posted
I have come to the realization that after being so sick for over two years, being bedridden and have the SAME debilitating symptoms day in and day out making it feel like these 2 1/2 years have been one LONG scary, horrible day.....
I have realized that I am NOT going to get better... I either need to find peace in that... or just end it all together.
My kids have no mom... my fiance has no wife....
I cannot take one more day feeling like this... NOTHING HELPS...
I try EVERYTHING... nothing tames the symtpoms... nothing.. nothing ... nothing...
Some people just don't get better.... I have said before that I lost hope... but I REALLY feel NO hope in any part of my soul.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Shandy,
When you choose HOPE anything is possible. It is a hard premise to work from. I have to remind myself of that everyday.
Like you, in two years time i have gotten very little symptom improvement. Everyone suffers (our loved ones). We can't stop trying.
In moments of weakness (or is it strength) I have thought that I could not take one more minute of this either....However, we are amazingly strong...
You are amazingly strong, keep trying, it is better than the alternative.
And you are allowed to have times when you question the quality and purpose of existance with this hell.....
keep trying sister, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Shandy, you do too have hope somewhere, you demonstrated that after your appt with Dr. H last week. Go back and read your FB posts and see. Start fighting.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Have you been treated for parasites and worms? Please check the symptom list at www.humaworm.com and see if these fit
. A MAJOR component of lyme is parasites and worms. You can get well if you go after the right pathogen,
Please don't give up,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Sending prayers for better days and for Hope.
I am so sorry that you are in such a bad place right now.
Your children need you.
Please hang in there.
Wish I were close enough to give you a hug and a shoulder to lean on.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Oh Shandy honey, how I wish I could transcend the barriers of distance and give you a big hug right now.
I've been where you are a thousand times. Most of us have. You've been here before and you made your way through it. You can do it again.
There are so many people here who love you and care about you and we're all pulling and praying for you. You are strong Shandy and you are a fighter. If you don't hang on to anything else, hang on to that.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
You may feel they have no mother or wife but they do not. I guarantee their lives will not be better without you. That is just a fact that you must accept.
The other fact is that as long as you have life there is hope. Time can provide answers that you don't have now.
You can try to accept that this is how you feel now and you may stay this way for some time more. That might help you find some peace. But hope is still there whether you feel it right now or not.
Please rest and find comfort.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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posted
I am so sorry that you're at such a low point. I've so been there and, most likely, will be there again. No doubt about it, it's so horrible. I get it.
Please look back on these two years. You have had some moments and glimpses of feeling a little better. Please try to hold on to that and BELIEVE you will be better one day. Don't beat yourself up for hitting a low point either, we all do. Continue to vent to those who truly understand. We're here for you.
Keep shaking your treatment up...something, at some point, will help you to improve. It's an awful reality that it's a very complex illness to treat, which totally sucks.
Your family needs and wants you. I will be thinking of you and praying for you. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
Thank you for all of your comments, prayers!!
I am trying to pull myself together. The hardest part of ALL of this is that I cannot take care of my children, which hurts more than the sympoms I think. Since my daughter was born I have been sick, so I dream of days running through the grass at the park with her, taking her for walks, and just being able to get up and make her something to eat.
My son had me for a good 10 years... It is too hard for him to see me like this so I barely see him, and when he does see me he just cannot handle it.
I guess I don't understand why A lot of people who are sick can still go out, shop, make food, go out with friends, etc.... and I cannot do those things,
My symptoms are 24/7 everyday, wake up and go to bed with them... severe neuro stuff.
Severe head/brain pressure 24/7 which causes dizziness (even while laying down) imbalance when trying to walk, hard to lift head up, concentrate, slurred speech, etc..
Have you ever gone out all to drink all night and then when you get home to lay on your bed everything starts spinning, so you put one foot on the floow to try and stop it... thats me 24/7 for 2 years straight
I cannot stand to shower, I have a hard time sitting in the tub because of spinning
heat intolerance
body weakness, hard to stand more than a minute, hard to even walk to the bathroom... need assistance.
pain throuout body,
cannot cook, clean, etc... it is VERY hard to describe my symptoms in words...
I never feel good, EVER... even when my symptoms were at about a 5 for a couple of months I was STILL agonizing daily.
I don't know what I am really dealing with... I have been on abx, herbs, etc... Nothing really seems to help.
I am starting to wonder what the hell this is that would leave me so debilitated like this for SO long... This ALL started in my pregnancy with my daughter... ALL these symptpms. so I have had them since January 2007 and they have NOT gone away since. Wake up and go to bed with them like they are my natural state of being.
So that is why I don't know if I will get better... this does not get better, it doesn't change, it doesn't go away for a few days.. it just IS. It makes NO sense to me at all???
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Are you near a local support group? I think it would help if you could talk to other Lyme patients in person.
Have you stayed with the same doctor? If yes, maybe it is time for a second opinion.
I know of people who were in a wheel chair and now walk. I've met one. So it is possible even when it is the worst, for it to get better.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Aniek--- There are support groups near me, only problem is I am too sick to go to them
I stopped seeing my LLMD for 7 months because I thought I knew better and started self treating with a chiropractor... I did have some improvements for a bit and was actully walking a bit, and getting out... Then I hit ROCK bottom again... and have just started going back to my LLMD...
Lymetoo--- I have been thinking about rifing.. but I JUST got back on abx after being off of them for like 7-8 months... I was doing ONLY herbs... and well... here I am! Can you NOT do RIFE while on abx??
Also if you are too sick is rife dangerous??
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I'm gonna butt in here and answer the questions you directed to Lymetoo. Yes, you can start off doing abx and Rife together. Rife is MORE effective w/o abx, but it's still effective either way.
For the first several months of Rife therapy I stayed on abx. I'm now finally off all drugs and just doing the Rife.
I don't think you can be too sick to do Rife - I think probably the sicker you are the MORE you need Rife. You just have to start out slow and easy. My Rife herxes are harder but more tolerable than my abx herxes - I know that sounds wierd...but it's the best way to describe it.
Hang in there girl, you'll find your way!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Keep trying things and ruling things out. Don't take anything as gospel.
I had bad neuro symptoms, leaving me bedridden and unable to walk. I have been trying to treat babesia and bartonella agressively with herbs and it is helping... seriously. Maybe you don't have the coinfections, but keep an open mind...
Challenge everything, and always have an open mind.
Posts: 73 | From ca, usa | Registered: May 2009
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posted
My situation is very dire too. I totally understand the frustration. A few months ago I read an article online about the traits shared by survivors of impossible situations -- those people who survive natural disasters, being stranded at sea, abduction, etc.
At first nothing struck me in the list, but then there was the simple line, something like "No matter how hopeless it seems, there is always something else to try." This was a belief and practice held in common by the survivors.
I know it's simplistic, but when you think about people outswimming sharks, outrunning murderers, etc., it's no small thing to keep in mind there is always something else to try -- always. That might mean treading water for a long time, but survival is hard work, requiring constant rethinking of what you're doing.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Can you look at support group meetings like doctor visits? If you are able to make it to the doctor once a month, can you also push yourself to go to the support group once a month? Our psychological health is as important as our physical health.
I've been to support group meetings where somebody lied down on the floor through most of the meeting with a pillow and a comforter.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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