Bad day here. I slept until 12:30 pm, got up and felt dark-minded. Body pain all over, feeling stupid and sad.
Made the mistake of watching TV and saw half of the Lou Gherig Story. He had ALS. As soon as he started having symptoms, I had to turn it off.
My mind went to whether we all have ALS or if he had lyme or what? Dark thoughts and tears, so I just went back to bed at 3:00pm.
Another day lost for me. For some reason, I'm glad it is getting dark here now. Somehow this lyme pain is more acceptable at night?
I just feel like I've lost my body........and now my mind is giving in too. It was a beautiful day here, the kind where I'd before spring out of bed and go do something!
Instead, I went to sleep. Seems it's the only thing that is my friend now. Funny, in my dreams, I am alive and move and live.....guess that's why sleeping gives me back what I once had.
Just needed to write this out while I feel this way. Hopefully, as I do every day, I'll hope to wake up tomorrow feeling more positive about life...just not today. Posts: 867 | From PA | Registered: Jan 2006
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posted
Here's a big ole kiss - and hug from everybody!
Sorry you are feeling down. I've been the same way today. I haven't been eating as well as normal and I think that's why some of my darker feelings are here.
I felt just like you ~ I had to take a nap and felt like I was wasting a beautiful day outside.
Its hard during the holidays when everyone wants the usual desserts cooked not to indulge a bit. But I pay for it when I do.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
ttph- it is going to get better. I know that someday there will be a cure of some better medical treatment.
My daughter has had major depression throughout this ordeal, but I keep telling her that if she takes it one day at a time that it will get better. Part of her problem now is that she no longer believes any drs or takes any meds.
I spent over 2 hours last night trying to keep her from hurting herself. She was in a pretty miserable state but we made it and you will too.
The rally is coming very soon and I feel that it will make a major difference if enough people can show up. So here's hoping it will lead to a miracle in the treatment protocols and protection for patients and drs.
Get some comedys and watch them when you are down. Or get a funny book to have on hand. Or just journal your thoughts and maybe it will help to get them out. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Thanks Meg. But I have to admit I've been off abx for about a month now.
After 6 weeks of Rocephin, followed by 2 months of doxy and amox., then 3 full months of Rocephin again......I had the line pulled. I just needed a break.
I had leveled out and wasn't getting better.
So now I'm on nothing.
Not sure what to do next.
Per Huey Lewis from a song long ago....I need a new drug....one that works for me. Posts: 867 | From PA | Registered: Jan 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
You will get better and get through this. You just have to remember that it is not really you its the spiroketes talking.
Hoping you wake up tommorrow and the clouds have passed and the sun shines down on you.
Sorry you had a tough day. This Spring was one dark season for me. It's tough. Hard to remember that when we are feeling mentally and phsyically slow it's an illness, not stupidity.
I got better and hope that you will soon, find a new drug I remember that song
Hang in there Posts: 628 | From the south | Registered: Dec 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
just wanna let you know you arent alone.
It is so tough dealing with Lyme and having the feelings that it causes for so many reasons. so many! from medical to financial to inter-personal to psycological, to EVERY CORNER of your life is effected.
it stinks.
I hate it.
Sometimes I just have to hang on to the next minute. I like saying it like that fish Dori did in Finding Nemo---
Just keep swimming, just keep swi---mmming
it makes me smile a tiny tiny bit to try to say it like that.
Just keep swimming. trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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These darkist days are hitting many it seems lately, including me - one who usually doesn't have them. Or hasn't had them in a very long time.
I know it takes time for all of us but time doesn't seem fast enough at times.
But it truely is what is needed - time to just be - time to just allow our bodies to just be - and time to just allow time to go by - so that time will lead us to a better day!
If any of that makes sense!
Posts: 374 | From NJ | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
As we are entering Christmas season, the Season of Hope, I am sending all of my positive thoughts to you.
I had this exact day yesterday and God was kind enough to send me Angels through this forum.
I pray that you feel better and that you don't give up hope.
I will hope for both you and me and everyone else who is battling this horrible disease.
Hang in there.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Cobweb
Unregistered
posted
Just coming along to say . I can tolerate the total achiness and physcial pains-but the mental lows are a kicker for me,too- So somedays I just have to accept -it is what it is-Lyme Disease-and I surrender to the Do Nothing Dragon for the day-but I've got a great kitty to keep me company when I'm in bed.
posted
Thank you all sooo much. I was feeling alone today in a world where no one understands, including me!
