Rag and Bone Blog Anniversary

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. 😉 You know who you are. I wouldn’t finally be finding acceptance and hope without your help.

Title Credit

Christmas presents!

Here are some of the gifts I received that are great for housebound people!

DVDs and books
DVDs and books!

snuggie
Snuggie!

onesie
Adult-sized onesie!

And brilliant gifts for people with temperature control issues:

gloves
Fingerless gloves!

clothes
Cozy clothes!

heating pad
Heating pad!

And for someone with a headache (I thought it would aggravate it, but it soothed it!):

head massager
Head massager!

And for a meditator:

budda

CD

lamp

And a great gift for that special someone who destroys their lips nightly because they have to wear tape over their mouth as part of the cpap ritual:

lip balm

Thank you friends and family!! You are so thoughtful and I love you! Bless us, every one!

LDN Day 28… Never came.

First of all, I feel better this afternoon. I’m even entertaining the notion of taking a walk. Friends and family, please don’t worry about me based on what you read on my blog. I am truly treating this like an online diary. It is incredibly theraputic and, even when I have no energy, I find myself wanting to put my thoughts down “on paper”. It’s the first time I’ve felt driven to write since college, so I’m enjoying enjoying it. If I’m not honest on this blog, I won’t be able to look back and see honestly how this journey progressed. PLUS, the honesty might help others out there not feel so alone. So, just know: I’m a fighter, I have hope and I will persevere regardless of what I write on here. If that changes, I promise you’ll hear from me personally. Just once in a while, when it gets really bad, I will need to be reminded of my courage and resilience ~ of the person I was and still can be. And of human resilience ~ how we can come through virtually anything.

I talked to my husband, my bffs, and my Dad. Sometimes, just being able to voice the fear and anger is all you need. As long as the person listening actually listens (which those closest to me do, thank god). That’s part of my fear and anger in all this, too, is the incredulity one has to face. “You look okay, so you just don’t feel okay?” “Sitting at home all day not working sounds awesome.” “You can’t even come for a few hours?” “Your sleep is that bad and you’ve never tried a sleeping pill?” “Just lift weights!” “What do you mean you feel ‘sick’?” It’s the reason I’m putting it all online. Those that understand might get help and support from it, those that don’t understand needn’t read it. Also, while looking for some bolstering or something, I put some of my last post on a CFS forum of which I’m a member. One person replied and said the anger never goes away, but you have to crowd it out with positive thoughts so it doesn’t poison your soul. Another said she was diagnosed when she was 32 and, if she had given up, she wouldn’t have seen her children graduate and get married and she wouldn’t know her grandchildren now. That helps. I don’t have children, but it’s helpful to know that, no, the anger doesn’t go away, but there are many more positive experiences in my future that will crowd it out (her words, perfect visual).

So, I’ll do what my therapist taught me and tell anger to take a seat.
I hear you, Mr. Anger, but you have to turn down the volume a little. I’ve got this under control. Be quiet and wait your turn, Ms. Hopelessness, I’m letting Mr. Anger talk right now.
I literally envision leading a management meeting because that is what I am used to doing. All these big personalities who think they could be running the company better, clambering to be heard, totally selfish and scared they won’t get their chance to speak their mind… And I just have to let them know, like I’ve said before:
I got this. I’ll listen to you, I’ll take you into consideration, but I’m the one running the show, so pipe down and have some faith.
It’s actually hilarious to think that that is what all my money paid for ~ the ability to talk to my different personalities and make them behave. I said to my therapist, “Great, so I’m Sybil?” and she said, “We’re all Sybil.” Ha!

Having said all that, I never took my low-dose naltrexone yesterday. I’m going to give it a break. Maybe for a week, maybe for a year, maybe for forever. Right now I need to ascertain if it is contributing to my sleep problems and possibly my mood. Maybe I’ll start the Chinese herbs, maybe I’ll do a course of antibiotics. I should probably change the name of this blog, though, if I’m discontinuing the LDN…

LDN Day 26… Kind of want to quit.

I don’t know what to do. It’s almost been a month on low-dose naltrexone. I don’t feel good. I don’t even feel better. I think it might be making me depressed, but it’s hard to tell because just the sheer length of this illness with no answers is enough to make anyone depressed. I have a headache EVERY SINGLE DAY. I wince when the dogs bark, when there’s a loud tv show, when my husband is putting dishes away… everything hurts my head. But that isn’t really out of the norm ~ just more than usual. Is the LDN causing the sleep disorder, depression and headache? How do I know? I kind of want to quit taking the birth control pill (the idea fills me with terror) and the LDN. Then… what? Go down the benzodiazepine and opiate rabbit hole? That scares me more than anything.

I’ve had 6 crappy hours sleep each of the last 3 nights. My muscles hurt so badly. My temperature is a roller coaster ~ 97.2 to 99.7 degrees and back again within an hour. I think I’ll get my thyroid levels checked today just in case, although, they are always fine. I’m meeting my old bosses today and I have no idea what I’m going to say. I guess I just want to know if I’d ever be welcome back in a different position if I kicked this… What if I can never work again? My god, I can barely think about it. Maybe what I should be doing is planning a new career that allows me to work from home. I can work when I can work. Laura Hillenbrand did it. Maybe I should just start writing a book and hope it makes money. Ha.

LDN Day 24… 9/11

Today was a good and bad day. Bad in that I feel like I am premenstrual even though I don’t get periods. I’ve been very emotional, everything is making me cry and I want to eat nothing but sugar. On the good side, I had lunch with friends, which was sorely needed — I was starting to feel like I was useless in this world. What’s my special purpose?!

I also went for a half hour walk in the cemetery with my first-born son (dog) and it was so peaceful and also sorely needed — every time I cry, even if it’s just a sniffle, he has to wrap his 110lb body around me and nose my face to try to protect me and cheer me up. He needed some calm Momma time.

Then I did three mini-meditations: one while I was using my physical therapy neck-stretcher thing, a traditional sitting meditation, and standing breathwork with stretches. Any stretching that doesn’t pull a muscle is an accomplishment.

The best part is that, after a long talkative lunch and a walk, I feel okay. I only got 6.5 fretful hours sleep last night and I haven’t had a nap today, so I am ecstatic that I’m not completely slurry and jellied on the couch or feeling fluish in bed. Hallelujah. I did just take a tylenol, so that could be helping. Maybe my muscles won’t be diseased tomorrow… Maybe I’ll be mobile and not in too much pain… Maybe.

I am going to take a melatonin tonight (which I didn’t last night). My doctor even confirmed via email that there was no problem taking both LDN and melatonin before bed.

Finally, I’m grateful for the good healthcare workers and emergency responders. Thank you to the dedicated, caring, patient, thorough, communicative, available, informed, and informative NDs, MDs, RNs, DDSs, PAs, PTs, MTs, LMFTs, RDs, and acupuncturists (whatever letters they have after their names!). Thank you to the EMTs and firefighters that have saved my life on the multiple occasions when we have dialed 911 or 999… And those, along with the police and average citizens, that saved–or tried to save–all the injured and dying people on this day 11 years ago.