I am not a fan of the term. It sounds too formal and completely one-sided, as if I’m just talking at you. You come, read my blog, and then leave back to your normal life. Perhaps with a newly acquired smile on your face, or maybe just a grimace wondering what the heck I was talking about.
But I don’t want it to be like that.
I want you to come here, ask questions, be nosey and give support to one another. I want us to laugh together when I inevitably say something crazy and cry together when our favourite character in a film dies.
I want it to be ‘us’ not ‘me’.
‘Whilst I was sleeping I began to like myself.’
I was going to use this space today to write about all the symptoms which can affect people with KLS. However, this week something lovely happened.
First of all, I was lying in bed, having a really rough couple of weeks mentally, not being able to do anything and basically feeling like I had nothing to contribute to the world. I was giving up on myself physically and mentally. I was not eating anything which meant that I couldn’t get out of bed from complete lack of strength and feeling shitty. Crying myself to sleep every two hours I began to think ‘What’s the point’.
The little blue light lit up my phone (and about nearly everything else which was switched on making my room sound like a Skrillex concert). A Facebook message? I didn’t recognise the name so I read on.
People messaging me, trying give and receive support for their rare illnesses! Saying they have read my blog and wanted to get connected. Now if you know me, this is a big ‘WOAH!’. I could never imagine that I could possibly help anyone, and that they could reciprocate just as much. Flabbergasted and proud are the words I would use. And I never let myself be proud of anything I do.
This blog has given me something to aim for and most importantly, something to be PROUD of.
So honestly, thank you so, so much.
KLS has been ‘good’ to me recently, giving me the longest well period I have had in over a year. Today will mark my 3rd week episode free! Which I am elated about. I just hope an episode isn’t around the corner. But we have to stay positive and see that 3 weeks in it’s self its a massive thing to celebrate.
So today I went out for a triumphant walk in the sun.
I felt the sun on my skin (and mostly in my eyes).
If there was one bit of advice I could tell you, it would be to make the most out of all the little things because you never know when they are going to be snatched away from you.
This is Beth.
Over and out.