completely overwhelmed

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Regular Member

Date Joined Apr 2008
Total Posts : 37
   Posted 11/15/2008 12:46 PM (GMT -6)   
Hi everyone
I've been having a reallly hard time coping lately and I wonder how all of you do it. I just cannot wrap my head around what is happening to me. I've rarely gotten a cold much less anything this serious and I can't deal.
I've been sick now for over a year but just diagnosed in July. I may be a little bit better, but not much. I'm seeing a LLMD, but he doesn't give me any kind of encouragement. It feels so dire. I'm trying to figure out how long I've really had this because I don't remember ever being bitten or had any obvious signs of the disease.
Even now my symptoms seem different than anyone elses and I wonder if I really have lyme or some other sickness. I had an Igenex test come up positive, but CDC neg. My co-infections were neg but now l'm being treated for babesia anyway.
I feel like I have lost my whole personality. I don't  want to move...just sit. Mornings are awful because I don't want to get up to just sit around and waste another day. Now I have Celiac disease so I can't eat like I used to ever again, not to mention the cost and inconvenience. I look like I've been run over by a mack truck.
sorry to complain...I just don't know how to go on. It sounds like I'm going to be sick forever. I know everyone says that people who recover don't come back to post..but are there that many people who do recover???  If people would say "yeah, you'll get better.." I'd have something to go on. Even cancer patients get some kind of percentage on their chances.
I really don't know how to calm  down. I can't be disabled from this, too much depends on me. The fear and the massive change are taking over and I really don't want to do this anymore. My life has been taken from me virtually overnite...and I don't even have the energy to fight it. I know I'm not the only one suffering and I hate to complain. I'm just so far from who I was just a little while ago and I really don't know how to do it anymore.
It's just too much. How do you all do it? I can't.

Veteran Member

Date Joined Aug 2007
Total Posts : 4415
   Posted 11/15/2008 1:32 PM (GMT -6)   
Yes you can do this. There is always reason to hope. You have not been diagnosed with anything terminal, and now that you know about the Celiac disease, you can even reduce your chance of getting lymphoma with the gluten-free diet. You may be going through some stuff related to being new to a Celiac diagnosis and gluten-free eating (gluten detoxing), in addition to the herxing and detoxing from Lyme & Babs treatment. Yes, it can be overwhelming, that's why its so good that you came here to look for support. Some things that can help (just try one thing at a time, don't try to do all of this at once):

* Find something you can do to distract yourself from "down" thoughts - like reading joke/comic books, watching comedy tv/movies, etc. I like to watch the Tonight Show monologues and headlines (can be viewed online at MSN's website at your convenience). Laughter is a great way to lift your spirits - it produces natural endorphins, which can help with pain relief and they also have antidepressive qualities.
* Make an appointment with a counselor. It is not a sign of weakness to acknowledge that you need help - it is a sign of wisdom.
* Try to do something fun at least once in a while (once a week would be great but do what you can) - hopefully with close friends or family. Can be something simple like just inviting them over for a game, or movie, or just to chat, or help you experiment with gluten-free recipes.
* Gentle exercise can help too - some find great help from things like stretching, or yoga, or tai chi, etc. (do this to tolerance, don't overdo) And if you can do aerobic exercise, that is great because it will help you heal - but don't overdo it.
* Keep coming here to HW - this is a great support group.
* Schedule time (preferrably daily) just for yourself, to take care of you. Doesn't have to be anything long (5 minutes is fine if that's all you have). Whether it is time for a nap, a shower/bath soak, an appointment to get a facial or a manicure, time for prayer or meditation, whatever - just find something that gives you a chance to reconnect with who you are and restore your sense of balance within yourself.

Here's a funny to get you started ;)

Did you hear about the two ultra competative building contractors? Word is they like to have stairing contests.

I hope this helps...take care,
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).

Veteran Member

Date Joined Sep 2008
Total Posts : 1120
   Posted 11/15/2008 1:49 PM (GMT -6)   
2long4this: I read you post and all I can do is cry, I  HEAR you...feeling the same way myself, just know you are NOT alone...D

Regular Member

Date Joined Apr 2008
Total Posts : 37
   Posted 11/15/2008 2:44 PM (GMT -6)   

thanks Razzle and Dowa

My main problem is I can't concentrate on anything. It's like the joy is sapped from my life. Everything I loved and brought me happiness has been taken.

This is so unlike me. I feel like crawling up in a ball and letting nature take it's course.

I can't afford a counselor right now because I'm broke due to the medical expenses.

Moving around makes me feel sicker and weaker. I don't know what to do. Being so out of it is driving me crazy.

What's the sense of sticking it  out if you just stay sick. I know I sound pathetic. So many people suffer with all kinds of illnesses. I just wish I had my brain and motivation back so I could keep moving.

Is it more likely that I'll be really sick with this forever?

Thanks again...I'm just really having a hard time.

P.S. Razzle...thanks  for the joke!

Veteran Member

Date Joined Aug 2007
Total Posts : 4415
   Posted 11/15/2008 4:03 PM (GMT -6)   
"What's the sense of sticking it out if you just stay sick."

