It's been a while since I came online. I'm sure I had a topic for the blog, but for the life of me, I've forgotten it. I guess I'll just write a mishmash of what's been going on. Or not going on!
I got an appointment to see a dietitian in another county that's a good hour's drive away, early in the morning. Getting to another city so early in the morning is not possible for me or my family, particularly my dad who is the driver and who sleeps over 12 hours and misses most of the day with his M.E. So we rang to get it changed, had to leave a voicemail message, and now we're waiting for a new appointment. Preferably in the afternoon. I've written out a summary for her, even though I feel a bit embarrassed printing out all these things for doctors to read, but what else can I do? Writing things out is the only way I can articulate them. I may tweak it before I print it, but so far my summary for the dietitian:
Foods I have cut out:
* 'IBS' - Wheat, high fibre foods, cheese, fruit, all vegetables except carrots and swede, nuts, seeds, meat
* Acid reflux - All fruit, juice, smoothies, fizzy drinks, milk, milky dairy products like yogurt and rice pudding, chocolate, tomato, vinegar
Vegetarian/pescatarian since 2011, tried meat in 2017 but had severe symptoms
Currently experimenting with lactose-free butter
Experiments still to do:
- butternut squash, parsnips, sweet potato
- peanut butter
Seem to react badly to:
- oats
- corn/cornflour
- possibly quinoa
Went gluten-free approx. September 2018
Symptoms that improved after going gluten-free:
- No longer bent double
- Gas
- Possibly gut pain; piles
- Night sweats
- Acid; used to get severe acid that debilitated me for hours at a time, where I would have to stop what I was doing to wait it out. This still occurs, but less frequently.
- Vomiting acid in the night
Other possible reasons for symptom improvement:
- Cutting out gassy, hard-to-digest foods like peas, runner beans, sweetcorn
- Possibly eating less fibre
- Raising the bed
- (For piles/constipation) Drinking more water than before
Current diet:
- Genius pancakes or Schar waffles with lacto-free butter
- Schar brioche rolls, hash browns/Yorkshire puddings/chips/roast potatoes/boiled potatoes
- Gluten-free Quorn
- Fish
- Carrots, swede
Dehydrated and throat extremely dry as drinking water causes reflux, feels like filling up an open bag. Water also makes acid.
I had my first ever home eye test on Monday and all I can think is, 'Why didn't I do this years ago??' Both of them were lovely and I cannot wait to replace these broken glasses that have been slipping off my head for 6 months with nice new ones! Now I just need a home hairdresser and home dentist. Hmm.
Summer is approaching which means I'm starting to get worried about my fluid intake. The heatwave last July gave me some anxiety, especially in the mornings when I was scared I was going to faint from dehydration. I drank water first thing back then but I haven't been able to since, as putting water into an empty stomach seems to cause burning, firework acid for ages, maybe even all day. I'm not sure how I'm going to handle the heatwave this year, when it comes. Thankfully my body allowed me to put down more water throughout the day during last year's heat, as if my stomach took mercy for the sake of my body's survival and ceased its acid revenge until the heat subsided. I can only pray my body will do the same again.
My throat suddenly closes in at night a lot. My mouth is almost sore most of the time, and my throat noisy. While other people daydream about sunny vacations and buying a huge house, I daydream about drinking a nice carton of juice. It's scary when my throat closes up, feeling like I can't breathe. So far it's only after going to bed, when I've swallowed my dissolvable anti-depressant and gone to lie down. I know it's dehydration.
Muscles have been jolting a lot lately. My torso jumps, and my legs have been going at it the last few days. It happens most when I lean back. Which tells me that wind, good ol' acid reflux, has something to do with it. But the connection between reflux/wind and muscles jumping is lost on me.
A scary sensation keeps occurring that I can't easily describe. It's as though my muscles suddenly seize up, and my heart seizes up, and I feel like I have to drag my body. It's like dragging myself through incredibly thick mud, like Never-ending Story. It makes me dizzy and light headed too. It's scary until it passes. Mostly the feeling that my heart is also seizing and dragging. It makes me feel like I'm going to collapse. It's a new symptom - maybe within the last month or two. Don't know what to think of it. But I don't know what to think of any of my crazy symptoms.
