. I have become very close to God (after quite an anger period) and have come to the conclusion alone I drown with god I am ok no matter what and there are reasons for all things., .
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