Mixed-media & art journal artist. Author. Sometimes-fangirl. Spoonie.
The ask box is always open for advice, questions, & to say hello.
i usually live on my blog journal girl.
22: what is the biggest thing you would like people to understand about your illness?
I really had to think about this for awhile because there are so many things. There are medical things, like what is actually happening in my body, what I feel like and deal with every single day. There are social things, that deal with making plans and what I’m capable of doing. There’s self care and invisible illness knowledge.
But the biggest thing, when I think about just doing things day by day, in business dealings and customer service and even creating art, is this:
Every day, with all that I do, I am doing my best. In fact, I will push myself to do MORE than my best, if only to relate & create & maintain relationships as close to normal as possible.
I think we all operate in a world where people generally don’t have terrible memory problems, constant pain that can eat at an attention span and keep someone stuck in bed all day. Where people can get by with a bad night’s sleep and have energy. Where painting for an hour doesn’t mean they can’t then go grocery shopping. We expect people to act a certain way.
So when I forget to answer an email from a reader or flake on class invites, or don’t post/create/diversify as much as others in my field, it isn’t from lack of trying or poor work ethic. It’s that I have a limited amount of energy and poor focus and literally do as much as I possibly can. But when measured against the output of others, I can fall short.
Don’t get me wrong - there are others with the same or similar illnesses who do amazing things. But our illnesses aren’t identical, and I’ve had awesome years and terrible years, and can’t plan things ahead. Like today, I woke up feeling awful and took two hours to get out of bed.
But I always do my best. At any given moment, I am pushing myself to reach a finish line where many others have already burst through the ribbon at the end and moved on. It took me many years to come to terms with walking my own path, and I’ve finally learned how to make my own race that doesn’t have anything to do with anyone but myself.
I am the first person to forgive a late email, canceled plans, and quiet days. You never have to feel bad about taking care of yourself or turning down a project to me. Have to leave early? I’m cool. Can’t do a swap? That’s fine. This doesn’t mean I don’t care, just that I so, so get it.
That’s what I wish I could say, that I wish I could make everyone understand. I am always trying, striving, and doing my best. And that my outside doesn’t reflect my insides…both the way my body is feeling, and the dreams I want to reach. I care. Always will. It just might take me a few days to reply.
Posted on 19 April, 2014
|1:||what have you been diagnosed with, (and possibly self diagnosed with)?|
|2:||what will you tend to do at nights, when you can't sleep?|
|3:||worst experience/side effects of a medication?|
|4:||how has your condition impacted your mental health?|
|5:||describe your social life|
|6:||hardest thing to do when you are flaring?|
|7:||your worries for the future?|
|8:||favourite comfort food?|
|9:||tell us a valuable lesson you have learnt, through being unwell?|
|10:||name 3 things that you miss, taken from health limitations?|
|11:||how old were you when you started noticing symptoms?|
|12:||biggest injustice about living with a chronic illness?|
|13:||worst advice you have been given about your health?|
|14:||what items, related to illness, could you not cope without?|
|15:||can you remember being pain free?|
|16:||do you know anyone in real life who shares your condition?|
|17:||one symptom you would love not to have?|
|18:||lovely things said to you and something ignorant/negative, about being sick?|
|19:||are your family supportive, or mostly ignorant to your suffering?|
|20:||describe the feeling after walking up/down stairs|
|21:||any natural supplements, powders or alternative treatments you would recommend others try?|
|22:||what is the biggest thing you would like people to understand about your illness?|
OMG this makes so much sense, now! If more than one person is talking, or a TV is on, I find it MUCH harder to follow the individual threads or even pick out words. It turns into a mash up of sound and I get overstimulated real fast.
I also can’t listen to books on tape. I just can’t follow what’s going on. I’ve tried and tried, but just…can’t pick up the thread. It’s both frightening and comforting to know there’s a reason this happens to me.
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