LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » Back to Bed

 - UBBFriend: Email this page to someone!    
Author Topic: Back to Bed
Mama2six
Member
Member # 38069

Icon 9 posted      Profile for Mama2six     Send New Private Message       Edit/Delete Post   Reply With Quote 
You probably all are familiar with the pattern.

Today I am back in bed. Yesterday I was just trying to go about my normal "stuff", but felt less capable than the day before.

I went to bed for the evening, hoping to feel better, but woke up feeling worse. I tried to, again, go on with life today, but could not. This is SO very frustrating.

I have people waiting on me to move into their new apartment, and I could not even get up the stairs to work on cleaning it out today. Instead I have been in bed most of the day, hardly able to think. I tried drinking from a cell phone charger (instead of my water bottle), looked for a book that wasn't even missing for 20 minutes, kept forgetting what I was saying and thinking, and could hardly have a normal conversation, and felt so terrible after my epsom salt and peroxide bath that I could hardly get back in bed. [Frown] I feel like I have alzhiemer's.

Of course I don't know WHY I am doing so bad again, the only pattern seems to be that I feel "okay" for a few days, and then "bad" for a few days, and sometimes it gets really bad.

My Dr. is also struggling to know what to do next... I should have seen some improvement by now. (1 year into treatment.) My liver enzymes are rising, my heart rate is dropping, I can't get enough sleep... and I just thought I'd check in with a group of people that might understand how crazy it is to try to know what to "do" about anything when feeling so sick you can't think.

Thanks for listening.

Posts: 60 | From PA | Registered: Jun 2012  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
Member # 38743

Icon 1 posted      Profile for lax mom         Edit/Delete Post   Reply With Quote 
Maybe you are in a push/crash cycle?

http://www.hfme.org/adrenalinesurgetips.htm#657796417

I used to do the same thing. I would feel ok, then try to go and live a normal life, not realizing that I was really doing too much. Then I would crash and my body would take a long time to recover.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

Posts: 2519 | From USA | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
desertwind
Frequent Contributor (1K+ posts)
Member # 25256

Icon 1 posted      Profile for desertwind     Send New Private Message       Edit/Delete Post   Reply With Quote 
I can certainly relate. Been at this for close to 10 years - a freakin decade of my life.Most of the time I am pretty good and can go about a normal day, but then , like you, I will get hit and be laid up in bed. Not knowing whether to ride it out, go back on meds or consider things other than Lyme.

The last two days the chronic flashing lights in my vision are back again. A constant light show reminding me that something still is not right.

It is totally life interrupted...Sorry you are going through a tough time and I certainly understand the frustration the uncertainty brings.

How many nights going to bed not feeling great, praying to feel better in the morning only to wake feeling worse. Know you are not alone in your experience. I hope tomorrow is a better day for you. DW

Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

Icon 1 posted      Profile for GretaM     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes I can relate.

I can only compare it to crossing the road and getting hit by a steamroller.

Not that I've experienced it...

But I have good hours, then catatonic hours.

Then a good day, and the next day is awful.
Somedays I can't even hold a cup, whereas the day before maybe I carted a bag of cat litter around.

Life interupted is a great term.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
Mama2six
Member
Member # 38069

Icon 1 posted      Profile for Mama2six     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, crossing the road only to get hit by a steamroller is a good description!

Still sick today, but I'm quite interested in the push/crash cycle lax mom mentioned.

Is this something that happens with all lyme patients? Or do some lyme patience get this M. E.? Do those that have ME ever get better?

The sick/better cycle never seemed to coincide with what I was doing... I'd get sick whether I was doing anything taxing or not... but the website linked was saying that it takes a few days of resting (when sick) to get better, and it takes 24-72 hours of "pushing" to start feeling the effects, so perhaps this has been going on and I just did not know it was all related.

I am alone, have 6 kids, a business (also fully financially responsible for all of us), AND am trying to deal with being so sick... I have worked as hard as I can (am physically able) since getting sick. In fact, I even work laying down if I have to, until I can go no longer, and I am ALWAYS stopped by my abilities, and I ALWAYS have way more stuff that needs to get done hanging over my head.

I actually work until my ability to "be a person" goes away. I start loosing my ability to think and I start loosing my speech (think stroke-like symptoms)... and when that happens I immediately stop. (I could not go on, obviously.) I do not know how to guess at what point I am going to start feeling worse to prevent i t from happening... I just drop everything and go to bed when it does happen.

This time, when I start to feel better, I think I am going to try to continue to take it easy, even if my world falls apart, just to see if the cycle stops. However, figuring out how to take it easy long-term would be very tricky.

Posts: 60 | From PA | Registered: Jun 2012  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
Member # 38743

Icon 1 posted      Profile for lax mom         Edit/Delete Post   Reply With Quote 
Sorry to have confused you. I take info from other illnesses (ex. ME/CFS, Fibromyalgia) and apply it to my situation since I figure many with CFS/ME have Lyme and co and just don't know it.

