richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I have been feeling very down and alone to the point of not wanting to do this any longer. I just can' cope with this life much longer. I feel I'll never get my life back.
I had all day yesterday to play with my 5 year old and yet I couldn't. Instead, I spent most of the day in bed. What is the point anymore?
Does anyone else feel this desperate, depressed and alone?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I can't imagine having a young one and not being able to participate in his or her life.
But, I can imagine not wanting to do this any longer.
So, I am sending my imaginary limo over to take you away. Where would you like to go?
Mind you....you are lyme free.
Another way I deal with this is to try and focus on what I can do.
Isolation seems to help me too. I do get lonely at times and want to be around people.
But, I find it defeats the purpose. It takes so much out of me or I am faced with just how much I am "not normal" that it is too much to handle.
So it is a catch 22 situation.
Ok I will stop typing now. Wearing myself out.
Not even sure if I am helping.
Just know it gets better. There is hope.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Yes, richedie, I've been there too.
My sx were really bad over the summer, and I pretty much just laid on the couch all day.
At the time my sons were 1 and 4, so it was really frustrating not being able to interact with them.
I was just too tired.
I just lived for the afternoons when I could put my younger one down for a nap and put a video in for the older one and just crash for 3 hours.
I felt like no one cared or understood what I was going through; I had been to so many docs, all of whom said I was fine.
For sure my husband's family (except one sis-in-laaw who has issues of her own) kind of pulled back and were obviously tired of me whining.
Even now that I have a dx, they have not responded to my emails or phone calls.
I's next to impossible to get someone to watch my kids so I can go to the doctor, or even so my husband and I can go out to dinner or something
(We have not been out together without the kids since my oldest was 4 months old!).
My husband really gets bitter about that because when his brother's and sister's kids were little he was ALWAYS babysitting and even took the whole family to Disneyworld after his dad died.
So he especially feels put upon and abandoned by his family.
So yes, I do understand what you're going through. That's why this site has been such a blessing--other people who know and understand my struggles.
Hang in there!!!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I was there. I lived in bed and my family's life went on without me. Some days I felt dead already.
With treatment, now I am better and fully functional. Please hang in there.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yes, for so many reasons...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
But even my doctor seems confused a bit as to why my arm will not get better. It has been 7 mmonths of treatment and the pain in my left arm, shoulder, wrist and forearm is a living hell of pain and torture. We are hoping Bartonella treatment helps this.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Some of the pains were the last to go. Bart treatment helped a lot for me, but I had to treat it at the same time as babs or I'd backslide there.
I had left-side only pain, too. It was weird. Even someone giving me a massage could feel the left side was different. Now it's a little weaker (I lift weights) and I can see it in the mirror, so I lowered the weights to work it up to as strong as the right side.
Hang in there.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yes, I definitely know how you're feeling. I've been having a hard time myself right now. Upped the dosage of Mepron and started on Art and now I'm so depressed and emtional and feeling crappy and don't even know why any of us have to go through this.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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adamm
Unregistered
posted
Know exactly what you mean. I pretty much can't think intelligently about anything these days, and the complexity of my emotion has been drastically reduced, if that makes any sense. I really feel subhuman...
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Everyday. Every moment. Wish that I could help you.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
YES! Some days are worse than others, but overall I do feel alone.
I also get what Kam is saying about wanting to be with people, but how it defeats the purpose and reminds me that I am not normal.
I "believe" that I will be again though, someday. That is what I cling to and what keeps me going.
So just hang in there. Things will get better!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
hi, i'm new to lymenet,and i'm glad i joined. I have been alone with this disease for over three yrs. I know where your comng from. It can be ver hard. I had to quit my job. I miss so much being around people. I have been fighting for disability for two years in July. No luck. My husband is so sweet and good to me. However the funds are gone and he has to work two jobs for us to live. So unfair to him. However I know it will get better, I hope anyway. I live in Culpeper county Va. I need to get support out here. Would realy be nice to talk to a group. Take care.
