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

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.

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.

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

"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.

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)

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.