One Thing I Didn't Know

Continuing my (hopefully) post a day blogging in an effort to raise awareness for Invisible Illnesses I wanted to share a really awesome blog post a fellow spoonie has written.


First off, for those that don't know what a spoonie is - I can explain tomorrow! It stems from the Spoon Theory, and many of us with chronic illnesses who live by that theory are now affectionately called spoonies. :)


This woman has dysautonomia is well, so MANY things she writes resonate with me on a very real level. Since the theme this year for Invisible Illness week is "Just One", everday she is writing using the same theme, and her post yesterday was titled Just One Thing I didn't Know About Chronic Illness.


http://www.cranberryteatime.com/2014/09/just-one-thing-i-did-not-know-about.html


This is the link to her blog, which you should totally click around on, but I have also pasted some of the main parts of her post below.

I didn’t know just how hard and physically challenging it truly could be. I didn’t know how exhausting it was to do what appeared to be easy tasks.

 

I used to think that if someone had a wheelchair because of fatigue that they felt okay while sitting in the wheelchair. Now I know better. When you have a chronic illness, it can be absolutely exhausting to sit in a wheelchair.

 

I used to think that if someone was tired that they could ride in a car easily enough. You’re just sitting after all. That is resting, right? Now I know better. It takes a lot of energy and muscle strength to sit up, especially when dealing with turns and bumps in the road. When I was healthier I never realized how many muscles I was using to sit up straight in a car and not fall over when we hit a bump or turned a corner.

 

I used to think that if someone looked good and was smiling that they must be feeling well. Now I know better. It is possible to smile just because you are happy, not because you feel well. It is possible to smile even when you can hardly see because you are about to faint. It is possible to smile through headaches, intense pain, nausea, weakness, and fatigue.

This is so completely true! I feel like it's extremely hard for someone on the outside to judge me for being so completely exhausted when I've just been in my wheelchair for a long time, or riding in the car. I can't speak for all illnesses, but for dysautonomia we are always 100% fatigued. Not tired - there is a difference. I could sleep for 15 hours (yeah right!) and still wake up feeling like I haven't slept at all. I never get that reset or refresh button. And everything I do takes about 3x as much energy as a healthy person. So it may be just sitting up all day, even if I'm sitting, is exhausting.


I would like to think, as my fellow spoonie describes, that from the outside I look like a normal, happy person. That in itself some days takes an enormous amount of effort. If I acted like I felt all the time, no one would want to be around me!! So yes, many times I fake a smile and get on with my day like I feel great. There are occasions when I'm just too frustrated and feeling awful to fake it, but even then I try not to let too many people see that.


So remember today that looks can be deceiving. And the more you know about invisible illness, particularly if you have a friend/family member with one, the more you can try to wrap your head around what they go through everyday; and learn to be a better support for them.