posted
Today, I told him I read a blog from someone with lyme disease and I told him I totally understood it.
The message was, the worst part of having lyme is that "you don't die from it". I told him it's how I'm thinking as I can't get control of it even though I've done everything the llmd has told me to do.
He got so mad at me and told me I have to keep fighting.....I just don't know if I have the strength or will to do that.
I also told him, some do die from this, but they are usually from other reasons they don't connect to lyme. I promised him I'd never consider suicide...I don't think I'll need to.
My body continues to fail and the physical pain is so bad. Also, now my brain is sending bad images to me of things that scare me. I know it the lyme but I'm so scared all of the time...when I close my eyes, I see horrible, sad, scary images that make no sense in my safe world.
And I know I'm not crazy and he does too. He can't understand it, though he tries.
Sorry for the rant...life is precious, I know that. I just wish I could get 1/10 of my precious life back ......
Ok, I'm all right. I just needed to get this out of my head tonight. Thanks dear friends. Of all others, I knew you would understand - it's not us, it's the chetes making us pained and crazy.
I hate them and what they have done to me and my life. Posts: 867 | From PA | Registered: Jan 2006
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please hang in there. I have been and probably still am where you are. It stinks. Try to be positive and enjoy the little things in life.
For me, just a smile on one of my children's faces keeps me fighting.
It is frustrating for you and anyone that loves you. My whole family is very supportive of me (and I'm talking, mother, father, husband, kids, nieces, mother in law, father in law, sister to name a few} If I didn't have them I don't know what I would do.
Keep your chin up and keep fighting this nasty disease. Do not let it claim you, you claim it.
You are in my thoughts and prayers.
Karen
Posts: 151 | From Massachusetts | Registered: Nov 2006
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posted
Poor House, It's ok to rant. We all need to do that, especially those of us who are so very ill with this awful disease.
I never knew how ill I was until I was diagnosed and started researching. I actually thought that all people felt this way and I was just a weakling who couldn't cope with life. WRONG!!
I empathize with you as I am very new to treatment and know I have a very long row to hoe, as the saying goes.
I like your screen name, by the way. I am learning that this disease is going to put us in that same poor house very soon.
I am not going to invalidate your feelings by saying that we are all going through it but just know you are not alone. It's the stupid chetes in the brain that make us think things we wouldn't think if they weren't in there wreaking their havoc.
Hang in there and keep talking. I tend to internalize everything and I know I should just let it all out. You are doing good talking to your husband and coming here to vent. It's healthy.
-------------------- Sick and Tired of Being Sick and Tired Posts: 185 | From Colorado | Registered: Sep 2006
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I'm so sorry you're feeling this way. Hopefully you will turn a corner soon.
Your husband got mad at you because he can't fight the illness for you and doesn't want to lose you.
It's hard to be helpless and watch someone you love deteriorate. There have been times in the past year and a half my husband has been sick that I have just wanted to crawl into a ball and die myself. And a few times where he didn't think he was going to make it.
Some of those really bad times have been interspersed with some okay times. The only way for us to stay sane is to have hope that things will get better.
Anyway, I hope some good times come to you soon. Hang in there.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
I'm so with you on this, because I've battled this since 1994, and ten years was undiagnosed. Then I tried treatment, it worked, but then failed, and so I realize this is going to be a chronic, life long condition. Before being diagnosed, I was told it was in my head, I was in such pain and agony, and felt so alone. Lyme is a terrible thing, and still in my state, there are no LLMDs and no doctors will even acknowledge that I have it. I have a very positive lab result from Igenex, and of course all the terrible migrating symptoms, all starting after a "summer flu" that I thought I would die of. No doubt it is lyme, but I'm nonetheless very alone. This is such a private battle, although thank God there are websites where people can connect. In the end though it is just me and the lyme. I can tell you that hormones caused a serious "visual" aspect of post-partum blues, where I couldn't chase these awful images from my mind. I wonder if your hormones are in check? I know that lyme does a number on them. That was such an awful time. I couldn't get my brain to rid itself of these horrific images. That is now gone. I wish you the best, and please don't give up. If you give up that means I have to give up. I figure that life will get better, it has to.
Posts: 69 | From Washington | Registered: Jan 2007
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posted
Please hang in there and know it is just as scary for the spouse.
