feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Seriously,
I know that there are folks who are worse offf than I am and others who have a better position with their wellness than I do.
I cannot and will not accept this disease and that fight alone is wearing me out.
20 years of this. It is hard. The younger part of life stolen. Diagnosis 2 years ago and HOPE given.
Nothing much has changed, aside from a 3 day span a couple of weeks ago when I felt some improvement. Since then, back to square one and worse.
I am to start a new protocol and wonder if it is worth it. I am so tired of this fight of feeling sick everyday...head pain, swallowing, breathing issues at the very least.
It breaks my heart to see my aging parents and to feel numb with illness, going through the motions just to make communication possible....I am in a daze in order to survive, exist.
I am questioning tbe quality of this life. I am so depressed and desperate and alone (even with loved ones). I feel like I am just going through the motions, this is not living.
And then I read a post and link about Jessica Stevens and feel ashamed that I allow my pain and sadness to get the best of me.....and I become more depressed and feel diminished by this.
It is awful just existing. How does one hold out hope? I hate this flipping disease. I want to beat it up and spit it out, fling it in the bonfire and watch it burn.
I feel ruined and pleasureless.....and only a small strand of hope keeps me hanging on.
Sorry to be a downer.
Posts: 3975 | From usa | Registered: Aug 2007
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I just saw the post you were talking about. It is a very sad post, and I think it would make anyone feel depressed.
But you have no reason to feel ashamed. I struggle with the same problem some times- I also am not as sick as some people, and so I feel like I am just weak and whiny.
But the truth is- you can only experience what happens to you. It doesn't matter if other people feel worse or better than you- what matters is how you feel, and how your disease effects you.
Try to remember that you can still have good days, even when you are feeling terrible. Perhaps you'll have a day where you feel better, or perhaps an old friend will come by to visit.
To be honest, people like you (people who have lived with Lyme for decades) are my inspiration. If you can survive 20 years of it, without even knowing what it was, then I can survive what I'm going through. I don't need to feel guilty that I'm not as strong as you- I need to feel hope, that this can be survived. Does that make sense?
My thoughts and prayers will be with you
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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posted
Welp, sounds like you have hit rock bottom. Just to throw something out there, do what you can so other people don't get this junk. People hit rock bottom over a lot of things, and I think, the only "light" is fight. Personally, I am a single mom and am now on a dating website stating that I am looking for a man with Lyme like me. It has brought a lot of awareness to all the outdoors people, like I used to be. I've felt really sad before and honestly do at this moment too (tears in my eyes), but maybe sharing the pain of this disease helps. We all feel like heck or at least a lot of us do. But, we don't want to die either because who knows what is on the other side. I'm sad with you, if that helps, but I have 2 kids who aren't able to support themselves so "folding" isn't possible right now. I don't know, I feel like a lot of things about my life have stunk, but you should realize you are not alone. But ready to give up? What is on the other side?
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
FF, Would you consider doing some salt/c? Is it realistic for you? I really feel that this disease has a huge parasite component. It was the only thing besides anti parasitic herbs that started to turn things around for me.
Your right BTW..this disease is a nightmare, and has taken the best yrs of my life. I refuse to let it win and think I am slowly pushing towards remission. Sorry you are feeling so down...but I get it,
-------------------- 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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posted
I don't know what to tell you, fit... but Nicole-Denise said what I was thinking.
I don't think you have anything to be ashamed of. You are fighting a tough battle.
I'll PM you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wow, this post saddened me a lot Feelfit. I wish I had the words to respond to it, but all I can say is I feel your pain. I have struggled mentally the last week too, especially after my trying to drive episode yesterday.
Nothing about illness is fair. Losing the best years of your life is devastating, I really need to put things in perspective (like so many others here) and thank my lucky stars at this moment, I can move my arms, walk a few feet, talk, etc.
Have you considered an anti-depressant during these bad times? I'm no doctor of course, but I'm trying to toss out anything that may help. I hope you don't take it the wrong way.
