Topic: Does coming to the message boards ever make you feel worse?
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
I hate to ask this because you are all so helpful and I've learned a lot, but many times I read the boards and start feeling a panic attack coming on. I don't want to be in the dark and pretend everything is okay but I can't help but feel like I should try to live my life and not become obsessed with this disease.
I try to stay away from the boards at times but then I get an overwhelming urge to come here and read.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No need to actually answer questions. I'm just thinking off the top of my head and I think in questions. They are just for your own personal check list.
First, if you are getting panic attacks when you come here, I hate to do this but more information must be presented to figure out WHY.
But, first, if you feel panic, immediately get off the computer itself, not just this board. Take a break. Immediately.
You can read later. Nothing is more important than preventing a a panic attack. Nothing. Your body is telling you it needs something different.
When you come back to assessing your support system:
It's important to figure out why the panic attack? But that may not be so easy and you may simply have to settle for covering all the bases of support.
Is it from self-talk, overexposure to horror stories that you fear could be your own if you don't do everything perfecting?
If so, breathe. And then, look at the bigger picture. Panic attacks are common with lyme and other tick-borne infections, too (especially bartonella). A check list:
* are infections being adequately addressed?
* are your support measures adequate? ADRENAL support sounds lacking. Liver support may need to increase, too. Toxins often cause panic.
* is self-care on target? Glycemic index where it should be? Enough protein?
* is your self-talk set to cancel out negative thoughts - or reframe them? You might want to seek training in cognitive therapy from a LL therapist. It's amazing how much easier it can be with certain techniques for reframing.
* do you have enough tools in your bag for diversion techniques: Yoga, medication, Tai Chi, good walking shoes, a hobby or other interest ? Even when you rest, does your mind take a break - complete with visualization and filling up of your senses?
Regarding that "overwhelming urge to come here and read. Why? What, specifically draws you? What need are you trying to fill. When that is identified, you can figure other ways to fill that need.
If it's because you need to know more in order to proceed - to gain knowledge - there are many fine books that may work better for you. Pick one (I suggest Singleton's "The Lyme Disease Solution" for practical advice on adrenal support and nutritional supplements in general.
If for community, although most here "get it" and can offer some emotional support if it's too much, find a Tai Chi group or similar group where people are doing something positive together.
No one is suggesting becoming obsessed. That's a far place from becoming educated. Feeling overwhelmed is understandable but that is still a far cry from studying at an obsessive rate.
Becoming educated is not mutually exclusive to trying to "live your life."
It's about balance, information vacations, discipline with time allotted for study sessions, and limiting your exposure to the sources that are most likely to over the best degree of information.
You can just leave it all to your doctor if you are absolutely certain your LLMD is top-notch and considering all aspects
and
You are absolutely spot on with your self-care routine.
I say, then, sure, go on and live your life.
However, if you have more to learn in order to be able to live your life, pick one book at a time. One article. Either stop coming to message boards or open on the links to new articles or diet advice, etc.
Regarding diet, you can learn a lot from many other places that won't remind you of lyme or expose you to such serious pleas of help even in the subject line.
Whatever area you need advice in to perfect your healing outline, make a list. Then use the search feature here to hunt down only those links.
There are many ways to approach your studies. It's important to be aware of the emotional element. If, no matter how much you need to learn more about this or that - if you get overwhelmed, stop. Get off the computer. Spend time in nature - in a real environment.
While the computer connects us to others going through this, the sheer concentration is unnatural. Like reading all the news sites not just from the networks but a from a few major cities. Soon enough, your world view is totally shifted. Set a timer for 5 minutes. Read. Then move on.
You might add some enjoyable music to study sessions, etc. Finish with a short walk, paying attention to all the different kinds of trees in your neighborhood. Pay attention to other things, all around you. Mindfulness can have miraculous effects.
You always have the energy of the earth beneath your feet, the strength of the sun on your shoulders and the magic of the moon to massage you to sleep. Nature is all around you. Just notice it and it will feed you.
