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!
Posted by carly (Member # 14810) on :
Erika,
I agree with everything you said...
EXCEPT the first 5 sentences.
Although, I have felt that way sometimes, overall I am too stubborn to let this thing win!
I will not surrender to this. I will not call it quits. I will have my life back.
The good days are there. Maybe they're not too plentiful at first, but over time there will be more & more of them.
(On a bad day, I might spell your name with a c, even if I looked at it 4 or 5 times. Today, I spelled it with a k!)
Hang in there Erika, you're not alone. Posted by Geneal (Member # 10375) on :
Hi Erika.
I often felt that way.
I tried to think of others suffering and give my suffering up for them.
You will get back to the living.
My Mom always said that it is these trials that make you stronger.
While none of us would have chose this illness or the suffering,
We can take something from it.
Use it to enpower yourself.
I often think to myself that if I can do Lyme and co.
I can do anything.
It has been my blessing to have two small children who need
My attention and have needed treatment for Lyme too.
They've kept me going- whether I wanted to or not.
You are not a washed up, old, sick person.
You are overwhelmed with a bacteria that has invaded our bodies.
Don't let it invade your soul.
There are better days ahead.
I've often looked at success stories when I am at the bottom of the barrel.
If someone else can get past this, well then I can to.
As strange as it seems, I've seemed to have assimilated Lyme into my life.
While it is a part of my life on a daily basis,
I refuse to let it define who I am or what kind of life I lead.
While I may never lead the "old" life,
My life is still filled with the sense of wonder,
The appreciation of "good" days,
The "hope" of tomorrow.
Sending you Angels and prayers to give you some hope too.
Hang in there.
It will get better.
Hugs,
Geneal
Posted by njlymemom (Member # 15088) on :
Geneal,
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
Posted by map1131 (Member # 2022) on :
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
Posted by LisaS (Member # 10581) on :
Deaf, Wow for a second I thought you were me. I could of written that post!
Posted by LisaS (Member # 10581) on :
Amen Map, you have good advice
Posted by Silverwolf (Member # 9196) on :
<<<<< 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!!!
Posted by MissMari (Member # 11274) on :
Hi Erika,
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.
Posted by DaveNJ (Member # 17362) on :
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
Posted by feelfit (Member # 12770) on :
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
Posted by DeafFromLyme (Member # 18795) on :
Yes Feelfit
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.
Posted by bettyg (Member # 6147) on :
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!
Posted by Melodymaker (Member # 16434) on :
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.
Posted by DeafFromLyme (Member # 18795) on :
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....
Thanks again everyone! Posted by johnnylight (Member # 18518) on :
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.
Posted by James Marschner (Member # 13073) on :
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!
Posted by Keebler (Member # 12673) on :
-
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.
-
Posted by swachsler (Member # 18155) on :
Hi DeaffromLyme,
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
Posted by DeafFromLyme (Member # 18795) on :
Hi Sharon
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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