I wanted to write a quick little post on travel and EDS with PoTS this week. The past few weeks I’ve done quite a bit of travelling, I traveled to Birmingham to do my back belt grading, a competition in the docklands London, to and from the local university twice a week with the college and other trips with my family. I wanted to share the things that I came up with that have helped me for long journeys, usually me and my family take road trips across Europe too for holidays so I guess anyone who wants travel tips should read. Okay so I guess I’ll start with the obvious. ALWAYS HAVE A MED BAG! This is really important incase of emergency, being organised can really help when travelling, if you know where everything is and you’re prepared for a problem you know how to deal with it. I find with my PoTS I’m often quite forgetful so I usually get my mum or someone to check after I think I’ve remembered everything just incase. So following up from that braces can be very uncomfortable to sit in for a long duration so I usually leave these off until I’m actually getting out for a break/stretch. I like to take lots of heat pads and usually a pillow for my back. Regular breaks are good, when travelling long distances I try to stop every 1-2 hours so I can stretch and move around. If you’re on a coach and going a long distance I would recommend taking an aisle seat, as pretty as the window seat is, the aisle is a good place to stretch the legs and easy to get out of when you stop. Take a drink with you and I like to use the nuun electrolyte tablets (my favourite flavour is cherry limeade) sometimes it takes 2 for them to work but they taste good and are easy to use on the go. With PoTS as well I always have compression tights on, on bad days they don’t really work but good days they take the edge off what I do have. Managing yourself whilst travelling is difficult and I could go on for ages about it but I think the quick tips here and there are pretty good.
Hey, welcome back to The Zebra Post. I thought being British and constantly complaining about the weather is kinda our thing I would just write something about the weather change recently. Here in Britain it has gone from summer to what feels like winter in a space of days. This for a zebra such as myself can cause us some bad problems with our joints, muscles and heart rate. Yesterday I was in class and they had a problem with the heating where it was basically blowing out cold air. This added to the cold weather outside made my joints get sharp pains, my muscles are numb from shivering and my heart is desperately trying to pump blood around my body. I ended up leaving class early because I was so cold and I’ve ended up skipping college today because of pain. May I just add that I was actually wearing 3 layers and my boyfriends winter coat (little extreme for what everyone seems to be calling the start of autumn don’t you think? XD) which just about drowns me because it’s so big. I just want to remind all zebras to try to wrap up warm, try to use reheating bean bags if you can, if it’s too cold outside don’t do anything stupid, or at least what the normal people would class as stupid. Please know your body well and don’t feel like you have to do anything for anyone else if it will put your health at risk. Now I always find is a good time to dose up on vitamin C just incase of colds, with having Ehlers Danlos my immune system is pretty crappy anyways but I would rather have the extra safety blanket there (even if I don’t always feel it working) to make sure if I get a cold it may not be as bad as it would’ve been had I have not taken the vitamin C. Stay warm, stay safe, may the force be with you.
I guess I should really introduce myself so you don’t think I’m some anonymous character on the internet. I’m Kiera, I’m 17 and I’m from England. I have Ehlers Danlos syndrome and PoTs, I made this page for people to relate to and so that people hopefully share more on invisible illness. Throughout my time on this page I want to meet new people and share my experience with Ehlers Danlos and PoTs. I hope more young people like myself with Ehlers Danlos, PoTs and other conditions can speak up about what they are going through and have more confidence to do so. Chronic illness is tough at the best of times but we aren’t really alone and I don’t want anyone to feel like their condition defines who they are. I believe with the right amount of awareness and support hopefully one day the ‘normal’ people will understand us zebras. Whilst I do have a genetic condition I’ve been doing karate for 13 years, I’m a keen equestrian and striving to be a ‘normal’ teenager. This blog will probably have the word normal in it a lot to be honest. I hope you enjoy what I post. Without anymore rambling on welcome to The Zebra Post. 🦓