Just got back from the ER with my hubby -- to stop his tremors/myoclonus/seizure-like episodes that overdid the IV Ativan.
Right now he thinks he was in a car accident (doesn't recognize his own car) and thinks I am the "sitter" and not his wife of 14 years. This has happened before, but I always worry that his memory won't come back.
With hubby the strangest thing is that when he is confused I am always the night nurse (he has obviously been in too many hospitals.) The mind is a really amazing thing even when it isn't working up to par.
Hoping for a better day for you tomorrow.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
It is ok to cry and feel bad. Whenever I feel down I buy myself a pity party cake and stuff my face. We all have our moments with this disease, but please just keep holding on.
We all understand how you are feeling. Posts: 1603 | From ny | Registered: Aug 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I will die from lyme, if I dont keep treating it, and even if I keep treating it, the way things are going, death is creeeping in on me.
I have read people die from lyme, and I would have had I not found antibiotics when I did.
If I dont fight I die, I dont know about you, but for me, I will die from lyme.
I have had other tests done, and nothing has showed up.
Positive Igenex Western Blot was all I had show up.
So, unless I have some test come back that says positive for something else, Dying from lyme is a big posssibility if I dont keep treating, and
maybe if i still treat I will die, because things are a hell of a mess now, denied IV.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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bettyg
Unregistered
posted
hang in there; it sure as hell is not fun going thru this for DECADES on end!
ask tutu about her 46 years before being diagnosed correctly. ask me about it being 34 yrs. and 40-50 mds/specialists to be correctly diagnosed.
this is the worst i've felt in my 37 yrs. of this; 1st 20 months of abx, now last 6 months of 22 supplements including 4 RX compounded meds.
SEVERE FATIGUE now since starting supplements; in bed 3-6 times a day/night; my hours are worse than a baby's.
poor hubby puts up with a lot since i'm in bed so much, and he listens to tv LOUD due to being deaf in 1 ear; majority gone in other one due to running noisy heavy duty equipment!
have you pcp prescribe an ANXIETY pill for you; zoloft has helped me, and can't remember name of my PANIC ATTACK pills.
you stated you were not suicidal, but i'm going to include a no. i got last year when one of our members turned suicidal ok. put it away in case you hit rock bottom and feel you can't go on ok.
8-7-06 NATIONWIDE SUICIDE HOTLINE 1.800.784.2433 now please! If you are feeling suicidal, please call the SUICIDE HOTLINE. We care about you.
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posted
I just appreciate you all so much! No one understands our frustration like each other.
Betty, thanks for posting that number in case of emergency. I'm doing better now that I've cried and slept a little. But perhaps posting that number will help someone else at their wits end. Posts: 867 | From PA | Registered: Jan 2006
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
tothepoorhouse,
You do need to fight! I hate this blasted disease! It does such messed up things with our minds and emotions. Of course you're scared. I feel for you.
I found rationalizing that it was the lyme talking and not me was the best way to deal with intrusive thoughts so I wouldn't get carried away by them.
I wanted to give up a few times but never would allow it. I'm grateful for that and my doctor who recognized I was in trouble and did his best to help me.
You also need to remember how at other times in your life when you thought things hopeless things got turned around once again. Lyme waxes and wanes and we need to keep ourselves strong in the resolve department.
You really sound down and I do hope you read this and understand that we do care here. I may not know you, but you are another person going through something I have had a similar experience with.
I see my pain in your words, and I want you to know you've helped me by expressing them. Knowing others have also experienced this makes me feel not so all alone and gives me the strength to carry on. Somehow I hope that your knowing you helped me can have the same affect on you and we can both gain some ground.
Your husband is mad at you for all the right reasons. Obviously your special enough for someone to really be affected by your giving up, and that is another reason why I chose to respond to you.
Sometimes when I get down or depressed I must force myself to think of others so I can get the whereforall to fight once again. Because, in my heart I know I don't wish to give up, but my brain and my heart aren't always in the same place.
I think it is good that you expressed your fears to someone else - that was a very healthy move. And you are so right that you are not crazy! You just need to get through this obstacle.
I hope you feel better soon and find some comfort in the posts here. People really do care for you. I hope you wake up tomorrow and feel more at peace with yourself and your stuggles.
If you ever feel like this again and need someone to talk with please don't hesitate to PM me. I would listen.
