Please remember that if you are suffering from dysautonomia, you are never alone! There are hundreds of thousands of others that are going through the same type of situations as you are. Everyone is at a different level of severity but we all have our good days and bad days. Some have more good days and some have more bad days.
As for me...
A bad day could mean that I was too tired and sore to get out of bed and I just laid there or slept all day.
A good day could mean that I was too tired and sore to get out of bed, but I got a really nice phone call or a nice message from a friend.
You see for me, it isn't the physical stuff that makes a bad day, it is the other parts of my world. If I ever feel misunderstood or if I get told that I am just faking or that my symptoms aren't that bad from someone that has no idea what they are talking about... that can make that day a bad day. I know that they are just words but still... WE ARE NOT FAKING ANYTHING!!! IT IS NOT ALL IN OUR HEADS!!!
So, even if I get all bruised up from fainting multiple times a day, it could still be a good day as long as I keep on smiling! There have been numerous times that I have fainted continuosly but it was still a good day!
Count your blessings and learn to not take anything for granted!
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If you are a family member or friend of someone with any chronic illness, be there for them! Send them a nice message or give their phone a ring! Offer to take them to the store or pick something up for them. Rent a movie and go to their place and watch it with them. Spend some time with them. It doesn't have to be much... just an hour a week would mean so much to them!!!
OH! and if your family member or friend isn't having a good day physically and they cancel plans... GET OVER IT! Don't make a big fuss over it... just think to yourself, "would I want to go do that if I had the flu or a stomach virus?" You probably wouldn't and you would hope that your family and friends understood instead of getting upset about it. Put yourself in their shoes.
We can not guarantee you how we are going to feel in the next minute, much less next weekend. People ask me all the time if I am feeling okay and I say, "yeah, I'm fine" then the next thing I know, I am laying on the floor with new scratches or bruises because I fainted again.
I would also like to add... if your family member or friend asks to go some place with you, don't reject them because they might have an episode. How would you feel if you never got to go anywhere? It is hard feeling like you are in solitary confinement. If they do have an episode, don't get upset about that either. It isn't their fault. They want to try to live some too... It is extremely hard hearing about how much fun you have and them being stuck in bed all the time missing out on life.
Yes, the public is going to be judgemental and say a lot of rude things, hopefully that will soon change with more awareness... but until then either ignore it or politely explain to them that it is a medical condition of the autonomic nervous system not alcohol, drugs, pregnancy, an eating disorder, or "partying too much".
Eating disorders, accussing people of having an eating disorder is painful too wether they have one or not. Making fun of someone because they are really skinny or too fast is hurtful. Those with dysautonomia can not help it!!! Our digestive systems do not work properly and we are excercise intolerant. We come in all shapes and sizes. Our medication can also make us loss or gain weight but we have to take those medications in order to function! Please, be understanding.
Laziness, we are not lazy. If you had dysautonomia do you honestly think that you would be able to be wide open? Do you even think that you would be able to handle having dysautonomia?
