There is a phrase that comes to mind when I think of this: "When you want to change someone else, think how hard it is to change one thing about yourself." I made a letter to send to friends, that said something like this. And, if the friend continued to be annoying I either omitted them from my life or I sent them another letter. Life's not fair.
I feel guilty and I am guilty because before I got sick with a somewhat "invisible" disease, I often would look at people myself with judgement of how could they be disabled or park in that parking space because they "look just fine." And, then one day my life stopped and I could no longer function from the inside and explaining it to others was impossible. I still have good friends that believe I can do better than I do. Some people have a built in decision of how sick you need to be before you are considered sick. They don't know if you were up all night staring at the ceiling or if you had diarrhea all night long from IBS, they can't see the pain in your ankles or how bad your head hurts. The syndrome has so many issues you must be a hypochondriac. Right? It really took me getting something "invisible" to truly understand what that is all about.
This is similar to what I wrote: Try it, it worked on many.
" I have an illness that controls the neurological systems of my brain. Much like MS does. I can tell my body to get up, but my brain might say there is no way, and I just can't. Who knows when the instructions will be heard.... in 5 minutes or in 5 days. Our brains control how we think, smile, hurt, care, love and hate. When they are broken and not working well, the amount of damage we have endured depends on how serious this illness or these illnesses can be. Since the brain controls everything, its a whole body event. Often, my feet hurt so badly I can't imagine walking across the room, tomorrow it might be my neck and my feet are fine.
Doctors and researchers all over the world have found several genes that are not working in us. Certain things can happen in our lives that put stress on our bodies like getting a serious virus for example, or having a bad accident. Our brains with this illness can not process this correctly. We often have what we call a "flare" which can last for weeks or even months over something as simple as a bad cold. Our brain can't figure out what to do. Medications are only bandaids. What works for one person might be poison to the other. TV ads are often laughed at by the very people they are said to help because the medine often makes people sicker or the side effects are so dangerous it can't be taken. Each person's body is different.
The most important thing that you can do as my friend or family member is to understand my limitations and know that I would not wish this illness on anyone. Its horrible having to cope with day to day problems and not make any plans because you don't know in what shape your brain will wake up tomorrow.
I can only give you a number, like the Spoons Theory, today I am a 5, I hope I can keep my energy till after noon and be able to acomplish something. When there is weather, the barometric pressure acts like a baloon on our veins.. the oxygen that we receive from the surges feels like waves in our brains and the pain that follows in our muscles hurts worse than anything I can describe to you. When you see a heavy nor-easter coming, make me a meal please, because I may not be able to get out of bed and don't be upset if I can't eat it, I might not be able to chew until tomorrow.
Once in a while I will have a good week or even a good month.... we remain so guarded because they are far and few between, but do happen. There is no cure yet, though researchers are working on it, so that small break does not mean I am cured, it just means I get a break for a while... and I never know when its going to be over.
Believe in me, I don't want to be sick - I was not given a choice. I hope this helps you to understand. I truly value your friendship. "