Fire and Ice

Our minds are certainly powerful and capable of so much. They are also weird and work in baffling ways, or at least mine does. After some waiting, I finally had a meeting with a Speech-Language Therapist and BOY was this the most useful hour of my life! (well, at least as it relates to my swallowing issues). After reviewing my medical history and tests, we had a chat about what I was experiencing and how was I coping. My SLT was very straight and direct and basically said that I had nothing wrong, physically, but had somehow developed a form of eating disorder with an anxiety overlay. And that was all fine, she could help. I then got an anatomy lesson to show me how swallowing works and also to reassure me that this is something that happens automatically...but when it doesn't, I've been over-thinking it. This causes a self-fulfilling prophecy that if I think I might choke, my body will start to agree and protect me against this fictional danger. This has also meant that my bra...

It's been six months since I first noticed that I was having trouble eating. Since then I've had a handful of doctor's appointments, hospital visits, peculiar tests, bits of advice, good days, bad days...and very, very little to eat.  I know that the medical establishment is trying to help, with all the limits and struggles that it also has because of the pandemic and all sorts of other circumstances. I know (or want to believe) that every person I've met wants to help but the fact remains that we still don't really know why this is happening AND that I also eat less than a picky toddler during a trip to a foreign country where they don't like any of the food. My weight keeps dropping and I'm sure my nutrition is absolutely awful.  My body does seem to be adapting though - I don't get as many hunger pangs as I used to, even when eating one Babybel all day. I also don't get so many headaches even though I'm barely drinking a glass of water a day. ...

Things were sort of ok - in that way that it was almost possible to forget that I had any issue at all - and just when I thought I could almost live that way, they got bad. THEN they got worse. Since yesterday evening I've not been able to eat or drink anything - not even water. Every sip of water I take (because that is all I've dared try today) is a massive undertaking and makes me feel like I'm going to absolutely choke. I even spat out one of those tiny sips because I wasn't confident that it would not kill me.  So yeah, got the old headache back and I am 100% thirsty. I am also slowly losing my focus and I can see that my legs will start to wobble very soon. This will also inevitably trigger my anxiety and perhaps even keep me up at night, further making me tired, grumpy and a nightmare.  Previous bad days have eventually turned into good ones so I'm hoping that this does, too.  The struggle continues. 

A week ago I spent around 30 minutes swallowing the thickest, chalkiest, heaviest smoothie I've ever had. It tasted sort of like strawberry but a very small cup of it (the size of a shot glass) weighed way more than its size would suggest. It also had the texture of plaster and was about as hard to swallow. I mean, I know that this is not the easiest thing for me to do right now, but I bet that even people without a swallowing challenge would struggle. Why was I doing this? As a medical test, of course. This has many names (videofluoroscopy was the name on my letter) but most people referred to it as the Barium swallow test . The idea here is that you swallow this heavy, thick smoothie while professionals watch your insides with X-rays and see what happens. There are several different kinds of swallows that I had to do: small ones, quick ones, facing sideways, facing the other ways, and even - God forbid - lying down. I even had to chew a marshmallow coated in the stuff, all in th...

Over the last couple of weeks things have been up and down - and to be honest, mostly up. I didn't want to jinx it so I stayed away from the blog, knowing that the moment I wrote that things were "pretty much ok" it would all come crashing down. Or maybe I'm getting better at coping? If that is the case then it is true that we can get used to anything. I have noticed that I am more successful with foods like chicken or veggie nuggets (like Quorn or similar chicken substitutes), mozzarella fingers as long as they are not too melty, very buttery scrambled egg with tomato sauce (no lumps), creamy or tomato-y pasta, Pringles, Doritos and Cheez-its. I'm also good with smoothies, milkshakes and other thick drinks - and on very good days, even a latte as long as it is not too hot. Nutritionally, this is a disaster: mostly junk food, barely any veggies and the only fruit is whatever I tip into the breakfast smoothie. I tried making a smooth-but-thick roasted vegetable sou...

So, what does a "good" day look like? Well, it would mean that, in addition to a small smoothie for breakfast, I would have this much pasta for lunch: It would start out warm but by the time I finish it (literally hours later), it's pretty cold. If it was a particularly good day, I would have about half of that for dinner and this would take a long time too. Throughout the day I would aim to drink as much water as possible, and on a good day it would be about a glass of water through the day. In tiny little sips.  I repeat - this is on a good day. On a bad day, I would probably have none of this and on a very bad day, even my own saliva is a challenge. Yet doctors continue to treat me as if none of this is urgent. 

It's amazing how many things seem to pivot around food. I've m entioned some before but it seems that every day I discover something new... truly a case of "you don't know what you've got until it's gone." For a start, you know those days when you are tired, perhaps from a poor night's sleep and having to work the next day? Typically on those days, I would definitely have a few coffees and then something like eggs for breakfast. Then I'd try to stay awake by snacking and grazing all day.  These days, as you know by now, these are not options available to me right now so pulling through on a tiring day is much, much harder. I hadn't realised just how much I would depend on food and especially drinks to get me through the tiredness. Without these strategies, it was very, very hard to get through a long Monday after a not-so-great night.  Another surprising food situation I've recently experienced is visiting a Disney park - the snacks and tr...