Sometimes I feel a great need to justify my situation. I shouldn’t have to, though.
The skin on my legs is really sore. I haven’t felt this sore in a while. But these past few days I have been in a lot of pain, to the point where I have been walking bandy-legged, have needed to elevate my legs when sitting, and needed help buckling my shoes because I can’t bend down or lift my legs high enough to do so.
While my illness varies with severity and pain, to others it may seem constant. My face is always red. People don’t see my body. Most people don’t notice when I am in pain unless they know me very well. And if I looked the same last time they saw me, then I must be the same now. I guess it’s like an invisible illness inside a very visible one.
There are a few people that I call on for help. I know they understand that my illness fluctuates, and I trust them seeing my at my worst. These people mean so much to me. They are like my family because my family aren’t here in the same city as me. I rarely ask for help or special treatment when I am sore. Most of the time I just grin and bear the pain and do what every other able bodied person can do. Waiting in a queue when I can hardly stand up. Walking. Carrying heavy loads. Cooking and cleaning.
So when I do ask for help, or get offered help from people who don’t know me too well, I am truly grateful. But to be questioned about receiving help, or being called a princess when I am too sore to do something that others can, is very hurtful.
Oh Carly this made me cry. It is hard when people don't realise the non-visible symptoms are the worst. I guess it's hard for people to understand the fluctuating pain without having experienced it, and that while you feel great today, tomrrow you might have to flake on the couch watching dodgy TV because it's all you can do.
It is hard when people you don't know tell you to 'suck it up, princess' when they have no idea. I even once had somebody's grandmother mock me because she could lift things with her arthritic hands that I couldn't!
I'm rambling here, I just wanted to say something. I hope you're feeling ok today (or at least watching some brilliant dodgy TV and/or Oprah)
I wish I could be there to help, Carly! You should never feel as though you have to justify your situation, however it's so fantastic that you're raising awareness of your condition so that maybe one day there will be no ignorant people left to misunderstand your condition.
Hope you feel better soon xxx
Dear Carly, really hope you feel better soon, the way you deal with your condition is awe-inspiring. Normal nice people are only too glad to help, any one else is not worth bothering about and there is a lot of foot in mouth around.. take care of you, am loving all your posts, you are so clever linking in your music, I thought of you when I was trying to do my song lyrics post, the technology defeats me, I am afraid Bx