Fire and Ice

In the last few weeks the miracle continued: I've been able to eat most meals, most things.  I've been able to join the family again for mealtimes and go out with friends for food. I've cooked some nice meals and then was able to enjoy the fruits of my hard work. Over my birthday weekend, I was able to eat cake, have a few drinks and feel pretty normal. Starbucks have once again seen me darken their doorstep and I've been able to enjoy some nice drinks (and get back on track with my Gold status).  Mealtimes are no longer something I dread or that make me anxious - I can now sit down and enjoy food like most people do. In short: things are fairly back to normal. I still think that my stomach has shrunk and most of the time I'm having much smaller portions than I used to but this is probably a good thing. I'm sure I was having large portions before so it's not a bad idea to reduce those! I also struggle with some very specific textures but they are mostly in f

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

As I thought, good days are followed by not-so-good ones. Once again I'm struggling to eat almost anything , not even the tiny pasta servings I was ok with a few days ago. Definitely frustrating and annoying as I always have the hope that bad days won't return, until they do. It is also a worry of course because I don't know how long this will last and the longer I go without actual food, the worse the health impacts. I think I'm making some progress on how I handle this mentally, though. I may be speaking too soon but I'm trying to shift my thoughts to refocus the anxiety into something else - to try and make this dysphagia something that is here, rather than something I "have". This mental distance between me and my issue does seem to give me some relief from the constant worries. I don't have any evidence but I sometimes think that when I have bad days, I will of course worry. This worry then turns to anxiety which in turn makes swallowing worse. W

  It seems like we can get used to anything.  For another week my struggles continue , except that this week I seem to be in the "good" part of the cycle. These days, good means that I can eat something, often very small meals that can take me hours. But at least it's something and it also means I'm not quite so tired or dizzy all the time. This part of the apparent cycle can also be falsely reassuring: I may manage a little plate of pasta (plain sauce, no cheese) and think I can have a bit more... only to find that actually, no I can't. Or I'll absentmindedly grab a morsel of cake and immediately regret it, as I've also discovered that crumbs are a big NO-NO. But otherwise, at least on good days, I can carry on with my life as mostly normal. I can go for walks without feeling faint, complete a full working day without feeling exhausted and can sit and join people while I eat my tiny, slow meals. All this leads to better mental health, less anxiety and eve

  A few days ago, a friend of mine posted a meme similar to this one on Twitter and it made me stop and think. I don't normally spend much time on these sorts of things, but given what I'm going through, this really resonated. I have certainly been trying to work out "why is this happening to me", all the time. I have also spent so much time trying to get it fixed. But when I saw the image, I decided that it was worth shifting the perspective and spending some time figuring out what this is teaching me instead. It was an interesting thought experiment, at the very least! I spent a few minutes that day just pondering the learnings and came up with a few but the interesting thing is that I've not really stopped thinking about learnings since.  Sure, it is still annoying, infuriating, worrying, depressing and concerning that, I can't really swallow food. I'm not going to say that just by changing my thinking everything else just magically resolved itself. On

At the start of this pandemic, a lot of us tried to find new ways to amuse ourselves at home. I remember people knitting, tie-dying, reading more, getting into yoga, doing puzzles, binge-watching TV and a bunch of other stuff.  I wasn't very original: I really got into cooking.  I have always liked cooking but didn't particularly have much time when I worked full-time in the office and sometimes I had to come home from work, throw some food on the table so that the kids could then go out and do their other activities in the evening (football practice, Scouts, swimming, that sort of thing). These weren't necessarily the best circumstances to try and get more adventurous with my cooking so when lockdown changed all of that, once I got over the shock of feeling generally a prisoner in my own home, I pivoted to cooking. Now I had time to prepare better meals, to experiment more, to try those recipes that I'd collected through the years but had never had the chance to try. I

Anyone that has been on any sort of restrictive diet probably already knows this: starving yourself drives you mad.  I kinda knew this already, and not necessarily from dieting experience, but from knowing how I feel when I haven't eaten for a few hours. You know the drill: hunger makes you cross, grumpy and terrible company. Some people call this "hangry" which is probably pretty apt. However, now that I go various days without eating very much , "hangry" doesn't even begin to cover it. Besides being moody, irritable and grouchy, I have also been anxious, on edge and depressed. Not surprising given that I don't really know when this is getting better, worse or when I'll be able to have a normal meal again.  The worst part is that food is everywhere, which means that it is very difficult to distract myself with something else. I may start watching a great Disney+ series and find that it is entertaining... until the characters then decide to sit down

I mentioned before some of the physical effects that not being able to eat has had on me. I’m obviously hungry and thirsty but there are some other things that are worth talking about a bit more. Even before any of this started, I was already having a slightly different relationship to food than most: my low blood sugar meant that I was prone to fainting spells if I, for example, skipped breakfast. So I am pretty religious about eating when I wake up, if I want to be able to make it through without passing out. This has also meant that I can function better when I have a series of smaller meals throughout the day and have always ensured I have a couple of snacks to hand. Of course, this doesn’t mean that I was 100% healthy in all my choices - and more often than not, my snack of choice was a sweet coffee. But in terms of blood sugar, this was fine although it wasn’t great for my weight. Having said that, I did try to make these snacks at least not terrible, and I’d made great friends

During the summer of 2021, it became obvious that the extended pandemic lockdown wasn’t doing me any good. I’d spent a lot of time cooking, baking, and working out mostly in a “casual” way – certainly not doing the hard workouts I had done before 2020. So, a bit of extra weight was beginning to show and some of my jeans were a little too tight. I have never been a great fan of diets, having tried several and found them unrealistic, unsustainable, or just dangerous. Plus, I love food too much so that wouldn’t be the option. Instead, I made a plan to eat smaller portions and try to increase the strenuousness of my workouts. I only had 5 or 6 kilos to lose, so done in a safe way I should be back to my baseline weight in a few months. But little did I know that much like that pandemic , the universe had other plans for me. Sometime in early October 2021, I noticed that sometimes I struggled to eat certain foods. I would sit down to eat some pasta, for example, and was having issues w