I am ready to die. I don't mean I'm suicidal, but the pain and the agony of three years is enough for me. I am such a different person now and I just want to be in peace.
My father died last week after a long battle with cancer. His passing was very peaceful and a blessing.
I pray constantly and I have great faith, but it seems the end is not in sight. I have two beautiful children who I feel are being robbed of a childhood because of me. They are 10 and 12 and I feel they will only remember Mom as being sick and not all the great stuff we used to do before.
I have nothing left. I know I must be strong and carry on but I feel like an empty shell. An awful wife, mother, etc.
Any words of wisdom?
Posted by 17hens (Member # 23747) on :
This too shall pass.
Dear lyme987, I'm so sorry for all your pain, physically and emotionally. It's such a hard journey, isn't it.
Lyme robs us of our rational thoughts, our joy and hope and our feelings in general.
But you are not a horrible mother, you just feel like one. You are not an empty shell, you just feel like one. You are not an awful wife, you just feel like one. Your beautiful children are not being robbed of their childhood, you just feel like they are. You feel like you have nothing left, but you do.
This is the voice of Lyme, but it does not have to be your voice. Fight it with all you have.
Look for the good things, the positive things in every moment, hour, day. They are there.
This too shall pass and life will be good again.
Posted by Remember to Smile (Member # 25481) on :
PM sent, dear lyme987.
You've demonstrated that you do indeed still have wisdom and passion, 'cause you posted here.
Just as God shows us the beauty of senescence with the glory of autumn color, know that you will have other seasons after this...
Smile
Posted by fflutterby (Member # 28081) on :
PM sent on a great tool to use during your recovery! God bless you. You have the will to do this, find it and know that you have the ability to love.
That is all you need to have right now. May God come into your soul and give you the strength and comfort you need. You can love your kids, being super Mom will have to wait, temporarily !
Many blessings and positive energy coming your way !!!
Posted by deerose (Member # 27484) on :
I read your post with tears. I get it. Been there too... three years and counting..
last late winter to spring was just like that. I wanted to die. Again like you not suicidal.
My beloved 89 year old stepfather died. I was deeply envious. Actually there was a lot of dying going on among people I knew well and it brought the afterlife near.
Hard not to be envious.
But I will tell you...that I am out of that. By steps and degrees. and that was before the second bite in July.
I do not say that to compare but to share experience, strength and hope.
I can only ascribe that to prayer and grace. I did not give up either. but by no means did that mean strong willed daily proactive postive thinking.
No, through that time (not knowing when or if it would end) it was moment by moment crawling.
but when that state of mind and emotion was upon me for so long I did not see a way out or through. I did not have here and I was tired oh so tired of sharing the indescribable. so I did not. I was so isolated on top of it. Inside, not outside.
In the midst of that I took the risk and really poured out my heart in tears and practioner at the time said "oh, you are an attractive woman, you need to get out and socialize (with men)". meaning go have sex and you'll feel better.
You have GOT to be kidding.But I was not angry then...
it was sheer devastation upon devastation.
I am not sure what giving up really looks like. I don't think it is measured by wanting to die.
If we believe it is a relief and a peace then it seems natural in a very long painful seemingly endless and hopeless endurance race.
However, don't giv e up. It will get better. it will.
17hens said it perfectly....this is the "voice of lyme". Not you.
Praying for hope to break through.
Posted by Dekrator48 (Member # 18239) on :
I am so sorry for all the pain and agony you have suffered.
I too, understand pain....terrible, agonizing pain.
There is hope. My pain is getting better slowly.
There is hope. You have faith in our Lord Jesus Christ.
There is hope. Your children need you here.
There is hope. You are a blessing to many.
If you get the chance, check out daisyrlb's weekly thread in General Support called "God Thought", where we cling to hope.
Lord, God of all hope, please lift up lyme987 and comfort her.
Let her feel the love of her family and friends.
Lord, please give lyme987 the strength she needs to get through her trials, including her pain and suffering.
Please heal her from lyme disease and use her to do your good works.
Lord, I pray that lyme987 will feel hope today and every day.
I pray this in the name of the Father and of the Son and of the Holy Spirit. Amen
Posted by cjfrank (Member # 26985) on :
Amen
Posted by John S (Member # 19756) on :
Well, I know how you feel.
Posted by RESOLVED. (Member # 24991) on :
Praying for you today.
Posted by steve1906 (Member # 16206) on :
Good Morning lyme987,
You need to hear that you will get through this -- even people who feel as badly as you are feeling now.
Some people often wish they were deed because of all the pain. You will not feel the relief of pain you so desperately seek, if you are dead.
There are people out there who can be with you in this horrible time, and will not judge you, or argue with you.
We are all hear for you 24/7. just because we have not ever met each other, we are all friends and ALL in the same boat!
