how do you deal with feelings about losing time/years to this illness

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Oceanblueskygirl
Veteran Member


Date Joined May 2006
Total Posts : 673
   Posted 10/12/2008 9:57 PM (GMT -7)   
I don't know how to deal with the feelings I have about all the time I have lost to being sick. I am 28 and I have been sick since I was 14 and essentially lost all of my 20s to this illness. My birthday isn't coming up for another few months but I dread it already. I spend weeks crying around my birthday. I feel like I wish I could be unconscious 24/7. I just don't know how to deal anymore (especially with the insomnia). Anyway I was just wondering how you cope with it; I'm sure some of you can relate. I feel a sense of loss and anger. I have been at home since 2004 and this will be my 6th birthday in a row I have been sick and unable to do anything (I've been on treatment since November 2006).

teenLymer
Regular Member


Date Joined Dec 2006
Total Posts : 186
   Posted 10/13/2008 11:45 AM (GMT -7)   
i too am interested to hear what people do to deal with these type of feelings. i have bouts of crying. i know i'm not nearly as sick as most, but dagnumit, i had my whole high school years planned out, and those plans went straight down the toilet after getting sick freshmen year. no volleyball team, no hanging out with friends, no making new friends. i think that's my only regret of not be able to attend regular high school---I didn't make any new friends. i met some really great kids my first semester of Freshmen year, and never got to know them better because I stopped attending the regular campus. i suppose i should be happy that i avoided the chaos and sillyness that comes with high school drama. i'll stop talking. haven't contributed anything helpful. sorry.

Obstacles are those frightful things you see when you take your eyes off the goal.  

Henry Ford

“Nothing can stop the man with the right mental attitude from achieving his goal; nothing on earth can help the man with the wrong mental attitude.”
Thomas Jefferson 


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 10/13/2008 2:22 PM (GMT -7)   
oceanblueskygirl-I think almost everyone here can relate to what you are feeling. I am so sad that you have missed out on so much. I feel the same as you do and the only way I cope with it is to cry..My sons are grown and just out of college so my husband and I could basically do things when we want if only I was healthy. I also feel extremely guilty for putting him through this and missing out on so many family things.
 
I am worried that I will end up like this for the rest of my life and that makes me very sad. I have been in treatment also since Nov 2006 and really only had success with Rocephin. Oh and the insomnia is the worse. I can't take much of anything without getting terrible hangovers the next day or it just doesn't work for me. It is one of the problems I think that causes me such problems with fatigue. I think I have had 5-6 hours of broken sleep each night for the past 4 years.
 
I am sorry I don't have better advice for you but I don't really know how to cope with it either, but I do understand how you feel and hopefully we can all get well and go on to live healthy active lives.
 
Kim

Flowerpoddess
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 10/13/2008 4:21 PM (GMT -7)   
This post just makes me sad :-( . . .

I have been ill since 16+ almost turning 17 years old. I couldn't complete high school, although I tried to but I kept missing out on days and months, my kidneys severly hurt and at one point was bedridden for two weeks or so due to the pain and what I had was a really bad infection. I have trouble with my bladder and for years I went in circles trying to find a doctor over here and no one was able to help me.

I was told that it could be in my head and that I'm bored and so I went to try working at 17 years old with no treatment and did it for several months. What's worse is that I live and depend on my mom and as and when she wants to give me treatment is when I get it, otherwise she'd just fuss about money and all. It's the main reason why I didn't go to the doctor when I first felt the need to go to the restroom too many times.

So, it's been more than 6 years that I've been dealing with this and I just cry and feel so darn angry that I am this way when I used to be so outgoing and had big dreams of going overseas and continuing my education and to become a vet. What also really gets to me is that people are making fun of me and making my illnesses smaller and like it's not big deal. For years now, my sibiling has been calling me a loser and still does, tells me I have no life and I just sit at home and get money from my mom. (She does too and steals if she doesn't have money and wants something). And, I'm on the computer when I'm in pain and I happen to be in a pain alot and people who I share my life with turn around and say, "what life?" "what friends" "you don't even go out and have no real friends" and these people are also ill but don't have the same illness I do and able to function better but have been in bound to the wheelchair at some point.

