Let’s just find a place to talk…

About 25 years ago, a random thing called the internet as launched.  It was a beautful thing to behold and a great way to connect with people from around the world.  It was like the biggest coffee table you could behold and no matter how you felt, someone, somewhere was willing to listen via chat forums.

Looking back on the age of dial up, and how mundane it was, how long it took to move a little forward to 2019, and 99% of us have broadband, we have smart devices etc. So let me bring an idea to you.

Approx. 20 years ago, I was an avid MySpace user (nothing else existed online), we used it in a similar way to facebook these days.  Creating our own space for others to explore, to tap into others that were feeling like you were.  It was all legit, and we loved it.

Now that we are in 2019, I had been brewing on an idea (well two or three) and it centres around spoonies like you and I.  There are no forums apart from instagram and facebook groups that you can go in and talk about how you are doing, which in theory is great, but I don’t think of myself as my birth name on instagram, I like to remain anonymous – not because I have anything to hide, but because it makes my pain easier.

When you’re trapped in a body that is trying to implode, explode, erupt, or destroy – you pick, its nice to be able to talk openly, or by private message to see how the other person is doing, to compare how the other is feeling, to talk about how crappy it is to feel awful 24/7 and how no one person in your inner circle knows what you are going through.  It’s sad, but it’s an unfortunate truth.

Having been the pseudonym of iRAW for the last few years gave me insight into the fact I’m not alone.  Days I felt I couldn’t take much more of the pain, some spoonie would reach out with a quote, a post, or a DM and say “me too” and it makes a massive difference.  So that got me thinking.

Let’s create a forum online where we, as spoonies can help each other through the crap times.  Can applaud each other on achievements and down the line – maybe bring medical people on-board to give advice.  It won’t be an easy build, but it’s something similar to e-learning, and lets face it, after a final year project and masters project based on e-learning, this shouldn’t be as laborious, or half as frustrating.

So next week, if tmw’s consultants appointment goes to plan, I will sit down and plan it out, then start building it.  Heck if the consultant keeps me in hospital, I can grab a note book and start planning.

I am thinking of a forum where I can aggregate data to specific categories, ie RA’s get their own area, osteo another, inflammatory another etc. etc. etc.

So let the fun begin.  All feedback – hit me up on instagram.  Anyone willing to get involved for graphics, moderators etc. DM me.

Christmas, my least favourite season

The lead up to Christmas, and the day itself is for some a great thing, for me – it’s quite the opposite!  With a few years now, it makes me very, very anxious.  I’ve never got to the route of why or how… It seems to creep up on me, but knocks me every year without fail.

This week in fact, my heart rate alone has been in the high 150’s, and the tears have always been close by.  I think for many people, based on my Instagram followers, I’m not alone… it’s the best part of having a following as far as I am concerned.

WUgh the last few weeks, the anxiety has been building, leading to me not wanting to get out of the bed, not to mind the house.  Not having a car after crashing it made it a thousand times worse, it’s like caging an animal and not expecting a result.  The car was my means of getting out.  We are country bumpkins at heart, living well away from any form of town or city, with no regular bus route.

Anxiety is a killer, it takes what you know and makes you over think it, over stress it, over everything it… and then it magnifies it.

I think it is also the cause of my heart trouble.  Take today for example –  I’ve started measuring my heart rate four times a day, for two reasons, my own curiosity and to prove to the doctors that something is amiss.  About ten days ago, my heart was throbbing at 149 bpm, today we are averaging at 120bpm, to day it throws me off, and absolutely worn out with the need for sleep.  One of the side effects of a fast heart rate is the unending need for sleep, the other is always being weary of what your heart is at… It is like the feeling of an ever ticking time bomb and you can’t control the outcomes.

Imagine being in a film with one hour of find the survivor before it all goes wrong.  That’s how my heart feels, it’s constantly pounding in my chest, reminding me I don’t control it, well not really! And now and again, it beats irregularly, pumps a little faster, or beats slower and I get to feel it all.  All and I mean all!  Some days, it throws me off completely and stops me in m tracks, I’ve spent many nights laying awake with fingers on my wrist, stop watch on my phone calculating what’s happening.  Thinking of the what if’s and seeing what the internet can provide, and before you say it, yes I know the internet is not a reliable source of information, heck I build it.  But when you lay awake at 3am, feeling you heart bump twice if not three times as fast, than it scares you.  The possibilities scare you, they want if’s scare you… knowing you can only keep reiterating it to your medical team, knowing no one actually knows what you are dealing with… it all mounts up and eventually overflows… it flows out as rate, aggression, anger, hurt and much more, none of which are good for you, none of which you need up having no control over, and most of which fuels the hurt, the depression, the anxiety and the heart troubles.

The one thing at annoys me the most about this condition, ie arthritis, and isn’t the pain, the immobility it can cause or the hurt you can feel by peoples ignorance, it’s the deep seethed depression that comes with it, the what if’s, the I know how you feel, but you really truly don’t.  It the snide remarks, the fact you’re seen as an outsider, as lazy and as *forgive my language – a fuck up, its the depression, the angst, the overthinking and that’s only the internal stuff.

A Friend rightly said as of late, it would be easier to be dead than alive with this, and that is a struggle i deal with every single day, especially at Christmas.  In the space of I would say six weeks, I have contemplated ending it more than once.  Ive sat awake at night in my room dreaming up the how, the why, the letters I would let beind, the justification as to why I WANT OUT!  Being ill is the easy part, being ill and no one can see it is a thousand times worse.


For me, Christmas sucks – big time!