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

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Each man’s life touches so many other lives.

I have survived Christmas and I don’t feel terrible ~ as terrible as I could. My sister, her boyfriend and their puppy came over for 3 nights. 4 people, 3 dogs, 3 nights. And it was lovely. I’d tried so hard to rest and save my energy before they came, but I was still hurting every evening.¬†Unfortunately, Christmas Eve was the worst for me. It is our main celebration day and I had gone to bed with a crushing headache on Christmas Eve Eve, which lasted into the morning and all through the night. Typically, I am “okay” until about 5pm. That’s when everything starts to hurt and the headache kicks into high gear. I always go to bed around 9pm. I tried so hard to prolong our Eve, but only made it until 10pm. I have no idea how I looked to everyone on the outside, but, on the inside, I was struggling. The pain in my neck and head was about a 7 out of 10. That’s high. 9 out of 10 and I might be heading to the ER. I couldn’t see: I literally could not focus. Everything and everyone in the room were soft blobs. I couldn’t look at lights: that’s nothing new, but it was heightened. All of our lamps are on dimmers except one which was situated kind of behind my sister’s boyfriend. As we talked, I had to hold up my hands to frame his face with my fingers, blocking out any light around him in order to make out his features. And I kept thinking, Ask him to turn off that lamp, but my brain wouldn’t make that leap. It was easier to block out the light than to try to find the word lamp. This seems to be my version of brain fog. I’m not sure how this symptom affects others, but, at a certain stage, I can’t talk. Well, I can talk, but it is SO difficult. It takes so long to string a sentence together, it simply isn’t worth it. Especially in company because other people aren’t used to waiting while I try to find the words and, if I am talking quietly and get talked over, it’s too much effort to say it again. This isn’t one of the worst symptoms at all, but it might be one of the most frustrating for someone who enjoys quick-witted banter and a good debate and interjecting and laughter… My husband knows by now to not walk away as I’m saying something because it’s difficult for me to turn up the volume. He tries not to talk over me¬†because¬†he knows it’s an effort to say it once, let alone twice. This is much, much worse in the evening. If you want to have a normal conversation with me, have it between 10am and 5pm.

The headaches and accompanying noise sensitivity are by far my most debilitating symptom the last few months. The muscle pain, IBS, stiffness, exhaustion, brain fog, tight chest, flu symptoms and awful sleep ~ I’m used to all of it and it’s all bearable to a certain extent. But, the headaches… there are no words to describe how crippling they are. Every movement makes my brain slam against the inside of my cranium. Touching the base of my skull or the back of my neck feels like it should be bruised black and blue. It is so tender, stretched taut and soft at the same time. Every noise feels like a gun being shot next to my ear and threatens to reduce me to tears or send me to bed: the dogs barking, the opening of cans, my husband putting the foot rest of his recliner down, the bathroom fans, the squeaky dog toys, my phone alerts (which is why it is usually muted and I don’t answer), the kitchen timer going off… But the worst is the TV. We have a TV that supposedly keeps the dialog loud while subduing the action noise. It doesn’t work. If it’s loud enough to hear Harry Bailey say “A toast to my big brother, George, the richest man in town”, it is inevitably too loud as soon as they cheer and start singing Auld Lang Syne. And forget about modern movies. I have been looking forward to watching The Dark Knight Rises since our last failed attempt at going to a cinema (will I EVER be able to again?), but I am so scared of the action, the noise, the bright lights and the length (almost 3 hours). We have to start very early and shoot for a day when my headache isn’t as bad… I miss going to the pictures (as we used to say in the homeland) almost as much as I miss working or going to the dog park. Remember the THX sound at the beginning of movies? I used to turn that up as loud as it could go… surround sound in your own home! It was heaven. Now, I wince just thinking about it.

What I know for sure is sleep dictates how I will feel. Not enough hours or too many times woken up or, god forbid, night sweats and I am not going to be a functioning human being the next day. That’s why I’m scared of starting the Cymbalta. If it makes me sleepless for a few weeks, I could be set back for months. Low-dose naltrexone disrupted my sleep for almost a month and, the day I stopped LDN, was basically the same day I stopped driving, running errands, going for walks etc. That was over 3 months ago. But I will try Cymbalta~ I have to do something for the pain.

St. Stephen’s Day moment of gratitude: I got to celebrate Christmas! I got to have lovely meals and open presents and chat with family and watch movies (with my ears plugged) and enjoy Christmas music and laugh at the dogs playing… It was wonderful. Spending quality time with my sister was priceless and today I’m not in bed, crying in pain: I’m awake, happy, warm, fuzzy and grateful. I love Christmas and it actually happened. I made it! We celebrated!

No man [or woman] is a failure who has friends.

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.

LDN Day 23… Do I keep going with the LDN?

Like I said, I debated for a while about whether I would be honest in this blog about just how bad it gets. I’m trying to chronicle the good times, the hopeful times, the funny times, as well as the bad times. And I’m still kind of holding back on the bad times because I’m towing the line between diary and public entertainment. I don’t want to depress or scare the readers that know me, but I also don’t want to misrepresent what this illness does to me.

