I’ve been neglecting this poor blog for a couple of days. It teases me as I contemplate sleep or writing. Neither of which I’ve accomplished much of in days. I wrote a post on my Autoimmune Facebook Page a few months ago. I asked for some input from other spoonies. I wanted to know what their thoughts were as well. The NUMBER 1 thing that kept repeating was how alone each and everyone of us feel. (Note:the page is no longer up and running)
Take this list into consideration when talking to a spoonie.
I know I “don’t look sick” but I am. That’s why it’s called an invisible illness
Yes, I tend to be unreliable. And yes, I feel guilty about it. I often bail on plans or avoid making them because I’m in pain or I’ve forgotten. I’ll avoid your calls because I feel so lousy.
I know that I have changed. Pain and suffering does that to a person. I may not be as fun to hang out with, but I am still a human being with feelings
I am not lazy. It takes every ounce of energy I have to make sure my house is clean and there’s dinner on the table. I’d much rather curl up in bed for days. And sometimes I do.
I feel guilty. Maybe because I haven’t seen you in weeks. Maybe because I’m to embarrassed to text you. I have nothing new to say. I’m still not physically well. I know you get tired of hearing that things are worse or there’s no change So do I.
If you ask me how I am doing, I’ll either lie to you and tell you I’m great or you’ll get every new ache and pain in lengthy detail. Be prepared. When you tell me “your looking better” or “your walking better” it’s because I’m able to fake it just a bit better that day. Who knew I was gonna be a great actress.
Yes, I know you experience pain. No, it’s nothing like what I go through. Take the worst flu you’ve ever had and multiply it by ten. Now imagine that it never goes away. There are no meds that help and you still have to go to work or take care of your children.
I lose the use of my hands. They get numb, tingly and when my brain tells them to pick something up they malfunction and I drop it.
I also lose my vision.
Noise causes pain. The bass from music, the buzzing on a tv, YOUR VOICE. It can put me in physical pain.
Showers cause pain. It feels like thousands of bee stings on top of sun burn. No, I can’t relax in a hot bath. Hot water puts me into a flare. Then there’s the possibility I’d be stuck in the tub.
Aspartame did not cause my disease. Diet soda did not either. Changing my diet won’t help. Ive done the detox and elimination diets. Exercising wont help either. I have a hard time walking. Don’t expect me to run or lift weights. I’ve tried.
Lastly, all I want is your friendship. I don’t want to be judged or told I’m not trying hard enough. I don’t expect you to understand my issues, I expect you to love me anyway. I want you to accept me. That’s what I ask of you.