I am so tired of people who are angry with me for having to cancel plans, or even forgetting them, or not showing up for them, especially early in the morning, or later evening. . I have flat out told EVERYONE I am sick. I have a rare, auto-immune vasculitis called Microscopic Polyangiitis, a painful adipose tissue disorder called Lipoedema/Lipedema, Sleep Apnea, and Mental Health issues. It is not like I have kept that a secret.
Early in the morning I am groggy and often have a hard time getting up. Why? I am on medications at night to help me sleep. It is called PTSD. In PTSD I have nightmares, horrible nightmares, so I take medication to stop them and help me sleep. Often these meds leave me groggy, particularly if I do not sleep well that night from pain. Horrible pain that hurts everywhere and NOTHING helps. Of course I also add vicodin on top of the meds I take for nightmares before bed, otherwise I am up all night unable to sleep, in pain and full of anxiety.
Anyway try this experiment...take Benadryl every day for a week. 50 mg benadryl in the liquigels. Take them right before bed. Tell me it is easy for you to get up and rush right out and do things. But start it when you are overtired after spending a night getting only an hour of sleep. That is the only way you will understand how I feel.
Early in the morning I am groggy and often have a hard time getting up. Why? I am on medications at night to help me sleep. It is called PTSD. In PTSD I have nightmares, horrible nightmares, so I take medication to stop them and help me sleep. Often these meds leave me groggy, particularly if I do not sleep well that night from pain. Horrible pain that hurts everywhere and NOTHING helps. Of course I also add vicodin on top of the meds I take for nightmares before bed, otherwise I am up all night unable to sleep, in pain and full of anxiety.
Anyway try this experiment...take Benadryl every day for a week. 50 mg benadryl in the liquigels. Take them right before bed. Tell me it is easy for you to get up and rush right out and do things. But start it when you are overtired after spending a night getting only an hour of sleep. That is the only way you will understand how I feel.
During the day I attempt to do things to secure my future, and keep me alive. I pay bills, shop for food, go to appointments, undergo medical testing many times a month, study for school, do school work, go to classes if I can, and try to go to my meetings. By the end of the day, I can barely walk, even with pain meds. I often pull myself into my vehicle and cry because I can not move. Here's how I suggest you learn. Get a pair of spanx, but get them two sizes too small. Force them onto your body. Then you can feel what it is like to not be able to breathe, and to hurt when you move.
Also take many ace bandages, and wrap your arms and legs and feet...but wrap them just tight enough to where you feel sharp stabbing pain when you walk or stand. Cut off the circulation just a little, not enough to hurt your limbs but enough to make them hurt. Then leave them on, doing your normal day. Wear them all day for one week, only taking them off to shower and put them back on. Then you will understand the pain I feel as the day progresses.
Also take many ace bandages, and wrap your arms and legs and feet...but wrap them just tight enough to where you feel sharp stabbing pain when you walk or stand. Cut off the circulation just a little, not enough to hurt your limbs but enough to make them hurt. Then leave them on, doing your normal day. Wear them all day for one week, only taking them off to shower and put them back on. Then you will understand the pain I feel as the day progresses.
Eventually you will not be able to walk. The pain will be so great that the minute you sit down, you will be unable to get back up to do your normal plans. Watch as you do whatever it takes to rest...desperately wanting to go to your friends, to do stuff, to take and make dinner for your family, to go to a movie...but you can't because the pain is so great, the fatigue is so immense (keep doing the benadryl too after all...I live with both).
Next add on something that causes nausea. EXTREME nausea. I dunno what is safe to take that can do it, but if you know take it. Now try to go on about your day with the bendryl in your body, the wraps and pain, and now nausea. Add a rubber band on your head, and feel the pain and pressure of the head pain. While you are at it, why not put on a mask over your mouth and nose in addition to everything else. That mimicks the hard to breathe and lack of real oxygen in your body.
Now, do all of this and then you can come at me angry for me not making it to things I have planned. Because only then will you kind of understand why I do it. I am not doing it to inconvenience you. Trust me, I would rather go to events, meet with people, go to church, go to people's homes, go to movies, go to the fair, walk, etc than deal with this crap I do every day. Maybe it is high time you all get off your high horses and start to see something as it is, not as you think it is.
And for the record, if you are angry I don't make it to something talk to ME. Don't badmouth me to others in my life. That makes YOU a jerk, not me. I ALWAYS find out. And it pisses me off. I don't do it to others. If you bitch about me to others it solves nothing. If you talk to ME you might understand what happened and why. Am I angry? Yes. I am tired of people treating people like myself like dirt. Take time to understand.
After all you will find that we understand every time something comes up with you. We understand when you are sick. Of course we understand what it is like to be shunned and gossiped about. But trust me, it is NOT about you and how we just don't wanna do it. Far from it. It hurts us more than it ever could hurt you.
After all you will find that we understand every time something comes up with you. We understand when you are sick. Of course we understand what it is like to be shunned and gossiped about. But trust me, it is NOT about you and how we just don't wanna do it. Far from it. It hurts us more than it ever could hurt you.
