Tag Archives: symptoms

by

Diet Day 2

Today was rough. I’m constipated, gassy and nauseous. SO MANY PILLS!
For breakfast, I had — seriously — sliced banana in a bowl with almonds and almond milk. Believe me, the absence of cereal in there was conspicuous. I also had a nectarine and half a Banana Bread Lara Bar (beware, they’re disgusting. Why are all banana-flavoured products disgusting?).

For lunch I had the same as yesterday — salad with turkey, olives, onion, and sunflower seeds. I discovered Annie’s Italian dressing has no sugar, so I’ll opt for that in the future. For a snack, I had cauliflower with baba ganoush as a dip and mixed nuts.

Dinner provided some relief from the fruitnutsalad hell. I had lean porkloin with applesauce and savoy cabbage. Plus, a bunch of pistachios.

I went and bought stevia today, so I won’t be cheating with Splenda in my tea anymore. I also bought coconut flour, almond meal, sunflower seeds, sesame seeds and some other stuff. Let the baking breakfast “bread” experiments begin!

by

The evils of CFS/ME

One of these days I’ll write a post about the background of my sickness and the evils of CFS/ME. Sometimes I wonder if I’ll ever be normal again. Beyond the obvious symptoms of this disease, there are some comparatively minor, but majorly disheartening issues that come along with it. Noise sensitivity, light sensitivity, LIFE sensitivity. I don’t want to be in crowds or in loud places or around a bunch of kids or in hospitals. The toll these places and stimuli take on my body is different — but just as severe — as physical exercise. Here are some recent examples:

My aforementioned trip to the dog park yesterday. I was weepy, breathless, irritated. Dogs barking and jumping on me caused me to wince and flinch. I avoided eye contact with everyone lest they try to make small talk or ask what kind of dog I have (a very tall Rhodesian ridgeback – he gets a lot of attention).

My husband and I went to see a movie. We sat in the middle, as usual, but the screen was too big for me to focus on, so we moved further back. Ten minutes later, we had to leave because the volume left me in extraordinary pain. Afterwards, I burst into tears. I felt rattled, shaken, headachy, fuzzy. I felt like I’d been in a war zone for ten minutes.

I went to a baseball game when my best friend was visiting from out of town. The noise was torture. The crowd, overwhelming. The heat, when sitting in the sun, made me feel faint. The chill of the shade made me feel sick. I meditated with my eyes closed to give myself strength, then basically went straight home to bed.

Today, I went to the grocery store. This place is huge. Bananas are half a world away from the strawberries. I went in with a list, worked as quickly as possible, but, it was crowded — families everywhere, carts colliding — I gave up eventually, went back to the car and let me husband check out. I thought I would pass out or puke or both.

There have been so many instances like this. It’s not anxiety or phobia or fear causing it, but, of course, now there is anxiety wondering how a situation will affect me. And wondering whether I will ever be normal again. Whether I will ever again have a high threshold for bright lights, loud noises, multiple conversations or big crowds. I want to be able to go to a concert or the cinema. I want to be able to watch fireworks or go to a party. I want to be able to go to a mall or a grocery store or an airport. I caught a sensitivity virus. Sensitivity to noise, lights, sound, heat, cold, foods, drugs, alcohol, chemicals, animals, touch… I don’t want to be a hermit or antisocial. I don’t want to live in peace and quiet! … I’m forced to.

If, one day, you see my screaming and dancing in a mosh pit at some extremely loud rock concert, just know it is a good thing: I am jumping for joy.

by

LDN Day 7…the insomnia pill.

Low-dose naltrexone is the opposite of a sleeping pill. I have been a bad sleeper my whole life, but I have never experienced anything like this. In the past, when I had insomnia it was because my mind was racing, even though I was exhausted. This last week, my mind isn’t racing, I am just wide awake. Wide awake with my eyes closed. Mind alert and blank. Eyes wide shut.

Take a look at the Zeo graph ~ there should be more black than blue. There should be fewer graph lines showing because you are asleep. You want empty space, not these huge blocks of blue that show you were awake (the top line = “W” for “wake”). I was in bed from 10pm until 9am. I didn’t sleep. Even when I was asleep, I wasn’t really asleep. Each of those graph lines represents 5 minutes. I would be in deep sleep for 5 minutes and then awake again.

Also, that bright light in my eyes was a constant last night. I am lying in a dark room with my eyes closed, but it feels like someone is shining a spotlight on my face. I would open and close my eyes and what I saw with my eyes opened was darker than what I saw with my eyes closed. How does that happen??

So, needless to say, I am tired today. My eyes are very swollen, my hands hurt. My back and shoulder muscles feel a little better than yesterday and much better than the day before, but I have a headache. I even had a massage yesterday and I fell asleep during my daily meditation ~ you would think I would be so relaxed for bedtime.

My chest was still tight last night and, for the first time, I got some nausea right before bed. Other than that, I can’t tell that LDN has done anything. I will stick with it, but I better start sleeping more or feeling better during the day ~ either one will do.

by

LDN Day 6…a better night.

