posted
Hi Everyone, I am really struggling and need to share and get some feedback (if people can relate.) I really want to get to a better place with my life and Lymes diesease. Thanks.
Background: I have chronic lymes, have been ill for many many years. Tried anything and everything to cure it, spent mega-bucks traveling to different doctors, clinics, treatments, etc. I Bought all the rife and other machines, etc. Before and during getting sick I had a super career - which I worked very hard at and sacrificed much - and then had to leave and get SSD.
Pitfall #1
Before Lymes I had always been able to overcome life's challenges with prayer and perseverance. I was a hard-driving type-A personality with faith that I could overcome anything with enough prayer and perseverance. If I had difficulties in various areas of life I would just THROW myself at finding a solution. It always paid off eventually.....EXCEPT WITH FINDING A CURE FOR MY LYMES.
So the painful and torturous battle with lymes really shot an arrow through my relationship with God, and, my positive life outlook. The discouraging disappointments with hundreds of lymes treatments took the wind out of my spiritual sails.
I eventually had to start seeing the state of sickness as some sort of ``life Lesson,'' instead something to find to fix, just for my sanity. I couldn't stand living in constant disappointment and futileness caused by repeated attempts to get cured.
Eventually my previous positive and empowered belief in god disintegrated over time, due to feeling forsaken and unhelped by god. The loss of my positive relationship with god has been so painful. Now I just have a lackluster relationship with god.
Is this something anyone can relate to?
Pitfall #2
I have been in counseling in order to deal with my loss of career. What has dramatically surfaced in the counseling is that my despair about my career-less life basically all stems from the toxic beliefs learned in childhood. My father raised me to believe only one thing mattered in life: HAVING A SUCCESSFUL CAREER. People who didn't work, like mothers, for instance, were judged as ``lazy loosers''. His religion was career-worship, just like other people have idol-worship or money-worship.
My counselor keeps uncovering the extreme judgements that I was raised with; basically you either have a successful career or you are a looser.
When I had my successful career this was all hidden. But when I left my career due to lymes, I started having MAJOR problems with feeling unworthy, feeling like a looser, feeling life was meaningless, etc. So all this toxic career-worship stuff came up in therapy.
After many years in therapy, we still keep uncovering deeper ways in which dad judged my worth by what jobs/achievements I had, and how that still comes up in my life.
So this is why I've struggled with feeling so unworthy and crappy about life without my career.
So, my job now is to ``re-brainwash'' myself with positive messages about myself and life. IT'S REALLY HARD! It's a major challenge for me to feel ok about myself being sick and not working. ---------------------
Well, those are my big struggles and I'm hoping folks can relate. Thanks in Advance.
Posts: 28 | From US | Registered: Nov 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Esea,
I can definitely relate to you! I became ill just as my life was about to start. I was 17 years old and a senior in high school. I had a lot of friends, perfect grades, was a varsity athlete in several sports, had tons of extracurricular activities. I couldn't WAIT to go to college with my best friend.
To say that my world was turned upside down would be an understatement. This thing devastated me. Doctors didn't know what was wrong, misdiagnosed with CFS, Mono, low thyroid. My friends tried to be supportive but had no idea the hell I was living.
My relationship with God fell apart. I was having panic attacks and I would try to pray that I wouldn't die during them and the feeling wouldn't go away. I thought God must hate me for some reason. Why would He allow this to happen to me? I had so much potential to serve Him. My mom always thought I would be a missionary when I was an adult.
I stopped reading the bible because I got panic attacks from doing so. I just found out this year that Lyme can cause panic attacks! Everyone knew I was sick, by this time I had turned 18 and they all waited for me to get over the 'mono' the doc said I must have. I started worrying that I must be demon possessed, why else did I think that I would die and that God no longer loved me.
It was a terrifying time in my life. I became extremely depressed, slept all day, could barely shower due to the fatigue. My muscles were so tired, it was so much effort to do anything. I often thought that I would die. How can one feel this badly and still be alive after 2 years?
I had been a gifted athlete, now I couldn't even walk a block. Once when I was home alone, I thought I heard someone say my name, and of course this solidified my 'demon' theory. I started going to church constantly, trying to get some relief.
None came. I felt completely alone. I gained weight and my mom being weird about weight, told me that I needed to exercise, since I wasn't eating a lot, it must be the activity. Now I know that Lyme can cause weight gain or loss, whereas I have the latter now and she's constantly trying to help me gain.
