tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Do you ever feel like just giving up? Sometimes I feel like I am never going to be better. I feel like quitting my job, moving home, and doing nothing, and just accept it.....
ugh somedays are so hard arent they...
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
I totally feel you. I am sooooo frustrated right now.. not knowing when this will all end. Not having a plan of action in place.. just blindly taking drugs and hoping for the best.
I just want to move home as well and forget about work, etc.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
Yeah, I did. But then I'd think that giving up wasn't much different than fighting and trying to win .... either way you feel bad. Eventually I won, so I am glad I didn't give up.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
All the time.. I can't work, stay at home and suffer .. I did start on doxy this morning so if this doesn't work or makes me feel like the other abxs. I feel I have no choice..as I am bindly having to take my drugs and like penguingirl said hope for the best. I did email and got a positive reply from a NP I had seen in the past. She was the one that said I MUST try the doxy..
God Bless,
Posts: 1058 | From VA | Registered: Oct 2010
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Its so hard and frustrating...I am so young and i just keep thinking is this what the rest of my life will be like? I was on top of my game...finishing my Master's traveling...great bf everything life couldnt be better! Then poof. I got a vaccine and life turned upside down.. I was so active and in shape. Now I am flubby, can no longer wear contacts stuck with my ugly glasses. I HATE IT I HATE ALL OF IT. I pray everyday to get my life back I just feel so hopeless today...
hmmmm I wonder if it is a herx?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's normal to hate it. That's okay. Don't resist and just assume that this will be no picnic for a while but you are still young and still have a chance at a good life - it just may not unfold as you had thought - or when you want.
Yes, it's horrible. Fact stated. And, so, . . . we can admit that and still move forward (or just sideways some days).
Rather than give up - give in, to rest. Give way to new habits, etc.
Along the way - all through not liking this - you can still find some things of enjoyment and appreciation. Those moments and insights keep us all going. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Thanks Keebler! And everyone else...this is hard...I just worry I will never get better
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Every single day. And every single day I keep trying to stay alive by trying to keep my head off the issue. It would be denial entirely but for the fact that I actually keep attempting new treatments as each one fails. To have treatments fail over and over is no easy thing to experience, I assure you. It's unfortunate many of you know that experience too.
Not giving up requires me to not think, talk, hear about illness, or even life in general for the vast majority of my day -- which of course can't be done for a lot of people. There was a time when even denial was impossible because the disease was even more consuming than it is today. The mental illness that resulted from a brain being inflamed and infected with a bacterial infection can certainly make "meditating" on your faults, dreams, and other virtues damn near impossible sometimes, but "some" of that has improved.
That's something to be grateful for, and I am, but I'm still only 35% functional most days, and I am depressed half the time. Worse, I feel like a failure and fool too, but that's just the result of being beaten down over and over and feeling bad about people who tried hard to help me, but were burned out and mistreated by me during the peak periods of my ill health. The select few bridges that I've burned, and people who remain angry about things I've said and done weighs on me heavily too. I don't quit because in some strange way, I feel I need to redeem myself. So I fight to stay alive long enough to see that day. I try to tell myself rationally that it's ok if others feel that way, but deep down, it disturbs me and I often hold myself responsible. Interestingly, most people who are chronically ill with Lyme Disease often feel just like me.
I also don't quit because I believe that somewhere inside me is a great man. I need to prove to myself that I can contribute more than just words, but that will only happen if I recover. I'll keep going though, even when I feel apathetic, worn out, like giving up, dead inside, and when I've lost myself. So there you have it. I sit around in pseudo-denial playing video games and guitar 90% of the day so I don't feel these things. If that's what I can do for now while attempting to get well, then that's going to have to be enough.
[ 01-18-2011, 02:48 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I see youre recently registered so youve only been treating for a short time. It takes TIME. Thats what Ive learnt to accept. ive been treating for about a month and a half
You will get better. You just need to tough it out and ride it thru. Its not going to be easy and you will have ups and downs and good days and really crappy days. Take care of yourself and know that better days are ahead.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
Everyday I feel like throwing in the towel.
The hardest part for me, as always, is the complete denial by everyone around me that I have something serious.
Posts: 743 | From New York | Registered: Apr 2009
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Hi lymegal I am new here. But I have been sick for awhile. About 7 months of this going on. It has just been terrible. And I see so few sucess stories on here I get worried, I will not be able to beat it .
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tricia,
If you get worried reading posts here, it's probably best to focus your study on the professional articles and books, then, and just come here for a question or two.
Rather than be affected by all the questions of others who also struggle, set your sites most of the time on what is needed to succeed. Or - be sure to notice that, even for the posts that can be distressing - there are often solutions and suggestions offered of what can help.
