I am 28, exhausted, absolutely so tired it is not funny.
My life going like a snow ball in hell.
I get long hours of sleep (7-8) and wake up frikin tired as hell.
Symptoms that remain:
Occasional Internal vibration. Occasional atypical Lhermitte's Sign. Aggravated Parethesias of the hands and feet. FATIGUE Mental anguish Depression Sorrow Loss No Discipline Laziness Exhaustion Leg Weakness (seems aggravated, posturally) Despair.
I am on 400mg Doxy a day, 3mg LDN, 25 mg Losinopril (blood pressure).
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
If it makes you feel any better, I sleep 9-10 hours a night and wake up tired.
Is there anybody in your life who you can talk to about these issues? Lymenet is a wonderful resource, but typed words are never the same as a physical person.
If not, have you ever tried working with a therapist? This is something I've considered in recent months because I don't share my worst symptoms and fears with friends and family. So it all builds up.
It's difficult, but it is important not to blame yourself. You list "no discipline." Are you taking your meds every day? If yes, then that's discipline.
We just have to remember to measure ourselves with the sickness. Not against what we were when we are healthy. It's ok to spend a day not moving off the couch if that's what your body needs that day.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Just offering lots of hugs here. I keep asking the good Lord every day the same question..when does it all end? It ends in his time, not ours.
Im sitting here today with my tummy just burning up and feeling so hopeless myself. I hope you get to feeling better again soon.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
(((((lostcityagent))))
please ask your doctor for some meds to get you over this hard time.
We have all gone thru some dark days with lyme and is does help me to know people here do understand and care.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
You need to get some help to ease your depression -it is aggravating everything else - interfering with the effectiveness of your medications and your body is finding it hard to deal with all of it.
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I know dealing with this disease can be so hard in so many ways.
People who have not expereinced fatigue from illness just dont understand how challengeing it is to try to deal with. When most people hear I'm tired they think about a time they put in a long day at work...
I wish. I know with my current fatigue level I can't even consider a couple hours worth of work. Now I sleep at least 10 - 12 hrs a day. I am tired all the time.
I know that sounds bad but at my worst I was sleeping 20hrs a day and falling asleep in the middle of my own sentences.
Is it possible you are herxing? If I remember correctly you are still relatively "new" to treatment and you havent been on this regimen that long. In the beggining of every new abx I herx much worse.
Besides the fact that lyme can cause depression and other psych symptoms. I think when your life gets altered by an illness you go through the stages of greif...
I know I did. I grieved for the predisabled me (who was actually still sick with lyme). I know I will never be her again.... some of this is for the better some for the worse...
I am not saying give up hope. I still plan on doing everything she planned on doing (except maybe the skydiving
But being disabled has changed the way I view the world .... and improved me in many areas. Once I got to acceptance I was a much stronger person.
You may want to see a dr for the depression.
And as to your no disipline symptoms. like someone else said you have to aknowledge the limitations your symptoms impose on you. Going to you collapse really is a bad way to go - trust me I have tried that route.
I know my poor body needs rest to heal. And I accpet that I can only do this much today and somedays all can do is sit and watch movies with my cat. And yes it is still frustrating but I know if I push myself too hard I will feel even worse for at least the next day.
Sorry I am so rambly - Its the fatigue makes it harder for me to focus.
posted
So sorry your feeling so sick and so down. Please don't let your depression get out of control. I am not a pill pusher but it has helped me greatly. I also so a therapist for several months. He helped alot too.
Don't make the same mistake I did. My depression completly sunk me and took over my life. Worse then the lyme. I hospitalized myself for it last year.
I now take a little blue pill everyday and it has made me so much better.
I understand your fatigue too. It has always been a major symptom of mine. I just recently went through an insomnia faze and now I am back to fatigue. I sleep all night and can barely function in the morning. This to shall pass.
