posted
I can't do this. I am surrendering to this disease. I quit! I give up! I don't have any fight left..
Although I was sick,
before Lyme I was pretty. before Lyme I was nice. before Lyme I was caring. before Lyme I could eat. bofore Lyme I think I was happy. before Lyme I could hear. before Lyme I only went to the doctors once in a while... before Lyme I had money. before Lyme I never watched TV before Lyme I went out with my friends
Now I am just a washed up, old, sick person who just wants to stay in bed, not talk to anyone, not go anywhere, not get dressed, barely take showers, doesn't wear make up any more, could care less how much my roots are showing....
THIS SUCKS SO BAD! I want my life BACK!!!! I want to live a LONG healthy happy life and right now that is not happening!
How do you guys do it!?????????? UUUGGGHH!
I am so P---ed that this disease has destroyed the person I should be!
thank you for that response, i am sure that there are a few of us that needed to hear this today (I certainly did) .... beautiful writing
Erika,
living w/ lyme is like living on a tightrope 24/7
none of us are pros, no one has the answer
sometimes we feel that our steps are sure and steady
sometimes the wind blows and finding our balance takes extrodinary strength
we all have this strength
that does not make it easy
i hope that you can stay the course, and find your strength to get you through this tough time
take care
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Deaffromlyme, I would like to explain what is happening most likely in your situation. You are grieving for your past life.
You have lost something(s)that were very important and a part of you. Just like when we lose a loved one. We grieve for how they were, how we were with them. Memories of how things were.
We grieve when we lose our health. We miss our friends, our careers, our activites, who we thought we were, what we had planned for our life, we miss ourselves (the old you).
Just like the grieving process of loosing a loved one, many go through stages in this process. It could be crying, anger, depression, denial, etc.
I grieved for my career. It was who I thought I was. It was identity? I thought? I had just reached my career goal position.
I was there sick day in and day (I was sick going in)for 9 mths trying to be successful at this position. Finally one day the Lord said....
Woman, you are not going in to work. You are done and you are going to take care of you. Your life is not going to be what YOU thought it was going to be.
I felt like a failure for so long because this happened. After some very good counseling, I realized life for me is going in another direction.
I don't know yet, where that is? But I've gone through the steps of grieving for all that was lost in the past life and made my life's work figuring out how to feel better and heal as much as I possibly can.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Deaf, Wow for a second I thought you were me. I could of written that post!
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Erika/DFL >>>>>,
I know how you feel,to many of us do really. Geneal and Map,Thank You,wonderful uplifting advice!!!
I was just thinking about this,as I typed a reply on my post about my dogs illness.
Sometimes it takes most of the strength for the day to shower and dress... but every time we do, we win!!!
A friend of ours,after being in Ministry for many years, went blind 3 years ago, and had to be helped to the restroom,as he couldn't even walk. Now he is the 'Bishop-Overseer' of over 300 churches,between the USA and 2 other countries.
He had a different diagnosis than we do,but he knows of our struggle. The Creator told him to stop hanging on to the past,and yes,let God do what God would do! He didn't give up,but he surrendered,and he is winning,daily!!!
Our friends health isn't necessarily perfect,but he can walk and he can see...and does his best in helping others.It brings him joy now,and strength!
His path is different than what he had initially dreamed it would be,but it is ever so much better!!!
Hold on Erika,Hold on Lymer family... the dream may come by a different path than what we had imagined...but if it can happen to our friend, It can happen for Us too!!!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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All of what you've written has been in my head MANY times over!
I have given up MANY times! In fact, the majority of my posts here has been from "that place".
And unless you've been there, it's a really bad place to be.
It is very hard to look at the past, and the way things had been.
I guess it's because things seemed to be so safe, so secure, and so comfortable then.
I lost all of that too.
As I've posted before, if someone had said to me in 1987 (my last "happy year") what my life would be like 22 years later
I would have either said they were crazy or I would have thrown myself under a bus.
