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When I started reading Lyme disease blogs, I found myself relating to story after story. These people could have been describing my life! I tentatively started commenting on blogs and then worked my way up to emailing my new friends and eventually finding them on Facebook.
As a result, I have made a group of Lyme friends who are the most amazing, awesome, inspiring, caring, considerate, tenacious, and funny friends that I could have ever dreamed of! These friends have all been through hell and back from Lyme disease and they are as tough as they come! We are cheerleaders for each other--celebrating triumphs, crying for each other as we stumble, and helping each other find the strength to get back up. To have friends who truly understand how hard Lyme disease is has played a very important role in my recovery.
Now that I'm functioning at a much a higher level (I'd say currently around 75% of what I used to), it's strange being on this side of the fence, thinking of myself as the "healthy" one (I'm using that term pretty loosely) compared to many of my other Lyme friends. It's hard watching my beloved new friends backslide, and it's hard watching the brand new ones just starting their treatment. It's hard watching them fight for their lives, day after day. Now I have a glimpse of what it was like for my own friends and family to helplessly watch me stay sick day after day.
I am blessed to have these new friends in my life, and I look forward to meeting other many new friends along the way. I think it's so amazing that Lyme disease opened the doors to these amazing new friendships at a point in my life when it shut nearly every other door.
I used to feel the same way about meeting people on line, but man....what a lifesaver!!! So grateful for you and the other friends I have found. My Lyme friends have been my biggest support with everything. Couldn't do it without you!!! So much love for who you are...XOXOXOX
ReplyDeleteNo one ~ and I mean NO ONE ~ completely understands the insanity we go thru each day than another Lymie. How do you desribe the Herxing feeling adequately? How do survive feeling 50% one day then 5% the next and then 30% 2 days later? After a while even the most understanding family and friends give you "the look" when you even dare open your mouth to complain. I stick to my standard answer "I'm OK" even as my head hungs over the toilet, as I'm in bed sweating out all the fluids I struggled to put into it, as I'm in chronic pain unable to even stand being hugged by my supportive husband. And the most outward sign that I am ill? Doing the 90-yr old shuffle inside my 40-yr old body whenever I am well enough to leave my house. My 6yr old niece asks me "Auntie why do you move so slow?"
ReplyDeleteSo do I feel stange reaching out to strangers online? Not anymore they are the ones who have given me the most support, the best advice and the greatest pep talks. I have been suffering with NeuroLyme Disease since October 2009 and only just began my aggressive treatment in Feb 2011.
Kathy, I love you, too! You are amazing!! (Athough, I did link you under "funny") We are SO going to take that VW Bus trip one day.
ReplyDeletePaula, thanks for commenting. Hugs from someone who "gets it." :)
Oh, I agree whole heartely with you Alyson. This is my lifeline. When our computer broke and I cried buckets feeling so disconnected from my online friends and support group....I knew how important everyone was. Being I have had lyme since 1985 and was only diagnosed in 2007 alot of damage has been done and 4 yrs of treatments have taken me through hell and back and then cancer and other issues put me back to square 1. Without the encouragement of people like you Alyson, it would be so much harder to keep fighting for my life. Amazing grace is how I describe the Lyme world of bloggers and support groups. Amazing grace.
ReplyDeleteSince I met my husband online, back when Yahoo personal ads were free, I've felt positively about meeting people online for a long time. Welcome to the club. ;)
ReplyDeleteI agree that it's fantastic for people with some kind of impairment. I actually love that I never see my students, so I never know what color, age, or even gender they are unless they have an obvious name or tell me. I feel like it lets me teach them without my native prejudices getting in the way.
I was just thinking about this the other day! I'm so happy to have met you my friend. You give me such hope. XO
ReplyDeleteLove ya!
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