Basically, it's talking about push/crash cycles due to adrenaline surges.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

Posts: 2519 | From USA | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
Member # 38743

Icon 1 posted      Profile for lax mom         Edit/Delete Post   Reply With Quote 
When I first got very sick due to Lyme and co 2 years ago, I would have good periods where I thought I was healed and would start living normally again. Then I would crash and need to recover.

This left me devastated because I truly thought I was healed when I felt better.

Now I try to stop BEFORE I crash. Then my recovery doesn't seem to be as lengthy. Yes, it's annoying to have to go lie down several times a day...but I don't want to get back to the point where I'm stuck in bed 24/7 unable to even lift my head.

Now, there are also flares that have nothing to do with my having pushed myself. These I cannot control and just have to rest until my body is ready to function again.

You have a LOT on your plate.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

Posts: 2519 | From USA | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
MannaMe
Frequent Contributor (1K+ posts)
Member # 33330

Icon 1 posted      Profile for MannaMe     Send New Private Message       Edit/Delete Post   Reply With Quote 
My husband had push / crash cycles also - though his were longer times of feeling well before crashing again. This was before Lyme and co diagnosis.

It definitely pays to ease the push to try to prevent crashing. Reading James Wilson's book "Adrenal Fatigue" helped understand what was going on.

Are your children old enough to pitch in and help more when you don't feel good? And to ease your load so you don't crash so hard? Its amazing how they can be willing helpers when they understand mom or dad is sick.

Posts: 1724 | From USA | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am in bed today, and feeling a little grumpy. Forgive me if I sound forward.

Something is going to have to give when you are this sick, and need to treat and detox. I don't know how old your kids are, how much care they need,

but doing that, plus running a business, without help-
If you had cancer, would you change things and get help?

I take on too much as well. I have had good improvements after treating with 2 LLMD's, but still have issues, still treat, go too far.

When this happens, people around me are 'surprised'
Well folks, having an illness gets real sometimes.
Everyone gets used to me running the show.
To 1/2 way run the show, I'm in bed by 9 p.m. every night,

eat right, take supplements, exercise the best I can, and don't work myself to where I need to lie down and can't speak anymore. Running yourself like this won't get you well :-/

I understand about the kids- being responsible for them. I hope you can get some time and help---
Sending good thoughts-

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
desertwind
Frequent Contributor (1K+ posts)
Member # 25256

Icon 1 posted      Profile for desertwind     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yeah, when people see us on our "good" days they think we are "cured" and act surprised when they see us crash again. Like, "oh...I thought you were better?" Brutal cycle. I tend to not bring many people into my inner world these days.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Mama2six
Member
Member # 38069

Icon 1 posted      Profile for Mama2six     Send New Private Message       Edit/Delete Post   Reply With Quote 
Believe me, I have been trying to work myself out of some of the responsibility, because I really fail all of the time at getting it all done, but it's still there. Without income, I can't pay for the lyme treatment. (Have been there as well too!) So it is just a terribly difficult situation, and I'm trying to do the best I can do. There are no "people" who can take care of me.
Posts: 60 | From PA | Registered: Jun 2012  |  IP: Logged | Report this post to a Moderator
surprise
Frequent Contributor (1K+ posts)
Member # 34987

Icon 1 posted      Profile for surprise     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm sorry Mamasix- I understand. Wish we could help more.
Sometimes drastic changes need to be made (moving, that kind of thing)

Yeah desertwind, that's exactly it for me today. Exactly.

And, the not understanding how taxing traveling or certain social situations can be. I do what I can.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
Mama2six
Member
Member # 38069

Icon 1 posted      Profile for Mama2six     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have thought of moving, but there are no easy answers. Having just gone through a divorce, I will not qualify to buy a house that will fit all of us until the 2013 taxes are filed... I have often thought of moving in with my brother (though he would need something bigger than his tiny apartment) and then someone is at least around to help with the kids when I am so sick. But there is no clear way to do anything, because my business requires a warehouse, and I certainly can not afford to move both us and the warehouse. (And without the business I can not afford to pay the bills or have lyme disease!)

So, we just keep struggling on.

Posts: 60 | From PA | Registered: Jun 2012  |  IP: Logged | Report this post to a Moderator
desertwind
Frequent Contributor (1K+ posts)
Member # 25256

Icon 1 posted      Profile for desertwind     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sounds like a very tough spot to be in. Sometimes there are no good answers......and you do everything you can to keep going day by day.

So sorry for your struggles.

Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Mama2six
Member
Member # 38069

Icon 1 posted      Profile for Mama2six     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you all. I'm sorry you can relate. [Frown] It does help to be around people who understand though, so thank you.

I have been out of bed for a few hours on and off today, so I'm coming out of it. I am going to experiment with trying to not do so much and see if it affects things at all. I can only experiment short-term... for long term change I'd have to figure out how to work less and still have enough money to survive. (!)

Posts: 60 | From PA | Registered: Jun 2012  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.