But in my case, the strangest thought recently came to me:
it was sad to lose so much
and frustrating to want it all back
But now I'm more amazed at how easy it was to lose it!
Wow! Guess that means that all of what I was / had wasn't so secure at all!
There is alot of grieving involved. And fear. Downright fear.
I still do alot of kicking and screaming at all of this that I don't want.
I still wake up in the morning and have the thought of not wanting "it" to go on (not life, but the parts of my life involving fear and pain).
I HAVE to come to this site every day. It is my sanity. It is my Rock. It is my link to living another day.
Nope, I don't have any wonderful answers or mind-boggling advice to give you. I wish I did.
I'm certainly not the person to go spiritual with you either; but my theory is
If I woke up this morning, then there's a reason.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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posted
There is very little i can add to what has been written thus far. What i know is true has been said here. One you indentify every symptom or emotion as caused by an external force you will find yourself and you will indentify you enemy.
Once you indentify your enemy you can begin to fight. Don't allow yourself to be the enemy or the obtsacle to recovery. Do what you have to every day and every minute. Come and scream to us but never let the enemy wear you down...and never ever ever give up....that's what your enemy wants.
This helps me to keep excericising. Damn buggers hate oxegen so i 'll give them plenty of that...damn buggers hate heat ..plenty of sauna...you will be tired... you won't want to do it....that's what your enemy wants. if you stay in the frame of mind at least most of the time it will keep you fired up to do what you have to ..what you must do...and for extra measure a little prayer doesn't hurt...it doesn't want you to have peace...but don't deprive yourself..
okay...i'm off my soapbox....
Keep the Faith,
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Erika,
All good advice here.
Optimistick THANK YOU!!!!!! What an inspiring motivating, uplifting response!!!!
Yahoo, I can bench press two frozen whole chickens......I'm on my way......
All good responses and Erika thanks, I needed to see these replies too.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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I completely agree.... These responses are EXACTLY what I needed! Everyone here on Lymenet is so wonderful and supportive and I can't thank you all enough...
You guys are the best! I had no idea what I was in for and if it weren't for all of you here I don't know what I would do.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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bettyg
Unregistered
posted
yes, what wonderful, thoughtful, INSPIRING messages from those walking in our shoes!
every day i do NOT find my name in the obituaries is a good day! what more can we ask for?
yes, when i say my nightly prayers i tell god specifcially what i'm thankful for still being able to do, etc.
hubby, 71.5 and i, 60 in 1 month, still living IN OUR PAID FOR HOME; being able to get up on our own, bath, dress, cook for ourselves, wash our own clothes, buy groceries, etc.
so many here can't do that; when i read kam's posts of where SHE IS TODAY VS. 2 YRS. AGO .... i thank my lucky stars I HAVE BEEN BLESSED.
39 years with chronic lyme; i've never known myself really.
hubby married me 34.5 yrs. ago and has NEVER known me well. he meant every word for sickness and in health; for richer or poorer ..
don't give up! WE have also learned who our TRUE FRIENDS ARE too!
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posted
Erika, it is necessary to know that you are an important part of this world.
Sometimes when we are weary from the battles of life, we forget how vital we are.
Perhaps you don't feel you are accomplishing anything right now, and you feel badly about that.
It's OK not to accomplish anything that the world values. Right now what you are accomplishing is winning the battle against Lyme.
Everything else can wait. If you had two broken legs, you would not worry about being in bed all day. I think having something you can't see makes it more difficult.
You said Now I am just a washed up, old, sick person who just wants to stay in bed, not talk to anyone, not go anywhere, not get dressed, barely take showers, doesn't wear make up any more, could care less how much my roots are showing....
LOL I was always like that. Makeup is a pain, my best friends don't care if I have gray roots, and although I know I need to shower, really there are much more fun things to do.
Live your life based on two things. Do what you need to do for your health, and then try and do things you really enjoy.
Stuck in bed... read something wonderful.
Can't read, watch a great movie.
Remember that you are important to this world, and worth taking the time to just do what is good and enjoyable to you.
