Two things in particular sustain me: natural beauty and friends.
Photo: LifeLoveLyme
For a long time now, I’ve been in a place where viewing the lives of friends through the window of Facebook is incredibly painful. What’s wrong with me? Why can’t I just enjoy the happy happenings of others instead of being overcome by my own piercing grief, frustration, and regret?
I checked my page today and saw a lot of posts from folks, many of whom I have not seen since I got sick. They’re experiencing all kinds of major life events. Meanwhile I’m facing major limitations.
An old friend posted a family photo from the college graduation of his firstborn, a young woman I have known since she arrived in the world the same summer as my daughter. I feel nostalgic for those faraway days of new parenthood when my whole life was ahead of me. And I feel saddened by how much Lyme held me back from planning for and fully enjoying my own daughter’s recent graduation 21 years later.
Then there was the photo of an a new baby I haven’t met because I wasn’t at work when his mom returned from maternity leave. And there was news that a colleague married his college sweetheart; I’m not at work to congratulate him in person, though I think of him fondly.
Here’s a question that comes to mind looking at Facebook today: When you are out on disability, are these people still your colleagues? Are they former colleagues? I definitely feel like I am in limbo here.
Everyday posts hurt, too: A friend who comments she’s ecstatic to run three miles, when I haven’t been able to work out in two-plus years. A cute photo of the gals from the neighborhood who went to the pool over the holiday weekend while I was at home collapsed, too sick to move.
I’m embarrassed to admit that these posts about others having fun and enjoying life bother me so much. I know I’m having a pity fest. But I hate not being able to 99 percent of the things I used to do.
I’m tired of pushing through Lyme symptoms to do a few things, then spending the rest of my time lying down and feeling worse from the effort. I’m supremely frustrated that even writing short blog posts is difficult for me, while others I know are packing in tons of productive things every single day.
Consequently, I don’t check my Facebook page much any more. And I’ve withdrawn from asking friends to stop by and visit. But I have to say, that doesn’t feel like me, protecting myself by withdrawing.
On the worst days, thinking about life before Lyme, I completely lose my sense of self. Or, of the self I used to be. I was always the person in the midst of everything.
Sadly, over these past three years I haven’t gotten much better at handling these negative feelings, even though I know they are dragging me down, even though I know the stress is likely harming my immune system and actually impeding my recovery.
So today I’m renewing my promise to myself to take joy in the lives of others instead of focusing on my own losses and limitations. I’m turning off my computer and making some calls to request in-person visits. Virtual friends have their place, but right now I don’t want Facebook. I need face time.
If you can relate, please share.
Tagged: depression, Facebook, friends, frustration, grief, isolation, lyme disease
LifeLoveLyme 
I feel your heartache. Have you treated babesia? The depression cloud lifted and the exhaustion is almost gone for me with babesia treatment.
On Tue, May 28, 2013 at 11:58 AM, LifeLoveLyme
Yup, treatment is targeting my babesia at this very moment, and I’m looking forward to the exit of this parasite from my red blood cells! I would love to have reliable energy; I feel hopeful hearing you are doing well.
You described my feelings exactly! I have a hard time looking at facebook and seeing all of the fun things people are doing – playing with their kids, going to the pool, etc. while I’m just trying to get through each day and don’t even know if I’ll be able to run an errand on any given day. This is going to sound mean, but some of the posts seem so trivial to me now also. It’s hard, but I look forward to one day when I can join in those activities. Be kind to yourself; you are doing the best you can. Enjoy some face-to-face time with your friends!
I’m so glad someone else gets it. You aren’t mean, and neither am I. We’re just struggling with envy because lyme limits us so much. So we have to redouble our efforts to stay positive and stay the course to wellness. We can do this!
Thank you for this post it is so so so nice to know that there is someone else out there – it is too hard to explain this jealousy of life to ‘normal’ people
I appreciate this post so much! Thank you because it’s liberating to know that what I’m going through is not unique. Of course, I wish nobody else was going through this, and I’m so sorry that you are. But in so many ways we feel alone, and knowing that we aren’t the only ones is so helpful.