Posts: 4 | From culpeper, va | Registered: Mar 2009
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posted
Have you ever had even a small window of improvement. If so, think about that and believe with all your heart it will happen again and when it does you will feel better.
It is so slow, but you must believe.
Prayer helps. He listens. Try it
Posts: 199 | From utah | Registered: Jan 2009
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hang in there. you're not alone. we all know exactly what you're going through and you can come here anytime for help and support. i know it's a small consolation but please know you'll get through this. with time, inch by inch, you will improve and return to your life.
My daughter and I had one where we went to the zoo. When days are bad we say "remember the zoo day".
You will have "zoo days". I went to church yesterday in my sleepy pants and no makeup, and laid on a couch in the coffee room and listened to the service. But I went, so that was a big win for me. God bless you.
Posts: 374 | From United States | Registered: Nov 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by sixgoofykids: Some of the pains were the last to go. Bart treatment helped a lot for me, but I had to treat it at the same time as babs or I'd backslide there.
I had left-side only pain, too. It was weird. Even someone giving me a massage could feel the left side was different. Now it's a little weaker (I lift weights) and I can see it in the mirror, so I lowered the weights to work it up to as strong as the right side.
Hang in there.
The left side? My upper body is all left side. I have had numerous MRIs and X-Rays and could find nothing mechanical or structural although my left shoulder, and the entire arm hurt like hell! I want to cut it off. I try to work out and when I stretch it feels like my left shoulder is shredded. Sometimes lifting things I feel my left elbow crack and pop. That never happened! My left wrist feels like it was sprained a hundred times. My left forearm feels like it was stabbed and beaten with a hammer. The pain travels all the way into my back. Nothing stops it. If I rotate my shoulder it also cracksa and pops. Interesting thing is, I had major surgery on my right shoulder years ago so if anything, that one should bother me, but no! My left hand turns mottled and dark red or blue-ish/greyish at times. I feel a large knot or lump in my left shoulder between my neck and deltoids and had a myofascial specialist work on it to no avail. My Lyme doc says it is probably just a large benign cyst or fascia knot but I told het it seems strange this also sdtarted to bother me around the time of all these other symptoms.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I am sorry you feel this way. There are things to do with a child that is quiet that maybe only yes/no has to be your response if you are in lots of discomfort or fatigued.
I spy books playing dolls coloring color by number make letters of the alphabet with a flashlight read draw puzzles a little girls tea party board game of pretty pretty princess
IT is a tough thing to be alone. Sometimes TV gets really boring. I know too. If you are in bed alot, is there a chance to hang a birdfeeder outside the window. Just some ideas, call me crazy and that is ok too. Trying to make the best with my kids too.
Kindly, Barb
Posts: 167 | From USA | Registered: Jul 2008
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posted
Richedie...I can relate to how you are feeling and I haven't even started treatment yet.
Part of me is so scared because the pain is unbearable at times and I know it's probably going to get worse before it gets better.
I haven't been myself for the past four months and my 6 year old wants her mom back.
I used to have the energy to play games and go bike riding but now it is a struggle to get out of bed and do a load of laundry.
We watch movies, read books, color, and sometimes just snuggle. This can be difficult when your body hurts so bad that you don't want anyone to touch you but kids are pretty resilient and you'll have plenty of time to make up for it when you feel better!
Sometimes I push myself to do more for her sake...but I always end up paying for it dearly for almost a week later.
I try and keep the perspective that it won't always be like this...that someday I'll be back to my playful, cheerful self.
In the meantime, I trudge ahead, try and work through the pain, and pray that things will get better.
I am a firm believer that God never gives us what we can't handle...no matter how difficult it may be right now.
My thoughts are with you...please know that even though you may feel alone, you are not.
JT
Posts: 72 | From Massachusetts | Registered: Feb 2009
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bettyg
Unregistered
posted
sent welcome post to rose ...
pointed out my ssdi, disability, info galore to help her win her claim now!!
