Monday!

img_8728No one ever sees me on a Monday. It’s really easy not to notice that you never see or speak to a certain person on any given regular day. No one sees me on a Thursday either. I’m not sure this is unusual.

Work people often never see each other on Sundays and church friends often never see each other mid week. It’s part of the ebb and flow of lives and routines … but most people see someone, most days of their lives.

Unless you’re on rest and Mondays and Thursdays at a minimum you spend in bed. Most people I know forget this. They forget that I write, blog, YouTube, from bed, that my editing and uploading is ALL done from bed. That even when I’m bad and sneak a day up, I’m home and in bed again by 4 or 5 pm. I eat dinner almost every night in bed.

So as humans, we forget, and we slot people into our own filters and templates…. and we scold people like me for making out we are sick when in fact we are SOOOO busy! Yes I’m busy! I’m also constantly exhausted, often desperately lonely, and all those things that I do, they require the effort of an army, the patience of a saint, and a purposeful summoning of all my resources!

So why do I do it? What’s the alternative? Do nothing! Do what I did yesterday from 2pm till midnight and do nothing but curl up in bed and watch mindless rubbish on Netflix and wallow?

There is no middle ground! There is no such thing as a “normal” day. I went out for a few hours on Saturday and again on Sunday. I loved on other people and connected with the world.

And I was bullied, and ignored, and pitied … not by everyone, but by some people, the kind of people who are self absorbed and do that to everyone. But I’m a target and usually one that can’t get away… and I lack the resources to fend them like you can.

I’m trying my butt off to make something of my life, to encourage, to make a difference, to be positive … and more often than not it confuses people!

I’m sore, always, and right now I have a huge mouth ulcer which means it even hurts to talk. I feel behind and overwhelmed by everything I want or need to do, and I HATE achieving nothing! I hate that if I walk for an hour on the walking machine my legs will hurt less in the night tonight but the energy needed will likely cost me a day of healing for my mouth. I hate that I can’t do both, that there aren’t enough spoons to go around and that I can’t boost my soul, my energy, my mood or my body by going for a real walk or a run or something other people can do.

I hate that if I can’t muster the energy to write, or edit, or achieve something else today, then I’ll feel even worse and even more behind! But if I do then the world will assume I’m “up and busy”!

But because I’m so low and my immune system is on its reserves, I have to be even more careful than usual… and anything I do with my day today could be costly!

So just a wee reminder: every day I climb a mountain. Most days it’s worth it, far too many it isn’t, and it costs me more than I have to give. Every day is painful… extremely painful physically and often emotionally! So to the lady yesterday who responded to someone else who was questioning me by interrupting with “you’re in pain, you can just say it you know, you don’t have to be brave!” THANK YOU!! And to the people who bullied me, thanks a lot! And to the people who judged me for being so busy and not getting enough rest …. well, what did our grandmothers say about “if you can’t say anything nice ….?” So I’ll leave it at that…

It’s Monday. I haven’t left bed since 2pm Sunday and I probably won’t get out until Wednesday at this rate… But I sure hope to be productive one way or another!!! Even if that looks “busy” to the world! See you on YouTube!

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To book a talk with me and discuss my schedule you can contact me on JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer:

YouTube |Blog | The Mighty | Facebook | Twitter | Pinterest | Goodreads | Amazon

@JPeaSmith
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What does EDS FEEL Like?

Sometimes things are just easier said than written. I’m so uncomfortable in front of a camera but I am getting used to it with Facebook Live because I get to say things that would take forever to write (or read). As part of EDS awareness month, on Monday I did a video on the new criteria for EDS and why they are still a good thing for me, how they empower me, even though I technically now “fail” the test.

Today I got to speak about what EDS feels like. This was particularly meaningful for me because I could bring my actual voice into the whole thing and people could hear me as I speak instead of just in their own version of my voice in their heads. But I also talk with my hands a lot and so I got to explain things like the ways in which our bodies move and why that hurts, in a way that words on a page could never do… using my fists and my arms.

I’m not sure I’m getting any better at it yet but I am learning to feel more at home now that I have stopped trying to do all the things that people say you “should” do on Facebook Live streams (like introduce yourself and brag about who you are and what you do etc). I pretty much just get into it and I am enjoying that.

So HERE are this week’s episodes and what EDS feels like. Please watch and share for EDS awareness month!

EDS Facebook Live Front RoE

PS: If you want to win a signed copy of my book “The Lion and the Peacock”, and a pair of my Zebra earrings, then watch the video or sign on for details in this month’s “no spam” newsletter by signing on HERE 🙂

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To book a talk with me and discuss my schedule you can contact me on JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer: 

@JPeaSmith

Running on Empty!

Facebook Live Front A1-3

Facebook Live. I’m lovin’ it. I started a couple of days ago with the testing which was awkward and weird but I am finding my space there slowly, and really enjoying it. I asked for questions for the next few weeks of “shows” and as I been asked a lot of questions before, through my blog and Facebook stories, as well as my Mighty Stories, I suddenly have quite a long list to keep me going for a while.

I want to do this well, so I spent a few days mulling over the list of questions and today we realised that most of the questions fall under one of four categories which are not surprisingly, quite relevant to anyone, even those without a chronic illness at all. People who could benefit from these Q&A sessions will be those who are struggling (or who know someone struggling) with a difficult season in their lives. This will include those dealing with bad health, grief, loss, or any other life change such as divorce or moving far away.

Once every two weeks, I will be doing a Facebook Live under the heading of “RUNNING ON EMPTY”. Topics for discussion will cover general topics like managing medications, getting help from those around you, negotiating specialists, and understanding your life changes. But May just happens to be EDS Awareness Month so the sessions in May will include (but be limited to) things like “What is EDS?”, “A Day in My Life”, “An EDS First Aid Kit” and so on.

Here is the schedule for the next few months ( I will update it regularly with new links and updated information as we go!) :

  • Monday, May 1st – I will be focusing on EDS because May is EDS Awareness Month and what a better way to start than that!  | New York: 2pm | London: 7pm | Johannesburg: 8pm |Sydney 4am |

 

  • Thursday, May 18th – “A Day in My Life”| New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, May 29th – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

  • Thursday, June 15th – | New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, June 26th – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

  • Thursday, July 13th – | New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, July 24th – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

  • Thursday, August 10th – | New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, August 21st – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

So pop those in your diaries or go HERE to watch this short introductory Facebook Live. At the very end, it will give you the opportunity to turn on notifications for my future Facebook Lives. You can also simply “Like” and Follow my Facebook Page and the following places to get updates and changes. Please remember to share any of my Posts across my social media platforms.

@JPeaSmith
 
“Here she comes, running, out of prison and off the pedestal: chains off, crown off, halo off, just a live woman.”  ― Charlotte Perkins Gilman