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PLEASE don't feel alone!!!

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Posted 9/29/2015 4:34 PM (GMT 0)
Hello everyone!! I have noticed that, like myself at times, people feel alone in this battle to get better. I have lost a few very close people due to their inability to understand that sometimes my symptoms make it impossible for me to do the things I used to. The days I feel mentally alone or misunderstood are the days that my physical health then plummets. I do believe that mental health plays a part in physical health. I am still new to being diagnosed, but have been sick for 4 years, so I can not offer support on here when it comes to the medical side of lyme. I started a private Google group just for a place to go and vent, laugh, cry, whatever!!! I would like to get to know people on more of a personal level and build friendships {did that sound creepy??? I swear I am not a weirdo!!! Lol} during and after this long battle ahead. If anyone wants to join just email me and let me know. Right now there is 1 member in the group .... Me! Hahahaha
Posted 9/29/2015 10:53 PM (GMT 0)
Hi PixieDust,

That's so sweet of you to start a group for people who are alone or just feel alone... I know how alone I felt when I was sick with chronic lyme.. I hope many people join your group!

Best to you!
Denise
Posted 9/30/2015 7:40 PM (GMT 0)
Pixie, you are as adorable as your name. I am so very sorry you lost people close to you. That sucks for sure. My husband, Toby, and I don't feel alone (there are 7 people in our house at this time and we have had as many as 8 living with us) so we don't ever feel alone. LOL With his diagnosis of ALS, people outside of our household are very supportive since they don't really recognize Lyme being his illness. However, I am open to connecting with anyone who needs someone to talk or write to. ((Hugs))
Posted 9/30/2015 8:09 PM (GMT 0)
I feel alone, and most often I AM quite literally alone...My only daughter off-n-married, my husband travels out of the country ALOT! My 30yr old Asbergers son lives w/us & I want so badly for Him to get tests done. I can't talk with Him too much about myself, due to I need to help him!!!

After I started treatment in June of 2014, I ceased serving/volunteering at my church and I felt that with my absence, no-one even noticed. I was depressed for this entire past year as my in-laws, my mother, and sister who also has LYME just wasn't there for me. My 'Lyme' sister who doesn't live near me, only responds to my medical questions, but not much help emotionally due to her apathy. She doesn't talk like I do tho.

Oh wait....this is the reason for your blog right-LOL!!!

Great idea and thanks!
Posted 10/1/2015 5:28 PM (GMT 0)
Awwww!! Thank you all for your kind words!!! They really touched my heart! yeah I am SO HAPPY to say that 1 person has now joined!! ANY and EVERYONE is welcomed to join!! Strength in numbers right?!?! Anyone that wants to join just click my name and send me an email and I will add you to the group. Because I want people to be able to speak freely I have made the group private so that's the reason why I have to add you to it. I am beyond happy someone has joined and hope many more join us!! yeah tongue yeah tongue turn
Posted 10/1/2015 6:04 PM (GMT 0)
Hi Pixiedust,
I just sent you an email. I am very much alone in this fight. I am a recent diagnosis just a month after being diagnosed with Fobromyalgia (I think I got that diagnosis just because they didn't know what else to do) Now that I have this diagnosis everyone just goes. Oh, that's too bad and that's it. When I was in question with all my health issues for years and years, people rallied behind me and were so worried about me, and now that I have lyme, they just sort of disappear. This illness, unless you really educate yourself on it, is highly under rated in the society. It is thought of as a cold I swear. And I am too exhausted and sick to even try and explain it any more.

And Sweetpeaisme. I too have an aspi daughter. She is 13 and I did have her tested as well as a boat load of other neuro testing, because she is to say the least quite complex. However, it makes me wonder if I gave her lyme in utero as my LLMD has told me that I have had lyme for a very long time, but it just sort of sat at bay in my system until I had a major cervical spine surgery just over a year ago. And every since then, I have gone down hill very fast with my health. So yes, thank you for forming this group. It will be a good place for me to just go and type, I am sure as I bawl, as I do that a lot. I still to this day just shake my head, wondering what the heck? Lyme? But it makes so much sense once I start educating myself on it. The hard thing is to educate the rest of my family to the degree I know it, and make them take ownership of this as well and help me! I am no longer able to do so much, yet I get pig headed and still do it, and then almost die of exhaustion afterwards. But still, they just don't get it. I swear I am on the verge of leaving my husband for his lack of care and compassion. We will chat soon I am sure Pixiedust. Thanks!

Charliebug
Posted 10/1/2015 7:58 PM (GMT 0)
I def feel alone and lost in my head so I am right there with you I think everyone just thinks I am crazy I use to be so strong but I know we are all strong because they would not last a week in our shoes......hugs
Posted 10/3/2015 12:29 PM (GMT 0)
Now I need a crash course for lyme brains in how to use the site. Ahem. Off to find thinking cap....or hit tree with branch. What can I say? Its one of those days, lol....
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