2 October 2015

Invisible Illness Awareness Week 2015

This week is Invisible Illness Awareness Week and my body sure as hell knows it. If you read my blog or follow me on the Twitter then you will know that I have Ehlers Danlos Syndrome as well as fibromyalgia, raynauds, chronic costochondritits and a few other issues. I also currently have a cold which has sent my pain into over drive. We should be exempt from getting normal people sick on top of chronic illness. It's not fair.

So here's a little insight into being as awesome as me.

These photos are still not me on a really bad day and I still have the remnants of the days makeup on so I look even worse in person. I must remember to get some actual bad day photos. Not that that is high on my priorities when I feel like death,

Yesterday morning I dislocated my hip getting off of the toilet which is an excellent way to start your day. Luckily I didn't have to get my dad to come help me because that would have been awks but he totally would have done because he's awesome. I was then awake for the grand total of an hour before I had to go back to bed for a nap because being awake is exhausting. Seriously all I did was drink a cup of coffee and browse Twitter. That should not be nap worthy. I then woke up from my nap with a beautifully dislocated shoulder which is always a fun way to wake up.

The other day I also somehow managed to pull a muscle in my back getting into the car (clearly didnt warm up properly before doing vigorous exercise). This then sent all of my back into an angry muscle spasm making moving and even breathing horrific. Soo I had to spend the rest of the day horizontal which caused my hips to drop out of place. Why is my body so damn complicated. I've been too exhausted to do anything but also in too much pain to sleep.

Today my muscle relaxants and pain killers seem to be finally working and my back is less angry and I can move without groaning and swearing. However, one of my ribs has decided it doesn't like living where it does any more and has decided to move in with its next door neighbour which is really really uncomfortable. Soo still no breathing for me. Who needs to breathe any way?

Today is the first day I haven't had to have a nap in ages but that may be because I didn't actually make it out of bed until 11;45am. I have however managed to get a lot of blogging done which feels amazing buuut has made my back a lil angry again.

I need to shower because I can't actually remember when I washed my hair & wet wipes and flannels have been my bestie recently. You don't understand how exhausting showering is. Some days it feels like running a marathon. There is so much involved in that one small act of getting clean and I don't have any to spare. It's also freakin painful. Some days even the pressure of the water on my skin hurts.

At the moment my illness isn't that invisible because I look like actual death or zombie chic as I like to call it. However most days you can't tell (minus the lil indicator that is my wheelchair). I still look fabulous with killer eyeliner and banging lipstick and (when its washed) freakin awesome hair but my body is still falling apart. When you see me there is a 99.9% chance that I am in pain, sleep deprived and needing coffee.

Just bear that in mind when you judge someone for parking in the disabled spaces and looking fine. They could be in huge amounts of pain, be struggling to breathe, be super dizzy, want to vomit on you and you will have no idea. If one of your friends/family has a chronic illness and cancels on you a lot please remember it is not their fault. They would love to be able to do it. Maybe offer to rearrange days or even change the plans to something they can join in with like a quiet night in with films and food they can eat.

And don't forget if you need anyone to talk to or just want to know you are not alone I am always here. You can tweet me or email me or leave a comment.


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