Tag Archives: mood

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LDN Day 11… Thoughts on long-term illness.

Well, the Miralax didn’t work (called Movicol, I believe, in Ireland and the UK), so I took it again this morning. I’m pretty sure the constipation has nothing to do with the low-dose naltrexone. I think it’s from the radical change in my diet and all the supplement pills.

The good news is that yesterday was okay even after the activity of the day before. There were two bad spells: in the afternoon I was feeling very low, very lonely, very sorry for myself. Being home alone is very isolating when you feel like you can’t physically accomplish all the things you wished you could not work in order to do. Did that sentence make sense? I spent years wishing for an extended period of time off of work! I would do yoga and paint our rooms and read 100 books I’ve been meaning to read. I would have movie marathons all day, I would meet friends for lunch, learn to cook, learn Spanish, hike in the beautiful mountains with the dogs… I had to leave my job in May due to this evil illness and I haven’t done any of those things. I haven’t turned on the tv once during the day. I tried gentle yoga a few times before I realised the degree of my muscle atrophy and managed to injure myself repeatedly. I have met people for lunch a few times, but have always been laid up the next day, useless. I’m not sure where the days go, honestly. I used to work an average of 50 hours a week: during the slow months, 45 hours/week, during the busy months, I’ve worked 70+. Now, I am on the computer in the morning for a bit, I do laundry, I tidy up, I meditate, I try to get to the dog park and then it’s the evening. I don’t even talk to anyone on the phone because I don’t really want to talk about me and I don’t want them to ask. Yeah, yeah, same old, same old, how are YOU? The problem is, I don’t want them not to ask, either, because then I feel like I’ve been left to die. I know that’s morbid. It’s just interesting what I’m learning about myself through all of this.

The best I’ve felt in the past nine months was when my best friend came to visit from Ireland. She was a distraction and a counselor. She was full of energy and positivity. We talked about my situation, but so many other things, too. I guess I feel better when I’m not left alone with this spectre and I’m able to talk about different tactics going forward ~ in an analytical way, almost, as if it is obvious I am going to conquer this, I just have to find the right weapon. I expend a lot of energy trying not to lose hope and not be depressed and, yes, not be suicidal, so it’s nice to know that there are friends and family who understand, are sympathetic, but know that things will get better. Or pretend to. The first time I met the Good Doctor, she said, “Let me hold on to hope for you for a while. I know you will get better, so, if you lose all hope, just know that I am holding onto it for you.”

Anyway, yesterday there were two bad spells: the low, lonely moment in the afternoon and the flu in the evening. For about two hours, I was convinced once again that I was catching a cold: sore throat, headache, muscle aches, ear and nose issues. But nothing has changed this morning. I was in bed from 10pm to 10am, up repeatedly, crazy dreams, waking with my hands gripping the sheets in fists, jaw clamped down painfully… BUT, I managed to get 8 hours sleep during those 12 hours. That’s fantastic, I just have to learn to do that in less time.

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Diet Day 4… Earwigs for breakfast.

I don’t like fruit. I’ve never really liked fruit. It doesn’t taste very good, it’s not filling, it gives you a stomach ache, it messes with your bowels. I have never understood people that buy fruit to eat it raw for the taste. I’ve only ever eaten it because it’s supposed to be good for me. Bananas gross me out. I eat them all the time because I’m trying to be good to my body, but they are the right taste and texture for about 3 minutes during their lifetime. Before that, they are grassy and tart, afterwards, they are muddy and diarrheal. My coworkers used to eat brown bananas by my desk just to see me wretch.

Well, now, with this diet, I am forced to eat a lot of fruit. I was trying to be positive: Mmm, fresh produce! Yum, berries! Apples taste great! This morning, I did that while eating my breakfast peach: Peaches are so good in season! So juicy and tasty and fresh! But, they’re not! It’s a lie. Their skin is freaky fuzzy and they always have brown soft spots that feel …contagious. But, by god, I wasn’t going to eat another Lara Bar for breakfast, so I persevered. When I was almost finished, the peach cracked open. The center had no pit ~ it was rotten and very moldy and, joy, two earwigs scurried out. I screamed, dropped the peach, my dog jumped up with his ears flattened and tail tucked, the earwigs disappeared (I honestly can’t find them anywhere) and then I promptly puked.

My husband happened to stop by the house while this was happening. He said, “Why does this stuff always happen to you?” And then he reminded me of the time a few years ago when I had bitten into a cashew and found a bug inside. Probably not the best thing to bring up when I’m doubled over the toilet and half of my current diet is nut-based.

So, I ask you, do I decide to have a liquid breakfast of chocolate almond milk every morning and just deal with the nausea that the pills will give me? Or, do I decide that I am allowed to eat oats, only in the morning in the form of granola, muesli, porridge or oat/nut/fruit bars? Do I perservere and eat a banana every morning during that 3-minute window of banana goodness and call that my breakfast? Or do I say, my quality of life is suffering and now, not only am I sick physically, but I’m sick to my stomach and depressed thinking about food every day, so fuck it…? What do you vote, readers?

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Diet Day 3… IBS hell.

Not sure where I’m going to dredge up the willpower to keep this diet going. Wait, I do… I’m sick, I want to feel better, I’d do anything. But, oof, this is godawful. I am so bloated, uncomfortabe and nauseous. I’m doing those pregnant-lady-in-labour breathing exercises to stop from vomiting. My IBS is not a fan of all these new foods, supplements and drugs. I won’t give you the grisly details.

So, today for breakfast I tried to “bake” some apple bread. For details, see my previous post crying for help. It went in the bin. Then I made a smoothie with a green banana and not-ripe strawberries. It wasn’t very good, so I added chocolate almond milk. It still wasn’t very good, but I drank it so I could take my pills. My cherries had turned moldy; they went in the bin.

I was hungry and shaky from low blood sugar while at my sister’s house, so lunch was a tin of tuna on romaine lettuce. Yep, that’s it. No mayo, no nothing. A girl’s gotta do what a girl’s gotta do when a girl’s hungry.

Snacks were pistachios (more nuts) and beet chips (weird) and dried apple slices (rubbery).

For dinner I made a soup that was instant, but tasted like it simmered all day (ish). Kitchen Basics chicken broth simmered with cauliflower, broccoli, leftover cabbage, leftover chicken breast, leftover onion and some spices.

What I really want is some saltines. Or toast with peanut butter.

Have I mentioned I’ve gained 8 pounds in the last few weeks? I think that might be the LDN. But I’m pretty sure the constipation and nausea is the new diet and supplement plan. Hang in there, guts!

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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.

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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.