Sunday, 28 September 2014

"Just One"

This year's Invisible Illness Awareness Week campaign was "Just One". We are all "just one", but as a chronic illness patient you are one of over one hundred million sick people the world over. You are someone, and you matter.

I missed the week this year with everything going on (as detailed in my last post), but although a little late (which is better than never) I wanted to show my support regardless as the campaign is a wonderful one and raises awareness and community spirit every single year. 


I am Just One. There will only ever be one of me. There will only ever be one of Petunia.

My chronic illnesses are fibromyalgia (with associated infrequently active costochondritis) and interstitial cystitis. Together they make up Petunia, a joke run amock comparing them to a stroppy teenager living inside me who inevitably ended up with a name which stuck.

They present difficulties. There are activities I had to give up or restrict, there are plenty of things I have to turn down on the basis of being too tired and in to much pain. I don't drink, I have a restricted diet and many every day activities are far more difficult than they should be. Sometimes they are impossible. My sickness record will inevitably never be perfect. Sometimes I am entirely housebound.

So, in some ways I am "the one who's ill". I am the one who is tired a lot and leaves every event early. I am the one who is sometimes unreliable and doesn't show up at all. I am the one viewed as awkward when I raise concern about what seem to be normal, commonplace things. I am the one with the funny diet who doesn't drink. I'm the one who has far less energy than is normal for a mid-20 year old. I am the one who sometimes can't stand the most common place of noises, and yet other times is completely fine.

Sometimes I am the one for whom existence can be painful and exhausting to the point of tears.

However, that is far from all I am.  In being "just one" we can all be far more than our illness.

I am one of the ones who is an administrator for the Chronic Illness Cat community, where we are all far more than just one. We're a community and we endeavour to laugh and poke fun just as much as possible at the colourful array of difficulties life with chronic invisible illness presents.

I am the one who creates. I am currently doing some of the artwork for a frined's table-top RPG (I promise to stop blogging and get it finished soon!), I make things for those I care about and I most recently re-created the map of Middle Earth for our new house. No matter the energy this takes, I still continue to do it.

I am the one who strives against Petunia for the things I enjoy. I am a fan of music and theatre, and we are regularly at odds over whether attendance is worthwhile. I love animals and go out of my way to spend time around them in some way shape or form. I still firmly believe that some things are worth the price inevitably paid. I am the one who makes that decision time and time again to fight and to not give in or give up.

I am the one who feels things very deeply. Instead of being embarrassed by my emotional attachment to books, films and other media and listening to the cynicism which would present this as "wrong", I have embraced this as part of necessary and healthy catharsis in my life. I am the one who has shed tears over The Silmarillion with each new re-read, and who wept for the last thirty pages or so of Steven Erikson's The Crippled God (and not for the first time in that series). I am the one who will never be embarrassed by this again.

I am the one who conisders herself lucky enough to know some of the best people in the world. I am blessed with some truly wonderful friends who make everything more bearable, both near and far. I am fortunate enough to have an incredibly supportive family.

Lastly, I am the one who strives to make her small corner of the internet a helpful, informative and cheerful place for any of that one hundred million who want to drop by and read. I am the one who will continue to do so for just as long as I can, in the knowledge that if I can comfort even one person then all the spoons which go into the blog are worth it.

I am "just one" wishing you all many spoons xxx

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