Thursday, 17 August 2017

Friends corner: Ehlers-Danlos Q&A {part 2}

Following on from part one of friends corner: Ehlers-Danlos Q&A, here's part two with some more friends. Enjoy!

Sarah


2005                                                                                             2006


2013


2009
















2014
2015
2017
I became friends with Sarah around 2003 as we were part of a wider group of friends (scup the dirty AOH grungers, haha) and we later lived together.

I inherited the semi-famous Tubby cat (AKA Tubbz) from her, spent Christmases together (AKA St. Spickets), became godmother to her beautiful son Cian, and later devastated by his untimely passing. We've also been through many a carton of wine, mountains of white tights, bottles of Bucky, buckets of bobble hats and a million different hair colours between us!

Q. How do your illnesses effect pregnancy and child birth?

Tuesday, 15 August 2017

The wonderfully funny and annoying world of brain fog

...Or "mind mist" as I once accidentally called it!

For those who don't live in the realm of chronic illness and/ or chemotherapy, let me first explain the concept around "brain fog"/ "chemo brain"/ "mind mist", or whatever non-medical way you want to phrase it. I would even throw "baby brain" in there, as I imagine it's quite similar.

Everyone has those moments where they walk into a room and forget why, can't think of the right word for an object, have no idea where they left something important or simply lose their train of... thought. But "brain fog" (I actually went to write "brain flog there" -seriously) with illnesses is different -it's pretty much constant, and even though it can take several forms, it can be quite severe. It's more than just the normal mix-ups.

Usually there is no known cause or explanation for the phenomenon, and it's not generally medically recognised. I suppose in most cases it's something that isn't easily studied or monitored. During chemotherapy I put it down to, well -I've cancer... knowing that you have cancer is pretty distracting to say the least. Of course people with cancer have preoccupied minds.  I assume with certain conditions that effect blood flow and/ or oxygen to the brain, such as orthostatic intolerance, that the reason for confusion is a pretty obvious one. I had heard of the term "brain fog" within the chronic illness community before chemotherapy, and recognised that I had some issues (mostly forgetting where I left things!). But the first time I had actually heard a medical professional discuss it was when I was diagnosed with cancer -"chemo brain", as they called it. But other than that, doctors don't really bring it up. It's important to note that it is not a medical diagnoses, rather than an annoying, sometimes humorous symptom. If you suddenly develop this and have no idea why, please see your GP immediately so all possible underlying issues can be explored.

For me, since chemotherapy, my fog has grown to absolute mind farts. I can't recall the name of a lot of items, varies on the items from day to day of course, but it is constant. It's fine/ doesn't really effect my general life in a negative way. If anything, me and Bicky get quite a laugh from it. For others, depending on the reason for the mental blocks, it can't be very scary and worrying. The above example in the first sentence, is actually a true case -I had brain fog, about the term BRAIN FOG. Seriously.

Here are some other fine examples of what I'm talking about, from friends, fellow spoonies and fellow bloggers (as well as some of my own word bombs):

Wednesday, 9 August 2017

Friends corner: Ehlers-Danlos Q&A {part 1}

I thought it would be rather nifty to include some of my pals in a blog post, while also helping to spread awareness of Ehlers-Danlos syndrome.

Through the years I've been diagnosed with several health issues, including cancer, and so I know as things haven't been as linear as they probably should be (my diagnoses journey has actually been really and truly all over the place), that perhaps things can get mixed up. I explain symptoms and issues  of course, but my conditions (especially EDS) can seem so broad, vague and I'm sure confusing to loved ones.

As time has progressed I'm unfortunately unable to spend as much time with friends as I wish. I'm currently on house rest, as having issues with my C spine and unable to travel much (car journeys have always been painful, but recently they are excruciating). I have a couple of important trips over the next two months that I have to make, so the break is needed now in the hope that  I can indeed travel by then. And with general life getting in the way, it can be hard for friends to visit me. So I'm really excited about this segment.

I told some friends that they could ask me any question about EDS -particular to my case or just in general, something maybe they have always wanted to know or were afraid to ask, or just simply never had the opportunity to ask. No silly questions. Although silly questions are also welcomed -haha, funny is also good!

So here is post one of my friends corner: Ehlers-Danlos Q&A. These are some of the people who made me who I am... Please don't judge me too harshly based on them -I can't get out enough to make new ones 😛 And if any of my other mates out there would like to participate in part two, please contact me! E-mail: kittypotpie85@gmail.com or through my Facebook page:
Cripple Baby - Disability Blogger.

Gabriel 

2009
2010
2015
Gabe is one of Bicky's (my partner) oldest friends, although I actually met him shortly before I met Bicky. I think around 2008/ 2009.

Over the years we've bonded over our passion for garlic bread memes, love of Buckfast (you will notice that crops up as a mutual bond for most of my friends) and our shared inner spirit similar to that of a grumpy, old farm cat.

Stick'er i-tin debiscuit-tin

Q. What was the most inconvenient time that a joint has dislocated?