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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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I need ideas please!!

Please, if anyone out there can help me with breakfast ideas, I would be SO GRATEFUL.

Breakfast, my whole life, has been cereal or granola or muesli or oatmeal or toast. Now, I am not allowed to have grains, diary, eggs or bacon. I’m not big on savoury meals in the morning, but, even if I were going to force myself, what is there besides eggs and bacon and toast? Does anyone have any ideas?

I’m not big on fruit, either, but that is the ONLY thing I can bring myself to eat in the mornings on this new diet. Problem is, fruit needs something else to settle it ~ cereal or toast or yogurt ~ otherwise it’s just acidic and nasty in my stomach. And how much fruit would I have to eat to feel full? Blech.

So, please, please help me! I bought cashew butter and almond butter ~ is there anything I can buy or make that will mimic bread or toast? Can anyone think of anything that will replace cereal/oatmeal besides a handful of nuts? Ick.

I’m about to go spread cashew butter on a banana. Vom!

I’ll learn how to cook. Please help. 😦

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LDN Day 8: O Frabjous Day!

You won’t believe it. I don’t believe it! I got 9 1/2 hours sleep. I have been wearing my Zeo headband for years ~ long before I got sick ~ and that is the longest sleep time it has ever recorded. A lifetime record! So, yesterday, this is what I did that was different than most days: I took a painkiller (we’re talking only 500mg of acetaminophen; remember, I hate drugs), I took my nasal spray right before bed, I didn’t eat very much at night, I pushed myself to go to the dog park (it was awful, I made my husband go with me and I spent the whole time crying. It just felt like I had major flu and someone had forced me to walk around a dusty, loud, hot, dirty park), I pushed myself to do some gentle stretches right before bed, and I used a different pillow. I usually use an orthopedic pillow with a lump to support my neck, but last night I wound up using a regular $5 fluffy one that I had been using between my knees. Hhmm. Maybe I was simply so exhausted, there was no other option but to sleep.

I already feel different this morning, but I think it’s just in attitude. My eyes and hands are still swollen, my muscles are still sore and my head still hurts, but I am elated that I got so much sleep, so nothing can bring me down.

The LDN does seem to be constipating me and I still have not noticed any good repercussions from taking it ~ only bad. But, I’m sticking with it. Part of me thinks, if I could get 9 hours sleep every night for a month ~ or 6 months! ~ I would be better. Or, at least, it might give me the mental strength to be positive and hopeful.

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Diet + Supplements Day 1: here’s the daily schedule.

Here is how I have decided to take my supplements throughout the day:

First thing in morning: thyroid hormones (T3 and T4)
Wait 1 hour
1x OrthoBiotic
Wait 15 minutes
2x 500mg Acetyl L carnitine
Wait 15 minutes
Breakfast with tea with 2x tsp fiber and 1x 100mg Colace
After breakfast:
2x 200mg Alpha Lipoic Acid
2x Borage Oil @ 240mg GLA each
1x Biomins
1x 100mg CoQ10
After lunch:
2x 200mg Alpha Lipoic Acid
2x 2000iu Vitamin D
1x Vitamin B-complex
1x 900mg fish oil
After dinner:
2x 200mg Alpha Lipoic Acid
2x Borage Oil @ 240mg GLA each
1x Biomins
8pm: Birth Control Pill
On empty stomach (9pm??): 2x 500mg Acetyl L carnitine
10pm: LDN

Somewhere: Vitamin A: 10,000 iu/day (I haven’t tracked this down in a supplement yet)

Check back in a few days — I will upload photos of the brands of each supplement I decided to buy based on mgs and cost.

Today, breakfast consisted of a banana and blueberry smoothie. I made it with unsweetened almond/coconut milk, which is disgusting on its own, but wasn’t too bad in the smoothie. Until it turned all congealy, which it did half way through drinking it. I tried to add more liquid, but it didn’t work. It was like Metamucil in the 1980s — thick vomy nastiness. I had a handful of raw almonds and half a Ginger Snap Lara Bar, then took all the new breakfast supplements. It’s been a few hours and so far so good except my pee smells odd – like a different version of asparagus pee smell.

For a snack, I had mixed nuts and Rainier cherries. I had never bought them before and they are delicious!

Lunch was a salad with turkey, olives, sunflower seeds and vinaigrette.

I did not feel good this afternoon. Headache, sore muscles, sore throat, tight chest… Basic flu symptoms. I took a painkiller, my inhaler, my antihistamine nasal spray and eye drops, used the TENS, Epsom salt bath… The whole shebang. But, still, did not feel very hungry for dinner. Unfortunately, I have to force food so I can take the million pills on the agenda, so I had some soup with chicken breast. The best part? I only had veggie soup with beans, peas and corn in it, so I picked out every single one! Nuts and the other half of the Lara Bar for dessert.

The only thing I cheated on today was Splenda in my tea and there is sugar in my salad dressing (to which I will turn a blind eye for the next three months).

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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.