Hi all, OK, this sounds like a very personal question but I am really curious about how bedridden this disease makes a person.
I have always needed a lot of sleep to function. I believe I have had Lyme for most of my life so years ago when my mother-in-law would call me on the phone and ask me what time I got up, it was quite embarrassing at times. (She is no longer living so don't have to worry about that anymore).
I have gotten so I can't function without 16 hours of bedrest every day now. I am having a hard time getting anything done.
It's hard to take care of 12 horses and need that much rest. I have gotten to the point that I do what is absolutely necessary and let the rest go.
I have guilt feelings because it looks like I'm being very lazy. But I WANT things to get done. I just can't seem to be the one to accomplish those things right now.
I don't have a lot of pain. I do use magnetic therapy pads to sleep and sit on. I think that helps a lot.
My problems are mainly fatigue related. Sometimes I am so fatigued I can hardly move and I have to lie down and sleep. And brain related. I think about doing something and just the thought will wear me out.
And of course, I'm discouraged which adds to the malaise.
So, is this typical Lyme? Or am I really just lazy like my m-i-l used to think?
Thanks in advance!
Posted by Areneli (Member # 6740) on :
I used to spend 18 hrs per day in bed. It lasted for almost two years. At present it is only 8 hrs; still about an hour longer than in the past when I was healthy.
Posted by AZURE WISH (Member # 804) on :
At my worst I was sleeping 20 hrs a day and only got up off the couch to travel the short distance to the bathroom
(which felt like 10 miles)
Now I sleep probaly about 12 hrs and I rest alot... I have to.
It doesnt matter what or how much I wanna do something... I can only do what I can do.
And if I do too much I probaly wont really be doing anything other than watching a movie for at least the next day.
So yes I would say it is typical lyme.
And please dont guilt yourself into thinking you are lazy. It is hard enough to deal with this disease without all the guilt we throw on ourselves.
Been through that and I had guilt myself into thinking I should do more.. so I push myself harder than I should... and ended up getting sicker abd sicker till I finally realized..
I have to put getting well first and what I need to do what I should do and what I want to do is all going to have to be put on the back burner for now.
Best wishes
Posted by 5dana8 (Member # 7935) on :
I need and spend 10-12 hours a night sleeping.
Used to spend alot of time durning the day in bed too but now am in parcial remisssion and try not to go back to bed during the day.
Posted by tothepoorhouse (Member # 8595) on :
I nap a lot....and sleep a lot.
At my worst, I would get up and try to force myself to act "normal". Then I would crash.
Now, I need about 9 hours of sleep with a one hour nap in early afternoon.
And I totally understand the guilt. Every night, I would make a list of things I had to do the next day...a goal per se.
Then, the next night, I would look at the list. Sometimes I got one thing done.....most times, I didn't even check one thing off of my list.
It's not like I don't want to do these things, it's that I can't. But I want to and then feel sooo guilty, even with the lyme diagnosis. I'm an over achiever who is constantly under achieving.
So I totally understand. Nice that you are still taking care of your horses.
[ 22. November 2006, 12:13 AM: Message edited by: tothepoorhouse ]
Posted by dmc (Member # 5102) on :
used to be exhausted and now if herxing could spend 18 hrs in bed. After 3 months on mepron & Zithromax (summer of 2004) don't even have to nap. (that was a necessity for years.)
Sleep about 9 hours nightly, but do get up sometimes, like tonight, do to left foot & leg pain. When it quiets will go back to bed.
Posted by clairenotes (Member # 10392) on :
I came down with CFS many years ago. I am sure it was lyme but no one checked for it back then. But CFS was also being ignored by the medical community. One doctor called it "the illness du jour." And a relative insinuated that my illness was psychosomatic or imaginary.
I was sleeping/resting 16 hours per day. This was needed to function during the hours that remained. I was fortunate that I lived in the same building where I worked part-time. I could crawl over to my desk and work for awhile, and then crawl back into bed.
Though I know there are some very good doctors out there, I was not getting the help I needed for CFS. One day I decided that I was going to take my imaginary illness to an imaginary doctor (an alternative practitioner). That was the beginning of my transition back to health, though lyme was not recognized until recently when a strange set-back occurred. We only knew microbes were involved.
Anyway... We all know that there are a thousand things we would rather do than lay around in bed all day. But we have a reality to deal with. It is important not to let others tell us what we should or shouldn't be doing based on their own limited understandings. Because we need all of our resources we have remaining, to get well. Judgment or guilt pull on those resources. I try to breathe them away as quickly as possible.
Claire
Posted by karatelady (Member # 7854) on :
Not only lyme but viruses can make you sleepy like the Epstein-Barr Virus. Many who have lyme have active EBV.
Also, are you sleeping through the night or do you wake up all night long?
One of the first things my doctor at the Fibromyalgia and Fatigue Center did was get me on some good sleep meds (which I don't need anymore).