Take care. Acorn
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am so sorry that you are feeling so bad. It is so hard.
My husband has been everywhere with me from "You think you have Lyme, therefore you do" to "What if I have it too?"
I am glad your husband is so concerned about you as are all of us.
In my limited experience, men like to "fix" problems. I am sure that it frustrates my husband like heck that he can't fix me just like that.
I truly believe that you have to be able to walk in my shoes to really understand.
I will pray for Peace for you and send you all of my positive healing thoughts.
I always try to think of the Footsteps in the Sand poem where when there was only one set of footsteps, the Lord's reply was "that was when I carried you".
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi to the poorhouse-
where we are is a very strange place.
i think part of what unfolds very slowly along the tx path is a growing understanding of many states of being most of us didn't contemplate when we were well.
For me, being sick used to mean 2-3 days worth of a cold. I'd never been to a hospital for anything, including giving birth, in my 43 years. Never even sprained anything, though i have kayaked and mountain climbed and hiked et etc my whole life.
How then to make sense of an illness that goes on and on and on, no matter what gets thrown at it? How to you describe 15 different kinds of pain when you've never had to explain one before? How do you come to grips with the possibility, however remote, that it is possible to DIE from this?
I mean, it is very bizarre thing that it is possible to be this sick, and even to die from being bit by a lousy fricking nothing TICK. Ridiculous, even.
If it were a disease like cancer we were facing, i think it would be easier to come to terms with what is happening to our bodies. We wouldn't feel so isolated, there would be tons more support systems, and the very thing that helps us cope, our emotional stability, wouldn't be under attack.
A short time ago, I also came to an awareness why it is that some would choose to die rather than to go on. I told my husband and my mother that, and both panicked. No need. I would NEVER commit suicide, and I made sure they understood that.
Suicide wasn't the point. The point was finally understanding just how far it is possible to fall -rock bottom- with this, and and understanding how much strength of every kind was going to be necessary to climb all the way up and out again. When you're feeling your weakest ever, that strength doesn't seem possible to summon.
Good thing, we don't have to have all that strength all at once. Down that far and low, all that is required is to put one foot in front of the other. To put aside every last thing that can wait, and every person who doesn't nourish you. Try everything that can give you peace or joy or inner silence at least, at least for a few minutes and build from there.
As for our husbands and wives- I don't how they get by. It is so much worse to see someone you love suffer than to do the suffering. I wouldn't switch places with my husband for anything.
there really should be a place here or somewhere else for a spouses support chat.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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What I read in your post, is that you are having psychiatric symptoms
quote:
Also, now my brain is sending bad images to me of things that scare me. I know it the lyme but I'm so scared all of the time...when I close my eyes, I see horrible, sad, scary images that make no sense in my safe world.
quote:
That's how it all started for me and I was diagnosed with psychiatric disorders for many years before figuring out the cause of my problems.
I know it's not appealing to consider psychiatric diagnosis -- but, I can say that psychiatric medications have helped me tremendously with the symptoms I had. They don't treat the cause of the problem, but in the meantime they can make it more bearable to live with this aspect of Lyme, while you treat the cause with antibiotics, or whatever you choose to treat the Lyme.
I know it is scary to consider psych help -- because of the way that people with psych conditions are stigmatized -- and because you run the risk that you PCP may no longer take physical symptoms seriously.
My attitude has always been -- if they aren't helping me, I move on, and find the people that are willing and able to work with me.
This is just my personal experience: it is not advice, though it may give you a different perspective from which to work with your situation.
Hang in there,
Karen
Posts: 112 | From RI | Registered: Jan 2007
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Dear Tothepoorhouse, I am very sorry to read this, and I've been there too.
I agree with Karen. Before Lyme took me out of the job market, I was a Psychiatric Social Worker.
Even though the Lyme is causing it, you are having symptoms of OCD (Obsessive Compulsive disorder), and this can be treated. The scary thoughts are obsessive. If it gets unbearable, and it sounds like you are already there, an SSRI can make those awful thoughts go away in about 3 weeks.
To give you one example, once Lyme attacked my brain, I started to have intrusive images of someone breaking into our house, turning on the garbage disposal, and then forcing my hand into it while I screamed in holy terror as my hand was ripped to pieces. Is this the type of thing you are talking about? If so, that is a type of OCD and an SSRI could ease your suffering.
