Tag Archives: mood

by

LDN Day 14… What if I never get better?

Sometimes I don’t think I’ll ever get better. If I believed that 100%, I don’t think I could keep going, but sometimes — maybe 3 or 4 times each week — I am hit by the thought that this illness might actually never go away. It hits me like a freight train. What if I can never do the things I want to do again? And my desires are pretty simple. I want to be able to sit and have dinner with my father, husband, sister and her boyfriend and not feel sick. I want to be able to engage in a conversation with my family (or to laugh — imagine!) for longer than an hour without feeling like death. I want my body to not get so chilled to the bone that I can barely form sentences — when everyone else is in tshirts. I want to be able to hug people and sit near people without being afraid that they are going to get me sick(er). Is that too much to ask? Is it too much to hope that I will one day be well enough to engage in those simple pleasures? It’s not like I want to climb mountains or deep sea dive or walk the Wall of China. I just want to be able to enjoy time with those I love.

Today I took it easy all day, stored my energy up so I could visit with my Dad this evening. I sat in the sun, letting it bake me, hoping it could scorch my very bones, heat my body up enough to keep my core smoldering into the evening… I meditated, felt pretty good…. Within half an hour of visiting with my family, the chill came on, then the headache, sore throat, nose started running, chest got tight… My nightly flu. I think I lasted two hours and then abruptly left. Thank god for my husband, I wouldn’t have been able to drive. I took a hot Epsom salt bath and I feel better, more stable, but I have to go straight to bed now. And I’m sad. It makes me so sad. All the people in my immediate family — Mother, Father, Brothers, Sister — are healthy. There may be things I don’t know, but, nothing major. My Dad is going to be 70 next month — he looks great. My Mom is going to be 68 in a few months — she is more physically active than I am. I had recurrent pneumonias as an infant and asthma as a toddler and an undiagnosed thyroid problem as an adult. Is that what set me up for this nonsense? Or is it my Type A, perfectionist, workaholic, control-freak personality, coupled with a high-stress, long-houred job, coupled with the fact that I never exercised, didn’t eat too well and never slept?

Genetic predisposition + unfortunate lifestyle + poor career choice + a brain that never shuts off = Myalgic Encephalomyelitis. Lucky me.

It’s been two weeks — why isn’t the low-dose naltrexone my miracle drug?

Almost forgot: Gratitude.
I am grateful for my amazing, brilliant, witty, intelligent, savvy, caring, supportive FAMILY. Lucky me (no sarcasm this time).

by

March, 2012: 4 months sick. An excerpt from my diary.

Muscles pumped full of lead. No, heavier: Plutonium. Filled with liquid hot metal until they might burst. Heavier than anyone can imagine, aching, about to strain, buckle, seize up with the slightest movement. Ready to sprain with the slightest stretch, no tone, no strength. Climbing stairs is climbing Mount Everest.

Slurred words, room spinning, head aching, chest tightening, heart leaping, entire body shaking, vibrating. Internal tremors making me feel unstable.

Chills. Bone-chills. Shivering, unable to talk, nose going to shrivel and fall off, can’t breathe, freezing feet going to shatter into pieces, ice water running up and down my spine, head fogged over with frost, scalp taut, ears infected with cold, ice water spine, ice water spine.

Then, fever heat. Body on fire. Feet going to explode from the pooled blood, eyes burning, brain swollen. Spine and neck blistered with white-hot embers, waiting for bed to burst into flames. And the sweats come. Sweat running down my chest, pooling in my belly button. Sweat behind my knees, my lower back, above my top lip, in rivulets down the sides of my nose, my hair and the base of my skull drenched.

And I’m shaking, reaching for water. I don’t want to die. My palms are sweating and my throat is sore and I’m so thirsty, but can barely drink. I have to go to the toilet, but don’t think I can make it. I have crawled to the bathroom with concrete blocks tied to my arms and legs, while someone is spinning the room around me and zapping me with electrical current and blowing a dense fog ~ more like a smoke ~ into my ears and up my nose and down my throat, so I can’t breathe and I can’t think. It feels like what I imagine encephalitis must feel like. Meningitis. Botulism. Typhoid. Consumption. It feels malarial, paralytic, neurotoxic.

I just keep thinking, I don’t want to die.

Two hours ago, I was chatting on the phone to my mother. I was throwing a ball for my dogs. Without warning, I have to go to bed. It’s like a huge finger is pressing down on me and all I can do is go to the ground. If I try to get up, the whole hand holds me down. Huge hands holding me down so that every movement takes more energy and effort than it ever should or ever has before.

I watch someone run up stairs on tv and my eyes tear up with desire and jealousy. All I want is to be able to stand for a while, laugh without noticing because it’s not a rare occurrence, talk with friends without my throat turning into sandpaper and my back seizing up and having to go straight to bed from the exertion. All I want is to sleep. Sleep deeply. Without nightmares. And sit without pain, walk without breathlessness, feel light again, like those hands aren’t holding me down, like I could skip or twirl. All I want is strength, stamina, health. To live life without the fear of repercussions.

To live life. To not die.

by

LDN Day 13… Sleep & Sun might cure everything.

