Living with lyme

[Ginny43]

I have pretty much resigned myself to knowing I'll never recover from lyme disease. The only option is learn to live with it. The nutritional therapy helps, but does not eradicate. It's the same thing with vitamins and supplements.

:cool: lI love this little cool guy icon who wears dark glasses and just smiles away. That's the way I greet the world that doesn't understand lyme. Forget about the "me" without the smile and dark glasses.

My question to all of you is what's your favorite activity or method or approach to living with lyme disease. Favorite, of course, means what works best for you? What keeps you from being depressed? What keeps you able to function and not sleep all day? How do you deal with people who don't understand and think you are just lazy (i.e. unexpressed, but visible opinions of relatives)?

Hope everyone had an easy Thanksgiving with no stress.
Blessings,
Ginny43

[Ginny43]

If you are a "word" person and just like to work with them, here's a neat thing to do. (Addictive for some people) A web site will donate the number of grains of rice that you win while playing their game. It's called freerice.com. Information about what the game is and how it works is under information about playing the game rather than under faq's.

It's a good way to spend time and feel useful. I think I donated 810 grains of rice. It doesn't cost the player anything. Advertising sponsors give the rice to the needy.

Blessings,

Ginny43

[Sonsie]

The only option is learn to live with it.
True, but hope for a cure while you're doing so. Encourage people to support Lyme research.

The nutritional therapy helps
Bacteria aren't too impressed with this, it seems. :(

what works best for you? What keeps you from being depressed?
I don't know any other life but this one, so it's a little easier for me. I've found that friends who had a normal life and then got sick have a tougher time. I think "being depressed" is part of the illness, so I'm not sure that it is possible to beat that entirely. I make every effort to focus on what I have, versus what I don't have. I don't compare myself to others in a "poor me" way. I make a big deal over minor things, like the fact that I can walk a whole mile on the treadmill for the first time in 10 years or so! Never mind that I do this at a very slow pace. :rolleyes: Sometime I write these things down, so that I can see my blessings and victories again and again.

What keeps you able to function and not sleep all day?
The need to earn a paycheck so that I'll have insurance, shelter, food and clothing. Pure terror, believe me. :eek:

How do you deal with people who don't understand and think you are just lazy (i.e. unexpressed, but visible opinions of relatives)?
I ignore them. I rarely share specifics about what I'm going through with relatives. Most of them are nice people, but some are thoughtless and others think that if I would do what they think, I would be OK. Right. :p When my mother complains about how she has to spend $79 a month on her medication, I bite my tongue. :mad: My meds cost me more than that per day. As for colleagues and most of my friends, they don't know I'm sick. They no doubt think I'm a tad crazed, clumsy, and crabby, plus more, of course. But I don't tell them lots of things -- what my electric bills are, what I spent on my new purse, when I'm getting my teeth cleaned next, and so forth and so on -- and so I see no reason to share this with them. As you've learned, it invites bad vibes. I need to avoid bad vibes. (I do share with my Lyme friends, some of whom are well but have sick children.)

Love the rice game! :D Thanks for letting us know about it!

[Ginny43]

Thanks for that. You covered a lot and I'm going to read it over and over.

I talked about the issue with an e-mail friend who has non-lyme problems. It's best to just purposefully avoid being a "whiner." It's better to never discuss personal problem even if they never understand or realize your pain; you can determine to fully enjoy discussions of events, great ideas, goals, and interesting daily activities. Being a one-topic bore hurts the listener and the speaker.

It's not hypocrisy, it's just a choice to be better. And once in awhile, when the pain is unbearrable we'll talk about it with each other because sometimes you need a listening ear.

That's along the same lines as to what you said Sonsie. Thanks again.

Blessings,
Ginny

[Sonsie]

Ginny, I do whine, but I try to do it very selectively -- best when the person who has to listen to it can relate and knows that I am not that way all the time. It has, of course, never gotten me anything! :mad: :D

Mostly I guess that I don't want to talk about my situation because if I do, I will never get any sort of respite from it. I need as much respite as possible. I want to think about other things, and enjoy as much of life as I can. I can't do that if I spend all of my time telling people what things are like for me, especially when they can't -- or won't -- be able to comprehend any of it. And if they simply want to know my business so that they can tell me that I am wrong (I have relatives like this), forget it. I won't play their game.

