I started this blog one year ago today. I never thought it would become a permanent part of my routine and something that gives me such pleasure. I started it as a daily tracker of treatment with low-dose naltrexone. The original url was ldndiary.com.
Since then, I have sacrificed most correspondence and contact (emails, cards, phone calls) and used my limited energy to write blog posts so that friends and family will all have a place to go to see how I’m doing. Of course, relationships are a two-way road and my hope is that my loved ones will continue to contact me. I will answer or pick up the phone when I can. If I can be an ear for someone or a shoulder to cry on, it makes me feel like my old self again ~ a reciprocal, functional friend.
This is a very tough line to walk for everyone involved. I’ve had friends tell me they thought I just wanted to be left alone. I am a very private person in some ways. I will lay bare my feelings, my opinions and my thoughts, always ~ I can’t be shocked or grossed out, I am rarely offended ~ but, I’m oddly private about sickness because I don’t want to accept that this happened to me. I want to believe that I am healthy and vibrant. I left my job and only told my bosses why. And I even told them half-truths. Everyone I had worked with for over 8 years didn’t really know what had happened. Eventually, I sent a select few individuals a link to my blog and said, “I’m not purposely out of contact. This is what is going on.” So, I understand completely why people didn’t contact me ~ they didn’t know and, if they did, they were trying to respect my privacy and hermit-ism.
Recently, a friend on Facebook commented on what a good book Unbroken is and I took the opportunity to comment that the author Laura Hillenbrand‘s story is as incredible as Louis Zamperini’s. I also mentioned that I was dealing with the same illness. I’ve been sick for almost 2 years and that was the first time I had said anything about ME/CFS on Facebook (and it’s not because I have thousands of friends on there ~ I’m selective; I’m only friends with people I know and like).
I don’t know if I’ll ever accept my limitations. I used to think of myself as a workhorse, a rock, an efficient multitasker. I spent my life feeling exuberant, passionate and ambitious. At work, I had huge responsibilities, I was in charge of seven restaurants and, no matter how stressful it was, I felt trusted, knowledgeable and accomplished ~ all traits that help self worth. This illness stripped me bare. Suddenly I felt weak, dependent, unattractive… Suddenly, my dreams for the future were out the window. I worked so hard to get where I was in my career and I had only just got there ~ I’d only just started to feel comfortable in my expertise and financially secure. My support network and any activities that gave me joy vanished… This on top of my new broken body.
I guess, after being sick almost two years, I’m finally coming around to the idea that it’s not a failure, not shameful. We all will grow old and health will fail. Mine just happened a little earlier and a little more abruptly. That’s what I tell myself. And I squash the voice that says No, this is worse than the majority of health problems. What do I know? I haven’t walked in anyone else’s shoes.
I think finding friends in the blogging community and making contact on ME/CFS forums has helped in ways I could have never imagined. I truly care about these people that I’ve never met face to face. I wonder how they are and I worry when they don’t write. They have made me laugh and cry. They comment on my blog and I feel like, I may be housebound, but I’m not alone. I’d never read a blog in my life until this day last year and now I am so incredibly grateful for my little circle of online friends who understand what I am going through and give me strength.
Thank you to my family for visiting, cheering me on and sending care packages to cheer me up. Thank you to the friends who call me, confide in me and tell me all the time that they’re thinking of me. And thank you to my blog family ~ my blamily. š You know who you are. I wouldn’t finally be finding acceptance and hope without your help.
Happy Anniversary! May there be many more blogs, and who knows some day in the future you will be blogging about ME in the past. Best wishes. xx
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Thank you so much! Sometimes I write the “I recovered” blog in my mind. Wouldn’t that be wonderful? If our friends were writing about hiking mountains and finding new careers? š
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Wowsers, what a brill post that would make, someday, someday… I will write about running a marathon again, and working again and imagine, being sporadic, getting up and just doing whatever the day wants. And you will write all about being back in Ireland for a trip and all that has changed… but for now, our roles are to help raise awareness of this illness and help others understand it and become more empathetic, imagine, your blog is helping patients and their loved ones cope… that could be classified as SUPERHERO! xx
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Happy Anniversary! I’m happy you decided to share your life with us. š
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Aw, ditto, Jackie! Thanks! xo
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You say it well. Happy blog anniversary, I hope writing continues to be boh an outlet and a way of keeping in contact. š
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I do, too… It’s amazing what it brings to me now. I can’t imagine not having all your blogs to read and mine to vent on! Thanks for the message š
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Your blog is beautifully written. I have laughed, cried, worried, enjoyed, been awestruck by your photos, moved by your visual efects and grateful for the effort you make to write it. I also have grown to love your blamily and miss them if they are not there. They have helped ME to accept.
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What a wonderful comment, thank you! That brought tears to my eyes (and “blamily” made me smile). Love you! xo
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Happy blogersary! You should be proud of your blog, I love reading your posts. Here’s to another year or blogging, sharing and meeting new friends!
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Thanks, H-E! It really means a lot that you like reading my blog. Sometimes, I really don’t have a clue how I come off to people.
Hope you are enjoying a proper cup of tea again! š
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Happy anniversary and thank you for describing it so aptly, I understand so well that I’m sat in my car (waiting for daughters GCSE results) with tears in my eyes because this sounds like me.
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Oh, your comment really touched me, thank you! I hope your daughter’s GCSE results were great! š
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Well she got what she needs to do a level 3 Music Diploma, but has to retake her English.
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