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i was real sick when my last two kids were toddlers
one thing we did was play with a kids tape recorder-we taped ourselves singing and acting silly and replayed it
thye learned to kiss me on the cheek very carefully so they didn't wiggle the bed cuz i hurt so much
they are grown now and working on their doctorates-they both fought lyme and won
please do what you can to get thru one day at a time...they are getting closer to a cure ...hang in...your future may be different than you thought it would be...but you do have a future
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Who is getting closer to a cure? There isn't even much research going on around Lyme! Sorry, just not sure why one would think that.
Thanks for all the kind words. Thing is, I have like no fatigue. This past weekend was all about pain, depression and feeling light headed and off.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
There's more research than most know. It is just fragmented. Columbia University has on going projects, so does UC Davis. Many younger doctors coming into the infectious disease field are saying why don't we treat this disease properly but they are stifled by insurance companies and the old guard of IDSA.
My LLD says she talks to these people at conferences and many are on the edge of breaking out of past norms. They aren't experienced enough to sit on boards yet, until that happens we are all stuck.
Posts: 199 | From utah | Registered: Jan 2009
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posted
I try to do one thing a week special with my daughter.
Last week it was to play Putt-Putt. We did have fun. I did have to rest alot over the weekend, but that was ok.
Sometimes I am so tired all we do is go get our nails painted, but she thinks the world of that.
She lays on the couch with me and I watch Disney with her. I am sick, but I try to reserve energy for up coming events.
Like cheer competitions, dance recitals, and so forth. I refuse to let me lyme ruin her life like it has mine. And, you wouldn't even know I had lyme when I was screaming at a cheer competition!!!
If I don't feel well, her father knows that he better make up for me not being there!!! Because she will tell me, daddy didn't cheer for me!!!
But, I normally do everything in my power to make "big" events. Seeing her, makes my heart want to burst inside with pride!!!
That is why I keep going. And sometimes I feel like lyme is dragging me around like a cowboy tied behind a horse, and not only can I not keep up, but I am just hanging on for dear life!!
But, I have that angel and she is only 5, but she makes me want to keep going....
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I am happy if that is true, that young docs are interested in correct treatment for this Lyme and co-infections. But, how are they even finding out about this based on the lies they are fed but medicalboards and the old guard? I guess from dealing with sick patients?
I played a while with my daughter last night and played guitar for an hour. This all helps but pain can get in the way of guitar playing.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I've been there too. I had three little kids, a 2 year old, a 4 year old, and a 6 year old. I thought I must of died and gone to hell. I have scars on my knees from having to crawl I was so sick.
It was awful!! I felt so bad for my kids! I learned to take one day at a time. I didn't get much help from my family either.
It does get better though. My kids grew up and are now a huge support. I have three beautiful grand kids.
So just try to take one day at a time and know that things will get better!
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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quote:Originally posted by richedie: Who is getting closer to a cure? There isn't even much research going on around Lyme! Sorry, just not sure why one would think that.
Thanks for all the kind words. Thing is, I have like no fatigue. This past weekend was all about pain, depression and feeling light headed and off.
Do you take pain meds? Have you been evaluated for depression?
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by aiden424: I've been there too. I had three little kids, a 2 year old, a 4 year old, and a 6 year old. I thought I must of died and gone to hell. I have scars on my knees from having to crawl I was so sick.
It was awful!! I felt so bad for my kids! I learned to take one day at a time. I didn't get much help from my family either.
It does get better though. My kids grew up and are now a huge support. I have three beautiful grand kids.
So just try to take one day at a time and know that things will get better!
Oh my, so you are still sick after all these years!!! I am so sorry. See, that is what I mean, I can't do this anymore.
I do not take pain meds because I hate the thought of more medication! Enough is enough. Before I know it, I am going to look like a drug adict. My LLMD knows I have depression.
I have multiple dreams a week of being killed. I dreamt I was robbed and shot and I thanked the person. Last night I had a dream I was stabbed.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
bumpster
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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