You could also try natural remedies like taking L-tryptophan at bed time to raise your serotonin, as well as eating more foods that are high in serotonin. This was not strong enough to work for me, but it may help you.
I don't like long term use of SSRI's for several reasons, but they are better than being totally miserable, and you may not need them forever.
My prayers are with you, Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
Hmm, I'm there already. I take Wellbutrin, Cymbalta and when necessary, Klonopin.
I did see a psyche early on and he told me I was as strong mentally and emotionally as he was. His theory was it was the pain and fatigue affecting me and that if I dealt with them, I'd be 100%.
These meds were rx'd to try to help my pain levels and coping abilities.
Klutzo, yes...those kinds of thoughts. Things like seeing animals abused in real quick images or horrific car accidents. I know it's the lyme when this starts and I make myself change the screen to something pretty or listen to upbeat music, etc. It's strange and scary!!!
Gosh, if I'm this bad with these drugs, where would I be without them? Scary thought.
Posts: 867 | From PA | Registered: Jan 2006
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I don't know if you remember me. I am one of your Rocephin Buddies. I was so sad to read your post, and at the same time I can identify with how you feel.
Remember giving up is not an option. That's what my husband said to me once when I was in a real bad place with this disease.
Someone called me the other day who has the flu, and is otherwise very healthy. She told me how she was depressed just from being down a couple of days, and could not imagine how I cope.
Remembering my good days is how I cope. No matter how bad it gets, and trust me my symptoms are very severe when they are bad. Always have faith that another good days is just around the corner.
You are so blessed to have a husband that is supportive.
Also it is so great to have a safe place to come and talk, vent, and cry, and have others understand.
God bless, and keep the faith.
Kathy
Posts: 175 | From Pa | Registered: Aug 2006
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posted
You'll be okay. You have your husband who is there for you to help you through it. He's getting angry because he wants you to be okay, and I think you will one day.
I sit(lay) alone in my house, sometimes bedridden, and not only did my friends dump me, but they actually ridicule me. I honestly have no human interaction most days because I can't go anywhere due to being so sick... hopefully this will pass soon.
When I have an inflammation attack, or body going into shock attack, or an emotional attack... I sit here alone knowing that my friends are having fun, don't care, and acting like I'm not sick or I have some common flu or something. This is 24 hours a day, because I can't work right now being sick.
I never noticed it, but looking back, it seems my friends were always jealous of me, and now's their time to enjoy my illness because I'm in the dumps. What they're forgetting, is that I was there for them.
Once I'm done with this, I'm going to work out hours a day, go back to school for Ph.D., and save a lot of money... I'm going to be even better off than I was before, because I'll be that much stronger.
-------------------- Never walk through a cornfield backwards.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Poorhouse...I appreciate you so much. I am angry not at you, but at the horrible disease this is.
My daughter has the same thoughts you have. You wonder if it's worth the fight. I have to read the success stories on here and tell her that it took years of endurance, then there was a light.
It's also very important to know that the chemistry in your brain has changed from whacked out hormones to bacteria, to things beyond me. My daughter started with psyche issues. We have to adjust her medication as the brain changes with this disease.
Find another doctor. Ask your LLMD for a referral. It will be worth it, and the level chemistry will help your healing.
I was also wondering (wish Gigi were here) if using an infrared sauna where your head sticks out causes the bugs to run UP to the cooler area?
Stay with us, poorhouse, your posts bless my day no matter what tone they take. You are important to us.
We know the enemy!
Love ya Kelly
Posts: 2903 | From AZ | Registered: Feb 2006
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I am sorry you are going through this. I know how it feels.
One thing that stood out in your email for me are the horrible images that are popping up in your mind.
I had this at one point. I of course will never know if it was the lyme, ehrlichia, or babesia directly that was causing it but I strongly suspect it was babesia for me.
Once I was treated with Mepron and Zith. those bad images started melting away.
Don't know if you have already been treated for babs or not but if you have not I would consider it.
Take care and hope the light starts shining on you again soon.
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
This is something I used many times in the darks days when my wife was sick... -------------------------------------------------- Find a quite place away from phones and TV (unplug and turn off). Sit on the floor if you can on a warm rug in a lotus position if you can.
If not lie down or sit in a comfortable chair with your feet and legs up.
