Lonely

  Does anyone else out there feel completely alone in this?  I was diagnosed earlier this month and felt quite relieved that all my symptoms finally had a name.  I thought that the label would help family members understand at least in part that I am truly ill and in great need of support.  I've been sick for approxiamatley three years with extreme fatique and severe muscle spasms which at time has hindered my ability to walk.  In spite of my recent diagnosis I'm all alone.  Those who claim to care say I seem fine.  I work hard to get going each day and by early afternoon I'm usually good for nothing.  Some days are worse than others but I don't complain, although I am a single mom to a young son and struggle to take care of him on my own.  I don't feel I should have to go around looking sick or complaining to get support.  I'm becoming recentful..............please help!

Oh my goodness! You remind me of my lovely daughter. But just because she doesn't look sick many people do not believe she is sick. We do have a supportive family and a few supportive friends. However, as a whole most think she is just putting on a show or something. Others think she is lazy! This is a child who had a 4.0 in college and studying to be a pharmacist when she had to withdraw from school 2 years ago. You are not alone!
Her pain is overwhelming to me as a mother. Our main outlet is prayer. Try prayer sweetheart.. It will give you some comfort..

Thank you so much for your prompt reply stutterbug. It feels good to be understood and to know that I'm not alone. I have never joined any forum before and I was quite nervous about it. Now I'm glad I did. You are so right. I do appear healthy. Especially early in the day after I've mustard up the strength to handle whatever I can for the day. What others don't see is the extreme pain I feel after a short walk to my son's school or the endless nights I spend wishing it was daylight because I'm so uncomfortable. I don't know how you manage to keep it to yourself. I get so frustrated I end up saying something about a new symptom only to be dissappointed over the lack of concern.

Willie, I know EXACTLY how you feel. The only advice I can give you is to worry about yourself and no one else. I actually just recently stopped seeing my friends who are great they just don't want to deal with someone else's problems. They want to be happy go lucky and enjoy enjoy enjoy. SO that means they don't want to hear my tales of woe and tales of woe are plenty when you have lyme. I was sick for 4 years before being diagnosed. I was told it was anxiety, menopause, etc. but I knew something else was wrong. you need to worry about you. I have been in treatment for almost two years now but only 7 months with an LLMD. I no longer nap everyday and have many more good days than bad. I have removed alot of the stress from my life by avoiding people that would constantly say "so how are you today, you look fine, how long before you are better" blah blah blah. If you are patient, detox, think positive and understand that it will require a lifestyle change to make your life better, you will get there. I'm not saying there aren't days I get down, but overall I'm so much better than 2 years ago. You are not alone. This site was truly a lifesaver for me. Remember too to consider depression. I did go on an antidepressant and what a difference. Best of luck to you.

Hey Willo...you are so way NOT alone in this one.......I finally found the right answer to people always saying. "Oh , gee, but you look so GOOD!!" My new reply is... "that's because I am good looking."


what does being good looking have to do with not being sick ???

now my sister says to me ..... "Have you ever thought it's just you are getting OLD?"

I hang out on this forum so much because I really need to be relating and sharing and learning new things
about this situation and so much else going on out there seems not my world anymore. I need to lay down and rest.
I am laying down 95% of the time I am on this forum. That is how much resting I need.

And even though I feel alone, ESPECIALLY with my family. I am in NY with them all now and realize how very sick, angry and bitter they all are and itis TOXIC being around them.

You don't have to explain yourself to anyone either about how you are feeling. Don't strt falling int the inferior zone because your energy has dissapeared and even your eyelashes hurt. who cares what they think.

My Dad fell and broke his hip so everyone is running around to see him at the hospitol. None of them even get it that he has had lyme for over 20 yrs and that is why he is so messed up . He got 3 transfusions and is on a heart monitor. ( still all ignoring the lyme issue. even he gave up on it. he got too sick of being told it is all in his head.

Not one perosn in my family came to me while I was geting treatment in arizona for 8 weeks. Herxing my ass off. they all are mad at me for going off on them on the phone when I was really in trouble.

