I try to be hopeful but I really get depressed when I feel like this. I know others have it so much worse but I feel like I will never b e able to work again or even plan anything. My family was sympathetic at first but now want to know when I will be back to my old self. I tried to educate them but it hasn't seemed to work. I was in a very high pressure job, as I am sure many were, and can't imagine keeping all my medical appts much less working in any capacity. Some times I do wish it would all just end.
I hope this will pass but each "episode" gets worse. Reading this board has been so helpful to me but today I was so desperate I had to join and post. Thanks for letting me vent.
Getting support/understanding from family is a tough one for most of us. My daughter also has Lyme, but sometimes she doesn't want to hear anything but good news from me. I can get into the depressed, scared thing almost at any time, so I also can identify with that.
Don't give up on treatment or getting the understanding you deserve/need. That's it.
I needed to write this for me as well as you.
I'm sure other, more articulate people will respond.
I'll be thinkin' of ya.
hopeful123
I can empathize with you and hope you'll get better...keep on keepin on...yeah I know it's tough at times....
LOLove....zman
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Sometimes I think if we ever get well we'll be like Superman, acclimatized to the freakish gravity of this illness. Maybe that's why in the comics I read as a child Kryptonite is always that dayglo shade of Lyme green.
Two days ago I was in so much physical and emotional pain I didn't think I'd make it through the day. My usual sources of support - all fellow patients, who know what this is like first hand - weren't available and I called a family member who was busy with something else. On a good day, this person can process enough of what I'm going through to manifest some empathy, but this was not a good day.
The feeling of being isolated, in some hell-dimension reserved just for you, about did me in. Made a note to myself: 'do not turn to well people in a crisis, they are not to be depended on.'
Sounds very harsh, and of course there are happy exceptions, but I'm afraid a lot of the time it's true.
All my best to you and yours,
Paul
I wanted to share my last post. sometimes I write not just to vent, but to try to get others to validate my experience. I think that If I hear from just one person who "understands" it makes me feel less crazy - at least for that day. at least for today, i hope that i can give you the inspiration to get through another day - just as you have given me!
Best of Health
Paisley
Frequent Contributor
Posts: 126
From:
Registered: Nov 2004 posted 23 January 2005 17:03 ��� � �� ��
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I haven't logged on for a while because I kept spiraling down in the last few weeks. I began to feel more and more idle, powerless, ineffective and the most recent symptom that I am finally acknowledging is that I am losing my eyesight. I began to wonder "How much do I have to give up for this disease?"
Additionally, my children are having all kinds of health and behavioral problems (we are now in the process of testing them for lyme as well). I began to focus on how I feel llike such a poor mother, wife, friend and daughter.
I had been working with a therapist who I thought understood what I was going through. As it turned out, she was just another dr. who doesn't understand the lyme dynamics, especially regarding herxing cycles and depression. Except this was more damaging because I put my faith in her to help me with all of craziness that goes with having lyme.
When I became very depressed last week, she said, "what are you doing - your husband has to work" and that I should check into a hospital. She told me that she needed to meet with her that next day. I felt like I had been reprimanded by her and suddenly I became angry because I felt like she was protecting my husband over my well-being.
She saw my husband as the calm, focused, agreeable and pleasing participant and viewed me as the irrational, forgetful, unreliable (missed one appt. because I forgot) "hysterical" participant because I was the one on the couch crying for help in the past year.
I finally let my anger come up and my therapist thought it was inappropriate. What? Isn't that part of her job - to help me process the feelings that come up with having a chronic illness?
I was asking for my husband's help and she kept saying well, "he has to work and you need to stop being so demanding or he will leave you" Oh My G--! I walked out of her office.
I refreshed my desire to leave this planet in that moment. I seriously considered it and suddently felt like I got a sign from above. I began to pray and realized that God has me right where I am supposed to be. I don't like it one bit. Our existence (especially for those with chronic lyme for years) is so challenging. People just don't understand the pain that we are in.
Again, I put my faith in a dr. who then viewed me as a headcase. And, I know this will sound absolutely crazy, but I definately believe it based on her behavior and some of her remarks - I believe she started having some attraction towards my husband.
Meanwhile she wasn't able to look at our situation clearly and I didn't see it sooner because I have been so wimpy, sobby and foggy. I know that she would say that it is just paranoia. Instead of trying to really understand my disease and all its bizarre nuances, she sat back and started making incorrect assumptions that actually did more damage.
I never questioned her methods because of my fog and would not have questioned any of it because she was in the position of power as my therapist.
I still feel so vulnerable with this disease, but this experience, along with all of the other debasing experiences with drs. has given me more strength, resoluteness, determination, resolve, perseverance, earnestsness, backbone, fortitude, grit and doggedness...at least for today.
God bless, good luck and I know that it has get better.
Cigi
I like your UserName. You picked it for a reason...because you DO believe in hope.
You do have HOPE and phenomenal INNER STRENGTH inside of you...even when you experience situations when you can't feel it or recognize it.
Sometimes I just have to blindly trust that "this too shall pass" and remember that I AM more than just a mass of cells & tissues infected with some mean ass bacteria.
Life can be a struggle...and you don't have to compare your bruise to anyone else's to see which one is the bluest. Yes, some are "worse" off than you - and many others aren't. Many people seem to be "living the good life" and like to flaunt it. (But
their grass is not always as green as it appears.)
I believe life is full of challenges because it's the challenges that force us to LOOK WITHIN & find that HOPE and INNER STRENGTH - to remember in whose IMAGE we are made. Don't give up!
Now that's my best pep talk for today.
Just know that the people here on these boards can certainly identify & validate that everything about lyme pretty much sucks! (Can I say "sucks" on the boards?)
For me, it is comforting to get that validation where I know I will get it. And like someone else suggested, you're not going to get that validation from your healthy friends & relatives -- at least not very much. For me, I like to write & get all my piss & vinegar OUT of my body. (Can I say "piss" on the boards?)
You may be aware that stress - in ALL it's forms - is not good for your immune system -which is already struggling thanks to the lyme. So find something that makes YOU feel good emotionally & that will help you get the stress, confusion, anger, etc. out of your body.
And finally, you might ask your doc to check your hormones and consider an anti-depressant.
Prior to Christmas, I thought I was going to lose my mind - DAILY. My PCP said my progesterone was really low and prescribed a cream which I'm practically bathing in. (Not sure about the long term safety of this...)
Anyway- if it hadn't been for the progesterone & the anti-depressant, I don't think I would have been able to keep my compusure when my father-in-law asked me at dinner if I was sick all the time just because I needed the attention.
Yes, I believe it was the progesterone & the antidepressant (& a little bit of fatigue) that kept me from crawling over the table to rip out his tongue & rip off his testicles. (Can I say "testicles" on the board?)
Hopelives - WE "get it".
Keep coming back.
Blessings,
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DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com