What treatment articles or books have you read to date?
When we see where you are with that, we might be able to suggest other reading that helps you focus on the positive efforts that are within your control as you move through this.
Are you gluten-free?
Do you need cookbook suggestions?
Can you take up a musical instrument or a new hobby?
Progress and Success Stories -
Posts: 48021 | From Tree House | Registered: Jul 2007
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
yes i am gluten free. cook book suggestions would be great
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Tricia, (and others who shared) so sorry that some days are so rough. I know what it is like too.
Ummm...there is so much I could share...
Let me just say...
Detoxing, detoxing, detoxing is a must for me. It makes all the difference in the world.
And the God Thought thread on Lymenet...week after week...has been a great encouragement to me. When I've been low...someone always posted just what I needed to hear.
Never ever ever give up hope!
Posts: 2188 | From Oklahoma | Registered: May 2008
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Daisy- What do you do to detox. I have been drinking green tea and taking epsom salt baths..and plenty of water with lemon about a gallon a day
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Hi Tricia! I sometimes feel like an old timer because I have been ill for nearly 23 years. I can't count how many doctors I have seen, how many tests, etc. etc.
The good news is that after all this time, years of it totally bedridden on oxygen, on iv's for pain, I am getting better! My husband finally figured out how to get my DNA tested and we found all the infections that were in my brain and all over me.
I had no idea I had lyme disease and had never been tested for it. I had my thyroid removed, surgeries on sinuses, a port installed....yet no one ever knew why I was so ill. My well known LLMD says that my experience is a common one among his patients.
So the two Bicillin shots a week, the daily Biaxin are slowly working to get me out of bed, actually being able to read a book, play my piano and even do a little cooking. I am writing my second cookbook and working on two other writing projects.
I wanted you to know that there is hope and a bright light at the end of the tunnel. I may never be totally cured, but it is all relative. I celebrate every little thing I can do and when I can't do it, I write it down on my List of things I will do when I am better.
Some of those things are at last happening. I can't tell you how thrilled I am to be able to read a book! I'm glad I saved my favorites because now I am reading them again (and remember nothing from reading them before!).
I still have terrible memory difficulties, my speech is hard work, swallowing doesn't always work right, my eyesight is horrible and I get frequent ulcerations in my eyes.
But I am out of the wheelchair, don't even need my cane, and am usually up and moving for much of my day (I do not, however, do mornings!) I am losing weight since my LLMD is testing and prescribing the right thyroid meds at last!
I need multiple drugs to sleep. That has taken me years to work out and I finally realized that I would have to take drugs to sleep, it is necessary for healing, so I take them.
I think getting a new hobby is a great idea. In fact anything new that you can learn is great. Spend your energy carefully. Don't waste it on people who are not supportive or on things you hate to do.
And, for heaven's sake, don't waste a single moment on worry about all the people who do not understand how sick you really are. They just don't matter!!! Their ignorance is not your problem....you have plenty of other ones to address!
Take a break from being ill every day for an hour or two if you can. Just pretend all is well, enjoy a hot bath, sit in the sun....just live!!!
I also enjoy frequent cups of tea. I think the British are right....nothing helps more than a hot cup of tea sometimes. Many teas are healing, high in antioxidants and can help with detoxing. I use Splenda, honey to sweeten it.
Yesterday I made an enormous pot of beef vegetable soup. It tastes wonderful and is a great boost for my energy and well being. I freeze it in small containers to microwave when I need it and am too tired to fix something.
It's those little things that rock my world! I have certainly flipped my old 14 hour workday world upside down! I never thought I would feel joy again. But I do...and for surprising and inconsequential little things.
Open your eyes and your heart, Tricia, so you are ready to welcome joy that comes from some of the most unexpected places! Then write them down and tell us about them!!!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
tricia, Following are the main detoxing things I am doing at this time.
DETOX BATH: I, too, do the hydrogen peroxide/epsom salt baths (three a week, Mon/Wed/Fri). I notice a difference immediately.
DRY SKIN BRUSH: Daily, AM and PM. Here is a link regarding this. It's amazing the benefits.
NEURO-ANTITOX CNS/PNS: remedy by Jernigan Nutraceuticals
WATER is big too. Drink plenty of it.
NON-TOXIC PRODUCTS: This is going to seem like a strange one, but we've replaced personal care and household products with non-toxic products (ie: cleaning products, dish washing products, teeth and mouth products, and lots more). FYI: We're eating as much healthy food as we can get and afford.
Have a good night's rest.
Posts: 2188 | From Oklahoma | Registered: May 2008
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
farraday, Was inspired by reading your post. Thanks for sharing it. Woooohoooo!
