posted
Oh my....it feels kind of weird because I've been struggling with this disease for so long. I think the last time I even thought of "age" was when I turned 40!
It's really hard having lyme+ b/c of the life I missed while suffering, getting through one day at a time.
I wonder what happened to all of that time? I know I couldn't do anything different, even if I went back to then if I was still sick.
I remember then telling my doc, I feel like I'm 80...so now, turning 60, I still feel much older in body.
Lyme+ steals our lives away and I pray there is reincarnation that I might come back in a better form and live a fuller life. Just feels like the years have been stolen from me...and (except for you all here on Lymenet) nobody understands.
Now? When I tell folks I know I'm not doing well today...they say, "yeah, as we age we have bad days". What they don't get is they are just catching up with me on bones, muscles, tendons etc and feeling tired. They get it now, but only b/c they are feeling similar.
They don't get I've been this way for over 20 years...an old lady in a younger body with no hope of recovery, though I spent my life savings trying to get well.
Now? I fear losing my home b/c I can't keep it and the expenses going anymore. My savings are gone and finally, I guess I am an old lady who just complains......
Life is unfair. Lyme+ is a destroyer who wins and I lost a chance at a family, a comfortable retirement and trying to pretend life is like an AARP commercial, playing golf, swimming etc.. Heck, I couldn't do any of that even in my late 30's b/c of this illness.
Guess I'm just a little sad as I lost so much and don't have much to look forward to either........Just a number they say and it's true but the reality of it just kind of hit me!
I lost the best years of my life to this horror and I am mad about it but can't do anything...blah blah
Guess I've said enough but fear, I'm not alone in this so just wanted to say to all of you, "LATCH ON TO EVERY MINUTE OF HAPPINESS B/C IT ALL PASSES SO QUICKLY".
Sorry to be a downer, but I can't say it to anyone else. I feel cheated.
Posts: 867 | From PA | Registered: Jan 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Yep. This was not the plan. But, we make the best of it.
Happy Birthday to you and hoping this year is a wee bit better. Nope. A whole lot better.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I can relate altho i was lucky enough to have children
But they all got lyme and all are in denial so im not sure if it is better or worse
I know for sure i got lyme befoe i was 34-35..but wasnt dx til i was 45 and didnt get good tx til i was 47. The tx kept me going but no where near a cure. By 55 i was disabled and as you all know struggling.
When i was 55 my retired/disabled life began and i found i related best to the 70-80 yo woman at church and it has pretty much stayed the same for ten yrs except for friends who also have chronuc illness
I had to totally change my plans, expectations for the future
Its frystrating and hard and i get angry sometimes living like this...but i thought about suicude...decided no...and just do my best to find some joy...and help where i can
I have some wonderful memories of raising the kids. But it was very very hard. There were two divorces. Raising kids when you are chrinicaly ill is physically hard for you and emotionally hard for them. And if they have lyme they deal with a lot more
I dont know if one is better or worse than the other
Alot of this just plain sucks. But this is where er are and i just keep trying to find things tht make it worth being here
I hope you can figure out how to deal with the situation
There is an old thread somewhere...something about "wgat lyme taught me...or why im glad i have lyme"...something like that
Maybe tht thread will help you. Take care
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I can relate - I feel this way with every birthday, like wait a minute, we're adding up years here that we haven't lived the way we want to live them.
So my personal response is, try to put something of quality into your days, whatever that is, that belongs to you, that you enjoy doing or being a part of, so that we can say we have been living some of what we want to be living.
In the beginning, to get into the habit of it, I made myself find 5 things a day that I wanted to do or be part of or just experience, and I recorded it in a list for maybe a month.
Now it is a habit and I automatically recognize when I am drawn to something. Now my days have more quality in them.
It can be anything you like or enjoy - anything that brings you some pleasure and feels right for you. It can be as simple as appreciating a beautiful sunset, or watching dogs play or kids play, or listening to some good music, or doing something nice for someone else, etc, or more involved, if we have the energy to be involved in activities.
But if it's bigger stuff, like activities with others, it's important not to put any pressure on us or allow others to put pressure on us, and in that way, we can participate as we are able. That's what I've found to be the most sane way to be involved in what everyone else is doing. And I let them know, so they don't wonder why I am there sometimes.
But I think you will feel better about your days if you can figure this out, as to what will provide you with more life quality, hopefully.
Posts: 13117 | From San Francisco | Registered: May 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
good idea robin. i usually try and see what the sunrise looks like and sometimes the sunset.
Sunrise is easier as i can see it out of my east window.
but can get in the habit of taking rosie out to toilet at sunset so i can see if there is any color that day.
the can't do's do get overwhelming.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I also print out something that tickled me to share on a clipboard outside my door in the hallway
My nieghbors enjoy reading the cartoons too.
But, mostly I wait until health improves some day. It has got to.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Life is unfair.. Go out and live what life you are able.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< healthyw'w' >>>>>,
I can relate, this whole illness mess was not what TxC' and I expected, at all.
We try to take some joy in little things,and keep plodding along.
Chronic illness seems to make many of us, too hard on ourselves. Sometimes, TxC' reminds me of that. He keeps a sense of humor as much as possible, but it isn't always easy.
I hope your birthday week is going as well as it can. I like what Lymetoo said! Life is not fair, but we should enjoy what ever we're able to of it.
Can you see any trees where you are at? Sometimes they are magnificent to look at, whatever the weather may be!
Belated Birthday Greetings to you,and hugs and prayers headed out and up for you. Don't give up!
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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