She was very much into sports and competition, if I did good, she was glad, but if I didn't do well, the car ride home, she would ask why I wasn't trying, ect. I hated it and when I got sick, I did awful in sports and she could be pretty mean.
She feels badly now as she knows now that I had/have a serious illness.
Sometimes, I still feel like emotionally, I'm a 17 year old kid. I've gone through periods of my life where I just go through the motions, I don't feel emotion. I've heard that if someone is abused as a kid, emotionally, they stay at that age, and I almost feel like this Lyme abused me to that point.
I sometimes get angry knowing that I could have been SO MUCH MORE! I could have been a physician or a veterinarian or a missionary. Why did this happen when I was just on the brink of adulthood?
I do think though that when I read about Job (my sister in law who is having terrible morning sickness with her first pregnancy was referring to Job last night), I know that he went through so much in his life and I think that my whining needs to stop. I still have a loving family who supports me. His family was taken from him. Yes I feel awful, but they are here for me.
I have had periods of remission that have been great. I've smiled, I've played, I've laughed. And I'm definitely better now than I was a few weeks ago, but I still mourn for what could have been. I just found out last month that I had Lyme. It's been a blessing to know, but when I hear of everyone not getting well, it makes me sad.
When I was in those dark times, I NEVER thought I would smile again. It was just so terrible.
Anyhow if you ever want to talk, Pm me and I can give you my info.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
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IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
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we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey e...
I went through this and have come out on the other side.
It wasn't easy.
I could write a thousand things for you to do... but I am not a wordy person.
Ok.. yes I am.. ha!
BUT..
My best advise....
Take that imaginary success bar you have hanging there in front of you.. the one that you strive to meet or beat... the one you come face to face with daily as your challenge of life....
And place it at a level that is reasonable for YOU.
Take that NEW success bar and make the top level reflect what you can do on a bad day. Then...
Use THAT as your new measuring stick for success.
The old bar was for a different person, a different time and a different place. Toss it out the window... NOW!
Example-
If you gained 100 pounds.. you wouldn't still be trying to fit your new fatter butt in a tiny pair of panties that you use to wear all the time... would you?
Doing so would make you VERY uncomfortable all the time.... and would make you look rather stupid to yourself and others.
So.... like those ill-fitted panties, Ms. Fat Butt.... toss out the ill-fitted success bar.
Make yourself a NEW bar.. one that fits the new you.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
One more note from the not wordy person...
Give.
Give.
Give.
Right now... think of someone who is in need of cheering up or some help.... and do something right now to fix that situation.
When you are done... do another giving act... a small one will be fine.. because to them it is a big one... always.
These are examples, little to no money involved... and they take approximately 5 minutes or so, each.
Mail a post card to someone that says I am thinking about you.
Call a store nearby and tell them they had a good employee who waited on you last time you were there.
Go to church ahead of time and arrange the books in the pews... all nice and neatly for the next service. That is not a bad place to hang out by the way.
Contact the local hospice and tell them you think they are doing a good job.
Write a short note to the local or state roads department.. or to the local newspaper's editor and thank the road crews for making the roads in your area nice to travel.
posted
esea, it's like learning how to be instead of do. We happen to live in a very "doing" culture, and then we fall off that bandwagon when we get sick like this.
To learn to remove judgement is a big challenge, but in the end, it may be a gift for us, as we learn to accept ourself for who we are instead of all the doing-self we think we should be.
Having said that, I still miss my doing self. So I try to find smaller, comfortable ways I can still participate in activities I love to do.
Posts: 13171 | From San Francisco | Registered: May 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I can relate to pitfall number 2.
As for my relationship with God....it has gotten better, richer and stronger
Due to Lyme disease. I thank God every day I wake up.
I thank God for Lyme (yes really).
If I didn't have it, I would never have thought to look for it in my children or husband.
Or various neighbors, aquaintances and friends.
A mixed blessing of a sort.
However, through this disease I've grown.
My focus has changed.
My goals have changed too.
I have always worked. Since I was 10 years old.
Katrina first put a stopper on that...then Lyme.
I am a Speech Pathologist who can't find the words to communicate sometimes.
Not a good thing for my profession.
However, I am not defined by my illness or abilities or lack there of.
