Scared...

[skarey]

Ok.. I just have to vent.  I am feeling absolutely horrible.  This may sound bad, but somedays I seriously feel like I am dying.  I know I'm not, but I feel like I am.  I am SO weak.  It is like having the worlds worst flu in terms of weakness and fatigue.  I can barely function at all.  But I drag myself out of bed each morning, when all I wish I could do is just SLEEP.  But I can't. I have two small children and a busy husband so I have no choice but to try to function as well as I can.  I see NO releif in sight.  I'm scared I'm going to feel like this forever or that it will get worse.  I'm scared that the dr's will never find the cause of my illness.

I get so frustrated cause I have always been a very busy, outgoing, fun person.  But now I'm lifeless.  I try to force myself to get out and do things no matter how hard it is.  And I end up paying for it, or getting more upset cause I find I just "can't do it".    What I wouldn't do to feel like myself again and be the energetic happy person I once was.

I feel like I am letting down my family.  I can't play with my children like I used or barely muster up the energy to even hold them.

What if?  I hate the unknown.

Thanks for listening.  

[gorbybelle]

Crash ! - what crash? - positive thinking is a must.

[JackieCalifornia]

thx gorbs :)  hope you're doing all right yourself.  Knock on wood, I've had some pretty good days this week.  A glimmer of what life once was and can be again does keep the spirits up.  Bracing for the crash now.  ;)

[gorbybelle]

great post - spot -on.

gorbs x

[skarey]

My dr. is clueless.. she doesn't really know.  I've been tested for everything.  They are thinking lyme...    I'm waiting for my Igenex results and then I'm going to see a lyme dr. to see what he thinks...

Thanks everyone for the relplies!  I appreciate it!

[cindy903]

What does your doctor say is causing this? Is it Lyme or other physical issues?

[JackieCalifornia]

Take it easy on yourself -- I was very much where you are now, wanting to be well so much that I was certain if I willed it to be, I would be well and my body would snap to attention and get it done.  Instead I think that just adds more stress on the organism (you).  Anxiety and fear on top of pain and fatigue are not a pretty thing, but that's where these maladies take us.  

You may feel that you are neglecting your children, but as long as they are safe and fed and reasonably (?) clean and they know you love them, all is well in their world.  Think about getting someone to come in once a week to do the heavy cleaning (vaccuuming, bathrooms, changing sheets and towels, laundry) that your husband doesn't have time or energy to do) ... just until you are up to it again.  A few hours a week won't cost a huge amount, and it will let you reserve your physical and mental resources for attending to your family.

Perhaps explain to your husband how you feel, and tell him that you will try not to complain, that you just want to be well so things can be like they were -- he may need to hear that from you.

Ask your friends to do grocery shopping for you -- give them a list of what your kids and husband like, and send them off.  Maybe rotate among friends so they don't have the extra work more than 1x or 2x a month.

And most of all, take yourself off the hook:  it's not your fault that you are ill, you are doing everything you can to get well, and the less you fight your body the better you and it can spend the energy where it needs to be:  fighting the bugs.  Pray, meditate, watch the sunset, take a long bath, hold your kids, whatever gives you calm and a sense of harmony and possibility.

I don't recall if you were tested for co-infections, but I had Babesiosis along with Lyme, and I was much much better after the Babesia was kicked -- the synergy with Lyme was huge, so when the Babesia was gone, the Lyme was more handle-able.  Be sure when you go back to your dr that you were tested for the gamut of co-infections.

You are NOT losing it, you are NOT crazy, your body is simply fighting off these bugs to protect you.  This may sound silly, but every night I inventory how the day went physically and try to give little pep talks to the parts of me that were suffering the most and tell them I know how hard they are fighting and to stick with it.  Like giving puppies little treats to reward them.  Whatever gets ya through.  

Your 'real' life will still be there when your body is ready for it.  It took me a while to realize that going through this mess is also part of my 'real' life, just like when you're pregnant and giving birth and recovering you don't expect yourself to keep doing everything you did before you were pregnant:  it's a phase with different demands on your body, and you just have to go with it.

Hang tough and be kind to yourself.

[patsy10]

I've been where you are so I totally understand.  I'm better now so try to keep positive.  It can get better.

[wonko]

I've read many Lyme patient testimonials that include the "feel like I'm dying" description.  I've had times where, despite being very tired, I'm afraid to go to sleep because of how awful I feel.  I've woken up in states so bizarre and symptomatic that I didn't think that I'd ever fully recover.

It is both physically and psychologically a huge demand to navigate this disease.  I think the "latest" with you is that you're still waiting for test results?  So on top of everything else, it's got to be frustrating that you still aren't treating.  (Not that treatment is easy, I got sicker than ever while on antibiotics, but at least I feel like the pain may be productive...)

Are you taking any herbal remedies or supplements at this time?  I'm of the belief that antibiotics are necessary to beat this, but that you can support your body with supplements and treat somewhat with herbals.  I started with Samento/Cat's claw before antibiotics and did see some results.  I also supplement vitamin D and B12.