Not everyone is keen on travelling alone and people ask me about it all the time. They specifically ask if I'm nervous about travelling with Lupus and what I do if I get sick. My illness is one of the reasons I LIKE travelling alone because I can take naps etc. and I don't have to feel bad about messing up anyone's plans if I get sick or need to take it easy.
I do a lot of planning for each trip and take precautions for my health. I can manage it pretty well and have had only had one major incident. I passed out in a Sri Lankan train station (I was already laying down so it wasn't dramatic) When I was able, I crawled over to a couple I had heard speak English earlier and had them call my driver. I felt better a few hours later, but I never did get to ride the train which was my number one reason for going to Sri Lanka!
I had my heart set on this 32 day trip through Central America and the itinerary had a lot of "free days" where we could choose what to do so I figured I could rest when needed. My insurance from my school pays for evacuation if needed so that was good. I dedicated myself to my 9:30pm bedtime even if it meant missing out of fun stuff with others. My goal was to make it through the whole month without an incident.
I did really well! up until the last two days 😩
The second to last night, I went to some hot springs and could barely walk when I got out - I was hoping it purged the Lupus, but sadly no. Luming helped me waddle to the changing room to change my clothes then I waddled to the dining room. I get tremors in my hands and legs and it makes it difficult to walk, open things, get dressed, feed myself etc. Thankfully, this was at the end of the trip and people new me so they were willing to help. Sage and Daniel went up to the buffet to fill plates for me and they knew what kind of food I like :) My right hand shakes more than my left so I put a spoon or fork in my left hand to help balance the shaky right one so basically I'm shovelling my food in with two utensils. Sage and Daniel graciously ignored this bizarre situation and I had a delicious dinner. They helped me get out of my chair and to the front lobby and I took the bus home, thinking I'd be fine after a good night's sleep.
I felt better in the morning and could walk decently as we went looking for sloths, went to the swimming hole, and had lunch. As lunch was ending, I was having trouble with my hands and could tell I was about to start stuttering. My body was going down hill fast so I waddled back to the hotel so I could rest a bit before the van ride. We weren't leaving until 2 and we had already checked out so I laid down in a big chair in the lobby. By the time we left, I was worse- Sage and Brayden had to put my shoes on for me and tie them. I got into my seat and hoped the 4.5 hours would go quickly. The lining in my heart and lungs swell up and it hurts really bad. By the time we stopped to pee an hour and a half into the drive, I was crying. I had to be helped to the bathroom because I couldn't move well. James moved some luggage around and pulled down the middle seats so I could lay down. If I lay on my left side, it shifts the fluid in my heart and lung linings and it hurts a bit less and I can breath better.
The whole afternoon was like my worst nightmare. I tried so hard to take care of myself so I didn't have an episode on this trip. I hate when my illness affects other people and here I was laying down while others were all packed together in the van. I've learned a long time ago you have to swallow your pride when you have a serious chronic illness. I have to ask for help no matter how mortifying it is. It is scary for people who see it for the first time and I try to reassure them it is " normal" and that I know when I have to seek medical attention. There is always a risk that I could have an episode but if I lived in fear of that I would never do anything. There are people on my Lupus message boards that aren't actually LIVING. They skip their own children's showers or weddings even! Because they don't want people to see they've gained weight from medicine, or they have the huge Lupus rash across their face, or their arms aren't working right. Screw that. Lupus will take my life someday (unless a bus runs over me first) but it hasn't taken my life yet and I'm going to enjoy what I can.
In a few days, I am leaving for Paraguay - alone. Paraguay is not a tourist country and my Spanish is not strong so I'm hoping that will be able to get around ok and not have any trouble :)
I do a lot of planning for each trip and take precautions for my health. I can manage it pretty well and have had only had one major incident. I passed out in a Sri Lankan train station (I was already laying down so it wasn't dramatic) When I was able, I crawled over to a couple I had heard speak English earlier and had them call my driver. I felt better a few hours later, but I never did get to ride the train which was my number one reason for going to Sri Lanka!
I had my heart set on this 32 day trip through Central America and the itinerary had a lot of "free days" where we could choose what to do so I figured I could rest when needed. My insurance from my school pays for evacuation if needed so that was good. I dedicated myself to my 9:30pm bedtime even if it meant missing out of fun stuff with others. My goal was to make it through the whole month without an incident.
I did really well! up until the last two days 😩
The second to last night, I went to some hot springs and could barely walk when I got out - I was hoping it purged the Lupus, but sadly no. Luming helped me waddle to the changing room to change my clothes then I waddled to the dining room. I get tremors in my hands and legs and it makes it difficult to walk, open things, get dressed, feed myself etc. Thankfully, this was at the end of the trip and people new me so they were willing to help. Sage and Daniel went up to the buffet to fill plates for me and they knew what kind of food I like :) My right hand shakes more than my left so I put a spoon or fork in my left hand to help balance the shaky right one so basically I'm shovelling my food in with two utensils. Sage and Daniel graciously ignored this bizarre situation and I had a delicious dinner. They helped me get out of my chair and to the front lobby and I took the bus home, thinking I'd be fine after a good night's sleep.
I felt better in the morning and could walk decently as we went looking for sloths, went to the swimming hole, and had lunch. As lunch was ending, I was having trouble with my hands and could tell I was about to start stuttering. My body was going down hill fast so I waddled back to the hotel so I could rest a bit before the van ride. We weren't leaving until 2 and we had already checked out so I laid down in a big chair in the lobby. By the time we left, I was worse- Sage and Brayden had to put my shoes on for me and tie them. I got into my seat and hoped the 4.5 hours would go quickly. The lining in my heart and lungs swell up and it hurts really bad. By the time we stopped to pee an hour and a half into the drive, I was crying. I had to be helped to the bathroom because I couldn't move well. James moved some luggage around and pulled down the middle seats so I could lay down. If I lay on my left side, it shifts the fluid in my heart and lung linings and it hurts a bit less and I can breath better.
The whole afternoon was like my worst nightmare. I tried so hard to take care of myself so I didn't have an episode on this trip. I hate when my illness affects other people and here I was laying down while others were all packed together in the van. I've learned a long time ago you have to swallow your pride when you have a serious chronic illness. I have to ask for help no matter how mortifying it is. It is scary for people who see it for the first time and I try to reassure them it is " normal" and that I know when I have to seek medical attention. There is always a risk that I could have an episode but if I lived in fear of that I would never do anything. There are people on my Lupus message boards that aren't actually LIVING. They skip their own children's showers or weddings even! Because they don't want people to see they've gained weight from medicine, or they have the huge Lupus rash across their face, or their arms aren't working right. Screw that. Lupus will take my life someday (unless a bus runs over me first) but it hasn't taken my life yet and I'm going to enjoy what I can.
In a few days, I am leaving for Paraguay - alone. Paraguay is not a tourist country and my Spanish is not strong so I'm hoping that will be able to get around ok and not have any trouble :)
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