I think the most crap thing about this disease is we don't even know who the enemy is (Lyme, Bart, Babs, parasites, Cpn, 50 other things).
It's just not fair the way it tears your family up. Every week that goes by I can see it happening and am scared. If your family is supportive, please be thankful for that. Without that, we're done when disabled and unable to drive ourself.
Every moment/documentary about this illness has turned on me with my wife. Animal Planet was on tonight and they re-ran the Babesia segment. I was excited and told my wife this is what I think I may have. She watches 10 minutes of it and makes fun of me badly. Same with UOS.
I hear what an idiot I am for considering this illness. I have none of the symptoms. The docs I see don't know what they are talking about. I'm not 'as sick' as that guy. That guy took his prescribed meds and got all better. My lazy ### wants to sit at home and not work and not take my drug and get cured. I was so upset I felt like exploding. This happens over and over and over when these episodes/discussions come up.
Between the physical symptoms, mental symptoms/abuse we get dished out by docs, uneducated people, and more, it's a miracle we are strong enough to get up each day. There has to be better days.....
I hope there is some light for you soon. Maybe salt/C would be worth a try. I'm skeptical of all that stuff, but part of me wonders....what if? You've hit Lyme hard. You're going after Babesia.
It DID not help you had substandard Lyme / cos care for a long, long time. Wiping out regrets / lost time is not easy. I know. Try to be thankful you have the financial means to afford Lyme care, don't have to worry if you will be kicked out of your residence in a year, two, or a month because money ran out and disability was cut off.
PLEASE try Bart treatment before saying you're beat. If I recall you've have horrible treatment for this co-infection. it's a crime you treated TBIs so long and the issue wasn't even addressed!!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
One other thing. Try to do something, anything that actually feels good. It might help your overall chemistry. I do know what it is like to feel really, really sad and feel like this just isn't worth it. Just stay with us. We're all sad, but at least we have each other. You know what I did today. I rode a bike for the first time in a long time, and I felt fit. See, God is listening. Don't let go unless he tells you to.
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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bettyg
Unregistered
posted
feelfit
i'm so sorry you've hit rock bottom on your emotions, but glad you are sharing your feelings as many on this board have/ARE going thru what you are today.
may you pray to god for his strength in carrying you at this time of your life, and guide you. in his name amen. xoxox betty
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
So sorry you're feeling this bad, but glad you can share your feelings here.
I know I'm nowhere near as bad as many on this board, but I get feeling frustrated and discouraged too. I wonder if I'm really treating Lyme or if it's some other unidentified disease, or if I'm just crazy like my other doctors thought.
And I get angry too, when I think about my brother who does nothing but go to work, come home, and sit on his butt drinking and smoking. No friends, no social life, and he's healthy as a horse--or at least seems to be.
How is that fair????
I just have to remind myself sometimes that this life isn't fair, and that I have a hope outside this world.
And I have to hold on to the good days, or even the good hours or minutes--any little thing that makes life worthwhile.
Hang in there!!!!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
If you hit a few good days you will hit them again. It is very discourgaing when you feel well and you get your hopes up thinking I may be better. Then all the symptoms are back again.
Try to keep your hopes up and keeping searching for answers. You may be going through another herx. Have you changed meds or are you on the same?
You are a strong woman and will fight this and beat it!
Posts: 323 | From Michigan | Registered: Sep 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
ff,
I am so sorry you feel so bad, I am here for you.
hugs,
melissa
Posts: 3905 | From USA | Registered: May 2007
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you guys and gals. I feel a little better today. I am almost embarassed about my post, but as Nicole-Denise has said, they are my feelings and I will own them.
You don't know how much your support means to me. Big ole lump in my throat.
Seek, it is tough for a guy. Your wife makes me mad....so, so, not right. I do count my blessings that my family is supportive.....everyday.
Better health to all, Ff
Posts: 3975 | From usa | Registered: Aug 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I do the same thing feelfit, I post that I can't do this anymore, on my really sick days, then a couple days later, I'm like, why did I do that. How embarrassing.