Maybe the low-dose naltrexone has helped a little… I’m still very hesitant to say that with certainty because I don’t feel much different except my nights are better and that helps everything. The good news is, I slept over 8 hours last night with no night sweats. I have never, ever had such a string of good nights. Please, universe, help me to keep this going. The only downside is my thrashing about and crazy dreams and the number of times I wake up. I feel very achy this morning, very tired, headachy and swollen. I want to feel refreshed. Does that actually happen? Do people really wake up feeling refreshed? Who?? I want to know what their job is, what their home life is like, how rich they are, how many kids they have,  how old they are… I just don’t believe it. But, if I keep up my routine, maybe one day I can let you all know that it is possible to get out of bed not in pain, not stiff, not dizzy and swollen and achy. Maybe one day I will write that book. For now, my rules are: read a book before bed ~ not an ipad, make the room very, very dark, make sure the room isn’t too cold, kick the husband out if he snores, wash the sheets weekly, and don’t do anything that might disrupt anything in the night. Everything that can cause night sweats and loss of sleep, will. That’s why I’ve been taking Miralax in the morning when I’m sure most people take it at night (by the way, it hasn’t worked yet). The less my body is doing at night, the better I sleep and the less likely I’ll have the sickly sweats. That goes for my brain, my stomach, my bowels ~ everything needs calm and quiet.

When my drenching night sweats started out of the blue last November, the first thing the doctors told me was to stop all medication. I thought it was interesting and maybe this will help someone out there. I stopped taking hydrocodone/acetaminophen for my neck, I stopped taking liquid calcium/magnesium at night, I stopped the birth control pill for almost two months, I even stopped eating gluten. Now, none of these things worked for me, but it might work for someone else. My endocrinologist said, it doesn’t matter how long you have been taking a medication, it can turn on your body at any time and it should be the first thing you eliminate if you have an odd new symptom.

I didn’t do much yesterday. I made it to the dog park and tried to make myself walk faster than usual, so that could be why I’m feeling more achy today. I think it’s time to try some light muscle exercises. I’m scared of the repercussions, but I can’t go on atrophying this way. I’m thinking, some soup-can-arm-curls are in order. If I can’t eat my pea soup/ veg soup/ cream of anything soup, I might as well use them as weights.

We’ll see. My Dad comes for a visit this weekend and I may just decide to leave well enough alone today. Don’t rock the boat. Save your energy, don’t try anything new. I do have to wash the dogs today and I have a lunch date with a friend and, if I have the energy, I’d love to get to the dog park, too. So… we’ll see.

I meant to start signing off with something I’m grateful for ~ my version of a gratitude journal, to keep things in perspective. Today, I am grateful for sun. Every day that there is sun, I feel better. I’m very scared of the impending winter. But, my therapist says I must stop the future thinking, so, for now, thank you, Sun!

by

Diet & Supplements Day 7… added info.

Ok, my grief over the loss of most of diet staples is significantly reduced now that I have allowed myself oats in the morning. It changes everything. My mood, how full I feel, my constipation… Ok, I lied, that problem still has not been solved. After days of Miralax! No change.

I finally got some more clarification from the Good Doctor about what kind of Vitamin A to buy. She had said to look for “preformed” or “mixed carotenoids”. I told her I had looked at hundreds of labels and only found “beta-carotene”, “retinyl palmitate”, “retinyl acetate”, just “palmitate”, and “fish liver oil”. She said I want most of the vitamin A in the product to be in the retinol or retinyl palmitate form ~ not beta carotene. So many Vitamin A supplements are coupled with Vitamin D, but since I already bought the latter, I’m looking for straight Vitamin A. I had blood tests done that showed I am allergic to cod, egg and tomato. I’m ignoring tomato, I’m kind of ignoring egg, but I’d like to avoid cod (the doc said not to place a lot of faith in the blood tests, but, out of all of them, he’d probably avoid cod). So, I don’t want to get Vitamin A from cod liver oil. I’m going to buy this one: Solgar Dry Vitamin A, 5,000iu. It’s also free of Gluten, Wheat, Dairy, Soy, Yeast, Sugar, Sodium, Artificial Flavor, Sweetener, Preservatives and Color. God love them.

As far as my diet goes, yesterday I had granola with almond milk and a banana for breakfast. Salmon, carrots, cauliflower, avocado and olives for lunch. Spinach, coleslaw, and pork chop with apple sauce for dinner. Snacks were mixed nuts and a Lara Bar.

I forgot to mention that the Good Doctor wants me drinking green tea and ginger tea and using olive oil and turmeric in my cooking (keep forgetting to buy turmeric!).

by

Diet Day 5… I think I’m gonna cave.

So, yesterday, I stuck with the diet after my earwig fiasco and, as usual, lunch and dinner were better: leftover soup and, for dinner, my husband made a lean hamburger with a portobello mushroom “bun”, tomato, sauteed onions and asparagus. Yum! He came through in my time of need!

However, I did email the Good Doctor and told her that I felt like my quality of life (what little there is) was suffering with this diet and could I please just eat oats in the morning? I make my own granola, which I adore, with gluten-free oats, nuts, coconut, cranberries… If I could still have that and oatmeal once in a while, I could really try to get excited about the rest of the diet. Still cut out all dairy, all other grains, all fatty meats, all legumes. It would still be a strict elimination of a lot of the foods I normally eat. And I will cut down on oats. I won’t eat as much as I was… I will still have a smoothie, but I will add some granola on the side to feel full. I will add fruit to my porridge, I can make homemade oat/fruit/nut/seed bars to carry as snacks for low blood sugar (instead of a tin of tuna!). That’s the thing about hypoglycemia ~ I’ve always been told to LIMIT my consumption of fruit and fruit juices because of the high sugar content, but this diet was doing the opposite. I think, if I could eat eggs, it would be a different story. The thing I really need to do ~ and have always needed to do ~ is cut back on sugar and I hope this diet will help.

So, the Good Doctor thought that was a reasonable request and now I’m feeling like a bit of a failure for caving, but this has lightened my mood considerably and maybe, once I’ve eliminated all the other stuff for a while, I will then feel strong enough to stop eating oats, too.

I should have bargained corn back into the diet instead of oats, that way I could have Chex cereal and popcorn and corn tortillas! Doh!