I took Xyrem which literally knocks you out for over a year. (I took it over a year, it didn't knock me out for a year )
Its VERY important that your night sleep is good. Otherwise, you will be tired all day. I actually thought I was getting good sleep but when my doctor asked me if I was and I told her yes, she asked how many times do I wake up at night? I told her 5 or 6 times ~ I thought that was normal!
Its definitely NOT in your mind. Lyme can make you tired, viruses can make you tired and all the other things that drag down your immune system from the lyme disease.
Sandy
Posted by lymiebean (Member # 10015) on :
Everyone here is so right on. I am only learning right now that my former tendence to suck up the fatique and pain and carry on was depleting. Now I am in a complete reversal. The Burrascano protocal says failure to rest is one of 2 main reasons for protocal failure.
But, from the same protocal I learned about cordyceps and this wonderful mycellium has given me stregnth to carry on. I can get the order stuff or you can go to the burrascano protocal here on the site.
good lluck
lymiebean
Posted by SarahC (Member # 10054) on :
I lay in bed all the time resting, but not sleeping. I have lost my job and cannot function much anymore.
My problem, INSOMNIA! I have tried just about everything and the only thing that lets me get a few hours sleep is Lorazepam.
I am so tired I do not know how I can keep my eyes open and stay awake. But I just lay there and lay there and do not fall asleep.
UGH!
Posted by hardynaka (Member # 8099) on :
8 hours is the norm now.
But in times of big fatigue months ago, I needed a long nap in the afternoon to function.
Even with that nap, I would be in 'standy by mode' the whole day, doing the minimum of the minimum to keep energy.
Fatigue sucks. But one can get better, believe me. It may go in a day and come back in the other.
I'm still fighting this nasty disease, but certainly with much less fatigue than in the worst months.
Hang on!
Posted by jggrl (Member # 9470) on :
Thanks for posting this! It's really supportive to hear how everybody else is going through the same symptoms.
Currently I sleep an average of 12-14 hours each night. Then I spend a good amount of the day propped up in bed. However I'm lots better than I was and at least now I CAN sleep...I had a lot of trouble with insomnia earlier.
Hang in there and keep up that resting--WITHOUT the guilt trips! Posted by sickandtiredofbeingsandt (Member # 10189) on :
Hi all, Thanks for all the good replies! I needed this boost of ego. I am having a down day because of a business problem that might end my source of income for horse expenses and medical bills. So, that has been a sore spot all night last night and all day today.
No sleep last night so today is hard. I tend to obsess over problems and can't shut my mind up and it keeps me totally awake.
But I do appreciate all the encouraging replies. Keep 'em comin'. Thanks!
Posted by dalton (Member # 10651) on :
Fatigue that goes beyond anything I'd ever experienced -- we should create a new word for the malaise and eunni that this disease brings on. I would never get out of bed if I didn't have to. Ditto for a relative who also has late-stage lyme.
Some doctors prescribe Provigil for late stage Lyme.
Posted by smiles132002 (Member # 7949) on :
I tend to go through periods-They can be for a month at a time where I am unfunctionable. I sleep 18 hours a day. I am exhausted, I have no mental ability, I have no intrest in "pretending to act healthy" because I have no energy.
Most of the time I rest-If I didn't have to work I wouldn't-but like the rest of society, I have to pay bills.
I also HATE being non-functional. I like to be productive and feel like I am contributing. I am an extremely motivated person. It makes me so sad that I can't be a "normal" 22 year old. It makes me so sad that I haven't finished college.
I want so badly to go back to "normal" life-but I can't. I go out with my friends and "pretend to be normal" but I spend the next 3 days non-functionable. But I feel like it's those times that give me the inspiration to keep fighting.
Another problem is that because I am in so much pain and my appenadges go numb all the time, I wake up all the time when I should be sleeping. I have taken so many different pills and alternative meds-but they just don't seem to work.
Hence I am tired ALL the time-I live with my mom, who thinks I'm irresponsible and lazy. I just have to laugh because if she lived in my body for one day she would go crazy. She doesn't get this disease even though she says she does.
oh boy-well i think i have shared too much lol
Lindsay
Posted by tothepoorhouse (Member # 8595) on :
This is a great post.......
I always feel so guilty that I rest too much, don't get things done and could stay in bed all day and all night.
I'm lucky that I work from home and instead of a lunch break, I take a nap break. Even then I am tired all of the time.
I fear sometimes I am just a lazy sloth. The worst is talking to my best friend, who tells me all of the things she gets done every day.
She does more in a day than I do in a month. Posted by sickandtiredofbeingsandt (Member # 10189) on :
Oh Yes, People! I am so sorry that we are going through this, but I am also gratified that I am not the only one. I too get such feelings of guilt and call myself "lazy" when I WANT to get things done but I am stopped not only physically, but something mental/emotional is going on as well.
I can't get my head around all the work. Thinking about it all overwhelms me. And I'm also suffering from severe burnout.
