Due to surgery Luna’s Little Library will be on leave for a short period. I am uncertain of how long exactly at this point. The prediction is a few weeks at least but it could be a little longer.
There are some scheduled posts that will go live during this period and I expect I will be around on social media to some extent the longer I’m in recovery but until the ‘after’ I don’t know how I’ll be.
Come August I hope that my blog will return to normal.
If you want to know a bit about what all of this is about, scroll down.
Achalasia not Andalasia
I’ve been meaning to write this post for ages, partly because it’s going to be therapeutic but also because:
- you likely haven’t heard of ‘Achalasia’
- and it’s the perfect excuse to use a disproportionate amount of Pitch-Perfect gifs
Let’s get the medical stuff out of the way. As per the NHS website Achalasia is:
“…is a disorder of the gullet (oesophagus) where it loses the ability to move food along. The valve at the end of the gullet also fails to open and allow food to pass into your stomach. As a result, food gets stuck in your gullet and is often brought back up.”
Depending on where you look Achalasia affects about 6,000 people in Britain or affects about 1 person in 100,000 per year. Either way it’s a bit “uncommon”. Oh and you can’t cure it.
I never heard of it, neither had anyone on my family or my family. Fun fact – when (after many horrible tests) my local hospital diagnosed me the Doctor was googling treatments with me in the room.
He referred me to the head-of Department who knew a bit more and also confirmed that my local hospital couldn’t treat me. There aren’t that many Surgeons for Achalasia in the UK so I’m travelling to Manchester (which is still relatively close).
My heard works weirdly and the first few times I heard the word Achalasia I kept thinking of the movie Enchanted. But living with Achalasia is nothing like hailing from a magical fairy-tale land like Andalasia… even if the words sound pretty.
It’s seriously a-ca-awkward
I’m actually being glib about this. Defining Achalasia as ‘awkward’ is an understatement of epic propositions. Supposedly to begin with you could say it was.
With most people getting a diagnosis takes years. Getting mine took a little under 2 years. From what I’ve gathered that’s actually quick.
Some Achalasia symptoms;
- dysphagia, a condition where you find it difficult/painful to swallow food (this gets worse over time)
- bringing up undigested food shortly after meals (or during meals)
- also bringing up undigested food can lead to choking and coughing fits, chest pain and heartburn. (this is especially fun at night – so sleep deprivation should really count as a symptom)
- significant weight loss
The longer Achalasia has a hold of you the more “fun” you have with it. I began with hiccupping at meals, irritating but not much more than that.
Then came the chest pains/spasms, with no idea what they were I ended up in A&E a couple of times. My heart is fine but the pain just kept coming.
All the while the hiccups evolved. Certain foods became an issue. I couldn’t drink some things anymore. My diet became less and less.
Then last summer the most horrible meal out. I ordered a sandwich and 2 bites in I threw it up instantly at the table. I was mortified.
Noddle soup became my near constant food source. It’s warm and safe. I replaced cold drinks with hot squash because I couldn’t even drink water anymore.
The coughing fits at night mean that I can’t tell you the last time I slept a whole night. Good nights mean 4hrs sleep (with interruptions).
Achalasia is not an Eating Disorder but…
Despite having Achalasia, I really don’t know much about it. There isn’t much information to be found and what there is doesn’t tell you all that much about what it’s like to HAVE Achalasia. I did find a FB group, as well as some archived blog posts and odd articles.
It’s important to say at this point that everyone suffers from Achalasia differently.
We have symptoms in common but food I can consume someone else can’t. Some sufferers find carbonated drinks to be really helpful for example but I haven’t been able to drink them.
Achalasia diagnoses take time. One pitfall is that when you go to a doctor and tell them you can’t eat, that you’re throwing up you’re food as you eat (or after) and that you’re losing weight it’s easy for that Doctor to assume you have an issue with food – but completely not in the way you do.
Weight loss is a side-effect of Achalasia. I had plenty going spare so it’s been ok. I’d be lying if I said fitting into clothes 2 sizes smaller wasn’t nice. But this isn’t healthy weight loss.
In its own twisted way Achalasia opens the door to real food issues.
I am now scared of eating.
When trying to eat physically causes you so much pain that you have tears running down your face – the skipping of meals is enticing. There are some foods (like peas) that I’m terrified to try again, even after surgery.
And the most warped commentary I’ve had re Achalasia has been “must be great for weight loss”. I’ve heard this from people at work, hairdresser, even one of the nurses. How is that helpful?!
Once I’ve healed from the surgery I’m supposed to re-introduce foods (there is a chance that some things I’ll never be able to eat again) but between the Achalasia and the weird social commentary I almost feel like I’ll miss not being able to eat. At least I know what to expect with that.
Nothing makes sense
& Achalasia affects everything you do
- Sometimes what I could eat the day before I can’t manage the following day.
- Sometimes I can eat something but an hour later I can’t.
- Sometimes persisting pays off yet other times it’s the worst idea.
- Sometimes I can’t drink anything
- And apparently drinking hot rum helps me eat better.
The most frustrating thing about Achalasia I’ve found is that affects everything you do. You can’t avoid food. You most definitely can’t avoid liquids or sleep. With my chronic pain medication (because I didn’t have enough wrong with me already) I’m supposed to ensure I stay hydrated by drinking loads of water. This is a daily mountain.
Mornings when you can’t swallow your pain medication have knock-on effects that carry through, sometimes for days.
Work colleagues offering you a snack or brining drinks from the vending machine make you feel uncomfortable. How rude are you for refusing in situations with people who don’t know you? You can’t explain what’s wrong every single time. Planning how to feed yourself if you’re on a day out becomes almost panic inducing.
All the while you look fine. Actually you look great, because doesn’t that weight loss suit you. ‘You go girl!’ “Wish I could lose 2 stone that quick.”