So, yes, indeed do what you are able to do in "real" life. This is "independent study" and you have to design a routine that serves you. Good luck finding your sea legs - and knowing when to hit the waves and when to stick to dry land.
Lastly, hugs. Get good hugs as much as you can. We can all offer you virtual emotional support but you need living beings around you. Connect to life. Yes, indeed, your body is telling you something is off kilter. So, yes, look to all sorts of other place and other relationships to fill the need you feel for life.
Sing if you are so inclined. Learn a musical instrument. Do art. Move that energy, call upon it to move through you. And enjoy the process. It's all about the journey. One day, one hour at a time. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- CD: Scottish folk artist, "Dougie MacLean LIVE - From the Ends of the Earth"
I've been listening to this while writing. It has some fabulous songs that reach deep in and touch the heart with such understanding and compassion while, at the same time, propelling one's spirit to a good place.
Favorite tracks: 3) Rescue Me 5) All Together 7) Ready for the Storm 10) Singing Land 11) Caledonia 12) This Love will carry
posted
Keebler, What a thoughtful and helpful response for St. Olaf and all of us.
Thank you.
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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posted
Thank you Keebler for your post.
Posts: 104 | From No. VA | Registered: Aug 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Yes, St. Olaf I do feel that way sometimes.
I think that it is very insightful of you to notice that you are doing that.
I want to be informed. I have gotten some invaluable information and support from this board but I also notice when I am becoming obsessed with Lyme. When I notice that I am doing that I try to walk away and focus on others more.
Let's face it we have the disease and from a pragmatic point of view it will not help us to worry about it and think about it all the time.
Thanks for sharing. I didn't know others felt that way.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
When I first got Lyme a year ago, and diagnosed myself after the first 2 months, I was terrified by what I read on this board. I was afraid to watch Under Our Skin until after I'd been sick for six months and learned a lot more.
I spent a few months in shock and disbelief that I could go from living my happy, active, normal life to having a disease that could do such hideous things to me in the future, and that was difficult to get rid of. I just couldn't adjust to it.
I also remember thinking, "I don't want to end up like any of those obsessed, negative people who are out there ranting on Lymenet."
After a few months, I adjusted to living with Lyme, and I learned enough to know that y'all are telling the truth and being realistic about your lives and the situation with Lyme. It's just that the truth sounds unbelievable to the uninitiated.
After I got convinced and accepted it, I still had the problem of explaining to everyone around me, and felt like I had to teach them a whole course in Lyme disease before we could have a conversation about how it was going for me.
Finally I have reached a better level of acceptance. All kinds of worse things may happen to me, including my two worst fears--neuro symptoms, and relapse after I get better--but I am going to conquer this thing in the end.
I have a good doctor, good emotional support from friends and family, and I am working on rearranging my life so I can take better care of myself in terms of practical details. I will win.
Now that I have a plan, and I have started seeing signs of improvement during the past month, it doesn't depress me to read Lymenet.
I know enough now that when people talk about their distressing symptoms and their depression, it is not telling me something I didn't know that Lyme could cause.
Since I feel calmer about my own prognosis, and appreciate very much that I have things much easier than many of you, I feel more compassion than anything else, when I read the heartbreaking posts.
If I can post a reply that gives somebody a bit of comfort or information that helps them feel better, then I feel glad I was able to help somebody a little.
That really helps me feel like there are still worthwhile things I can do, even when Lyme prevents me from doing things I used to.
But if you're taking everybody's pain on your shoulders whenever you read their stories, or if others' problems make you fear for yourself, then you're better to take a break and stay away for a while.
Pick or buy some flowers, or ask somebody to bring you some, and look at those. Get bright yellow ones, or some color that you find cheery.
Do simple things that make you feel happier.
If you don't have pets, borrow somebody's puppy for a little while. Sit in the sun for a few minutes if you're able to. Open the window and smell the spring air. Read a really funny book or watch a funny video if you're up to it. Look for little activities that are life-affirming and pleasurable, and treat yourself to them.
If something makes you feel consistently bad, then find a way to get it out of your life, or change it. We all feel bad enough without looking for more pain.
