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SO tired of the roller coaster

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Posted 4/4/2012 2:34 PM (GMT 0)
Hi there, I've been gone for awhile from this forum.  But, am sitting around today (lying in bed), and mostly am just tired of being tired.

Tired of the roller coaster should be tired of the seesaw; ups and downs have not been as extreme as a roller coaster, more like a very, very slow seesaw.

I've been treated, for almost 3 yrs., by a great dr in NYC, traveling from the SE USA.  I've done everything he has advised me to do....except get enough rest, probably.   I have cont'd to work full-time (with some time off periodically for medical leave) b/c I need health insurance.  I've done IV abx (for 9 months), oral abx, pulsed abx, MANY nutriceuticals.

I think that I would probably benefit from doing sauna or physical therapy or massage or something else that I'm not doing, but I am too tired to go there during the week after getting off work.  And, Saturday is my "sleep as late as you want, don't do anything" day.  When I don't "sleep as late as I want", I feel worse until the next Sat. where I can then catch up.  My job has been forgiving, to a point, of my absences.  But, I can't be off every day.   I don't like doing a half-assed job.  I don't like to let other people down.

I am so tired, I am thinking that I can't get better as long as I keep working.  I have periods of time where I am feeling better, stronger, able to do more, (these last periods of weeks) then I start to slide back down.  I'm in a 'down' right now.  Even though this "down" isn't as bad as I was at my very lowest, I am so discouraged.  Not just my body, but my mind is affected, too, where I'm acting like a dingbat. If I've had one constant personality trait or drive over my entire life, it has been for me to NOT be a dingbat.  Making mistakes is just awful for me.  I know that nobody's perfect, but I hate to make errors that I know I wouldn't make if I was well.  (I tried to give my dog's medicine to my husband.  Fortunately, he's NOT a dingbat, and wouldn't take it.....)

Am I going to get better?  Does anybody really get better?  Is this how my life is going to be forever?

 

Posted 4/4/2012 5:06 PM (GMT 0)
tongue  Oh Cleo,

I know just what you mean, it is disheartening.  I was in a similar place as you just this autumn. 

Whenever you meet an impasse like this is a very good idea to change up your regiment.  Your meds are taken care of, sounds like, so what about the rest of it?  The massage/sauna idea is just the ticket. 

You need to get these toxins on the move.  It is an endless circle, you are tired, so you try to rest, but its unfulfilling rest so you need to rest more.  When I was where you are now, I started a new exercise program.

Sounds ambitious and a little wrong given how tired you are feeling, but it really worked for me.  I started small, just doing the 5 Tibetan rituals and moving on to detoxing yoga routines.  You can find all that on YouTube. 

Then, when I started to feel stronger and had some more energy, I signed up for a personal trainer to get the most out of a workout program that wouldn't kill me.  My trainer had had Lyme herself so she had done reading on what was best for recovering Lymies.

I am not going to lie to you.  It hurt and it was very hard to get back at it sometimes.  It brought on herxes and detox discomfort.  But boy, what a difference.  I am back to mostly my old self.  I went snowboarding and I am able to work all day without feeling tired until 9pm.

Doing this kind of program is as important as taking your meds, IMHO.

It is so important to do this for yourself!

Posted 4/4/2012 5:46 PM (GMT 0)
Thanks so much, I really appreciate your input.  I'll look at the YouTube clip(s) you recommended.

It makes it better that someone else knows what I'm talking about and can advise from the perspective of experience.

Thank you!

 

Posted 4/4/2012 6:23 PM (GMT 0)
You can also get a portable sauna for 200-400 dollars.  Then you have it right there at home. . .  

Maybe there is a "missing piece"--like detox?  Epsom salt/peroxide baths are easy and relatively inexpensive.   Or how is your diet??  Have you tried gluten-free or Paleo?  Not eating sugar?  I like the exercise idea--maybe also gentle yoga would be good. 

 Hang in there and I hope and pray that you find the one thing that could be "it"!! 

Posted 4/5/2012 8:29 PM (GMT 0)
Thank you, treehouse mom. I have looked at the portable saunas (FIR) and that would be very convenient, probably more likely that I would actually do it if it was at home.
As far as diet goes: I have not been good lately. Easter candy is a weak spot. That doesn't help, definitely.
Thank you for your response, I really appreciate it.
I learn a lot from reading about all of the topics, from so many people. Thanks for helping this to be a helpful & "safe" place to go to.
Posted 4/5/2012 8:51 PM (GMT 0)
hugs
Posted 4/5/2012 9:46 PM (GMT 0)
I've got a portable FIR sauna and really like it.

I feel like I got quite a bit better ... not perfect. It takes effort, patience and time. I can only work part-time and fortunately, was able to hold onto my job while I was treating. I wondered every day if I would be able to do that. I can walk every day and do light exercise. But I have to pace myself and use energy wisely.

You can get better, too. But you may have to go easier on yourself while your body fights this bacterial infection.
Posted 4/5/2012 11:33 PM (GMT 0)
My heart goes out to you - it's so frustrating being on this rollercoaster! Sometimes it's really hard to get out of the mindset of, "when will this be over!?" There's no way around it - being sick is hard! It takes a lot of strength, and you've obviously very strong for having put up with all of this, while maintaining a job - please don't forget how commendable that is.

I really do think adding detoxing to your regimine would help a great deal. There are a lot of suggestions in the "new to lyme" thread - the baths are usually really helpful for a lot of people, and drinking plenty of lemon water. And I know it's hard, but a positive attitude really can make all the difference in the world! I know it's so hard to be positive when you're feeling so crummy, but all it takes is a fresh perspective to make it just a little bit easier to manage.

I hope you start to feel better soon!
Posted 4/8/2012 2:37 PM (GMT 0)
I have only been doing treatments for 3 mnths, rather than 3 years but can relate to feeling overwhelmed with holding down a f.t. job while trying to heal. I carry the health insurance for my whole family. I haven't told my boss that I am ill and trying to keep up with everything is a challenge. Definitely experiencing I don't have the energy to be my old "super-woman, do everything self." Some days I just want to do nothing.

I hope you are feeling better soon . . .
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