I am richer in friends (Lymenet friends who I adore)
Richer in spirit, richer in values and the ability to trust my instincts.
I view Lyme as my trial. My cross to bear so to speak.
Kind of hard on the heels of Katrina which cost me my house.
Still Katrina I view as a blessing too.
We lost no family members. None. Some weren't so lucky.
Try to think of the things that Lyme has brought to you.
Yes it has cost me financially.
Worst is my inability to play with my children as they want me too.
However, I choose to look at this and think what gains have I made since Lyme.
Personal, spiritual and emotional.
For whatever reason, this is part of my journey.
However, I do believe that God is with me and loving me every step of it.
Sending you positive thoughts and prayers.
Geneal
PS: My Mom always said to me that if you knew you were going to die tomorrow,
Would your last thought be "Gee I wished I worked another day."
Kind of puts things into perspective for me.
Happy Thanksgiving!
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I know how hard it is to have faith in God when you are suffering. "Why" would God let this happen?!...is a thought I find myself thinking lately. But, I remind myself that God does not cause illness, I do believe that he tests certain people, perhaps to bring us closer to him, to test us, shape us, mold us, into the person he would like us to be... I often think of Job, even after losing everything, his home, family, belongings...he never lost faith...and he was rewarded greatly. He made it through in Gods timing.
----------
As for the counseling- I believe what they are telling you is dangerous for your health. You are ill, you need compassion and understanding, not to be told to brain-wash yourself... I think it might be better for your own sanity to find a Lyme literate psychologist, just to talk through the day to day issues with. Not some counselor who is interested in relating everything in your life to stuff that happened years ago....
God bless you and yours this Holiday season.
Posts: 371 | From CT | Registered: Jun 2008
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posted
Thank you to everyone for your heartfelt and thoughtful replies. Thank you Ocean for being able to relate to my pitfalls. I will continue to ponder this.
Posts: 28 | From US | Registered: Nov 2008
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posted
Very Long.... Couldn't figure out how to shorten...sorry
I have gone through many ups and down both physically and spiritually.
From 9 months till 11 years old I was sick every 3-4 weeks like clockwork. Fevers, nausea and vomiting, Urinary Tract Infections.
I was absent from school more than I attended. My mom was told I had a low immunity.
I was given antibiotics over and over along with high doses of radiation from x-rays as an infant due to a severe pneumonia incident.
For me this was just life. I didn't know any better and I still think I had one of the best childhoods.
At the age of 11, I was prayed for during a severe episode and after that I no longer cycled sick every few weeks. In fact other than an occasional cold, life was great
My father was a minister so church played a huge role. Education was very important as well. I was gifted as they use to call it. Even offered a partial scholarship at 13 to go to early high school/college but we didn't have the funds for me to do that.
I felt loved, supported, and like I could do anything.
My relationship with God with very important in my teens. I was active in overseas mission work during the summers, focused on growing my faith with bible study and prayer time, and had good friends.
I stopped attending High School in 9th grade. I had my 1st full time job at 15 and then at 16 I started at the local Jr. College early and had everything on track to be happy and successful.
The February before I turned 18 I was in a 5 car collision with my father. Ours was the bumper car that got hit 4 times at speeds averaging 40mph.
Physically we walked always in great condition but due to the impact we both suffered from allot of metal trauma.
I was put on heavy muscle relaxers for pain. Taking those along with whatever was going on in my brain put me on a path to poor decision making.
3 weeks later I was pregnant at 17. I still loved God at that point but I felt very guilty about how drastically different my life was from such a few short weeks prior.
I ended up marrying the guy even though my parents said that I did not have to make that choice. It was my way of absolving the guilt I felt.
To shorten this part of my life. I ended up putting myself into a relationship with a very unstable individual who had suffered through years of abuse. It was an extremely unbalanced and unhealthy emotional relationship.
Top it off we then became caregivers for 2 of his siblings who were teens for several years. One is now in prison for life for murdering someone at the age of 17
I stayed in the relationship for 7 years till I finally listened to my parents, who do not believe in divorce, telling me to get out and leave.
The divorce took close to 3 years and was a bitter situation. My ex was involved with legal substances but not in good way. He began to have mental breaks and in the end I got full custody of our 2 children and gladly walked away from any monetary support.
I was working 3 jobs trying to make ends meet but couldn't quite manage. I ended up moving in with family.