Please discuss help with your doctor. Whether it be medication, therapy or whatever else they can suggest.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Let your dr know how bad you feel..I think sometimes the herx, needs a break so you can catch your breath..
Remember to detox..The abx kills the bacteria, or so we pray and both then become toxins..
Many bodies do not adequately detox..
Posts: 2360 | From SE PA | Registered: Mar 2004
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Carol B
Unregistered
posted
I'm not giving up-so you can't either!
I try to look at the scope of my whole life- I'm years old, and Lyme has only been a part of it for the past two years, and I just started treatment 4 months ago-Lyme has brought me to the deepest depths-but it is still just a blip on the radar screen in the whole scheme of things. and I, for one, plan to be around for the victory party, or at least the remission party- no matter how long it takes.
posted
You are not alone. I would say welcome to the club but I doubt that you would be glad of it. So what to do. First of all this is a disese. You have not done anything wrong. So be very kind to yourself. If you are tired and wake up as I do wiped out, take it easy. Do what you can do and do what you enjoy as much as you can. Find friends or family who can provide moral support and loving kindness.
Turn to those things that give you joy whether that is music or art or theatre or sports, reading, cooking Turkish and Greek quisine, chess the stock market or gowing orchids. At the same time suffering and pain are just a fact of life, like the weather, a very difficult one granted but that is all they are, like heat waves in California or hurricanes in South Carolina. They are not a moral statement.
I think you need to discuss all of this with your doctor and I hope that you have a lyme literate doctor because that is what you really need. It may be that you are having a Jarsch-Herxheimer Shock Reacation or herx. They are nothing to take lightly but this means that you are giving Boris and Myrtle Burgdorferi (my name for the bugs-the technical term is Borrelia Burgdorfer-mine just love sherry and have built beach houses in the lining of my stomach) and their myriads of spirochaete relations just as hard a time as they are giving you. That is not a consolation but my attitude is I intend to take as many of the illigitimi out with me as I can. However you need to carefully calibrate your medication and other therapies to control or certainly mitigate if not completely eleminate these reactions.
Finally, I will not give you my sermon about exercise. I will merely say that if it were not for the fact that I am a walkaholic and I swim three to four times a week I would be a bed ridden invalid or a suicide or dead. While you may not feel like doing it and much of the time I feel like, look like, act like but hopefully do not smell like forty hells I make myself go walk or bicycle or swim. I can assure you that the sight of me in a swim suit is positvely revolting, but my attitude is whatever they see serves then right!!!! At least I do not have some hideous tatoo plastered on those parts of my anatomy that one cannot mention in a family e mail. Go and do it anyway. You CAN DO IT!!!
Hope this helps. Cheers. Thomas Parkman
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Do they have retreats just for seminarians who are near to taking Holy Orders? Maybe your order has a monastery or abbey where you can get away from it all and find inner solice.
Aren't there physcian priests in your order who you can go to for counseling and treatment? You are probably not the first seminarian who grappled with whether they were doing the right thing. You really need to talk to another seminarian about this. I bet you'll find they also have moments of doubt.
I feel for you. I grew up in a very Catholic environment, and knew a few nuns quite well. Being a member of a religious community is quite different from being in the general populace. It can be quite lonely not having a significant other.
I wish you well. Please do not give up the fight.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
LostCityAgent,
I will pray for you. Lyme is a very hard disease to manage. Reach out to others to tell them how you feel. Find a Christian counselor (or a good counselor if not Christian). A counselor can be subjective, listen without judgement, and help give you coping skills.
I just finished reading the book by Larry Crabb, a Christian counselor, called Shattered Dreams. It really hit home with me that when my dreams had gone by the wayside with Lyme Disease is when I needed to be closest to God. Reach out to God, even if you do not feel his presence. He is there. You have to keep fighting the fight and asking for God's wisdom. Otherwise, Satan will win.
I don't mean to preach a sermon, but without God and a good counselor I don't think I could make it through this disease. It is not easy, but hang in there. Blessings. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8931 | From Illinois | Registered: Aug 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
John.