Last night, I slept better than I have in the past 5 nights. That doesn’t mean I slept well, but I slept better. I think I might have actually hit 8 hours. Zeo says 6 hours and 50 minutes but it looks like the headband fell off or lost contact with my forehead for over an hour. I still had crazy dreams (about saving my dogs from danger. I always have this dream. What do parents of human children do? I think I would never stop dreaming about keeping them safe). I also woke up with no blood in my arms multiple times and pain in my neck, as usual, but what was different from the other nights? Well, yesterday, I got a bit of exercise at the park (walking slowly, but something), I used arnica and took a painkiller for the muscle pain, I took my antihistamine nasal spray twice, I used my neck stretcher thingy (like a mini-rack for your spine), I did mild leg and arm stretches, I didn’t eat last night after 5 or 6pm, and I did a little mental preparation before I went to sleep, telling myself that everything was great and the diet would be exciting and tomorrow I would have energy and, oh, I LOVE bed! (lie ~ this year, bed has become all things bad) Also, the temperature dipped last night and my room was much colder than usual (which is typically not a good thing for me because I get chilled and my head and ears get cold. Back in January, when this sickness started in earnest, I would wear a woolly cap to bed every night, as well as have the electric heater on, as well as cuddle a hot water bottle. I’m going to invest in an electric blanket this winter). I don’t know what, if anything, helped me get more sleep, but I want to track it. I know if I just popped a bigger, better painkiller and a muscle relaxer, I would sleep much better, but I still refuse. It freaks me out. If I stop the LDN, maybe I will try other options, but, for now, one drug at a time, sweet jesus.

Today, I am stiff and achy, of course. My eyes are VERY swollen. I am going to chalk that up to sleeping longer and maybe a bit deeper and pretend it is a good thing. My hands still hurt and are swollen and the left thumb is still one raw nerve. Oh, I keep forgetting to tell you about this one crazy side effect I’ve been having at night since starting the LDN. I wake up in the night from a light in my eyes, but, when I open them, the room is black. This keeps happening! From behind closed eyes, I think someone has opened the blind or something, but when I come fully awake and open my eyes: darkness. Bizarre. Also, LDN seems to be affecting my skin ~ I have a bit of a break out on my chest (never happens) and face.

Yesterday, I did make it to the dog park, but not the pharmacy or the grocery store. I was just so wasted and the weather was crappy. So, I haven’t started the diet or the supplements yet. I’m having my tea with milk and splenda and savouring every sip. The Good Doctor dropped another bombshell about my diet late last night via email: NO BEANS. That means NO PEANUT BUTTER, NO HUMMUS. That kills me. Hummus can replace so much ~ eat it with veg to feel more full, put in on sandwiches (or, in my case, lettuce wraps. Yum), baked hummus chicken is good… But peanut butter I will truly mourn. Peanuts are my go-to food. She also said it is essential to have no refined sugar. That made me want to punch her in the face. If you ever read this, Good Doctor, I don’t really mean that. I don’t want to hurt you, you are my only hope, but I am just so overwhelmed by what I have to do, what I can’t do, how NOT easy eating is going to be.

I’ll start the diet tomorrow. I promise. I’ll go shopping today. I’ll have to make homemade soups. Lots of homemade soups, salads, nuts for snacks and … what about breakfast? I still feel discouraged about breakfast. I’ll have to develop a liking for the fake yogurts made with soy or coconut milk. I could add fruit and crumbled Lara Bar and pretend it’s granola or muesli. Then, to stop my blood sugar dropping, eat a bunch of almonds. This is going to fun. You are going to feel great.

Have I mentioned my blood sugar? If I have, forgive me ~ no memory. I have reactive hypoglycemia. I can fast for 10 hours and my sugar is fine, but, as soon as I eat breakfast, I have to watch out. An hour or two later (depending on what I had to eat), my BS plummets. I usually catch it in the 60s and 70s, once I start to feel the shakes. Last week, it was 58. The week before it was 43. That’s low. Way too low. It had an effect on my whole day. So, now I am trying to be very mindful of what I eat in the mornings.

by

Day 5… Later. Feeling low.

I’ve been debating whether I should be honest on this blog about just how hopeless things can feel and how low I can get with this sickness. Part of me thinks I should keep it factual, try to report the facts, not make things sound so dire and depress those that might be reading. But, things often feel dire and, if I’m going to use these posts for the therapeutic purposes they’ve taken on, maybe I should be honest with my feelings.

So, honestly, I’m scared and feeling pretty hopeless – today. I know, from the last nine months, when my physical symptoms are better, my mood lightens immediately, so I’m trying to keep things in perspective. You will have a better day than today. Take one day at a time. You’ll live to a ripe old age. You will have a quality of life. It’s just difficult to stay positive. It’s virtually impossible. In the simplest description, I have had the flu for nine months. That’s not the half of it, obviously, but, it’s the best way to get across how it feels. Tonight I feel like shit. It’s the same thing I keep describing: I can’t breathe, every muscle is stiff and painful, I have a headache and feel weak, my throat is sore, I have chills, low grade fever and no appetite. I just want to get better. I just want ...to…feel…better. To feel strong. To feel stable. To feel pain free. To feel carefree. To not notice how I feel!

The truth is, I can’t do this for years and it feels selfish. Things could be so much worse. I could be much sicker or I could be much poorer or I could have no husband, friends or family. I could live in a different country, I could be in a war zone, I could have no access to healthcare, I could have no bed, no blankets. I could be much sicker. I have to find the strength to be grateful every day. We all do. So, in that spirit: I am grateful to be alive. As long as you are breathing, there is more right with you than wrong with you.