I can't even look at them now. Some people hav to get knocked on their butts before they can have any compassion. I get my compassion from this forum and one other person. Not my family.

Hello springsjean! You are right about going on and just taking care of myself. This is one of the lessons learned with this illness. I've always put myself last and tryed to keep everyone else happy. Now I'm focused on my health and I realize that if I don't take care of myself no else will. I too have had others ask how I feel and tell me I look good. I've also been told I'm getting old. I may not be a spring chicken but I'm only in my mid forties! It's common sense that at this age I shouldn't be feeling the way I do or having trouble walking. It's unfortanate that it took this to get me to let go of the toxic people in my life and to take better care of myself.

Roses,
You really do have to put your health first- don't think about it as putting you first, you are putting your health first, so that you can be there to take care of your family members.

Please listen to what these members are saying here. They are saying that they HAD to put their own health first as well.

If you are so ill you can't get out of bed or worse yet, in the hospital, you aren't able to help any one of your family members!

It seems to me that a bunch of us that are ill with tick-borne infections have/had a tendency to put others first, I know it was that way for me.

I realized one day that I sure couldn't "be there" for my hubby with his own health issues & his going in & out of hospitals if I couldn't get out of bed myself!!

This in no way means that I don't spoil him big time, but now we have to take turns!!

Please consider this a gentle push in the right direction - I'm concerned for you.
((((hugs))))

Oh bro-ther..can I EVER relate to "Lonely*.
I do live alone (well...I have my kitty Simon-Love) and have for 20+ years, but it is just in the last couple of years that I have felt a real sense of lonliness and even admitted it to a couple of people, whereas before, I would have NEVER admitted I was lonely or felt alone.
On top of the Bartonella & Erhlichia, I have spinal stenosis, degenerative disc & joint disease, Dercum's Disease (that's a REAL fun one), a bulging disc (and what does one DO about that???), osteoarthritis and probably *Other* diseases that just haven't come to fruition........yet.
I have lost most of my friends (and we're talking 20+ year friends, not just acquaintances), my adult kids age 38(twins) are oh SOOOOO busy with their lives because they're both career people, neither married, and I rarely hear from either, plus no one BELIEVES I have Lyme, and my one friend (know her 33 years) told me to stop sending her stuff about Lyme because no one cares that I have Lyme, and it is only if THEY or a family member has it or the same disease that they are even remotely interested. Gee.......that really lifted my spirits, Ter. But I believe it is the truth that people who aren't ill truly do not care, and that is why these forums keep me coming back to VENT....and *****.....and get on the potty pot because everyone HERE absolutely *Gets It*.
Sometimes the lonliness I feel in unbearable because I have always been such a *People* person, and yet I have gone weeks....even months without any human interaction, which we ALL need.
I have also had mental issues most of my life...and now Lyme Rage.....GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!!!!
And I can tell you most people do NOT want to be around a person with a short fuse.......or is VERY opinionated....so there went my friends....one by one.
And then I've been told fairly recently that I NEED to find a hobby and that I'm *addicted* to the computer. Well...gee....duhhhhhhhh....since ALL my friends are online, that's WHY I'm addicted :-D (sheesh) People can be really cruel even when they don't MEAN to be. Oh.....and a hobby...hmmmmm...let's see...what hobby could I do??? Mine WAS gardening....but physically I am unable to do much...a little, and I suppose there is something out there that might interest me, except the G-darn PAIN gets in the way!!!!!!!
Ahhhh....I guess y'all see my point.
Lonliness....there is a lot of that going around, I hear.

OMG Deacon I can totally relate.  I feel like I have burned all of my bridges with friends by saying stupid things that came out of left field.  I was so quiet and nice before and feel like lyme made me into a bold, arrogant nutjob.  However, I have to say that with feeling better I find myself more in control of my thoughts and have realized I haven't said as many stupid things lately.  Don't know if its the treatment or the acceptance but something is working.