If it is cold cover yourself with a blanket of favorite color until you are snuggly warm...
Now, close your eyes and imagine a shimmering bubble of silver energy surrounding your entire body.
That bubble protects you from all evil demons, negative thoughts, and other creatures of the Darkness.
Nothing bad can get through the bubble. Pause and bask in warm safety of the Bubble. Take your time.
Now with your eyes still closed and wrapped in a warm cocoon of safety. Look into the distance of your mind and imagine a tiny bright white light approaching.
The light is whiteness beyond anything you have ever seen. The light fills you with Joy and Peace.
The light gets closer and closer. It passes through the Bubble and floods your entire being.
Suddenly you realize that the light is Pure and Perfect Love. Then you realize that you are looking into the Face of God.
God is Perfect Everlasting LOVE. He only asks that you Love Him in return. Open your heart and soul and let that Light fill you.
Ask what you will of the Father and return His love with your own love.
For you see, Love is all there is. Our little world is just a passing dream or nightmare as the case may be.
We pass into our dream worlds to learn things we need to know. Then we leave and awaken in the light of Perfect Love.
Then when we learn all we need to know, we will dwell in our Father's Love forever...
God Bless You God Loves you more than you can know.
God's Love is all there is! Nothing else matters or exists. Our little worlds are only passing dreams.
Tj
Posts: 192 | From Phoenix, AZ | Registered: Apr 2005
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posted
Poorhouse: I have been diagnosed with depression long before Lyme's ever was on the radar screen and i had to try a series of different medication until I found one that really worked for me. I ended up being referred to a doc that specialies in dealing with patients that do not respond to "normally" to std medication. I would recommend that you see another doc, and/or tell your doc that the medication is simply not working.
Please do not give up...I know it is exhausting just reading this site, but we are all with you on this one. best,
-------------------- Elsa Posts: 2 | From arizona | Registered: Jan 2007
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posted
I so understand this. There are days I wish I could get hit by a car and just get it over with. I feel more reckless then I used to be because quite frankly I don't value my life as much anymore. Of course on the days I feel half decent I think yes I can do this...but on those bad days or weeks it takes everything in me to keep going. My husband gets really upset when I say anything so I just keep it to myself...and share with you guys who can relate.
Lesley
Posts: 120 | From NB Canada | Registered: Jan 2006
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posted
Poorhouse and Lesley and others, I felt the same way for years. I cried daily. I was reckless and irresponsible for my safety for the same reasons.
Every year, I thought was my last. I never dreamed of the future and having grandchildren. We thought for years that I had a brain tumor and the MRI's and CT's missed it.
I had no dx. Then one day I realized I had to do something and help myself. Starting with what I knew. I knew that I probably would not have lived that long with that pain from a tumor.
I knew that I had an abnormal EEG and that I had frequent fevers. It had to be infection. I wrote a list of everything that ever happened to me and that was when I remembered the long forgotten tick bite.
I went library and got several books. That was when I remembered the rash, while looking at pictures of the bullseye.
This knowledge led me to lyme net then to ridding myself of a constant deep seated burning ache in center of my head for 11 and 1/2 years.
There is a light at the end of a tunnel. My head pain has been gone since Nov 2, 2005. My only regret is that my mother passed away without seeing me pain free.
I feel that knowledge gets you on the right path. I'm not totally well. I have poor memory among other things. Guess what? Now I find myself dreaming of my future grandchildren.
I am more responsible for my safety and wellbeing because now I feel that I'll be here next year. I don't cry much anymore. I think pain causes depression and it needs to be controlled.
Hang in there and take control.
Posts: 290 | From ohio | Registered: Dec 2005
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posted
ttph, Oh dear! you are making me remember very sad days! I had pschotic episodes for so long! now they rarely occur and are much milder than when I was so ill.
many things helped. Iv meds that started my treatment, ant I aggree with lymied, that babesia treatment locked things in!
Until then, lots of fresh air! Fresh water, gentle slow walking when you can. Grounding exercises worked for me. I liked to swim. I went to Curves and just did the machines really slowly. I still do it. And I talked to people, listen to the radio, watch Tv a litttle just stay connected.
I'll be praying for you!
Posts: 663 | From NH USA | Registered: Sep 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
You said>
The message was, the worst part of having lyme is that "you don't die from it".
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
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