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Have You Met My Friends?

Have you met my friends? Dizzy, Lightheaded, Fatigue, Screaming Pain? And the twins Light Sensitivity and Sound Sensitivity.

They won't let me go out today, and it's a beautiful sunny day here with perfect weather. But they won't let me go out.

If I stand up, Dizzy, Lightheaded, and Fatigue get together and beat me up, while Screaming Pain rips every nerve cell from my body with perfect precision. If I dare to open the windows, the twins, Light and Sound Sensitivity, stab into my eyes and ears with invisible knives, and this gives Screaming Pain more fuel for the fire to do more damage.

My only defense, a medicine cabinet full of narcotics, vitamins, minerals. None of it helps for very long. The narcotics just put me to sleep, when I don't want to sleep. The vitamins and minerals, sometimes help with some of it, but not very much.

This is a typical day in my life. My friends won't let me go out. So I lose yet another day, and another, and another. Year after year. Over and over again. No help in sight.


Hi Carrigon, I too find the nice weather more depressing than the cold, dark weather. When it finally warms up in the spring, I *really* want to go out and start digging up the garden, but I well know the price I will pay the next day or three.

And to think that I used to farm this fertile ground for a living. Dwelling on that is not a good idea...

Last week I told the therapist how depressing it is to see the nice weather and know I will be very much sicker if I go out and do some of the activities on the long list of what I used to do. She looked at me like I had two heads, and I'm still not sure she understood my explanation.

If a patient has to explain to a therapist how difficult it is to deal with a never-ending chronic illness, is it likely that therapist will be able to help the patient?

She also questioned whether I wanted to get well, so I guess it really is time to dump her. I need to save my strength for going to the grocery, and for fighting with the new neurologist, who is already complaining about my blood pressure, which is of course going up since I started taking florinef. Duh!

Is it easier to stay inside when the weather gets really hot and humid? I trust you have an air conditioner. I lived in Philadelphia for a few years; July and August were really miserable!
I couldn't live without the air conditioner. I'm on a top floor and it gets so hot in this building.

Sounds like you have clueless docs. Most of them are. I had a clinic around here put down that I have high blood pressure, when I have a low blood pressure condition and no amount of telling them so stopped them from putting that into my medical file. They just have no training and no understanding of POTS or anything else we suffer from. Plus, no one will ever understand unless they have it. It's too bad there isn't a law that all medical personnel have to suffer our illness for a full month or two before being allowed to work in the medical field.
I've been able to put the twins to bed with B2. Going solo has done wonders for his career.

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