Last night, I skipped all of the supplements after lunch. I skipped food, too. I just went to bed and felt crappy until about 11pm and then tried to sleep. I did take the LDN. I did some more research online and there are so many people saying, “Stick with it! The side effects go away, it gets better.”

My night was awful. I woke up with what I thought for a split second was paralysis in my left leg. Once I rolled over and the tingling started, I realised it was just total and complete bloodlessness. Then I woke up again with absolutely no blood in both my hands. It was the oddest feeling; I could not move the fingers at all. I sat up and shook them for minutes and went back to sleep. I woke up twice from the crippling headache that had struck around 6pm the previous night. I woke up at 1:30am shaking and trembling so much that I got up and checked my blood sugar (it was fine) and then decided to take 1mg of melatonin. This is a big deal for me. I have a fear of combining drugs ~ even “benign” ones like melatonin. I think I’ve only taken 1mg once in the past and it was split into two doses and I wasn’t taking LDN at the time. I like to be able to “monitor” what drugs do to me, so drugs taken at night are the worst. Well, the rest of the night was like something out of “Jacob’s Ladder”. I want to do the overnight sleep study just so someone can tell me what is going on with me in the night. Every time I woke, I was in a different place in the bed, using a different pillow, in a different position, head tweaked a different direction, jaw clamped down painfully. Every time I woke, I was either too cold or burning so hot that I would take my temperature, unable to believe I wasn’t dangerously feverish (never above 99.7 degrees). I had night sweats again. I had nightmarish, vivid dreams. In all of them I was sick and drugged. I kept going into lucid dreaming, where I consciously knew I was asleep and wanted to wake up, but couldn’t ~ I was too drugged, too sick. It doesn’t help that I’m reading those Girl With the Dragon Tattoo books, so all my dreaming imagery is pretty gruesome. I’ll probably have to put those books away for a while ~ until my subconscious isn’t such a lunatic. I have spent 4 months meditating and relaxing ~ my conscious self doesn’t feel that tortured ~ so is this the id rearing its ugly head at night? Freud, you there?

This morning, I’m okay. I feel like I’ve been put through the wars and I’m eating Tylenol for breakfast, but I’m okay. I only got about 4 or 5 hours sleep and tonight I think I might try the melatonin again. It’s either that or stop taking the low-dose naltrexone. Or start taking it during the day. I don’t really want to do the daytime LDN. I feel like, if I’m gonna do it, I should do it when I’m meant to do it for the best result. And, if I stop taking it… well, it’s like the one-armed bandits in Vegas: maybe this time will be the winner. Maybe this day will be the day the good kicks in.

I really will get to the laundry today.

Today’s Moment of Gratitude: NATURE: for the colours, smells, sizes, variations, animals, majesty, resilience, inspiration, and freedom… even gratitude for the bugs –the ones inside me. Little fuckers.

LDN Day 22…God is music.

I knew I should have posted something last night while I was feeling good… Yes, I dared to say¬†good. I was dizzy and my neck hurt and my nose and eyes were driving me nuts blah blah blah, but, there was this moment at the dog park where I caught myself almost skipping, looking at the sunlight and glimpses of blue sky coming through the trees, humming along to music on my headphones, and SMILING. I felt normal. I felt joy. I felt hope. I thought, for the thousandth time,¬†Maybe things have shifted. Maybe this is the beginning of the end of my affliction. Maybe I’ll be able to get up tomorrow and write, “I’m getting better, I slept well, I have hope for a future and career.¬†Hooray¬†for LDN and supplements and…life!”

Well, I’m not feeling so great this morning, of course. I actually had night sweats last night for the first time in weeks. After 10 hours in bed, my Zeo tells me I got exactly 6 hours sleep. I woke up with a bad headache, my muscles hurt, I’m really grumpy and I am the farthest thing from refreshed, but I have this leftover glow from yesterday. It’s like waking up with a really bad hangover, but knowing that you spent the night drinking with a wonderful guy and can’t wait to do it again.

I pray that this upward trajectory continues. I have to stop therapy because of money concerns and my insurance on massage therapy has run out. The low-dose naltrexone is $60/month (not covered by insurance, of course) and I want to be able to afford it for a while longer.¬†I still haven’t finished the laundry I vowed to complete days ago ~ that¬†will¬†happen today ~ but I tidied the house and made oat bars yesterday (details on my next diet post), so those small things make me feel accomplished.

My husband went to a wedding yesterday without me. It wound up being a huge reunion of his late father’s family. I would have loved to have gone and met everyone. I feel like a ghost, like a figment of his¬†imagination. I spent so many years pouring myself into work and now, when I have the time to pour myself into friends and family, I’m physically unable to participate. Cruel joke.¬†Dear Friends and Family: I am participating from afar. I look at every picture, I read every email, I look at all Facebook posts, I cherish every piece of mail. If I don’t reply enough or call enough or show up enough, please know that YOU are the most important thing to me. You all keep me going, keep me hopeful, keep me grateful and compassionate, and allow me to meditate on what is truly important.

Finally, I am grateful for music. This year, whenever I have found myself lost in some good feeling,¬†inevitably, I have my headphones on…

As the great Kurt Vonnegut said:

If I should ever die, God forbid, let this be my epitaph:
The only proof he needed for the existence of God was music.