Fear

Fear is a very real and constant part of my M.E. experience. I fear that I'll never get any better than my current condition, even as I work to accept that may be true. I fear getting worse, I fear that one day I won't be able to get out of bed. I fear being a burden.

I fear never going on another vacation. I fear that by the time we save up for a cruise, I'll be too unwell to go. I dream of going on one last big holiday. Travelling causes most people with M.E. to crash. Airports are crowded, busy, and loud. Airplanes aren't comfortable and flights to the US from Australia are long.

I decided that a cruise would be my best chance for a vacation, nearly everything would be included and nearby. Meals and shows would be a relatively short wheelchair ride away. I could sit on the deck or by the pool, and we could get an accessible room. I want a balcony room so if I need to rest I'll still be able to see the ocean. But I fear it won't happen. While going on vacation is a privilege, it's also something that so many people get to do. If the rest of my life might be confined to my house, I want one last hurrah. It's one of my few accessible bucket list items.

I also fear never seeing my family or friends again. I had that fear when COVID briefly shut down travel, but as the world opened up, mine became smaller. Even if I make it back to visit, I may be too sick to be able to do much. I have to be realistic, air travel may very well trigger me to crash for my entire visit. I would love for them to visit me, but I also fear that I won't be well enough to do much with them while they're here.

I have so many other fears, too many to list and some I'm afraid to even say. I fear this feeling of dying in slow motion, and I fear that there's nothing that can make it better.

I'm still doing my best to stay positive, to be grateful and find beauty every day. But I also have to admit the negative feelings as well.