Empty, hopeless and lonely

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. I'm sure neither of these things leads to a full and healthy life but right now food is more of a fuel for me, so I'll take calories where I can find them, and liquid when I can manage it. First thing in the morning seems a good time to drink water so often, this is the only time when I can take more than one swallow. 

I'm still missing out on countless other things though - I've been on a few holidays where I was barely able to sample the local cuisine which used to be one of my favourite things when travelling. I've missed out on amazing looking foods just because I also knew that there was no way I would be able to swallow those, which is a real shame. I've also been to restaurants and cafes where I've had to turn down the food even though I really, really wanted to eat some of it because it looked or smelled delicious. I've been on a couple of all-inclusive holidays where I definitely didn't make the most of what I'd paid to be there!

I'm still waiting on an appointment with the speech therapist, and I hope this happens soon. I also hope that whatever they recommend works because I'm not sure how much longer I can carry on like this. I also feel so very alone, because I don't know anyone else that has this or has even heard of anyone else experiencing this. Sure, I have heard anecdotes from some people that know a friend, a relative or someone that has something like this, but when I dig deeper, it isn't exactly what I've got. I have no one to relate to, nobody that has raised their hand and said "yes, I also can't swallow foods and I know how it feels."

Do you know anyone? Please let me know - I would love to just find someone to sympathise with and, maybe, share some tips on coping. Because I feel pretty hopeless about ever being able to eat another full meal, ever again.