Thank you for posting this! I struggle with depression a lot. I have become very withdrawn because I don’t feel up to socializing. Face book has actually helped me to keep in touch with people and feel connected to the outside world. Seeing people face to face is hard because I feel like such a downer. I don’t like bringing people down. I like to encourage and uplift people so if I’m feeling bad, I just stay home. I don’t want people to come to my house because then I feel the need to entertain them and talk for a long time. That is too draining for me. I sound terrible, I know! But, that’s where I am right now.
I’ve definitely been where you are, and of course Facebook can be positive for us. Not to mention the Internet in general — my laptop has been my best friend! But when you are ready, try telling friends your time limit when they visit and that you won’t be doing the Martha Stewart thing and serving refreshments! I even leave the door unlocked on the worst days if I am expecting a friend so they can let themselves in. Saves getting up! Company can be a real morale booster. I’m sure you asked your doctor about depression meds, which can be really helpful when dealing with lyme.
This is exactly what I have been feeling and felt guilty for thinking it!
Thank you,thank you, thank you!!!!
You described it perfectly!
I also thank you for well-expressed thoughts that I struggle with and try not to think badly of myself for feeling this way. But on occasion, it just becomes too much and I have to give in and just allow them. I have no Dr. but I do have Babesia and do not know how to eradicate the parasites. Mepron is not doing the job. Hopefully, you have something that is working for you. Anyway, just wanted to let you know how very much I appreciate your blog and to thank you for expressing what some of us apparently find too difficult to ‘think out loud’ with, and I hope you continue.
Thanks so much for your kind words. I tried for a while to be sunny and positive every day, but then found that I, too, have to just feel those other feelings. I’n no doctor, but there are other options if you are certain you have babesia. Are you in an area with no Lyme Literate doctors who know how to deal with confections? Perhaps you’ll need to travel to get a consult. Good luck to you –
I appreciate your answer. My problem is simply I live in the Sierra Foothills and am too ill to travel in order to find an LLMD. I have scoured the net, made many phone calls all resulting in hitting the proverbial brick wall. Yes, I have Babesia, have been tested through Igenex three times. The most recent was the first of this month. A Dr. did prescribe Mepron (at my insistance) but it is doing very little. I was bitten last August. And so, I live with it because I’ve tried everything and am becoming more ill. I do thank you for your suggestion and I do, very much, enjoy your posts.
today my friends went kayaking while I sat in the sun on a chair and rested with my feet up. I enjoyed it but there was a pain in watching them out there on the water. We all had a picnic afterward so I engaged with that, but yes, watching them kayak is similar to watching people on facebook. Though remember Facebook can be annoying even to regular (non-Lyme/CI) folks because there are so many repeat posters going “look at me and how great my life is” when really it’s not all that interesting.
Of course, it still stinks to see photos of people out jet skiing when you have to nap for four hours every saturday and sunday sunny afternoon.
(PS this is Christina from group) = ) I just comment from my Onely account.
What a coincidence, Christina — I was in a chair on a beach watching water activities myself this weekend and having similar thoughts. On one hand, I was grateful. There was a time when most any day I would have been too immobilized by pain to even walk onto the beach from the parking lot, never mind enjoy the breeze, the vista of sand and shore…On the other hand, now that I’m having some better days, I’m frustrated not to be all the way better.
Meantime, I’m so glad I have this space here for support. It helps to know I’m not the only one feeling this way here on life’s sidelines. Thanks for writing – we’re going to leave off being spectators and get back to kayaking before too long, I can feel it.
It’s funny I just recently “ranted” on my post A Down Day about this exact thing, the happiness of others can be hard to bear
I thank you for sharing. I feel the same way. After 10 plus years of illness in my late twenties – to mid thirties, I’ve missed out on finding a partner, getting married, having children, getting a career, and have lost the ability to do most of the things i once enjoyed. Facebook became a torture site for me as I felt more and more rage and grief watching everyone elses lives. I couldn’t take it any more so i got off of it. I’m terribly depressed and don’t know how I’ll ever accept the losses this disease has brought.
I am so sorry for all of your losses. Unfortunately you are not alone. Please, please work through your grief with a good counselor. Don’t let Lyme take everything from you; we’ve all got to find ways to appreciate life despite so many tough limitations and losses. Know that you are not alone. We’ve all got to support each other.