A lot of us have felt the same way as you, many many times. I don't think you'll get through this, I KNOW YOU WILL!
You have two wonderful kids that you love so much, and they need you in there life.
Keep posting here, let us hepl you. Tell us whats going on and we'll get you feeling better.
Please PM me anytime you wish, or if you just need to vent!!!
Happy halloween, give your kids some extra sweets today, and a hug or two...BUT NO SWEETS FOR YOU LOL
Posted by Ann-OH (Member # 2020) on :
Sending you a PM Ann - OH
Posted by Robin123 (Member # 9197) on :
I understand the feeling, about wanting to get out of all of it.
I think we know our goal - to be at ease, at peace - so I think we have the right to keep that goal as we try to find out how to achieve it again with treatments that work for us.
We're all different - no one can say what will work for us - we have to try different remedies and watch how we respond. Are you working with a good medical person?
It takes a lot of patience. Also, anything we can do to drop the pain level.
It's hard. I went through so many years undiagnosed and struggling to stop something I didn't know I had.
At least you know what you have, so I hope you can tackle it with a strong medical team.
Also, I think we carry a lot of judgmental shoulds - I should be this way, I should be able to do this.
And these illnesses rob us of the freedom to be normal. We can't be the usual normal. You can't be a normal wife and mother. And you have a lot of company, the way this epidemic is going.
So I think we have to change our thinking. We have to drop the normal judgments about who and how we should be.
We have to find a new way to be in the world with this going on. A new definition of what it means to live and be who we are, and have that be enough.
For me, the reality of the present, with the hope for a better future that I actively work toward.
Posted by randibear (Member # 11290) on :
me too. after mom died, i just didn't care and really i still don't.
if i die, i die.....
but you have children and they need you. be strong for them.
i have no one.
Posted by steve1906 (Member # 16206) on :
We all have each other, and we all need each other to get through this!
Posted by LisaS (Member # 10581) on :
Awww been there...all i can do is send you lots of hugs. It is such a hard battle, and nothing I can say will make it better. Just know you are not alone and none of being sick is your fault.
Youre kids love you no matter what. My kids were raised by me sick and Im still sick but they are also now very kind compassionate people. So hang in there. I know its hard, big hugs to you!!
Posted by MADDOG (Member # 18) on :
Only 3 years???????? Thats a drop in the bucket.
I got 26 years living with lyme.
You get used to the changes,the pain,ect.
You get to a place were on a good day you just celebrate and do and go anywere anything thats possible.
You stretch that till it pops.
And on the bad days you take your meds and wait for a good day to come,it will!!
Make plans for what you will do on the good days.
Then burn them up for all you can get.
You never get mad at yourself for what others expect of you,they just don't get it.Not your falt!
Do your best and that is all!!
MADDOG
Posted by Lymetoo (Member # 743) on :
I believe my mother (& dad) had Lyme while I was growing up. I had it too, but none of us knew.
What I mean to say is that even though my mother was ill quite often, we knew WE WERE LOVED. Your love for your children WILL COME THROUGH LOUD AND CLEAR.
A mother who is ill is way better than not having a mother there at all.
Don't let the "voice of Lyme talk to you" ..
and .. my condolences on the loss of your father. I know how hard that can be on a person. I've lost both parents.
Will keep you in prayer. Posted by SyrLymie (Member # 28933) on :
Hi 987, I know how it feels. I think many, if not everyone, on this site knows how it feels. I'm two years "in" and everyday I think "Am I going to spend the next 20 years waiting to feel better while my family quietly suffers?" In a matter of 2 months I went from being an independent, hard-working member of society with hobbies and a LIFE, to being an invalid who couldn't make it to the bathroom without the use of a walker. It's depressing, frustrating, scary, and angering... and I don't even have kids! I do have a husband, though, and I regularly think of how I'm stealing his days and happiness too. This disease is awful. It rots your mind and soul along with your body and no matter how you explain it to your loved ones, they just don't understand! They'll always be on the outside looking in. They don't understand that it's not just a matter of "being sick". For me, it's the fact that I've lost everything I've worked for in life, my independence and identity, all my schooling... and now I feel like an "expensive pet" for my husband to take care of. I don't know if these feelings will ever go away. I go to therapy regularly and take meds for depression. Some days are better/worse than others. I've been told that the key is acceptance -- learning to live with the disease (while fighting it) instead of letting it run your life. I haven't gotten that far yet but I'm hoping someday I will. I hope you get there too. In the meantime, I know how awful it feels, inside and out. If anything, I hope you might find comfort in the fact that you aren't alone and you aren't nuts for "feeling like dying" because I/we have been there before too.
Posted by lyme987 (Member # 22148) on :
Thank you everyone for the kind words. They were quite inspiring.