Posts: 2188 | From Oklahoma | Registered: May 2008
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posted
I was inspired as well faraday. Now let me share some inspiration.
Tricia,I have been walking through the valley for the last 4 months. I thought it was never going to end.
The last 2 weeks I have made a turn and my worries and illness has turned a corner and I have tapped into a positive energy source!
I have new found respect for what it is like to be challenged by something so profound and it has given me a new outlook for the future since I have been getting well.
This too shall pass,have faith
Posts: 342 | From northern california | Registered: Dec 2010
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Thank you everyone. I seem to be having a rough week this month. I really apperciate all your responses it give me hope for a better future and lets me know I am not alone
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Tricia, I am like you right now. Know how you feel and each day first I fight to "pretend" I'm functional. Get up. shower, dress, etc. and each day I am phisically and mentally drained by the time I am dressed. So, each day I give in to being house bound. Then by nite I'm asking God to take me in my sleep! Faraday, you have helped to inspire me a bit. It's the long waiting for an LLMD or LLNP. The fear that once I get to one the cost will end up my losing my home & all I've spent my life working hard for.
But tomorrow I'll continue the routine. Expect the best and try to get strenghth to get showered, dressed, etc. hoping this is the day I can just go to the drugstore on my own. It's hard when you live alone and have no real family. Wondering if there are many others here in this situation.
I believe it's harder to keep the faith when one is so isolated. When before this nightmare, so physically active outdoors with dogs and ofcourse daily ticks!
Beagle
Posts: 348 | From MA | Registered: Dec 2010
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Camp Other
Unregistered
posted
Tricia,
It's been a medical rollercoaster for me, too, and yes, sometimes I feel like giving up. And other days I feel so hopeful and on the edge of getting better. It depends, and yes, being in a herx does change my outlook on my condition.
I'm sorry you've been having a tough time. Many of us have had our lives changed by illness. But as we get better, we begin to take parts of our lives back like farraday (very cool username, btw, and inspiring post!).
In treating Lyme and coinfections, the process is often one step forward and two or three steps back, but the overall trend is moving forward towards recovery. It will happen in time. It took me three months of being on antibiotics before I noticed I was making progress, but I did, and got better. Once we began figuring out what coinfections I have, and I began to get treated for those, then more of my symptoms went away.
I'm still not 100%, but I'm hopeful I can get most of my old life back. I'm hopeful you can, too.
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posted
Thank you to all for your hope. I really needed to hear all everyone had to say. I also have been having a hard time. I have not worked in almost 2 years now. I was so outgoing and always on the go. I feel like I live on my couch now, for so many nights I can not get up to bed. The fatiqe gets so bad it makes it hard to do anything I should at times. I know I have to do more if I want to get better again. I just started bicillin shots because Ins won't pay for anymore IVs. I really needed to hear about the baths and diet again. Sometimes I just don't want to deal and pretend I don't need this. But I do and thats what you have giving me tonight. Tommorow will be a better day. Teresa
Posts: 10 | From Silver Spring, Md | Registered: Mar 2010
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posted
Thanks for all of your kind and most welcome replies. I love nothing more than to think I have given some small glimmer of hope to someone caught up in the type of despair that defined my life for so many years.
I used to write journal after journal about my miserable life. I can barely stand to read them nor can my kids. But they do help to document my journey. My husband plans to scan them into the computer to see what we can use from them to help others.
But now I am focused on writing several books. They are books about families, about cooking, about wonderful stories of triumph over tragedy. I try to infuse humor and wit into everything I write.
I used to write funny, tongue in cheek restaurant reviews, for heaven's sake. Now I try to be helpful with my writing, to help people solve problems, find joy and just plain entertainment from my stories.
The point of all of this is that once I felt my first inkling of hope and saw progress I switched gears and tapped into the joy and humor and optimisn that has always been the basis of my soul and energetic personality.
Most people are about as happy as they make up their minds to be. Abraham Lincoln
I choose to be happy. I curse the damned pain, work like the devil to speak my mind without stammering, and with God's help I will find a happy and useful life to share with others who need me and love me and can hopefully be inspired by my words and, even more imporant,by my actions and examples. I am particularly working to guide my grandchildren by my example.
Passion, drive and optimism are in all of us! The trick is to tap into it.
I wear a bead bracelet on tough days. Whenever I look at it I take a few deep breaths. A simple thing is breathing, but when we concentrate on it we relax, regroup and move on.
Keep talking, keep writing and let all of us help one another!
Hang in there, Tricia. Write to me whenever you like and I will try to answer promptly.
Farraday
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
I needed to read these messages, too. DS, 11, is going through a really rough patch and we are four months into treatment. I am exhausted from taking care of him and fighting with the insurance company. Hoping we will turn the corner soon. He has had this for eight years.