You mustn't despair.
You think 7-8 hours of sleep is "long hours of sleep" -- ???
Hello?
Begging your pardon, dear, but 7-8 hours is what reg'lar people get!!
I read your post and think: you have just not really come to grips with lyme. You are thinking 'I should be better already.' You seem to be thinking you can just go about your day like normal and yeah, ok, you have lyme, but it shouldn't sideline you that much that you can't continue on pretty much like normal.
First part of the problem is: You're a man. (Sorry, guys, no disrespect intended.) So you doubly feel like you have to carry on and "seem" OK to the rest of the world, even though you're clearly quite sick.
There are hardly any men walkin around who actually know how to just shaddup and go lie down and STAY THERE.
(Yeah, there's prolly a few women like that around too, but that's for some other thread.)
You probably will NOT take any pain pill.
You probably will NOT take an anti-depressant.
(In spite of the fact that lyme causes pain and depression.)
Next, as a seminarian, you probably have many expectations set before you -- by the church and by yourself, whether consciously or otherwise, that pressure you at a time when it's really too much. When you need to marshal your forces just into getting well.
As far as your list goes, the 'no discipline' and 'laziness' "symptoms" you list are just plain ridiculous. John, as the guy who originated the killer list of lyme symptoms, you have GOT to know these are at the top of the list! Now, recall your true nature before lyme vs. after lyme. See the difference? That's what it does to you!! It's not that you've suddenly gone all shiftless. It's the disease. It will get better.
Where most women will tell their doctors that they are depressed and having problems, most men will just 'buck up' and keep things pretty clinical. However, since depression is actually a clinical sign of lyme, please share it with your doctor. Call him up. You can toss any prescription med when you are feeling better.
You ARE going to get through this. You will start having days where you blaze through the day with a surplus of energy, wondering where the hell it came from! Slowly, you'll have more days. There will be setbacks, too, but over time, things will look up.
Remember when we were celebrating you NOT having MS but having lyme instead, and I was cautioning you that it could get pretty wretched in treatment? Well, here we are.
I mentioned in another thread having faith in others. I forgot to say that most important is having faith in yourself. You know what kind of person you were before. You still are that person.
Get help, here -- at your doctor's -- with family, friends, any quarter. When you don't need it, you'll give it back multiplied many times!
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
John, just a short/sweet note...I do care; everyone else has said it so well, so won't add mor. HANG IN THERE; it will get better. Bettyg
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
LostCityAgent, I did not read all these helpful suggestions others posted because it is late in the day.
Let me tell you how I helped myself. The fear of death and everything else that went along with it, the pain, the horror, the anxieties, the rages -- I solved with a bunch of yellow pads and pens. I wrote and wrote and wrote, a couple of days later, I tore the sheets up into bits and pieces only to continue writing -- about the pain, the horror, the way it made me feel and most of all the fear of death that I experienced. I filled sacks with yellow bits of paper. Nobody else reading it would have been able to make any sense out of it. The thoughts of an almost lost soul.
And every night I went to bed, wishing my husband good night ending with the words: Tomorrow will be a better day.
Eventually, some better days came and I ended my day with "tomorrow will be an even better day".
Over the years, my days turned into beautiful days again and I am still thankful for every beautiful day that comes our way.
Maybe you can start believing that tomorrow will be better for you also. Remember, your body follows your brain. Your brain is the engine to your body chemistry.
I am hoping for you!
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
Just wanted to chime in and be supportive, too --
I know it can feel like dying having this disease/these diseases -- some days it really does! But most of us DO get better, some of us get completely well in time.
Recovering from an illness like this takes not only time, but strength and patience, and some days it is impossible to keep a stiff upper lip and function as normal. I know that you are at a stressful point in your life right now, too, and that compounds the equation.
