I really hate coming off sounding like a whiner or something, but I am at a point now where I really need to hear from anyone out there who has been thru living with Lyme for a long time.
I basically have lost nearly everything due to this disease: the years of misdiagnosis, worthless, dangerous, and expensive treatments, and probably the most, all of the missed work and income....
Not to mention all of the times when my messed up brain wouldnt allow me to think properly, make good decisions, or even allow me to deal with people well.
Anyway, I have only 2 family members who give a damn: one is my 83 year old aunt (whom I take care of), the other is my 58 year old cousin, who is on the verge of losing her job and has her own family issues.
All of my life, I have been the person who was there for other people. My work as a nurse, as an educator, as a clinical lab tech --- all of these require one to do for others and think of oneself later.
I didnt mind doing this, in fact it made me feel good to actually contribute and do something for people who couldnt do for themselves.
I volunteered, I worked with support groups for individuals with HIV. I took care of a half-dozen friends who were dying of AIDS back in the early 1990s. I was happy to do this.
Then eventually I got to my "dream job", in music, where I got to have my own radio shows and hang around with some really big names in the country and alt-country music business. I did promotion, I organized concerts, I had a blast.
However, in recent months everything I tried very hard to keep together fell apart, losing my work, my car, and alot of my self.
Recently I posted because of my concern about not being able to see my LLMD without a car, and the loss of income has limited my ability to have my meds.
But the thing is ---- I can deal with all of that. I can find ways to deal with all of that.
I can take pain --- I have had those massive headaches that make one want to put their head thru a wall.
I can take being sick --- I have had everything from seizures to inability to swallow food to joint problems to just not being able to get out of bed without falling over.
I can even take being close to death at times from heart and other Lyme-related problems --- none of that even phases me.
No, what is hurting me most and what I'm having a hard time coping with is that I am very much alone.
I realize now that with my life and work, the people who had been in my life were not my friends --- they were patients, they were colleagues, co-workers, or in the case of my "music career", people who wanted my services.
I have been banging my head against the wall trying to make many of these people understand and be there for me. I have made myself feel guilty, feel like a failure, feel worthless.
And get angry that no one cares.
Anyway, look --- I know that here on this board there are people who are better off than me, worse off than me, and some who are in the same place as me.
I really need to hear that I should go on, fighting the fight. That I am not alone in this.
Thanks. Mari
-------------------- 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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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I am so sorry you feel so alone. Of course you should fight the fight. You must be very toxic right now. I suggest really pounding the water and lemon water, detox teas and take a nice warm bath with epsom salt and candles for relaxation.
Picture what you will do when you are well again.
How bout a local support group? So you can have real people to talk to... not just fingers on a keyboard.
I find solace in reading books on prayer and healing. I know for many with Lyme, reading is not an option.
Meditation?
Here's a hug.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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i don't think it's about chronic lymies that get it.
I am not a chronic lymie, nor am I am lymie. My husband is a lymie/plus recently dx with MS at the beautiful age of 41yrs old.
In my 3 WHOLE DAYS on this blog site I have been utterly astonished by the feedback and immediacy with which I have been "taught", and consequently learned, from all those whose lives have been touched by this phenomenon.
Everyone comes here, to a certain degree, with their head held high, a smile, an idea and ubiquitous amounts of patience to learn and help others learn.
I think that fact that you-Missmari, Momlyme and me-clueless are here is proof enough that you are not ALONE!
Godspeed to you and all!!
Less clueless than 3 days ago ;-)
-------------------- Change is inevitable Posts: 77 | From France | Registered: Jan 2011
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Mari
Welcome to Lymenet.
You are here, with us, and you are not alone. Not now, and not ever.
There are thousands of us here, just like you, fighting an uphill battle, medically and socially.
We're like war torn vets, bumped up and dumped on my the medical community, and almost NONE of us can believe we've been through what we've been through in this day and age.
From the little you've disclosed about yourself, I think perhaps the biggest struggle for you right now might really be that you feel like you have no control over this. When you really do.
You just need a helping hand to get you from 'flight mode' to 'fight mode'. And that is where we all can help.
This battle indeed sheds light on who's got your back, and who doesn't. And I have a feeling, that like me, when you get to the other side of this, you're going to realize that who heck needs the loser fake people anyway.
So we're here to catch you, and it's ok to fall right now if you need to, ok? Just remember all the good you've done for others in the past and know that it does get paid forward. You need backup, we're here. No justification necessary.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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it is a huge sadness and loss when family,friends etc..loose interest in you. They disappear....poof!
this site has been a life line for me.... at first it seemes like ...how could you get soooo much support and care and uncouragement from strangers typing into a computer....but it's there....anytime and EVERYTIME I come on and need encouragement,support...or just an ear to hear me..it's there...poof!
fight the fight Mari...we all need each others strength....
hope today is a better day..and if not then maybe tomorrow will be...either way we are here for you!!!
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I know exactly how you feel. I thought I was a tough guy, and maybe I still am, but this disease can break -- or at least significantly erode the will of anyone based on what I've observed.
We've got to survive though, it's in our best interest, right? Whether anyone is there for us or not -- that's the bottomline.
I've worked hard to help people understand, and it has done little to benefit me. Friends have mostly left, people I've helped have mostly appreciated it, but that's all they can do. They can't save my soul or change the course of what I experience or feel -- not unless they have a solution on hand that is actually effective.
I help, others have helped me back, but I had to beg for it. Imagine being an American male, and having to beg, all the while maintaining some dignity?
There is none. The dignity disappears, the independence disappeared, the self-esteem disappeared, and sometimes, the will to go on disappeared.
I'm still alive though. I still help those I can, and I ask for help from anyone who is willing, whether it be the government, my doctor, my one close friend (locally) and my few close friends across the world. I ask my partner for help, but she's sick too. It's hard hard hard to keep the relationships stable and sane. It's hard to stay centered when you're constantly being jerked around by this complicated illness.
In the end, I'm still here, I've made a commitment to not quit. I may fail, but like I always say. Even if I never win, I'll take it to the bitter end. I expect to win though, and I do the footwork.
I rarely complain here, but in my personal life, I feel pathetic given how much complaining I do. It's hard not to when almost every single part of your body isn't working correctly. Some things are worse then others symptom wise, but mostly, it's an overwhelming systemic illness which emasculated me socially, emotionally, financially, and worst of all, romantically.
Still, I persist in almost all these areas. You should too so that you can get back to living as much of the life you had, or wanted to have.
-------------------- 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.
posted
Thank you Thank you Thank you --- all of you who jumped on this post!
You have no idea how good it feels to have people actually hear me and send their support!
I absolutely have found something in each of your replies:
yes --- it feels like being a war torn vet!
yes --- it hits you in the gut to have to ask for help, especially when your role has been to be the strong one!
yes --- it rots to have family & friends just fall away (that's the one I have most trouble with; I would never have left my family members or friends when they needed me most)!
yes --- it just goes on and on and sometimes I look back on it all and I amaze myself how I'm still here and all the crap that went on! (and still does)
Thanks for helping me pick myself up off the ground.
-------------------- 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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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Mari, please also join us on www.lymefriends.org. We also have a nightly chat room which you might find very supportive. To get a log in name and password, please email [email protected] and he will set you up so you can come in.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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mtree
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