Reflux is bad today.
Depression is starting to hit.
It's just another day, really.
I got an appointment to see a dietitian in another county that's a good hour's drive away, early in the morning. Getting to another city so early in the morning is not possible for me or my family, particularly my dad who is the driver and who sleeps over 12 hours and misses most of the day with his M.E. So we rang to get it changed, had to leave a voicemail message, and now we're waiting for a new appointment. Preferably in the afternoon. I've written out a summary for her, even though I feel a bit embarrassed printing out all these things for doctors to read, but what else can I do? Writing things out is the only way I can articulate them. I may tweak it before I print it, but so far my summary for the dietitian:
Foods I have cut out:
* 'IBS' - Wheat, high fibre foods, cheese, fruit, all vegetables except carrots and swede, nuts, seeds, meat
* Acid reflux - All fruit, juice, smoothies, fizzy drinks, milk, milky dairy products like yogurt and rice pudding, chocolate, tomato, vinegar
Vegetarian/pescatarian since 2011, tried meat in 2017 but had severe symptoms
Currently experimenting with lactose-free butter
Experiments still to do:
- butternut squash, parsnips, sweet potato
- peanut butter
Seem to react badly to:
- oats
- corn/cornflour
- possibly quinoa
Went gluten-free approx. September 2018
Symptoms that improved after going gluten-free:
- No longer bent double
- Gas
- Possibly gut pain; piles
- Night sweats
- Acid; used to get severe acid that debilitated me for hours at a time, where I would have to stop what I was doing to wait it out. This still occurs, but less frequently.
- Vomiting acid in the night
Other possible reasons for symptom improvement:
- Cutting out gassy, hard-to-digest foods like peas, runner beans, sweetcorn
- Possibly eating less fibre
- Raising the bed
- (For piles/constipation) Drinking more water than before
Current diet:
- Genius pancakes or Schar waffles with lacto-free butter
- Schar brioche rolls, hash browns/Yorkshire puddings/chips/roast potatoes/boiled potatoes
- Gluten-free Quorn
- Fish
- Carrots, swede
Dehydrated and throat extremely dry as drinking water causes reflux, feels like filling up an open bag. Water also makes acid.
I had my first ever home eye test on Monday and all I can think is, 'Why didn't I do this years ago??' Both of them were lovely and I cannot wait to replace these broken glasses that have been slipping off my head for 6 months with nice new ones! Now I just need a home hairdresser and home dentist. Hmm.
Summer is approaching which means I'm starting to get worried about my fluid intake. The heatwave last July gave me some anxiety, especially in the mornings when I was scared I was going to faint from dehydration. I drank water first thing back then but I haven't been able to since, as putting water into an empty stomach seems to cause burning, firework acid for ages, maybe even all day. I'm not sure how I'm going to handle the heatwave this year, when it comes. Thankfully my body allowed me to put down more water throughout the day during last year's heat, as if my stomach took mercy for the sake of my body's survival and ceased its acid revenge until the heat subsided. I can only pray my body will do the same again.
My throat suddenly closes in at night a lot. My mouth is almost sore most of the time, and my throat noisy. While other people daydream about sunny vacations and buying a huge house, I daydream about drinking a nice carton of juice. It's scary when my throat closes up, feeling like I can't breathe. So far it's only after going to bed, when I've swallowed my dissolvable anti-depressant and gone to lie down. I know it's dehydration.
Muscles have been jolting a lot lately. My torso jumps, and my legs have been going at it the last few days. It happens most when I lean back. Which tells me that wind, good ol' acid reflux, has something to do with it. But the connection between reflux/wind and muscles jumping is lost on me.
A scary sensation keeps occurring that I can't easily describe. It's as though my muscles suddenly seize up, and my heart seizes up, and I feel like I have to drag my body. It's like dragging myself through incredibly thick mud, like Never-ending Story. It makes me dizzy and light headed too. It's scary until it passes. Mostly the feeling that my heart is also seizing and dragging. It makes me feel like I'm going to collapse. It's a new symptom - maybe within the last month or two. Don't know what to think of it. But I don't know what to think of any of my crazy symptoms.
Reflux is bad today.
Depression is starting to hit.
It's just another day, really.