Salieri

I get paresthesia and it can be pretty painful. So I describe it to people as standing in a hill of fire ants. For my pounding heart, I describe it as being repeatedly punched in the chest (which resulted in my now ex-husband punching himself repeatedly in the chest and telling me it wasn't that bad. That's not a normal response by any means but it definitely illustrates the lengths people are willing to go to prove you wrong about how bad this stuff can be). For what's not really vertigo but still ends up being some kind of dizziness, I liken it to walking on a boat before you have your sea legs. For blurry vision, it's like opening your eyes underwater. For my muscles spasms, especially the ones in my hands, I tell people it's why I'm so good at opening pickle jars: my hand just will not let go. It is currently trying to crush my phone as I write this. For when my legs feel very suddenly weak, it's like somebody came up and kicked me behind my knees. It is really hard to stand up if somebody has done that to you. Sometimes my voice doesn't want to work. I sound like I'm deaf. People will treat me like I am when that happens. When I describe it to a doctor, it's like my mouth is entirely filled with peanut butter. And finally, because I heal so very slowly and am suspected to have ehlers danlos, I explain my poor spelling and grammar on the fact that I am currently typing this using my voice (which works most of the time now) due to a violent shoulder injury. I personally have found that likening it to inanimate objects doesn't get me too far. But that is definitely a personal preference. It doesn't make the explanations other people find useful any less valid.

The stigma of dependency around benzodiazepines nearly kept me from avoiding unnecessary emergency room visits. My doctor was fine with me keeping Xanax in my routine. I'm lucky because most don't want to do that. If I have a really bad adrenaline dump that raises my heart rate and blood pressure suddenly in the night and wakes me up, as long as I am not gasping for breath and having chest pains, I take my beta blocker and a dose of xanax and wait it out. This has definitely reduced the amount of times that the paramedics have had to come and take me to the ER. They were coming so often that one of them stopped asking what was wrong when he would call into the usual hospital I'd go to and commented on my new pair of shoes heh If you decide to use any psychiatric meds to help control this, I highly recommend not telling anybody except people who are directly involved in your caregiving. There is no shame in needing something that really helps you keep going through life as normally as possible but people can and will judge you. You also run the risk of your medication getting stolen, which has happened to me. Everything runs the risk of dependency. People become dependent on laxatives because of dysautonomia but nobody is commenting on their addiction to them.

One of my dogs used to be a well-trained support animal. She helped me with my post-traumatic stress disorder and I wanted to train her for my postural orthostatic tachycardia syndrome. Unfortunately, while I was training her, my now ex-husband would undermine my training by feeding her at inappropriate times in inappropriate places. She was very good at laying down while at a restaurant and no one would even notice that she was there until I walked her out.. But he started feeding her under the table and finally she would be noticed by the restaurant staff. I would have to explain why she was there because she was not acting appropriately. A lot of fights broke out between us and he got violent. His undermining of my hard work is partially why he and I had to split up. Obviously the main reason was because he was beating a disabled woman. She was in a good spot and she is incredibly smart. I obviously kept her after the divorce but she could no longer come out with me. It was really sad. I'm so glad that Hannah and Amber work so well together! And that her support system is able to be, you know, actually supportive.

One of my dogs used to be a well-trained support animal. She helped me with my post-traumatic stress disorder and I wanted to train her for my postural orthostatic tachycardia syndrome. Unfortunately, while I was training her, my now ex-husband would undermine my training by feeding her at inappropriate times in inappropriate places. She was very good at laying down while at a restaurant and no one would even notice that she was there until I walked her out.. But he started feeding her under the table and finally she would be noticed by the restaurant staff. I would have to explain why she was there because she was not acting appropriately. A lot of fights broke out between us and he got violent. His undermining of my hard work is partially why he and I had to split up. Obviously the main reason was because he was beating a disabled woman. She was in a good spot and she is incredibly smart. I obviously kept her after the divorce but she could no longer come out with me. It was really sad. I'm so glad that Hannah and Amber work so well together! And that her support system is able to be, you know, actually supportive.