Like others here have said, I hope you have someone who will listen to you -- a therapist, a priest/advisor, a friend -- someone who can be supportive and non-judgmental. I also hope you can talk to G-d about this -- it is an intensely personal journey that each of us is on, and the things we take from it (and yes, the things it takes from us) will change our lives forever.
It does sound like you may be depressed -- by this I mean clinically, chemically depressed -- not only the despondency and despair that come from dealing with all the changes. Lyme can really do a number on the brain and can wreak psychological/psychiatric havoc on an organic, neurotransmitter level-- many, many of us have been there. Herxing can cause a lot of mood symptoms, too.
Please talk to your llmd about the way you are feeling and see if he or she has any suggestions to help out. A lot of us do well on anti-depressants -- there are also nutritional ways of helping balance out some of the potential chemical imbalances.
As for the overweight you mentioned --- I'm sure you know by now that Lyme is a big-offender in the metabolism department -- lots and lots of us have piled on pounds almost overnight -- so please, if possible, try to look at that as another symptom, not a personal failure. My LLNP assures me that the majority of people start to spontaneously lose weight as they get well --- I have now lost almost all of the weight I gained with this last terrible relapse without any effort.
I will keep you in my prayers and in my heart.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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I am 37, male, father of three, husband and know how this feels. Anti-depressants helped me.
Effexor took the depression away so I could function while fighting. It helped reduce the brain sensations as well. I used it the first six months, two of which were under the original stress diagnosis.
I eventually weaned off it...made me lazy, etc. I've since hear there are better choices.
Excercise invigorates me...I look forward to mowing the lawn when its 90 degrees...just makes me feel more alive. A good walk around the block, a swim or odds and ends around the house. Any accomplishment. Last summer I didn't want to do anything.
Weight gain is no fun but mine recently started to turn around when it seemed I got things under control. The lyme slows you down and some meds make it worse...including the high does doxy, which was wonderful for my head but horrible on my waist line.
I've felt so depressed by this disease, allowed it to nearly beat me, but hung in and now seem to be over a hump....or having a good day anyway! I started painting my shed last week and my mind is clearer than its been in a year. It does get better!
Step outside your body and look at the whole picture and considering your condition, you'll see you are doing pretty good, just getting up and trying to function. When it starts getting better, you'll feel invigorated by even simple accomplishments.
god bless you John, keep fighting
Mike
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
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resurrect past hobbies, if do-able. get a new hobby. harmonica?
wintertime: bought some comedy tapes. this reminds me to get another one.
went to the iceskating rink. didn't skate though. nonetheless i enjoyed the atmosphere. this reminds me
summertime: went to the county state fair--farm and horse show.
go to the town pool,of local ymca, and take a dip once a week/month. take the load off the joints, and look wading about. the 3 meter spring board is out for me, as is iceskating. terrified what would happen went to free concerts in the park.
your county may sponsor musicians of your favorite genre, and other genres.
went to an airshow for small-and vintage aircraft--aerobatics, and so on.
you can see an airshow from afar. residents and surrounding businesses charge a nominal fee to watch the air show for the day. surrounding hills, fields would provide free viewing. while you won't get to inspect,or sit-in, nor tour an airplane, some of the sites you see when watching from a hillside at the end of the runway are awesome. jimmy franklin and his wing walker is an awesome show. i think he has a pratt-whitney single jet engine hooked up to his bi-plane
dog, cat, and horse shows?
go to your county's website and find out whats up.
gardening, small scale. while its end of july, you can still get something going in pots. herbs, etc.
if your city or town has a community garden, see if you can get a plot; if not, sign up for next year. call a university extension center on horticulture. they often supply seeds for free for community gardens, sell small plants during spring, and later, depending on what season, and time of year within that season. if you can't stoop over to attend plants, build teh plant stand to a comfortable height.
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
pq,
Gardening is a great idea. Most Seminary's I've been to do have beautiful gardens. There are places for rest, prayer, and contemplation.