Shortly after that my body shut down. I couldn't move. Slept for hours. Didn't think to go to the Dr., so I just slept all the time.
This was till ongoing and nearing Christmas of 02 and I discovered a large breast lump that appeared overnight. Went to the Dr to have test run and also came up showing I had had a severe case of mono.
Everyone believed it was cancerous. Within 3 weeks I was in for a biopsy where my Dr requested that I sign forms allowing a total breast removal depending on what they saw.
Thankfully all was good. I had a rare from of mastitis that mimicked stage III inflammatory breast cancer exactly. What a relief.
Life was good again. I was enjoying my kids, being single and dating all the time, and working.
God had not really been a part of my life since my early 20's. He didn't fit into the equation and I didn't feel the need.
I was still jaded and frustrated with how many people act as Christians. I no longer wanted a part of that. Still believed in God but that was it.
I met a great man. Handsome, intelligent, driven and successful. Everything I could want.
We moved together not long afterwards and soon had the wedding planned. Life couldn't be any better.
I was having a lot of bronchial issues (i.e.: long lasting coughs, sore throats, strep infections) but I didn't think much of it.
Synopsis of our life since then has been
1. Became pregnant
2. Job promotion for Hubby
3. Moved a month before I was due to have our 1st child
4. Our new house fell though 2 weeks before baby cam (due to structural defects)
5. had to live with his Father and Step Mother for 6 month
6. bought a house that we really couldn't afford because we just wanted a place of our own
7. Fatigue set in after the baby - never went away - kept getting worse with new symptoms
8. I had severe dental problems - ended up with 5 root canals and 7 crowns in less than 4 months (if I had only known then how bad they are)
9. Bills escalating
10. My house is falling apart because I cant manage to clean or do anything
11. Oldest daughter is missing lots of school due to headaches and fatigue - diagnosed as infectious mono and strep
12. My Father died
13. Everyone thinks I am turning into a crazy lunatic and extremely lazy (I am beginning to believe them)
14. After 2 years of nonstop crazy symptoms I am finally diagnosed with Lyme
15. Told I have to quit my job if I want to be around for while.
16. Down to one income, now dealing with Lyme, bills are way to much
17. Put House on market hoping to get out before it's to late (now just waiting on the foreclosure process to start with the courts)
18. Stress is tearing the marriage and family apart.
19. My mom has to go in for a rare heart surgery
20. Our son gets sick with super high fevers and meningitis like symptoms and has to be hospitalized at the same time we are down there for her. Has since had high fever ever 5-6 weeks for a few days and complains of headaches.
21. Husband tested positive for Rocky Mtn. - seems to be fine now
22. Youngest son has 1 positive 1 negative test for Lyme
23. Oldest Daughter as an equivocal test for Lyme
24. Other daughter - unknown but not showing any signs yet
Some people think my life has seemed fairly rough. I still think I am one of the lucky ones.
Lyme has changed my life but for the better.
It brought my entire family back to God. My husband was not happy within himself. I was not happy either.
If not for putting our faith in Jesus Christ, we would have separated this past year.
I use to think that I was cursed. That surely I was being punished for turning my back on God for so many years and making many bad decisions.
I now know that life is just hard for everyone, but just in different areas. It's not fair but it part of the reality of living in a broken world.
There is always a reason for what we go through. All thing work together for good to those who love the Lord.
The problem is that it's hard to see the good in painful situations and understand how the suffering is actually helping mold us into something better.
Too often we don't understand the impact our lives have on those around who are just observing.
Because of Lyme I am less judgmental. I look at everyone with a difference perspective.
I now understand the power of support and the need for help. I have learned to open myself back up and give to others.
I am blessed because I found a church where the people are real. Not perfect but real.
They are willing to help anyone. They remember to not judge and just show love without asking for anything back in return.
Because of people who have decided to live authentically in a real relationship with God, I was able to open my heart enough to come back to life with Him and find happiness in something other than my bleak situation.
Life is still hard for me and I don't know if it will ever get better.
I have days and weeks at a time where I don't feel close to God or even have the energy to pray or read my bible.
However, regardless of how I feel I know I have a greater purpose and that is to try and always show an example of Christ love to those around me.
True faith doesn't have to be based on feeling. It just is.
You don't have to feel good about God to make you faith real.
Finding a good friend who was able to pray and encourage me has helped so much. PM me if you ever need someone to vent or pray with.
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