Nobody knows what treatment will do ahead of time. Why pass up the opportunity to get well? It's not likely to happen if you give up, but if you stick with it, then there is always the possibility that you will get well.

Write in a notebook or on your computer daily or as often as you are able. A journal may help you track your progress and see improvements over time that would be missed without such tracking.

Also, find something to write in your journal about which you are thankful. Can you still laugh? This is something to be thankful for. Can you taste the flavors of foods you eat? This is something to be thankful for. Can you hear? This is something to be thankful for. Can you see? This is something to be thankful for. Is the sunshine out today? Be thankful. Is it raining? Be thankful for this too. etc.

Another giggle:
Did you hear about the guy who caught a record-breaking size salmon with a skunk? They say the fish fell for it hook, line, & stinker!

Take care,
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).

J. Clark Nicholson
New Member

Date Joined Nov 2008
Total Posts : 18
   Posted 11/15/2008 7:42 PM (GMT -6)   

Hey 2Long,

Yes, I know how you feel. I often feel this way. I was an avid hiker, an actor, a theatre founder. My small company is completely dependent on me as is my wife(co-founder and business partner) and my 12 year old daughter. I have made the last 2 decades of my life about establishing and maintaining this theatre. To me, in a large way it is "me". And now I only go into work a couple of times a week. It is under great strain without me at the helm, great strain. Those who have been my allies in creating this theatre over the years may want me to step down. Or, I may not step down, and do it damage by continuing to keep a job that I no longer am able to effectively work. The whole enterprise may break, and all that my wife and I have worked on for all of our adult lives will be gone.  So..... I know. I know. I know where you are coming from.

But here is what I will tell you: going on is worth it. It is worth it because life strives to live. The things inside you that are trying to defeat you MUST NOT get your permission to win. It is your body, your life, your time. You can get down. We all get down. I get down every day. You could as easily write this letter to me as I am writing it to you. And in a sense, I suppose I am writing it to me. But I am also writing it to us all because if there is one thing that this cruel illness has given me, it is a respect and a love for all who shoulder this burden. Every day is hard. It is hard. Those who don't have it will never know. And some of us have it much harder than others. But even the days of our pain are OUR days. OUR days, not lyme's days. And I know Lyme steals joy. I have always loved to read. I am surrounded by thousands of books in my house and I have not been able to read more than about 3 pages in a day in the last half year. That is hell. But I WILL read them. I WILL READ them again. And I will walk on my beloved mountains again. I WILL. This is my life. It is not Borrelia's life. IT IS MINE.

And yours is yours. It is natural to become tired and fearful. I am tired and fearful every day. But if you will help to pick me up when I am not as strong, then I will try to do the same for you. If you have had this much longer than me, will you show me how to keep going when I have had it as long as you? I will need that help when you can give it. These days are too long and too short for me. I want my life back when I am most tired of living like this. I need all of the help I can get. I think that we all do.

You will find comfort, I believe. You will find peace. And you will do it in your life. I am so glad that you were brave enough to tell others of your concerns. Often I think we keep these things to ourselves in the mistaken belief that this is bravery. This may be just an example  of ourselves trying to hide our greater burdens even from ourselves. This is not bravery. But you have said what your concerns are. You have defined your fears. Now that you have defined them you can see what they are and work to not let them define you. You are not Lyme, friend whom I have never met. The person that you were is still in there. I promise.  Will you assure me of this same thing when I need it? You will, I'm sure because you know what it means to love life. You would not have written such a heartfelt letter if you didn't love your life.

We all get the same thing: We get our lifetime. And that is all that we get. We must work to keep what is ours.

I will keep you close in my thoughts. Feel better. That will make me feel better.



Veteran Member

Date Joined Sep 2007
Total Posts : 2017
   Posted 11/15/2008 10:59 PM (GMT -6)   
All of us (and only us) with Lyme disease can relate to all of this. Just take it as an affirmation that your illness is real and can be treated. I spent the first 2 or 3 years balled up on the bathroom floor almost everynight just thinking I was literally one step away (one moment away) from crossing that thin lyme green line into death or insanity. There were many times when all I wanted was to be left alone in an empty room with only a bed... someone could slide my 3 squares under the door each day. I was just so insanely unprepared for completely losing my life.

I've said a lot of this before, so forgive the repeat if you've heard it: I was newly married (less than 1 & 1/2 years), had a GREAT job working part-time mostly from home and making tons of $$$$ (well, for me it was tons... actually, I was a Thousandaire!!!!!!!!!!!!), had a new condo, a new car, financial security.... on my way to just being a fantastic artist and the coolest trophy bride in South Tampa.... I had been to Europe and was ready to see the rest of the world... every dream I ever had was coming true. I loved my life.... and then came that day in June 2000... I could barely move, the depression, fatigue, knee pain, then hip pain, then sensory overload, then confusion, memory loss... and my life hasn't been the same since. This is NOT the real me. I want ME back.... I was finally beginning to really like myself.... and then everything was gone, overnight.

How can any doctor think that this is "all in my (our) head???????"
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - 
"How much more can I take?", song

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