trigger warning for anorexia and eating disorders
So, having developed POTS earlier in the year, I now find myself with severely worsened swallowing issues…
Partly this post is so I don’t have to repeat myself but partly it’s also a grumble. EDS is the gift that keeps on giving. And just when you’ve got used to one new symptom, bang, there’s another one.
The health issue
I’ve had trouble swallowing for years but never particularly severely. Mostly it’d be a feeling of a lump in my throat or difficulty swallowing saliva. Then a year and a half ago I started having trouble with tablets coming back up. Not often so it took a few months till I went to the dr. She tried me on PPIs thinking it was silent reflux. They made it a lot lot worse. I went from bringing up tablets once a week to once a day. And it didn’t matter what shape or type the tablet was.
I was then referred to ENT. By the time I saw them I’d managed to regurgitate a lot of juice in the middle of the night, a scary time. ENT then stuck a camera up my nose and declared there was some redness, probably from silent reflux. They gave me a really awful printed advise sheet which was full of common sense and nothing I wasn’t already doing…
Then came an appointment with a lovely speech and language person who declared my swallow is slow to get started and a bit weak. She couldn’t help me with regurgitation issues because the speech and language team only deal with things going down. She looked into what to do next with me.
Somewhere along the way I also had a barium swallow test which came back fine.
Then, two months ago, I woke up one morning and everything fell apart. Suddenly I couldn’t swallow most foods without regurgitation, my tablets became a battle and even some drinks flew out the window. What I have been left with is a strange menu of small portions of dairy free cauliflower cheese (cauliflower cut up super small), gnocchi and grated cheese (but only 8 pieces of gnocchi…) and ice cream. Up until recently I could do white chocolate buttons (lower melting point than others), only 4, but that seems to be too much now. I could also do apple juice if it was watered down by half. Now I’m on a third apple juice to two thirds water and struggling. I can do lucazade if it’s watered down with lemonade. And I can do wine, which is probably not a great idea on the amount I’m eating but it’s also probably the main reason I’ve not lost more weight than I have…
I have gone from eating vaguely normally to an amount my anorexia likes and I have gone from drinking 6+ litres of fluid to less than 2 and my salt intake, which I need for controlling the POTS has inevitably dropped drastically…
Thankfully I had a gastro appointment six weeks into the troubles and the dr has been really helpful, or at least he listened well and took note of what I was saying. Unfortunately there aren’t many options. I’ve just tried one medication which hasn’t helped, may have made things worse and came with weird side effects. I’m waiting to hear about a second med he wanted to try but it is a long shot. And he didn’t want to talk about what happens after that… Based on the options he ruled out, I can’t see anything other than feeding tubes ahead… Which is a hard thing to think about.
The social issue
A lot of socialising revolves around food but also, right now, i don’t have the energy or the mood to be people-ing much… which i also know is going to make my mood worse…
None of the foods I can eat are any good for eating outside the house because they either aren’t available or need cooking. This means on the full day course I did recently and the day trip I took, I’ve had some nibbles of cheese, four buttons and glucose tablets to get me through.
There is also the aspect of having to repeat everything to people when I see them and having helpful suggestions made. Which brings me onto my care.
The care issue
I know that my carers are doing what they’re doing primarily out of concern. But they keep suggesting foods I should try, asking if they can tempt me into breakfast and telling me about the meals they’re going out for. Some of this is because it’s hard to know how to help, in fact they can’t help, but some of it is thoughtlessness.
I have placed a huge sign in my kitchen asking people not to talk to me about food or my swallow unless it’s necessary or I bring it up – it seems to be being ignored… Yes, I do want to grumble to my care team now and then as it’s a horrible situation and I’m annoyed. But I don’t want to be asked if I’ve thought about soup/custard/blended food, especially when I’ve already explained that I can’t. And I definitely don’t want to hear the details of your Christmas dinner, because mine is likely to suck. Literally.
The mental health issue
And of course, within this all, we have the anorexia. Which was in a good place mostly. And I think anyone’s mental health would suffer in this situation. Firstly, I’m not getting enough food and that’s bad for your mind, I’m not getting enough sleep either and I am so bored of the few foods I can eat. Plus I’m really craving salty foods and cravings are tough to deal with. And my only real experience of beating down cravings is anorexia… When I am not experiencing disordered eating, I don’t limit what I eat or when I eat really… Which actually reminds me that I’m not fully recovered from the anorexia because there are still lots of foods I won’t eat or aren’t comfortable with and I do limit quantity.
So that’s all fun, right? I’m going to balance this out with a blog post about a new pretty oracle deck in a few minutes!