I feel like I am never going to get better...

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sosickoflyme
Regular Member


Date Joined Aug 2008
Total Posts : 31
   Posted 11/10/2008 6:46 AM (GMT -7)   
I feel like people think I'm crazy
 
I feel that after a year of treatment and not a good day in 3 months, I'm never going to see the light
 
I feel like I'm being punished for something I did
 
I feel like wellness is a thing in my past
 
I feel like my husband is being cheated out of life
 
I feel like I'm in hell

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/10/2008 7:47 AM (GMT -7)   
I feel the same way.

goodoldtimes
Regular Member


Date Joined Mar 2008
Total Posts : 96
   Posted 11/10/2008 8:26 AM (GMT -7)   

hi,

I'm sorry to hear how you feel... Unfortunately I think a lot of people feel the same way sometimes. I do sometimes...

Lyme is  skull but you can beat it. Hang in there!

What kind of treatment do you have?


Nurse
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/10/2008 8:48 AM (GMT -7)   
Hallo,

kann mich nur anschliessen !!!
Jeder Tag ist mit Lyme einfach nur schrecklich, schmerzhaft und unberechenbar.

ES WIRD MIT LYME NIE LANGWEILIG !!!!

LG

Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 11/10/2008 9:38 AM (GMT -7)   
sosickoflyme said...
I feel like people think I'm crazy
 
I feel that after a year of treatment and not a good day in 3 months, I'm never going to see the light
 
I feel like I'm being punished for something I did
 
I feel like wellness is a thing in my past
 
I feel like my husband is being cheated out of life
 
I feel like I'm in hell

1. Something I am quickly learning is to stop caring what people think.  If I get better, this will definitely be one of the "gifts" I take away from this experience.  They will never know what it feels like unless they actually had to live the experience.   Take comfort in knowing that there are people (here on the forums) that do know what it feels like which definitely verifies that you are not crazy.  You know that you are not crazy and that is all that counts in the end. 

 

2.  Dr. Burrascano had to take Ceftin for 23 months before he got better... and that was just his first step of recovery.  He had to go through two more steps to get better.  We have all heard stories that it can take some time.   Personally I am in utter disbelief that it can take a few years to get better, but it at least brings me down to earth when I worry about how long it has been.  I also realize that my Lyme symptoms snuck up on me over a period of a few years, so it would seem logical that it would take some time to get better. 

 

3.  Ah...if I had a nickel for every time I thought I was being punished with Lyme for something I did, I would be a rich man.   Honestly though...look at all the evil in this world that goes on daily.   Do you really think that in the grand scheme of things you are being punished for some possible minor transgression while these other people get no retribution?   If anything this forum has taught me is that all of us seem to be pretty decent people, yet we all have Lyme.   Try comparing yourself to this group (to which you belong) and stop comparing yourself unfairly to normal people.    When you are back to normal, then start comparing yourself to normal people again. 

 

4.  I have this feeling too.  It's hard to do, but I also realize that >>IF<< there is a path to wellness again, it certainly isn't going to be achieved with negative thoughts.   It's pretty simple really; will you get well faster with positive thoughts or negative thoughts?  I think we all know the answer in our hearts.  There are plenty of stories of people who get well after having Lyme, but there certainly are far, far less of people with Cancer, HIV, Kidney Failure, Liver failure, etc...  You see where I'm going with this.   Lyme is horrible, but it could be worse.    Also, in the grand scheme of things, if I never get well, I want to be able to die knowing that I tried everything possible to get myself well.  I don't want to be handed some flimsy excuse in heaven that I didn't think positive.  I want to go to heaven and say to God's face...here I am, and I tried EVERYTHING reasonable to get better.  Positive thinking is a reasonable requirement for an attempt to get well again.   But in all fairness, what any of us consider "everything" will be different from person to person.  Even so, positive thinking is the least you could do to help yourself. 