Love your little icon, by the way! :cool: Hang in there! We will somehow get through this together.

[Ginny43]

I've been thinking about this for awhile. Even though it always looks like there's no progress in doctors recognizing chronic lyme disease as real, the research goes on. Blimey listed a report about neurological research on 11-29-2007 which will soon begin. [called : Neurologic Manifestations in Chronic Lyme]

This is not the only one. Every so often she brings our attention to other studies. The fact that these take place are to our advantage. Sooner or later, the researchers will find answers. They will be able to show the doctors the physical evidence necessary for them to believe Chronic lyme is actual, not imaginary.

Sometimes I see glimmers of something to do in the reports. I found one thing in an abstract about the affect of Vitamin D on lyme arthritis (http://ajp.amjpathol.org/content/full/167/3/775#F1 -- if I've typed that in correctly). That's encouraging too. a) Those authors recognized there is a chronic lyme arthritis, and b) It gives me an option to decide to take Vitamin D on low sunshine days. Doing nothing at all is just depressing.

Maybe wearing dark glasses filters out the drears :cool:

Still praying for us all.
Ginny

[Sonsie]

Thanks for the link, Ginny! :) It doesn't work, and the web site is designed so stupidly (gee, why not -- it's for doctors!) that I couldn't find the article. But I've seen reports of it already, so I think I know the main points.

Not sure of how old you are, but I've heard that as we age, we need Vitamin D supplements, because older bodies can't absorb enough from the sun. The current theory is that this vitamin really helps brain functions (though no one can explain this). Anyway, remember that over 40 in the U.S. is "old," so you might want to keep those shades on and be sure that your vitamin regimen includes Vitamin D!

The research on Lyme disease is way more than adequate, by the way. Information about how to treat it properly is understood way better than other infectious diseases. It is a blot on any doctor (and the entire medical profession, by extension) who refuses to take some time to learn about it. And it is entirely unethical, considering the Hippocratic oath for starters, to refuse to treat a known illness, especially a serious neurological illness like Lyme.

[Fightin Tiger]

I get really frustrated when people don't acknowledge lyme disease. I'm only 17, and none of my friends know what it is and wonder why I miss so much school, while my father sees me on the couch and yells at me for not doing anything, because he thinks I'm making it all up.

I don't understand how they think I've kept up this type of charade for 2 years going now. I'm supposed to be attending college in the fall, why would I feign sickness? My mother and my aunt support my wholly, and I suppose that's the only think keeping my sane right now. My depression has spiraled lately I've noticed, because I've just gotten so frustrated with being sick every day, every hour. I never get a break. I can't remember anything, school has gotten harder than ever because I just can't retain information. I can't walk well, stand for long periods of time, sleep at night, even carry my school books to class. Plus, on top of that, my specialist isn't covered by my family's insurance, so I feel guilty knowing that I am costing my parents thousands of dollars a month. My father is out of work currently with the economy and I hate having to see my mom open the bills for my medical stuff.

I've never really known anyone with lyme like I have it, and I'm new to the forum, so I hope you guys can maybe help me out a bit. Living with lyme has gotten more and more difficult around here.

[lolli]

Hi folks, I am new to this site but joined another forum a couple of years ago at the website lymenet.com. It has a lot of support and medical information. You can whine there and it is okay.

And look up in the library on Burrascano's information on Lyme, I think it is called Neurological Manifestations of Lyme Disease or Late Stage Lyme Disease. Also look up Brian Fallon's paper on the Psychological part of Lyme disease. Fightin Tiger, you might print this and just leave it out somewhere where Dad might see it, and read it.

I am so sorry you have caught this stupid disease. I try to laugh at it although I know it is hard. I know other people dont understand and it is hard to tell what you are dealing with. My loving family of two sisters always say, "Whatever you need, we will be there." I am still looking for them after 4 years.

Depending on where you live, try to find a support group. There are some in the bigger towns, and if you life in one of those you can possibly find it on Lymenet.com which has a listing for support groups.

Hang in there.
Lolli

[blondehart]

I went to a local lyme support group last week & left more depressed than before. I believe I got infected in May 2005 & wasn't diagnosed until bell's palsy in October 2005.

I spent the next couple of years doing acupuncture, TCM, massage therapy & cranio-sacral therapy, but the one thing that seems to help the most is the sun.

I now spend most of my year in a warmer, sunny climate & am able to function so much better.