I don't know what you think is old, but I'm 52, and have had this illness..misdiagnosed, for 25 years.
I purposefully do not wonder what my life would have been like without this. I consider this life to be only a small part of my eternity, and I have learned a great deal from this illness.
Sometimes I say, God, can I be done learning for awhile? That's OK. Rant, rave, pout, whatever you need. But don't give up. Never give up.
You never know what beautiful gifts the next day, week, month or year may hold. Do something wonderful for yourself each day.
Hold on, and it will get better.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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posted
Thank you guys all so much.... This has been a very tough week for me, probably depressed a little from feeling so sick and I'm sure part of this Lyme thing.
You guys know just how to make someone feel better and I can't thank you all enough...
Melodymaker, you're right I AM an important part or this world. And I am not going to leave it for Many, Many years!
When I say old, I just mean I feel old. I feel like I live in a 90 year old body....
posted
There is nothing more LONELY then having this disease. I started so many web sites and i am trying to reach so many people. We all need to SCREAM,SHOUT and make a lot of noise because nobody should have to suffer like this and not get any respect. It just fuels me to keep fighting Just like Lesley Wer. did i hear she was a fighter.
This is a horrible Debilitation Disease and the ignorance that goes with it is Horrific. I just had a very bad Herx and my Lymie friends warned me about trying to do too much. (abx Natural etc>) people with syphilis used to die from a herx so i learned my lesson to stay with the protocol.
These web site are precious and i have learned so much about Lyme from my friends i think we all could be some kind of Doc Ha Ha but keep you chin up things will get better.
Posts: 128 | From web | Registered: Dec 2008
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posted
Yes. Everyone is right. Please don't give up!
I felt that way too.
Go thru the treatment. Get aggressive if your not making any progress.
BUy from foreign pharmcy's if your running out of money.
Get pain mgmnt if the pain is unbearable.
You WILL get better soon if you listen to what these wonderful people are telling you.
This site is the best!
Please hang in there!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I have to bee careful not to take my idea of the life I thought was promised from U.S. media images. Movies and TV would have us all think we were promised the best of everything and the most comfort possible.
I have found that, each day, if I awaken with my thoughts of the women of Darfur and their struggle just to cook for themselves, then all my disappointments or comparisons to others simply vanish.
We can all only do the best we can while continuing to fuel the spark inside.
I agree with so much everyone else said, but today, I feel just like how you felt in that post.
I can hear (in fact, I'm having an auditory hallucination right now), but I lost the ability to speak due to Lyme/babs - since Nov. 07. So this morning, I was typing on the TTY to one of the friends that hasn't abandoned me, "I give up! I want to crawl into a hole and die."
And she gave me hell, which was good. And I clarified that I'm not actually suicidal, which is also good, because I have had a lot of pysch Sx, especially when herxing due to amoxicillin, bicillin, or mepron, and have been suicidal in the past, so it feels good to not actually truly want to die.
But I also thought, "Wait a minute. I fight so hard every day. I struggle and struggle to get by. I'm allowed to have a day where I pull the covers over my head and my accomplishment for the day is that I live through it."
I think a little wallowing every once in a while is good. So I declared this a "Low Achievement Day," and I felt better right away. It's the emotional equivalent of a hot fudge sundae for me.
Also, I hope you don't mind if I ask, because communication has been such an issue for me since I lost my voice, as I imagine it is for you: Do you use a TTY? Sign? Have people write notes? I use ASL, computer, and TTY for communication, and sometimes notes. I haven't yet found other Lymies in this situation, so I hope you don't feel like I'm prying. It would be nice to connect to others who have suddenly lost major access to communication due to tick-borne disease. It's lonely.
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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I am so sorry Lyme has taken away your ability to communicate! Its so unfair and here you are trying to make ME feel better!
Anyway so far I have only lost my hearing in my right ear. So fortunately I can still hear out of the left. I have just recently started treatment so we'll see what the future holds.
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