Tag Archives: mood

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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.

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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.

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LDN Day 20… feel awful.

I feel really crap this morning. I shouldn’t even write, it’ll just be depressing. I was quite excited going to bed. I had done three sun salutations without hurting my body or pulling a muscle and I was thrilled. I was planning on writing this morning that I had made progress! But, no. I woke up this morning after six hours sleep in the process of throwing my neck out. I woke up in one of those full-body tenses: fist and jaw clenched, arms and legs straight and hard and then my neck stretched itself in some weird sideways motion and, when I heard the snap, I was fully awake. I iced it for a half hour without even getting out of bed and now I am using my TENS unit. I’m allergic to NSAIDS and I can’t have opiates, so it’s tylenol and ice for me. Nightmare. I even took an epsom salt bath last night and tried to follow all the sleep rules. It was another terrible night and, this morning, my eyes are extremely swollen. My husband even suggested I have had a reaction to turmeric.

Who knows. I’m so over this. If I had a job, it would be difficult to show up this morning. I can’t turn my neck, I look like I’m having some puffy allergic reaction and I’m so tired, my eyesight is blurry. Really blurry. I have my first acupuncture treatment today. I don’t know if that’s a good thing or a bad thing. I’ll let you know later on.

I’m grateful for mod-cons: bathtubs and kettles and hoovers, beds and electricity and running water… Especially the last one. I’m grateful for clean drinking water, flushing toilets, and hot showers.

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Diet Day 13… Healthy junk food shopping.

I still haven’t started the vitamin A. It took forever to find one to the specifications the doctor wanted and then I had to order it online, so really the supplement program hasn’t even started in earnest and I’ve already broken the bank. Today, at the medical center, the sleep study doctor said the same thing my Dad said, “Stop wasting money on all the supplements” and, damn, they ARE expensive. $160 I spent yesterday to replenish my stock. That can’t last too long with no income.

You know what else is expensive? Food that doesn’t have dairy or wheat or anything that tastes good in it. Another $160 (coincidentally) at the grocery store today. But I was actually kind of proud I made it to the store. I hate grocery shopping. It wipes me out and all the label-reading gets me frustrated and it is SO FREEZING ALWAYS. I must have been feeling particularly vulnerable and deprived because I bought 4 bars of chocolate (all 70% cocoa with no dairy) and 2 tubs of ice cream (dairy-free, sugar-free, gluten-free, fun-free), 2 bags of chips (taro and carrot/ sweet potato, the latter which I can pick around), and 2 bags of gluten-free oats (to make granola and breakfast oat bars). I also bought some frozen fruit for smoothies and some guacamole and ….turkey bacon! I’ve never tried turkey bacon, but anything resembling bacon — even without the eggs and toast — will make me happy. It occurred to me that, since I can have oats, maybe I can have black pudding!! Oh, that would make me so happy (I don’t think most Americans understand this)… But it probably has way too much fat to justify it as a “lean meat”, eh?

It just occurred to me that I pretty much missed the vegetable aisle. Oh well. I’m pretty sick of salads. I’ve fallen into a routine of a smoothie and a bit of granola for breakfast, something salady for lunch and dinner has been fish with veg or chicken broth with veg for a homemade “soup”. My Dad made us bouillabaisse while he was here — from scratch with fresh seafood. It was fantastic! The next night we grilled a whole salmon. But, honestly, I think I’d give a limb — or at least a toe — for a baguette smothered in Brie with a burger dripping fat on the side and some popcorn for dessert.

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LDN Day 17… CFS / ME is still in charge.

Ugh. I have zero energy. Every night these last few days with my Dad visiting, I have turned into a brain-dead, drooling zombie around 8 or 9pm… To the point that I can’t carry on a conversation, I can’t focus. Brain fog is a perfect description. I take so much longer to form my thoughts that people try to finish my sentences for me. And I am too tired to try… My sister asks, “what’s the plan for tomorrow?” and I literally have difficulty understanding her question, let alone coming up with a plan. I hit a wall of fog.

My sleep streak ended. Either 6 or 7 hours the last four nights, which isn’t necessarily that bad except the nights are so difficult with pain, sweats, chills, cramps — and I WILL NOT GET BETTER without 8+ hours/ night. See the Zeo graph below — constantly awake. Between 10pm and 2am, I dipped into sleep six times for no longer than ten minutes each time.

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Yesterday, I was very dizzy in the morning. The night before, I had been a bit scared, thinking I really overdid it, regardless of my careful intentions. I was in bed, chilled to the bone, so so so cold. And felt like I had the flu, of course. The next morning, like I said, I was dizzy for hours, but felt better after a walk with my Dad.

Today, I am immobile. I pulled a muscle in my back yesterday picking up a pot of water (god forbid I try to clean the kitchen!) and that, coupled with the hangover from socialising, has left me practically bed-bound. I woke up with a wicked headache, extreme pain from the top of my left skull, down the left side of my neck, down the pulled muscle on the left side of my back and into my hip. My throat has been sore all day, eyes puffy, runny nose. Ugh. I feel awful. I visited calmly with my family for two days and I’m paying for it. Barely have the energy to type. Definitely don’t want to call anyone. It probably won’t be much better tomorrow. I need unlimited massages for free… I need unlimited funds for weekly massages. For all of you out there dealing with muscle hell, massage therapy is a godsend. It doesn’t make it worse — I know it feels like someone pressing on your back would make you shriek, but, the next day, things are so much better.

This is an evil disease with no answers, no experts, constant pain, limited mobility, constant searching, limited hope.

Almost forgot again: I am grateful for my dogs that always get a smile out of me and, no matter how bad my day is, they make it better.