But it's not. The fact is that we go through tese really "down" times. And if you can't come here to post about it, where can you go?
Just try to remember the next time you get that "can't do this anymore" feeling, that you got through it the last time and you will get though it again.
You should not feel bad at all about posting this thread.
You did the right thing telling us how you feel.
We are here for you and understand your pain. Some of us have horrible pain for others it's more mild, but your pain is very, very real and we are all there for you.
We are all in this together.
I am sending you big hugs and prayers just like I am to Jessica.
You will have a special place in my heart and in my prayers.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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I have a daughter who has been going through just about all of the feelings you've expressed in this post.
I'm sure there are pains and hurts that you've experienced that she hasn't and vice versa.
I spent more than half of my adult life in the military. I met incredibly brave and unselfish people over those 25 years, some that would take your breath away just being in their persence.
However, I have never met or been around anyone more brave than my daughter (Nicole) and, through this forum, people like you.
How Nicole has been able to suffer through these past 8 to 9 years without doing something to herself physically is beyond anything I think I could endure.
I think that every once in awhile you need to let your guard down and complain a little. I never trusted a GI if they weren't complaining about something.
You get the frustrations off your chest, cry inside or out, then get back to work.
This disease is tough, it's painful but bottom-line it can be beaten.
My little girl (she's actually 31 now) is on the way back to being herself. She says she lost her 20's to this battle, but she's not going to lose her 30's.
You get that same attitude! There is hope! There are people out here who care and there are truly good doctors who can help.
You are in our prayers.
Don't let the little *******s (bacteria) get you down.
Posts: 681 | From California | Registered: Oct 2005
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In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Lies, Dakotasmom,Kam,Lymedad,
From my heart, thank you. Kam, waiting on that limo, I expect you to be sitting there with some bubbly. First we will go to dinner at that restaurant that sits on the edge of the mountain and overlooks that lush green valley....the air is so fresh, just awesome! What are you going to have for dinner? I am having magnificent starlight for dessert.....I love taking these trips with you!
Dad, thanks for that wonderful story and the inspiration.
DM and Lies, I appreciate you guys so much!
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Hey, have you seen those stretch Hummer Limos????
I actually think we could all fit. LOL
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi there Feelfit,
I've had to come here to for support. Don't be ashamed. For some of us, this is our only support. Sad but true.
This battle sure can be tough. I was thinking just yesterday how I'd do anything to have my life back.
I don't even recognize myself these days. I used to be able to do anything.
I really miss being able to work hard and play even harder. Was so independent and adventurous.
I've come to believe over time that you play the hand your dealt and do the best you can.
Anyways, you're not alone, and if I can help, let me know.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Wolf, and Cotton,
Thank you. Sorry that we all have these challenges....so many! No support groups in my area Cotton, I am near the UP of MI.....
But, obviously, I've got all of you!
Cotton, you can drive, but no bubbly for you. LOL
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
First we will go to dinner at that restaurant that sits on the edge of the mountain and overlooks that lush green valley....the air is so fresh, just awesome!
What are you going to have for dinner?
I am having magnificent starlight for dessert..
wow. That was fun!! Thinking about what I will eat..not sure yet...
But, dessert sounds like heaven!!
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
feelfit,
You are not weak, but just the opposite....
you are very strong to have endured so much.
We all understand your feelings on different levels.
I often wonder....ok, when is all this terrible pain going to improve?....
But then I have to pause and remind myself that God has a plan and I have to do everything in my power to help myself....and He will help me.
I never would have guessed, 22 years ago when I became ill, that perhaps the purpose of my life was to suffer with these infections, and discover the cause of my illness on my own 21 years later, so that I could become passionate about helping others with the same fate.
God has a plan for you too. We usually can't figure out why it has to be so hard, or why is there so much suffering?
I thank God for people like you on this board.
You are honest about your feelings and are here to offer help to others even though you suffer yourself.