You all make me realize this is the disease talking, not my real brain/body.
I am not alone. Hope I can help you out as well on a dark day. You are all the best friends I could ever imagine. You have and continue to walk in my shoes.
I won't forget these acts of kindness words and feelings. Posts: 867 | From PA | Registered: Jan 2006
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posted
Thank you to ALL of you for sharing these very personal thoughts. After reading, I realized I am not alone as I thought. The dark days are very hard to take....and I feel my life slipping away very quickly some momments. I do my best to just hang on. Minute by minute sometimes. Thank you for sharing your hearts with me. It helps.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
So sorry you're having such a bad day - hugs from afar
Being on nothing when you haven't made any progress is not a good place to be... What about treating the cyst form - surely after the IV it is something that needs to be addressed. And coinfections?? (the tests suck, and often coinfections just need to be treated based on symptoms).
There is treatment out there - although it can sometime be a guessing game, you and your doctor need to stick with it to find what works for you.
Need a little detox??? Try www.podipatch.com - worth every penny and easy on your system..
The down and outs can be from the bacteria - so please know you are not alone.. I have so been there (as have we all)... And people DO get better - I am one of them.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Sorry to hear it's been so rough. I've had a rough time with depression both on and off Lyme meds so I really empathize. It's just a really awful place to be.
I finally ended up working with a LLMD psychiatrist it has been worth all the trouble. This doc considers an LLMD P's job is to give the patient the medication support needed to continue tx. It's made all the difference in the world to me to work with someone who specializes in the emotional/psychological aspects of this illness. These docs can be more available for short consults and questions than my other LLMD.
Given your username, I don't know if this is an option for you, but if it is, I highly recommend it.
Hang in there, Denise
Posts: 261 | From San Mateo, CA | Registered: May 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi, Poorhouse.
It's really draining trying to summon up energy and optimism all the time. Sometimes it's OK to just say, "I haven't got any today, OK?"
'Yard by yard, life's hard. Inch by inch, life's a cinch.'
I know you'll get back to yourself and this will pass.
A day really will come where you'll look back and go, "Whew. I'm glad THAT'S over." Hold that thought till the storm passes. We're here for you.
Hugs sent,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
oh gosh, do i ever understand this. i'm so sorry you're feeling this way. just know that no matter how impossible it feels, it will pass. funny movies and books are good. so is journalling, crying, screaming if you have to, making art, coloring, cuddling with pets, talking to a friend.
posted
poor, I had a 1st today! slept for 13 hrs!! Haven't done this in years!!! Longest I can sleep without gettng up to pee is 3 hrs.; so up 4 times, and could not believe I was able to go back to sleep each time!! WHOOPIE. UPPER DAY for me needing that precious sleep.
Thanksgiving thru New Years Day statistics show for depressed folks, they decide to end their lives by suicide! Then their loved ones begin the long hell of what could they have done or said to PREVENT their loved one from taking their life.
So I'm going to be safe rather than sorry ... preventative measure by putting the below info I looked up for someone else who was talking suicide on the board in Aug. 06!
8-7-06 NATIONWIDE SUICIDE HOTLINE 1.800.784.2433 now please! If you are feeling suicidal, please call the SUICIDE HOTLINE. We care about you.
Things will get better; take it hour by hour on those really bad days. Play the comedies, read a funny book, or get out a joke book where you can have BELLY LAUGHING; it helps so much!
Meanwhile, I'm praying for you and here's a and to get you thru this! Post when you feel this way; someone is ALWAYS on here except between 4 - 6 AM!
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
tothepoorhouse
tothepoorhouse
Hugs & kisses and remember that in treatment the dark herx' are only temporary and will pass in time.
Be kind to yourself. Take a bubble bath, rent a special movie, eat some chocolate, snuggle in bed as long as you need to, Your body needs rest.
There will be better days ahead where you will bound back into life and enjoy the days in the sun again
Hang in there and never give up
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi poorhouse
triple hugs -- feel better! Get lots of rest and there is nothing like a good book or funny movie. No movies about lou gherig, please!
I know exactly how you feel. This has been a tough few days for me, I am so afraid of losing all the progress I made in tx for the past few months.
hang in there and your dreams of being alive and moving sound very positive -- that is a good sign for the future, of life, movement and joy.
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. I can tolerate the total achiness and physcial pains-but the mental lows are a kicker for me,too-
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Then their loved ones begin the long hell of what could they have done or said to PREVENT their loved one from taking their life.![[Cool]](cool.gif)
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