I can't bend most of the times. I'm not saying everyday I wake up and get dolled up and put on high heels. Most times I'm in the bed when I'm feeling bad. However, if I have to go out of the house then I choose cute comfortable clothes, flats, and some makeup.
I love this app because the people on here understand what others in your life can't seem to comprehend. It makes you feel so alone in the world when no one understand your pain. Here people understand and encourage you. Plus you can vent when you need to....😊
MochaBarbee I get that, I've recently decided to wear some of my "nicer" clothes because I'm soo fed up of feeling ill that sometimes when I wear nice things it's easier to put on my "everything is great" mask and it also lifts my mood slightly.....if I look good then I feel a bit better.....altho I hate the fact that I get "oh you look good, are you better then?" "No I'm not feeling better but I still want to look good!!!"
Plus I'm wearing my nicer clothes because I don't go out to socialise much anymore so my nicer clothes get left in the wardrobe to collect moth balls otherwise!!!!
Sometimes on my worst pain days where I HAVE to go and do things I will dress my nicest. Something psychologically about being dressed with make up makes me cope slightly better and keeps me from crying in front of customers and such. I can't sustain it long and I usually crash on my next day off, but it can get me through one day at a time. I totally get the frustration with the "but you look good, so you must be feeling better, right?" comments. What the healthy people don't get is that I will never BE better. Even on "good days" I hurt some. Unless they have had a permanent chronic illness people assume you either "get better" or die there is no place in our general culture for the permanatly sick. Luckily we have places like this app where we can commisserate. :)
@maskingthepain Your right I'm never pain free. People don't understand that. They automatically think if you don't look like your gonna die, then your all better. When I have a good day I typically crash and im in the bed the next day.
It's one of the most frustrating parts of all this. Not bad enough we are in constant pain and the effort we put in to looking desent makes the pain worse. Then to have people question our pain is infereainting.
It's horrible. I'm getting to the point where it diesnt hurt as bad when this happens. Although it still picks my heart a little. I use to feel kindness toward them not want them to feel pain but now I'm like yeah let them feel it. And I know if they did they would leave me alone.
I don't have what you guy do, but i do understand the looks/remarks people give when i say i can't do something because of my pain. I've even gotten the looks from nurses at the hospital i went to at the beginning of the year and my mom over heard them say to the security guard "she's just got a headache." A headache that caused me to go partially blind because of the amount of spinal fluid building up in my head. I hate it when people don't understand, they never will.
The one thing Ive found out about being ill is if I run into someone that has cancer or diabetes or some other illness, my heart goes out to them. I believe what they say and I have great compassion. Being ill myself has definitely increased my compassion for all people who suffer.
Its definitely an eye opener, i never quite understood until i was diagnosed with IIH in 2012. It really makes you see the world from a different perspective. It sucks to go through the pain but at the same time its blessing because it gives you more compassion for the people with the illnesses that aren't visible on the outside. Every one of us are different with how our illnesses affect us, but there's still that unique understanding for each other and i love that part.