I have a contemplation garden behind my garage. My plants come from folks who I care about. Some are no longer with us but the plants and their memories live on in my yard.
pq - thanks for the motivation as I think I will brave the heat and do some much needed tending in my garden.
LostCityAgent - I hope you are feeling better today.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Everyone else has given you excellent suggestions that I could not possibly add to.
I've had Lyme for 21+ years and cannot take ABX due to allergy, so I only take herbs. I am winning battles, but losing the war. I completely empathize with how you feel.
However, I just want to add that drugs like Lisinopril can sometimes cause depression all on their own. You might ask your doctor if you could try a different blood pressure drug to make sure that is not part of the problem.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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LostCityAgent
Unregistered
posted
Wow you people really care. It will take a while for me to read thru. I went away to St. Martin's Abbey for a few days to think. Wow.
posted
Know that you are not alone, as you can see from the replies, and sometimes that is a bit comforting to me. I know that it seems so hard at times. I am 25 years old and think I may have had lyme at least since I was 4 years old. My struggles and pain have been tremendous. I do not remember what it is like to be "normal". Yes, so many days I ask "why?" and "how am I going to get through this day?" but I have to keep pressing on, just as you and the ret of us do.
I think Trails is on the right track. I think it is critical to lean on God for strength, with out him I am not sure how one would make it through this disease. I know that the pain of this disease feels like a torture chamber and like there is no end or relief. That is what gets to me at times, but then I think that there is a reason that I got sick and only God knows that. I am going to take what I have been given and turn it into Gods glory. I sometimes even think that maybe this is to help someone else out or something far beyond what I can even humanly understand, but I do know that God is in control of my every breath.
Never forget that God is with you and that he does love so very very much. I also know that it is very hard not to be bitter, but please don't. Hang in there. Take it a day at a time and know that your lyme family is here for you and we are all going through this together.
You are in my thoughts and prayers.
A fellow fighter, Lymefighter7
Posts: 47 | From WV | Registered: May 2006
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posted
Magic the year before infection, i built a 416sq.ft. garden, both for garden and meditation and was able to plant half of that. the following year and since then, a different story.
now just do very small scale pots, and planters. had 4 tomatoes this week, more to come in a month. a few cooking herbs, some flowers, and a few artemsia plants growing up through the cracks in the patio bricks. haven't found out the harvest time yet the artemesia. gotta double check if its annua or [absinthium(spell.off here)] probably a month's worth at most, and thats a stretch.
Book for lymies: Title: "Square Foot Gardening"
Posts: 2708 | Registered: Feb 2005
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Carol B
Unregistered
posted
I often feel that God works through people-when I lose touch with people -I lose touch with God. How beautiful that we can all stay connected on Lymenet. Carol
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
pq,
At least you still garden even if it is in pots now. You didn't give it up. Hooray for you.
LostCityAgent,
I'm glad you got away to St. Martin's Abbey for a few days. I hope it helped.
Acorn
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
John,
I'm also really glad you were able to get away.
I'm hoping you're able to find some strength and some peace.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Sooo many trolls......soooo little time!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
I'm so sorry your having such a hard time. I don't know, but Doxy was one of the hardest antibiotics for me to take. I got extreme fatigue, to the point I felt like passing out.
I wish none of us had to go through this!! Hang in there, it will get better.
Hugs!! Kathy
-------------------- 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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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Oh, great. What did Lost City Agent do?
He was one of the few people around here that tried LDN and then talked about it, something I am very interested in.
Good grief.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Anger management issues (from a guy with a lot to share).
Very sad.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I must have missed it......
Why was he banned?
Posts: 1366 | From Southeast | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Sent you a PM, Boomie!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Yes, I would like to know what exactly LCA did to get banned as a troll.
Sorry, but "anger management issues" doesn't explain anything specific. Lyme rage happens here from time to time, and gets discussed regularly.
I haven't even seen LCA post here lately, so am completely baffled. (again)
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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