It's like, bad things keep happening to me and all I want to feel is just normal so I don't have to feel pain and feel this vulnerability and have all these people's words thrown at me. No one knew what I was like before I got ill and it's just a shame that they didn't and the painful ill life has changed me and that's all they know of me. I have had 6 birthdays all at home and miserable and this year, I didn't even want a cake because it's all sugar and so what the hell. It's so depressing and now my cat has crystals in her and that's making me even more upset and really hurt and scared. I've lost faith in God or religion or anything like that through the years, I mean if there really was one right, then why do I need to suffer, hell why does my cat need to suffer and why not my sibiling who has so much to say about me?

She doesn't know about Bartonella and I rather her not know, people don't seem to understand it and if she knows she'd be telling me to die even more than she already is now. For two years or three, she was telling me to get out of the house and to die and that she'll kick me in my bladder (and she did once) and she developed urinary symptoms too but not as bad as mine, she still keeps on saying things to me. I can't escape this stress and hurt since I'm always surrounded by it.

Sorry about the length, just wanted people to know, there are others out there suffering and being misunderstood and attacked by people.
Interstital Cystisis or Chronic Recurrent UTIs - No treatment currently, but hoping while treating the Bartonella, the body will be strong enough to kill the UTIs on it's own.
 
Bartonella - Biaxin
 
Nystatin with antibiotic
 
Garlic pills
 
Vitamin E 400IU
 
Probiotics, two hours after antibiotics


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4297
   Posted 10/13/2008 5:09 PM (GMT -7)   
Hi Oceanblueskygirl and everyone else,
 
Yes, it's very difficult dealing with this horrible disease.   I guess in a way I was lucky because I slept all the time (due to ehrlichiosis).   I lived alone and had no support except for the forums.   My family also told me that it was all in my head even when I finally received a diagnosis.    No one understood, not my friends, not my husband at the time (now ex-husband), no one.
 
I think what helped me was trying to accomplish little things (I loved to crochet angels) and forcing myself to do a little work.   I remember I was terrified of cooking because I was scared I would fall asleep and burn down my house.  
 
I took it one day at a time, I think that's all we can do.  Even though I am better, I still take my life one day at a time.  I can't change yesterday and tomorrow isn't here yet.  
 
I thought I would never get better and it was a long rough battle but here I am so please never give up hope and know that there is a light at the end of this dark tunnel...
 
I found a poem I wrote when I was suffering about 6 years ago:
 

Why does everyday seem like a struggle,

Problem after problem, give me peace….

Challenges could be nice if random,

But my challenges grow like wars….

Only getting bigger and stronger….

Heavier, burdensome, longer….

 

Why does everyday feel so lonely?

Perhaps because I fight alone….

No rest for the weary they say,

But weary I am all day….

 

Why does everyday take its toll?

Feeling like crawling into a hole,

Deeper and deeper I sink…

Searching for the right link…

To find a path so whole,

To stop feeling like a mole….

But springing into a butterfly,

Enjoying the roses and blue sky…

 


In any case, I am a strong believer that is your protocol is not working, take a risk and please try something else.  Just because Dr. Jernigan's worked for me, doesn't mean it will work for everyone (though I believe if one is willing to do the work required in Dr. J's protocol, it does work).   Read different books, learn, learn, learn!  Do your own research and somehow, something will click and you will start feeling better.   Don't stay in the same rut with the same old protocol.  
 
Post about how you feel, keep a journal of all your feelings (something I wish I had did).  
 
I wish you all positive thoughts!  
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking...
 
This song is about my years with chronic lyme and being in remission for over 2 years:
 

runningiri
Regular Member


Date Joined Jan 2008
Total Posts : 373
   Posted 10/13/2008 8:12 PM (GMT -7)   
Oceanblueskygirl,

I completely understand where you are coming from with loosing years of your life to this illness. It is very sad and yes I cry frequently as well. It is horrible what this illness has done to so many people. I wish that I had an answer for you as to how to find your way back to wellness. Unfortunately, I don't but I will tell you that perhaps you should consider trying a new route. I mean, if what your doing is not working, why not try something new and different? I can't say what that route should be because what works for some does not work for others. All that I know is that I have done the antibiotic route for 3 years now (including IV's) and I am still not well. In light of this, I am now switching gears and going down a different path. I have realized that antibiotics are not the answer for me at this time.

