Topic: Hard day...feeling like I'll never be able to get away from this illness...
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Sorry folks..I"m usually very upbeat. Yes..still in treatment, but I'm overall so much better and I continue to make progress, although slowly. But I'm having a very bad day today and need to vent.
My biggest concern / fear isn't for myself. While I am "fatigued" of treating lyme & co (and tired of spending the $'s to do it), my primary concern is my wife and kids.
If you don't know..I was diagnosed in May 2010 after crashing in Jan 2010 and being almost bedridden. In April 2010, we found a tick feeding on the ear of my 3 year old..it had been there for days. She didn't get put on treatment as the doc wanted to wait for a rash. This was before my Dx so I knew nothing. I did take her to a good LLMD in CT about 10 weeks later and they felt she was fine. They even did a phone consult with Dr. J who agreed. But I worry.
My second daugther was born in March 2010 (when I was at my worst and before my dx.) Shortly thereafter my wife starting showing mild symptoms which means she either had it during pregnancy or got it shortly thereafter. This means my youngest daugther could potentially have it.
A year and a half later, my wife still has symptoms off and on, although still mild. And now we would like to have a third child. She is going to see my LLMD, but I do worry about having a kid get lyme congenitally and then having a sick baby or kid with Autism, etc.
I am just feeling a bit overwhelmed, like I'll never be able to get away from Lyme & co. Even if I get back to a full 100%, I worry that my wife or children will then start to show major symptoms. I have a fear this is going to be a part of our lives, for the rest of our lives.
My oldest daugther (the one who is bitten) now seems to show a bit of thrush / yeast on her tounge and Dr. K says this can be an early symptom...it can also just be normal. So frustrated, tired, and concerned.
Anyone else feel like they can never get away from this?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
The hardest part of this, besides the frickin' fatigue, is seeing the kids suffer. I probably had lyme when I had my two kids, I'll never know.
The way I see it some days is that lyme really is everywhere. For those of us that are lyme educated, we are most fortunate. Hopefully, we will continue to get better and not be saddled with a "mis"diagnosis like lupus, ms, als, cfs and depression.
Good luck with your decision whether to have more children. This is a treatable disease so you have many options.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
It's hard enough for one to have lyme him/herself, let alone one's spouse and children. The challenges and worry are magnified when our loved ones are hurting, too.
There's not much I can say to uplift you. On the plus side, sounds like you may have a good LLMD on your side, and that is valuable.
I heard you say "overwhelmed. Frustrated. Tired. concerned." Who wouldn't be in your shoes? You're only human.
It may be cliche, but try to take it one day at a time, or even just a minute at a time, you know, from the Serenity Prayer.
Don't know if this will help you, but it does help me. Have you ever tried Bach Flower Remedies? I take "Elm: restores your normal strength and optimism when you are temporarily overwhelmed or burdened by responsibility" and "Olive: restores energy when you are physically and mentally exhausted" These help me through my bad days. There are many others, and they may be more appropriate for your needs.
Best wishes to you and your family. Wishing you brighter days ahead.
Posts: 873 | From WA | Registered: Dec 2005
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posted
I do know how u feel, bcb, but I don't know what I can say to make u feel any better.
I was diagnosed in 2003, and both my daughters test + for lyme, but only one has been treated. The other seems to have a great immune system and she is fine. Now, she's had a few symptoms but manages with her life fine.
My hubby tested - back then,although I'm not so sure he would now. Slowly, I've seen him exhibit symptoms I've either had before, or now. He doesn't admit that his sx could be lyme related, but he knows my opinion on it.
I used to worry a heck of a lot about my kids, my hubby, the dreaded wheelchair all the docs seemed to think I was headed for, and whatever else came up at the time..but I have just had to stop it.
What I mean is, I don't have the energy for all the worry. I just have to do the best I can, and hope that I can get by and get what I need done done. If you can't do one day at a time, at least go 1 step at a time.
I've also found that if I get myself too worked up I end up making rash decisions, or just running all my energy out and feel worse and worse.
My spouse helps remind me to breathe, calm down, and relax as he can. My llmd always told me, "you have to slow down, take care of yourself, because you can't care for your family if you are too sick to do so".. wisdom in that
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
bcb, you have every right to vent and this is the forum to do it. We can all empathize with you. Our life's journey is so much more difficult than others, but it's still our journey.
hopeful4, I have a Serenity Prayer afghan hanging over my bed for the reminder each and every day.
twicebitten, you have a wonderful husband, you're blessed.
jackie51, love your optimism.
I find I must pace myself differently each day. TRY to not get over-stressed.
We can do this with positive-thinking and affirmations, faith, hope, and prayer.
Your sentiments in your subject line are my sentiments exactly. Fell very ill 2006, better, but still so sick and unable to wrap my brain around ever being close to "normal." TS
Posts: 566 | From West Coast | Registered: May 2008
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I'm sorry you were feeling bad. Glad today made you feel better.
Posts: 1728 | From USA | Registered: May 2011
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