Good luck to you, and make today a good day.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Back, I'm very sorry that you have to experience panic attacks. I wish being on this net brought you the "warm fuzzies" that it brings me (not always but often enough). And I hope you get to feeling better soon!
And, Keebler, you are the bomb!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, if my thoughts help, great.
Truth is not always easy to face. Dealing with lyme takes tremendous courage and dedication. We can't just go on living as it does not impact us. However, we can keep it from kidnapping us.
No matter how one sees it, this IS an enormously heavy weight. Lack of understanding on the part of doctors and family members make it much worse and that puts more pressure on us to have to learn more and it increases our isolation. Yes, it's a terrible situation.
But becoming overwhelmed is not the same as having become obsessive. Anyone human is going to feel overwhelmed. It goes with the territory. The severity is enormous. There is no discounting that. Obsessive is not all the same as being overwhelmed, although, it could be confused as such.
We just have to figure out how to gather & manage the information, organize it for our use - and turn off the fear factor along with turning off the computer when our saturation gauge is spilling over.
Still, this is much like being tossed into a post graduate level program with a full course load. It's human nature to want to learn all we can to get out as fast as we can. It's just not so easy.
Remember, though, that knowledge can cancel out fear. Action can cancel out sadness. Even aggressive rest is an action that has a powerful undercurrent.
I applaud the courage of every person living with lyme or other TBD, stealth infections. We have to forge the way - it's a hard job - but it's time for some recess. And, for those who can swing it, a vacation of sorts, maybe even a gap year. Remember, there are many who "graduate" on out of here. -
[ 05-13-2010, 02:37 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
wow- thank you all for your wonderful posts ...I truly hope we can all beat this!!
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I got diagnosed just over a week ago on May 3, 2010. THat is when I first came to Lymenet. I have to admit...it freaked me out and I panicked.
I want / need to hear success stories. Stories from people who are similar / worse off from me who have made it through and came out on the other side with 100% remission and off meds for life (my goal!!) And I wasn't really finding that. So I panicked and cried a lot thinking my world is over. I have a wife and two young daugthers and a good career...and this tick has ruined everything.
10 days later, I'm much better. I'm over the "why me" phase and am getting to the "I'm going to win" phase and I do that be getting educated, learning about my symptoms, learning by experience from those who have come before me or who have this worse than me and who have emerged triumphant.
One thing to consider...any website is always a bit biased with the desperate people. As a rule..people who are 100% well are out living their lives. So it isn't really an accurate snapshot of how everyone is going to turn out.
I do think if one reaches 100% recovery, they should come back from time to time (at least 1 / year) and provide an update. Recovery stories give hope for normalcy and help keep me going.
Keep the faith!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
BackinStOlaf, I hope you are doing better this afternoon.
bcb1200, wow, you got from "Why me?" to "I'm going to win" in record time! It has taken me many months, and I'm still working on it sometimes. Some have told me it took them even longer.
There is a thread somewhere on here with a lot of success stories.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
bcb1200 - that really makes sense..most of us on here are still suffering- the success stories are not really here anymore...
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I do sometimes feel that way, and because of that, I don't come here very much anymore.
For me it's a personal thing. I can easily get obsessed with things and start thinking negatively-I was like that even before lyme,
so if I don't have a question that needs to be answered or have some other reason for being here, I generally stay away now.
I practically lived on this board before dx and for quite a while afterwards, but got to the point where I didn't want to be on here as much and where I couldn't be on here without feeling either stress or depression.
Bottom line is that for me anyway it tends to go in cycles. Sometimes I need to be here and the site brings me comfort, support and info, and other times I just have to stay away and focus on other things.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Yes it sometimes makes me feel depressed; but then sometimes it makes me feel empowered.
Until I am well, I can't stop looking for new ideas and research; and I know that those always end up on lymenet.
Until I am healed I will continue to return here to look for answers and support and to also possibly give support to those that are newer to this illness. And I hope one day to be one of the success stories.
