Sarah’s MG travel hacks: Packing, planning, and resting

In the prepping situations, I try to look for information online in the attractions if they are disabled-friendly or not, and whether I can rent a wheelchair when I need it. Having this map also is very, comforting and helping. When I feel tired, I know that I have a plan B somewhere around.

I wrote about this in my Paris trips. I could take a wheelchair for free in the Versailles castle, and they just rented me for free — the wheelchair. It helped me a lot because it was too long, and I couldn’t walk anymore. I was still so tired. It’s very helpful to have an insight before going so you know what are your options.

Before, I always try to take every medical thing I can think about. I take ice bombs. I do have something similar — it’s not an ice bomb, but it looks like this — just for the sore muscles.

I know that Myasthenia is not supposed to give you any pain, but I know that after a long day, I feel very sore, and these ice bombs are very helpful. It’s something that is used a lot in sports, and you see it in TV and everything. It’s very helpful.

I also try to pack a little Mestinon bottle in everyone’s suitcase and bags. I live with my parents and my sisters, so we are six. I am lucky, and I put some Mestinon on everywhere so I won’t forget anything.

I have a column where I told you that I try to show more or less of my Myasthenia, so people can understand — because you can’t see it in our bodies. For people who use wheelchairs, it’s easier, but for people who don’t, it’s kind of impossible at the airport, telling someone that you’re disabled and being believed. It’s very rare.

So what I do is that I always make sure that it is visible. I either wear my neck collar, it helps me with the trip because sometimes my neck starts feeling heavy and very sore. It helps me preventing the pain, but also shows people the disability they can see.

Some people might think this is lying or doing drama or anything, but it’s really helpful — whether it’s for the airport or also on the long trips. When they see someone having a collar or everything, people are more calm around and not stressed.

Before the trip also, I do a lot of checking. I try to check all the spots where I’m going to see if there are rest places, coffee shops anywhere I can stop and take a pause. You can never plan the whole pathway, but if you have an idea that maybe in 10 miles there is somewhere you can sit and rest, it helps me a lot with my inner peace.

And then during the trip, besides wearing my neck collar, I try to wear some very, very, very comfy clothes. Not something that would put pressure on the muscles, especially for long trips.

Even normal people experience pain, so I try to prevent it.

I tried before to kind of cancel all of my meetings, all of my work before a trip, but I found out that during the trip I will suffer more if I was in a rest situation and then rushed the travel. So the best idea is to keep the same track. If you have work or studies or anything, just keep up and then go and let a day after arriving to your destination for resting.

And I also try to see if I can have some physiotherapists where I am going. When I know that the trip is too long and I’m going to get pain — and sometimes I don’t schedule, but I keep the numbers just in case.

During the trip, what I do is that I always push myself and push everyone to take rests all the time, because if it’s not scheduled, like you put in an alarm each hour, stopping somewhere and staying at least for 15 or 20 minutes, I will probably not make it until the end of the day, even if I take my medication, even if I do everything right.

And that’s it for the during. After the trip, what I do is that I take the week off just right after. No matter how long the trip was.

For myself, I always need the week off, and I schedule either a massage or a physiotherapy session just to recover from all of that work and walking and enjoying.

And this is pretty much it for my hacks for traveling.