Tuesday, January 03, 2017


I realize that I never actually have long descriptive answers or discussions about why I cannot do certain things.
That means people have to evaluate and come to conclusions based on what they know. So they assume for eg that I do not travel (flight) because I dont have the confidence to. Or like mom who thinks that I am just scared to do it. 

It hurts of course when people close to you don't understand things, but thats the nature of the beast. It is difficult to understand certain conditions without actually going through something similar. It is difficult even for hubbs to sometimes understand or plan according to some of the issues even though he sees them frequently. It is understandable that anyone else who meets me a few days in a year or in several years will not have enough information to conclude one way or the other.

So lets take an example of flying. Flying is one word, one event, but for me it breaks down into several smaller problems, each of which needs a solution.

-Getting to the airport. is possible.
- Walking to the checkin and security, difficult. All the long walk on shiny surfaces, with so many people around for stimulation, very difficult. We could mitigate some of these by choosing to fly on a day with less crowd, carrying cushions to sit on for 15 mins and walk etc.
- Get to the terminal, almost not possible. That long a walk is not an option, my balances goes off after a while and I just cannot co-ordinate enough to walk. I have to sit on a sofa kid of place and stabilize for a few minutes. Wheelchair is not an option as sitting in moving chairs is not possible with my current balance. I will fall off, and then what?. Only option is probably the small airport golf car thing, but most airports dont have that and some also have a train joining the terminal, which is currently not an option.
- By some miracle, if we reach the flight, sitting on the flight in those weird chairs is not an option. i will fall off. The plane movement will surely make me horribly sick. oh wait, I forgot claustrophobic too in the small confines. Option is to put me under some kind of sedation. Sedation with things other than benzos, need medical assistance to always be present. Also passengers cannot be sedated while getting off the plane or going through immigration etc. So now what.
- add to this any unknown events, many people, noise levels etc.
- How can I possibly even attempt a flight?

The anxiety and stress when thinking of the word, the event, has a reason, the reason being not having options and solutions.

Its like I am always on a roller coaster. I have always disliked them and they make me sick. The coaster is manageable for some instances, and awful for some, but like any regular person, I do not have a choice to get off the roller coaster. I am stuck on it. There are always new twists and turns and the only way I can handle them and be able to live life without falling into a depression or developing other issues, is if some of those twists and turns are made handleable with options and solutions to rest in between, options to be able to get to a place where I can stabilize.

Here is another simpler example. Sitting on a chair. Thats the most frequent thing that gets said. Why dont you just try to sit on that chair. Sure I can "try". After half a minute, I will start to get a headache and my eyes will start to get weird and not able to focus well, another half a minute later i will be moving constantly trying to balance myself and will get an ear ache, and to manage everything, my body will start to stiffen. Eventually I will fall off the chair or get a vertigo attack and fall off.
I know within the first 5 to 10 seconds if I can balance myself on that chair/sofa, if not, then i just get up. I also already know now after being this way for 11 years, what chairs just dont work. So trying is just going to make me miserable.

There might be other people with similar problems who can do more. They might have found medicines that work for them for things like flying, they might have a higher threshold when it comes to vertigo/balance issues. But there might be other things that they cannot do. Everyone is different, has different problems and different limitations. Whether one has a health issue or not, every person cannot climb mount Everest, everyone cannot swim, every single person cannot drive, everyone has different fears and capabilities etc. And judging people has never helped anyone.

When you see someone struggling with anything, instead of assuming that they are not strong enough, not intelligent enough or whatever enough, reach out and help. We might think that this one thing is super easy, then why is this person struggling. But for them it might be the toughest task at hand.


  1. I hear you girl. I have severe endometriosis, and some days I am in so much pain that I want to rip off my uterus and fling it away from me. Yet most people including family members seem to think that I am a cry baby for not being able to handle some "period pains". What can you do? I have decided not to bother about other people's perceptions of me and just do whatever works best for me. If others think I am a lazy, neurotic crybaby, so be it. I hope you keep finding solutions that work for you, and are able to manage your issues as best as they can be managed.

    1. that is exactly the mantra i am trying to achieve. Just keep living your own way. Hope you have some people who understand some of it to help you through the tough days. Hugs!