I feel like I am a lymie trying to live in two worlds at the same time. You have to try and find balance between the two. Its not always easy, but you have to work at it.
If you feel depressed, take a break. Give yourself limits on how much time you are willing to spend here and try to give yourself that same amount of time focusing on something else not related to LD.
I see how easy it can be to become drawn to LN. Its the one place where you can be with ppl that totally understand you; but LD does not define your entire life, or it shouldn't. We are more than just an illness! Try not to let it consume you!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have been having some more functional days than before. Not all are good and I'm not normal, but you probably noticed I'm trying to spend a LOT less time here. I don't feel it was doing me good healthwise and almost obsessive.
There's a fine line to draw. Education is important. Compassion is important. Getting away at times is too.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Seek, I have noticed that you haven't been around as much. I totally get what you are saying. I have to take time away from here too.
I have to let my mind go to another place away from lyme; and I find that it helps me mentally and that in turn helps me physically.
Seek, glad you are having more functional days. Me too! I still crash and burn, but having more good days than before.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Yes! The board scared the crap out of me... but when I was researching some other things someone said something that made sense to me. You're always going to get the worst stories on a board like this. Because the people who have taken the meds and got over it are out living their life!
When I first came here only one month ago I could barely make it through a day of work. I was calling my mom daily telling her I think im going to pass out im going to die blah blah. I also got told their was no way I would feel better in a month! And that I would need atleast two years of treatment. And one drug would never be enough!
Well its been a month and I feel much much better. I can sit through a whole day of work just fine. I can work out again. I can almost get up those stairs out of the subway without air hunger. Neither I nor my LLMD think I will need more than a year of treatment.
Remember, some people here couldnt walk or move before getting diagnosed... They went some 7-15 years. i dont know what your situation is but I went 6 months 4 of which I hit that physical low and even then I still could drag myself to work.
Every case is soooo different. I truly believe someone can have some strains of lyme and their bodies immune system can beat it. I believe someone can have lyme and they may only get mild symptoms that only advance to things such as arthritis into their late 70's when its considered normal. some will get lyme get the normal symptoms get quick treatment and never have a problem again. And so on...
My recommendation would be to come to the board for advice or recommendations not for hard facts. Go to your LLMD with any concerns and most of all stay positive! Seriously, it is a fact that cancer patients who have an overall more positive attitude have a higher rate of survival and beating cancer.
lastly, something that helped me was that I did a search on here when I was trying to find people who were helped by amoxicillin. I found many post from people who no longer write here... The claimed cognitive issues had cleared on the drug amongst other things... it made me feel better that I saw people who were doing the same treatment plan I am doing and had got better... hince why the post were so old and they werent on here anymore.
Posts: 286 | From St. Louis | Registered: Dec 2009
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I felt bad but ALSO because of my computer and EMRs.
I have no longer lyme and now can stand this computer for longer, with or without LN.
But during my sickest time and even AFTER lyme got into remission, my EMR sensitivity was SOOO HIGH. It made my hands shake, I got insomnia, bad thoughts, feelings, cold hands and feet, etc. But not from LN, but from EMRs MAINLY.
So watch out for EMR exposure. According to dr. K. EMRs are the ISSUE NUMBER ONE today for most of his patients, even before heavy metals, pesticides, infections, whatever else you can imagine.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
This site was overwhelming to me at first. When I joined, there were several posts permanently at the top of the page about suicide prevention and what to do when you run out of $$$$.
Over time I've come to appreciate the site, have learned to take from it what helps me, and not get distracted by opinions or ideas presented here with which I disagree.
I think the size and scope of the site often makes it less personal. There is a learning curve to get accustomed to the boards, but it's well worth it.
But yes, if it's not helping you right now, then take a break.
I don't think that people who are active here are obsessed with illness, either. I think it is a natural and normal response to want to understand and address your health when symptoms are not under control.
I spend most of my time reading about Lyme when I feel sick. On my better days, my interests naturally shift to other topics.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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And I hope you get to feeling better soon!![[bow]](graemlins/bow.gif)
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But I surely can relate.
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