I have been treating lyme for 3years but I have had it over 20. I know I will beat it but at times it just seems like a losing battle.
I'm sorry I didn't write back sooner. Lymenet seems to be down alot
Posted by Lymetoo (Member # 743) on :
Hope you're feeling a bit better today.
Posted by SyrLymie (Member # 28933) on :
987,
I think the same thing almost everyday. It feels like it's never going to end but if I don't try to believe that I WILL get better soon, then my mind helps to keep my body sick. I've only just started realizing this and I try everyday to catch negative thoughts and make an attempt to neutralize them... I'm not ready to say "I'm going to get better soon" without feeling like I'm lying but I guess "fake it till you make it" might help in starting to change the negative thought process. Hope you are feeling better today. -J
Posted by Keebler (Member # 12673) on :
- We don't have to fake it - and we don't have to lie or make up fairy tales that are not likely to become reality. I think that can be a recipe for disaster. We can accept the way we feel and accept ourselves as we are at this point in time. I think denial can sink us, big time.
It's okay to admit it when we feel rotten. It's the reality. But even in a rotten reality, if we can enjoy something - anything - that can be a life line.
I's okay to be real and honest -- and just take some deep breathes and go with the flow, listening to what our bodies need at each turn.
We do the best we can with what we have and know that we are okay just the way we are today, even if we really hope that the days and nights to come will be better as we continue to do the best we can to aim ourselves toward that outcome. -
Posted by aklnwlf (Member # 5960) on :
Sending you a hug!!! Posted by azdaisy (Member # 25357) on :
Thank you for being so honest!
I am very sorry for your loss. I have been diagnosed and under treatment for only 2.5years but I was sick for 30+ years before it was figured out...and I was very suicidal. Pain is depressing thats a fact and it takes its toll. The most important thing that I do. I REFUSE TO LET A BUG KILL ME!!!!! no way no how, not me. Thank god i have had a few good days even weeks in the last two years, but today was bad. Very bad. But it will get different of that I am sure!! please don't quit before your miracle, that would be very sad indeed. xoxo
Posted by LightAtTheEnd (Member # 24065) on :
I am sorry about your struggles and your loss.
I recently had brain tumor surgery, then my grandpa died 3 days after that, and now I am facing months of treatment and therapy, and this is on top of Lyme. I am not suffering much physically as you are, but it's a lot to handle emotionally, suddenly losing your independence and being threatened with death.
But Lyme uses depression as a weapon against you. It messes with your brain chemistry and tries to wear you down any way it can, to convince you to give up fighting it. Recognize it for what it is, and fight it with all you've got. It is a sneaky beast.
In my case, I have come to the realization that I only have two choices--to live and fight my illnesses, or to give up and die. I refuse to give up, so here I am looking for silver linings and things to learn from my experience. It also has made me more compassionate for others who are going through similar things. Plus I am determined to recover from both cancer and Lyme, because I refuse to be a victim. It may not be up to me, but if it is, I am going to win. In any case, none of us human beings gets to escape from undeserved suffering, so I can't see much point in asking "Why me?" when I know so many other people going through worse than I am.
You hang in there, and don't let despair make you give up trying. There is always hope, and if you can't see it right now, make it through to another day and have faith that you will see it tomorrow. And your kids will definitely love you exactly as you are, so you don't need to get well for that--you just need to hang on and keep going.
Hugs,
Light
Posted by lpkayak (Member # 5230) on :
i can tell you i know exactly what you are feeling. i raised 4 kids while fighting lyme. later my grandson and daughter in law got it too.
i'm so tired i can't really say anything helpful.
i agree with this:
"What I mean to say is that even though my mother was ill quite often, we knew WE WERE LOVED. Your love for your children WILL COME THROUGH LOUD AND CLEAR. "
altho 3 of my kids were dx and got some tx i feel they are still undertreated and dealing with lyme sx but they are in denyal
i think the other one has it too even tho he never was dx
they did have some psyc/soc issues about having a sick mom...however they also grew up to be extrememly responsible, compassionate , intelligernt ppl with a strong work ethic.
they are all successful in their fields...2 working on doctorates...
its really hard to tell how a "hard life" will affect a kid. some with the worst lives end up doing wonderful things and some with the best life get really lost.
just love them and love yourself and listen to what all the others are saying to you here and try to find something good-positive...fun ...laughable each day.
when i had uncontrolled nerve pain 24/7 i was suicidal...and honestly, i think that is a very rational thing.
but once that huge unrelenting pain was controlled, i learned to get happy just watching a grand kid or smelling a flower or hearing music...i could go on. i just figured out what i COULD do...and focused on what felt good and that was enough to make me realize i needed to stay here
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LOL