I'm burned out on having to force myself to do even the simplest things. So just imagine how burned out I am on the harder stuff.
And the pretending....Just wanting to have some semblence of "normalcy". So, I avoid people when I shouldn't be. I feel like a fraud around people.
They always ask the "how are you?" queston but it's just a greeting, not a real question. I feel like I'm lying by saying: "Fine". I'm anything BUT FINE.
And I envy people that have a real life. I sure don't.
Sorry, I'm whining today.
Posted by JeffM (Member # 8919) on :
Before I was diagnosed, and even many years before I wass incorrectly diagnosed with fibromyalgia, I worked at a high level job but spent most of each weekend in bed or recovering.
Once I started herxing, about 4 months into treatment, I was in bed 24 hours a day for @ 5 months. I could get up a few times a week, but that was rare.
My body was sick and needed the rest.
Suddenly, it changed. I still spend the first few hours of every morning in bed (I am still quite sick) and I rest two or three times a day.
Posted by DolphinLady (Member # 6275) on :
At this point in my tx, I feel best when I get 9-12 hours of good sleep. I am however busier during the day than I have been in 5 years. It feels wonderful to be catching up with things and having more of a life. I do try to remind myself to stop and take a rest but I'm not always good about this.
Posted by kam (Member # 3410) on :
I think you know the answer to your question.
But, just so you know you are not alone in this....
I am not one of those who sleeps a lot but I do need to be flat on my back a lot.
I have another lyme friend who did need a lot of sleep each day but has improved a lot with treatment and time.
AFter 5 years, I think I am finally learning to pace myself so I can do a little each day.
I usually am up and out in the power chair for an hour or two each morning.
This is a big improvement and is really nice.
I keep it simple when I am out. Multi tasking and multi thinking and talking to others is usually out.
Quiet is in.
I am either reclining or flat on my back as I am now until around 3 or 4. Then I take the dog out for 20 to 30 min.
This is new. I am hoping my health will be able to continue this added task.
Then it is back to being flat on my back or reclining.
I am not sure how long I am sleeping through the night. I think about 8 hours.
I do nap during the early morning at times. NOt sure how often that happens. IT is usually after I have had more activity...like a doctor's appointment or physical therapy, etc.
Like you...I have to keep things to just want needs to be done..like eating and taking the dog out for exercise.
IT is new that I am able to get the dog out daily for an hour or two.
It is also new that I no longer need to wait until meals on wheels arrives to eat..which was usually around 11 am.
I am now able to fix myself something to eat in the am and have cancelled meals on wheels.
Yes. IT is still frustrating that I am not able to do all week what I use to do in 45 min.
But, I have hope that things will continue to improve.
I too have relatives that do not understand this condition and can only see things through their eyes.
For example...my dad was taking my dog for a 15 min walk in the afternoon. He would tell me I needed to go also.
He couldnt' get it through his head that I am not able to do this yet.
My mom comes over and thinks it is terrible my dishes are not done, the floors are not vacuumed (afterall she gave me her old vacuum), the dog is on the couch, the laundry is not done, there are papers on the dining room table, etc. etc....she thinks I am just a poor housekeeper and choose to live this way.
She thinks the fact that i have hired someone to come every two weeks to do houshold chores is a luxury and not a need.
She just doesn't get it. She can only see things through her perspective which is very small.
I hired help to get the 5 years of paper work out of boxes and sorted and filed. WE have been working at this for some time now. I can only do about 15 minutes to an hour on a good day.
I asked my mom if she could store my rocking chair at her house until the office is set up.
She comes and checks out the office each time now to see if she can bring the rocking chair back over and get it out of her spare bedroom. She complains that the work is still not done.
I just limit my time I am around them and have a lot more peace that way.
My hope is that we will both be able to be up and about and have more of a normal life with time and treatment.
I have seen others do this. Why not us too. Posted by Paula 007 (Member # 8002) on :
Sometimes you just cannot go on! I found I had sleep apnea, which resulted in my sleeping 8 or 10 hours as opposed to 16 or 18. My life was basically go to work, sleep, go to work, sleep. When my husband made me ask my internist about my snoring, she suggested I be tested for apnea. So now if the Lyme (& it's partners) are leaving me alone, I sleep 8 or so at night; but have a nap also (with my CPAP) every afternoon - my kitty likes to nap with me. But now, for instance, I'm up! But, I'm not! I feel that I have no energy, none, and that it's never coming back. It will. At least I hope so. But each of us has our own limitations; so my husband (who is able) is fixing me a nutritious lunch (because I'm not able), then I'll nap. I don't know what I'd do without an understanding husband. But he was diagnosed with Lyme also in Feb and has a lot of days when he can't. So I do, if I can. If I cannot, nobody does it. It all works out somehow. You are all in my prayers. Don't ever give up!
Posted by ChrisBtheLymie (Member # 8916) on :
I spend about 12 hours in bed, and another hour or two resting during the day.
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