A changing life

OMG I feel so bad for you. But please know that it will get better. you have been so much so make sure you pamper yourself but don't blame yourself. It is not easy but we all have challenges that we face and getting thru them make the good days even better.

Bartonella can be very hard on your nerves and anxiety. Be sure to take some deep breathing sessions (Iknow sounds crazy but got me through some pretty bad times), some naps, mind escapes like movies or reading or crafts, and healthy eating and detoxing with lemon water.

It takes much patience and positive thinking and I never thought I would get there but life takes on such new meaning when you get through such a setback like lyme.

I hope we can be of help to you. A good crying session does you well as long as you pick yourself up and move on with determination. Hope today gets better for you. Feel free to vent and message at any time.

Hi. So sorry you are going through this. Oh yes, I have felt and do feel that way. One of the most difficult things to manage for me has been the sense of loss. I gave up my teaching job, strenuous hobbies, and many friends who just didn't understand. I've lost the sense of well being, I'm tired of hurting, I'm tired of new maladies cropping up just as others subside, sometimes I'm even tired of trying to get better. With this cluster of infections, a person has every justification to cry and feel down. But I can't stay there for long because it's not productive and as long as I'm living I'm going to make my life the best I can from where I am, if not for me then for the people who love me. Wishing it was different just doesn't get me anywhere positive.

Slowly over time I've replaced teaching with substituting so I can choose what days I'm able to work, found less strenuous hobbies (substituted sewing, learning an instrument and walking for hiking, rock scrabbling, and being a gym rat), and found lyme friends and others who are more understanding. These days I go ahead and make commitments and usually I can make it. When I can't, I don't. I encourage the rest of my family to still go and when they will, I use the alone time to regroup. I've found it works best for me to proceed as if I will be well and then make adjustments if I'm not.

Every day begins with a pep talk to myself. Throughout the day there is a perpetual redirection of negative thoughts to counting my blessings. Maybe it's the Bartonella, but I tend to get stuck in negative loops of thought that seem so real when I'm thinking them; later or the next day I wonder how I ever thought that way. It's almost like an eclipse of reality. I'm learning to recognize when I'm stuck like that and I tell myself it isn't real and it will change soon. That can help. And, as much as it goes against my natural inclinations, I work to be kind to myself. Sometimes that includes crying for the loss of my health and everything that's associated with it. When I'm finished, I fix a cup of tea (drinking one now) and sit quietly focusing on something beautiful until I feel calm inside again.

I hope by now you are already exiting the bad place you've been in and are seeing the world with refreshed eyes.

Rose

It is really painful when we feel abandoned by our friends, but it really does show you who your true friends are. What helped me a lot in dealing with losing relationships was reminding myself over and over again that it isn't personal. I don't hate my old friends for not wanting to maintain the relationship - I just try to appreciate them for who and what they are and if I can mantain a casual, acquantaince-type relationship with them, great, if not - there are ALWAYS new people to meet! Who knows, maybe the universe wants you to go through a purging like this! It's no one's fault - I don't intend to be a "bad" friend, I just happen to be unable to follow through with plans. They don't mean to be bad friends either, it just is what it is.

Sometimes it all hits so hard - with so much at once, it's really hard to process it all and still feel confident that everything will be okay, and it will. You may come out of this feeling much better than you ever did before, I know that's how I feel, though it wasn't always easy! Hang in there - we're here for you!

Hi Biggs,

Your words bring back the pain I felt when I was sick...  No wonder the words that Robin Williams said to Matt Damon in the movie "Good Will Hunting" made me cry so much... "It's not your fault, it's not your fault".... 

And yes, you received very wise thoughts from the other members.  I really found out who my "real" friends were... It's nuts that cancer is "acceptable" but lyme disease is still a mystery to most people... They don't get it unless they "get it"...  I used to tell people when I was sick that I was going to find ticks and hide them in a room so people who didn't have lyme would get bit!  Of course I never did that but hey, I'm nuts!  Always was and always will be...  And you know what?  I like myself that way... I don't care what other's think....

What matters most is what I think and that I like myself...  I think that came with age...  When I was younger I DID care what others thought of me...

Anyway, my marriage broke up because of lyme.  I was not married that long and I was very much in love and I believe my husband back then was very much in love with me.  He knew me as a person who worked at least 10 hours a day, could clean the house, cook fantastic meals, and had lots of energy afterward...

When I became sick (I was undiagnosed for 5 long years), he couldn't handle it.  So he was not nice to me because he was expecting dinner on the table and that dinner stopped being there.  He expected a clean house only to find a dirty house.   He wondered where I went... I couldn't give him any answers as I didn't know what was wrong with me either..  I went from doctor to doctor to doctor...  No one could tell me anything..

We ended up fighting so much.. I couldn't take the stress (good thing we didn't have kids)..  I asked him to move out so I could have peace and quiet..  Eventually he did and later on we divorced... 

Talk about being alone... I was totally alone (my family never head of lyme either and they were NOT supportive)...  So I was grateful for my 2 doggies back then...   I finally had unconditional love...  My 2 dogs were my support system...  5 years later when I was finally diagnosed with lyme I joined a support forum..   And then I got well... 

Golly, I didn't mean to write this much... 

Biggs, hang in there... Do things alone with your husband if you feel well enough..  Read poetry to each other..  Give each other massages...  Light candles and turn off the lights and put on music... 

Things will get better... If they could get better for me which they did, they can get better for you too... 

Hugs to you,

Denise

Biggs,

The people on this forum are a life line to me and will be to you too. They understand as I do, all that you are going through. My husband too has been supportive giving up his Saturdays to drive me out of state to the Doctors. We try to make it a mellow "date" and go out to eat after the appointment. In the early days I did not talk much on those trips as I was too out of it, but it does get better. Also the abx can make you feel worse in the beginning at least that is what happened to me.

As for friends for whatever reason there were lots of weddings and showers this summer I only made one. Anyone who knew me before knows I would not miss a social gathering but now I find I have to explain myself. On the positive side my husband doesn't like those events and was happy we could not go! He is also happy I am back to being the skinny girl he fell for a long time ago...I didn't care about losing weight, it was my mind I didn't want to lose!

Anyway use this forum to vent, or email someone when you need to "chat". I and others will support you just as we were supported.

So sorry...I too grieve over the life I had..but when I get in that place...I pray and God always answer my prayers!