 

5.  I feel the same way about my wife and after much thought, I'm going to have to throw this ball back into God's court.   There is nothing I can do to change how this is affects her.  It's one of those darned if you do and darned if you don't things.  Personally, I wish I could let my wife move on and start over...even if I eventually get healthy.  It is not fair that her life has to be put on hold, but unfortunately the world is set up so that you can't do that because of the social and ethical stigmas that would be associated with it.  So for worse, our spouses are STUCK with us, and I know beyond a shadow of a doubt that my wife has done nothing to deserve THIS.   So, like I said, after much thinking on the matter, I'll let God explain it to her since it's his plan that forced her into this situation.   Just for the record, I'm not mad at God, I just have come to some very realistic expectations regarding my situation and his role in my life.   That being said, if you think about all the other heinous acts in the world that happen every day, the explanation he gives my wife will pale in comparison to what he will give to others.  Just another way of saying, it could be worse I guess.   What you should take away from this is that its not your fault, and you are unfairly shouldering the burden of something that you had no control over. 

 

6.  I agree with you there.   Again, thinking on this matter for some time, I honestly believe that we are living in the proverbial hell, or at least this world is really just one big test.  Why is it that everything in this world is geared towards making your health worse (aging, disease, accidents, murder) but there is no equally strong opposite that allows us to gain better health?  It’s either a normal bill of health or declining health...there is no super level of health.  I feel like we are unfairly confined to one half of the spectrum.  Medicine, if we are lucky, only brings us back to the normal level of health, but there is nothing in this world one can do that will result in superior health.  Why can't there be an "infection" or an act or a chance occurrence that results in superior health instead of worsening health?    So I'm with you on this point.

 

I'm glad you came here to vent...to people who understand what you are going through.  This always helps me.   Also, find some small things that make you happy and do them as much as you like without feeling guilty.   I know that I watch a lot of TV now and will spend a little extra on DVDs and such because I know they make me feel a little better.   So treat yourself well in the areas that you still can!!  Hang in there!!

 

Post Edited (Chris L) : 11/10/2008 2:05:14 PM (GMT-7)


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/10/2008 12:21 PM (GMT -7)   
Oh my God Chris, your post made me cry. Awesome, my friend...written straight from the heart. Take care-  Diane

sosickoflyme
Regular Member


Date Joined Aug 2008
Total Posts : 31
   Posted 11/10/2008 12:36 PM (GMT -7)   
Thank you Chris.  I needed that.  You are right on every point.  One thing I am positive is that I am a kinder, more patient and understanding person by virtue of being in these trenches.  I know in my heart I wasn't before Lyme.  I'm going to reread your post.

Dx Lyme Oct 2007....symptomatic for at least 3 years.  Oct - Dec 2007 Doxy 200 mg/day, Jan 2008 Ceftin 1000mg/day, Jan 2008 - 10 weeks IV Rocephin, April 2008 - August 2008 Ceftin 1000mg/day with Zithro 250mg/day,  changed LLMD's Oct 2007...currently dx with Bart and Lyme maybe Babs too...on Omniceff 600mg/day and Levaquin 500mg/day.
 
"Gees, you don't look sick."


beths
Veteran Member


Date Joined Aug 2006
Total Posts : 690
   Posted 11/10/2008 5:31 PM (GMT -7)   

A note of hope-I was so sick from lyme, bart and babs. I couldn't leave the house, could only sit for a few minutes, had a racing heart, dizzy.. you name it. On antibiotics for 18 months straight..little improvement. I felt my kids deserved a better mom, my husband a wife.

Suddenly, around 20 months in..my symptoms started to disappear. I finished 2 years of meds..it was pure h#ll. However, my family statred with me..that's what love is.

I worked a full day today, made dinner, waiting to fold the laundry, then clean up the kitchen. I'm tired, but doing great. I have been off abx 1 month (Keep your fingers crossed, say a prayer for me)

It does get better-for some of us, it's not gradual..it was like I went from all bad days to mainly good ones overnight.


Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 11/11/2008 9:49 AM (GMT -7)   
It's good to hear another "long term" success. I think the biggest problem with Lyme is that you have to remain calm but be aggressive at the same time, and that's hard to do.

Dowa...it seems we share a lot in common by way of symptoms, so it doesn't surprise me you and I have a similar outlook. I guess we'll have to make room for sosickoflyme. : )

How are you doing today sosickoflyme?

sosickoflyme
Regular Member


Date Joined Aug 2008
Total Posts : 31
   Posted 11/12/2008 11:21 AM (GMT -7)   
Well, still sick of lyme, I guess, but glad to hear a success story here and there.  I think when people get better they don't post on the boards as much so you don't really know what happened to them.

Dx Lyme Oct 2007....symptomatic for at least 3 years.  Oct - Dec 2007 Doxy 200 mg/day, Jan 2008 Ceftin 1000mg/day, Jan 2008 - 10 weeks IV Rocephin, April 2008 - August 2008 Ceftin 1000mg/day with Zithro 250mg/day,  changed LLMD's Oct 2007...currently dx with Bart and Lyme maybe Babs too...on Omniceff 600mg/day and Levaquin 500mg/day.
 
"Gees, you don't look sick."


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/12/2008 12:02 PM (GMT -7)   

I feel the same way and have no dx yet which is very hard for me. Drs think I am just stressed, and my friends are calling me a hypochondriac. I am stressed because I dont know what is wrong with my body and I feel it getting worse and I am not a hypo but its hard not to think you have certain things when you have no dx yet for what is going on with your body.

I feel so hopeless over all of this and have never felt so low in my life.


----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/12/2008 7:32 PM (GMT -7)   
sosickoflyme said...
I feel like people think I'm crazy
 
I feel that after a year of treatment and not a good day in 3 months, I'm never going to see the light
 
I feel like I'm being punished for something I did
 
I feel like wellness is a thing in my past
 
I feel like my husband is being cheated out of life
 
I feel like I'm in hell
1.  Only sane people question their sanity.
2.  I have no idea how long it's going to take for me to get better.  One thing I kind of figured out was that with LD, you never get to end the "grieving" process.... once you get to "acceptance" you get hit with another unbelieveable symptom and then fear and denial come in again and the whole process starts over.
3.  My Mom used to tell me (when I was a little kid and would get colds, etc.) "Don't you know that you're not allowed to be sick?"  I know she was kinda just kidding around, but it has sure stuck to me like glue.  I spent years believing I didn't have the "right" to be sick.
4.  Wellness may be a thing in our past, but it can also be something in our future - (how zen-like coming from me!! - haha).
5.  I thought the same thing about my husband.  It took me a long time to believe that he could love "me".  I'm such a mess.  He tells me everyday how much he loves me.  He goes to a lot of my dr. appts. with me.  He is my rock and he's not going anywhere.  He told me once that when he said his mariage vow "in sickness and in health" he meant it.  I'm not sure if I even meant it, but he did!
6.  Lyme disease is he11.  It just is.  This is the place to vent and b#$%h - Lord knows I have.
Hope this helps a little - Also, as I mentioned in another post, I bought a "Nerf" assault rifle..... I keep it by my bed.... I shoulda bought it a couple of weeks ago so I could've shot at all the campain BS on TV, but I digress, again, as usual. rolleyes

We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08-WE'LL SEE
Current Rx's 08/25/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Restoril 30mg, Prevacid, Darvocet, Acidophilus, Flagyl 1500mg, Urso 250mg, IV Rocephin 4 grams, Magnesium Chloride and/or Magnesium Oil - I need to order off the internet 
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
I don't know how much more I can take song - heard this one coming home from my LLDr's office on Halloween 10/31/08 - "Ain't found a way to kill me yet" - http://www.youtube.com/watch?v=5gHiR1xeOSs
 

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