Posts: 28 | From USA | Registered: Aug 2010
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i can say that those thoughts and feelings are not unique to being young.
I could not have known what I now know on my own behalf without places like this. So I think we may be on verge of an even greater increase of understanding and individual ways to improve.
And my sister had it over ten years ago. Internet was young then..
Any of us would not have chosen that life did play out this way. but is has.
it can rock your world and your whole concept of yourself and how tricky and unpredictible life can be with the most careful planning.
Or deep hopes.
I posted progress on Success Stories. try reading there too!
something seriously bad happened to us. But what do we do with the new reality?
If we have enough energy to think past the next five minutes and how to get through it.
In the worst of the valley it was as Farraday described though not as physically confining recently.
Learn to walk and climb stairs again. Same with driving.
Get through getting dressed and doing basic self care. I live far from family and friends are hanging in with something they don't understand well.
I looked pretty good when out...and spent home being collapsed from the effort and getting ready for the next. Not even halftime 'on".
that is part of why it is hard for people...they can't see it like we feel it.
And I have to keep working cuz it is my only source of income...and pressed at that. thank God I have flexibility in large degree.
I feel guilty a lot for not being spot on with work with the same energetic force and clarity and foreward vision I used to have.
Gradually like farrady shifting to other forms of activity...writing more instead of "doing".
Learn joy in small things even when feeling the worst...somehow.
watching birds, a sunny window, roof over my head (is that a small thing?), my cat even though the other died this summer, writing some...
and being able to cook and have enough food in my cupboard.
Not sure I took those for granted exactly but one has enchanced appreciation for those basics knowing how close to the edge it can be.
you could see it as resigning but it is most certainly not. It is finding lifegiving moments in the hard times.
Lyme took my savings such as it was standing between me and whatever.
I have to replace my car which will cost more than it is worth to repair. I had 30 years of good cars but cannot replace this one with equal quality.
and the extra work to search and locate that while I have been cycling through feeling pretty good
has been a bear now that I am in a dieoff period and my mental status and physcial stuff kicks up.
yes when it is better it is easier to hang on to a better future. and not so when it cycles down or just is down for months or years.
but even though I am describing past and recurring tough spots...
Overall there is improvement in definite ways. My last good period lasted a few weeks and except for the neuro in my legs I felt better than in three years.
I posted on Success Stories. Reading those can help too.
Sometimes I can't read the worst of thing son here and sometimes it helps because I can identify and remember than the trial is lyme...
No matter what I am dealing with in life these days, it is harder due to lyme directly or indirectly. most of the challenges are lyme related.
due to co infections affecting my mind and emotions it was very hard to recover hope. praying friends help a great deal.
and it got worse before it got this much better. and I was reinfected a second time.
for a while it was just surviving one day at a time. And that while wanting to die. not suicidal just wanted to die.
Now that is gone. Even though my thoughts can get bad in the evenings or on some days but not like before. and I can cut the edge off with homeopathics.
the ball and chain crushing fatigue is past. what a relief! Adrenal support helps enormously. though I still have to be careful of pace...slow compared to pre lyme.
i also got an improved report from my EDT screening.
Lyme & co takes time. It challenges our hopes and dreams and vision of how life is or was going to be. No matter how old you are.
but there is hope. Even the most hard pressed share their improvement.
I have found dimensions of God in the valley as well as my mountaintops. Oh how I want the mountaintops instead.
but I know part of the task in living out lyme & co is that curious combination of acceptance without surrender.
Somehow trust in some deeper spiritual level even though I have felt hopeless and
that in s ome ways was the worst of the worst...
My emotions didn't necessarily connect well to positive lifegiving facts that many times but it is still true.
visionless for a better future many times...until quite recently
that during the endurance factors of life things occur that we cannot yet see.
We could not have seen lyme and it's ravages coming.
But neither do we know the good and blessed things around the next bend either.
and that is just as true.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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posted
I am so glad that I just read these posts. I am only getting oral abx so far due to ins denial for IV and I am on omnicef since dec 2. I am about to give up already!
I cannot take the thought of this going on for years. My LLMD says 6-9 months to cure but everyone on this site has horror stories and years of illness.
I lost everything. I just got my masters in May and had a great job with the NYPD for 20 years. I have been out sick since June when I couldnt take the subways and stress at the job any longer due to neuro issues. I just finished my sick time and now have no checks coming in.
I am sure that SSD will deny me, since they deny everyone. I just wanted to stop the meds and docs and forget it all.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
It's okay to have feelings of giving up. We all have reasons to live, family, kids, friends etc.
Instead of putting your energy into giving up, put all your energy into getting well.
Keep pushing, keep looking and reading how others got well, you'll be healthy again...
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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