When you have those bad days, we are all here for you.
I will pray for you...that you have improvement to give you more hope....that you have the strength you need to keep going everyday.....that you continue to help others in ways that you don't even know.
You are not weak...you are strong.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
((((Dekrator))))
Posts: 3975 | From usa | Registered: Aug 2007
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
We are all in this together. One for all and all for one. We are to share one another's "burdens" and encourage one another, exactly what's happening!
Together we are Lyme Survivors (Some days--minute by minute--or second by second).
The darkest hour is right before the dawn.
Posts: 2188 | From Oklahoma | Registered: May 2008
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posted
Feelfit, I'm so glad that you posted, even on your bad day.
When people see it, and then see awhile later that you are feeling better, it helps them know that they can get through it too.
I've had Lyme 26 years, and was not diagnosed till last year. So I can relate to everyone's post here.
The times I went into remission were the years I ate perfectly. not an easy thing for a sweet tooth girl!!
Try for a month. Whole grains, 1/2 grapefruit, lean meats, plenty of veggies. (actually for lunch I had either broccoli or spinach each day) No sugar or anything with sugar in it.
Took about a month to start feeling better. It doesn't get rid of it, (I didn't even know what it was!) but it helped me.
Emotionally, I would never have survived without God. I do know in my heart what comes after this life, but that doesn't mean I'm done with my work here yet. I dont think you are either, although I understand the "throw in the towel feeling".
When I get down, I pick up the bible and just "read the red", and I chat with God. In a redline version the words of Jesus are in red. Somehow just reading Jesus' words is very comforting. It's all about the love. =)
Do whatever brings you happiness, and do it often. We are taught to be so productive and if we're not then we're useless. Be useless for a year on purpose, just focus on you and doing what makes you feel good each day.
OK, now I'm going to go and take some of my own advice. LOL Maybe a soak in the tub with epsom salts and a good book!! Keeping you all in my prayers and remember.... You are never alone. Chat with God. He likes to hear from his kids.
Recipe of the day. Boil 3/4 cup water, add 3/4 cup oatmeal. (I use Quaker Old fashioned kind) Cook 3 minutes and add fresh fruit, walnuts and cinnamon or nutmeg. Yummy and not mushy like the recipe on the box. Enjoy! Wishing you blessings.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Melodymaker, my friend, as always, blessings.
Posts: 3975 | From usa | Registered: Aug 2007
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I was 26 when I got Lyme. How old were you? You can pm me that one if you wish, and if you've already told me... then I claim Lymebrain. =)
Just had a thought.... in terms of eternity.... we are still in our youth!!! Do something that brings you joy today!
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
27 yo. melody.
Posts: 3975 | From usa | Registered: Aug 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
FF,
I am glad you dumped your toxic feelings here too. We all understand it more than anyone else can.
My husband and I have come to recognize that whenever I have a flare up of pain, my mental fortitude takes a nose dive and I sound just like you.
So, he always says "Honey, you were feeling great the other day and this is just a flare. Hang in there."
He is right and it does help me to be reminded.
Crying and venting are good emotional detoxers as long as you don't stay there and dwell in that awful place.
I am glad you are feeling better.
The new "Lyme Strategies" book addresses this and says one of the downsides of websites like this one is that the sickest gather here. Many many people get well and go on but there are a few of us who fight the battle longterm and we tend to be the ones chatting here and it skews our view of the disease.
This is really true. On the one hand, it is great to have a resource like Lymenet. I find it invaluable whenever I find a new bug (illness) and come here and read the experience of others who have suffered and beat this bug.
On the downside, we can begin to believe it is all hopeless if we focus only on these boards where a small group are not completely healing.
I do really really well in my battle but I am in my 4th year and have not yet put rheum arthritis into remission. I struggle to stay positive about it and I have found I had to move away from this board and start focusing on other things in life besides the illness.
It has helped.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Luvs as always, very good advice. Thank you,
Posts: 3975 | From usa | Registered: Aug 2007
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