I wish the best for you. I hope things turn around soon.

-Runningirl

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 10/14/2008 8:17 AM (GMT -7)   
I can relate to this post.  I got sick at age 35.... I will be 45 in less than a month.... 10 F'ing years.
 
There's that old saying "God never gives us more than we can handle.  I just wish he didn't trust me so much."
 
I don't know what the answer(s) is, but this site helps.  At least I can pound on the keyboard.... which is probably better than standing on my roof screaming my head off.... if I ever get to that point, I'll let you know if it works.
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 
LYME DISEASE and SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 


Flowerpoddess
Regular Member


Date Joined Jun 2008
Total Posts : 83
   Posted 10/14/2008 8:29 AM (GMT -7)   
"God never gives us more than we can handle." <<< Funny, you mention that because I kept telling myself that for years and this is something I can't handle and every treatment I have wanted to pursue, my mom has made it impossible for me to start or continue. And, I also think about how many people suffer and well since my issue is more about the bladder, I know people who been suffering all their life and opt to remove their bladder, then I think back on, "what do you mean, never gives more than you can handle?". People are in late thirties, still unable to date and not married and unable to have kids so this is just really messed up and hence why I lost faith. Oh well.
Interstital Cystisis or Chronic Recurrent UTIs - No treatment currently, but hoping while treating the Bartonella, the body will be strong enough to kill the UTIs on it's own.
 
Bartonella - Biaxin
 
Nystatin with antibiotic
 
Garlic pills
 
Vitamin E 400IU
 
Probiotics, two hours after antibiotics


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 10/14/2008 8:51 AM (GMT -7)   
I wish I had something encouraging to say. I guess we are at the beginning of something that doctors will know how to deal with in the future. I get really depressed too. I try to start each day with a preparation for THAT day. I try to deal with it the same way that I have dealt with my alcoholism. I need a little quiet time, prayer for me, to get my mind straight. I thank God for all I DO have and then ask for help. My goal is to get through that ONE day.   This is all very difficult and I struggle like most. It is hard to stay positive when basic functioning is impaired. Today I am going to try to do what is best for my situation. I know for my mental health I need to keep moving forward in some way. I am thinking about you all. You have all helped me in some way and we are not alone in this. take care, amey

wacko woman
Regular Member


Date Joined Mar 2008
Total Posts : 182
   Posted 10/14/2008 2:24 PM (GMT -7)   
When I was at my worst, I would kick boxes around in the garage, take branches and hit the trees in my backyard with all my strength (which wasn't much) Later I would go out and hug the trees, thanking them for their strength. Sometimes I would sit in my living room and scream and scream until I was so hoarse I couldn't scream anymore. Trying to come up with positive thoughts was beyond me. I was in such pain, and I didn't understand. All of what you all have posted I felt. Depression was the only emotion I knew.

But as began to get better, I could look back and see all that I had learned from this time. And the years didn't seem so wasted. I have come through this mentally and spiritually healthier than I have ever been. I have learned how to be still. I have learned how to be present in any moment and watch the world around me. I have learned how to feel joy again, and my tears now are tears of amazement of what I have learned. And sometimes I am totally in awe of how I have been blessed.

I am not one of those people who say "I am so glad I had Lymes because of all that I have learned". But I can say what I have learned is precious and not something I ever want to lose.

Jeanne

Post Edited (wacko woman) : 10/14/2008 4:43:43 PM (GMT-6)


Oceanblueskygirl
Veteran Member


Date Joined May 2006
Total Posts : 673
   Posted 10/19/2008 9:14 PM (GMT -7)   
thanks everyone for answering. i was doing better in the summer but i have since gone downhill and i don't know why.

Smiffy51
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 10/20/2008 5:50 PM (GMT -7)   
I've lost 21 years to this, during which time I've been housebound, & have been misdiagnosed with CFS all along. My son has grown up without a mother. I'm very bitter.
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