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 πŸ˜› 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?

I'll try keep this relatively PG, as err, fam possibly reading, but the number one obvious answer is the most obvious answer (cheers for the question, horsebox). Nothing ruins the mood more than constant injury.

Besides that, I would have to say in the gym. Obviously exercise equals dislocating, so it's never of any surprise, but on one occasion I was sitting on a machine when my hip went out. Quite badly. I was in agony, trying not to scream/ make a show of myself, but also kind of laughing -the thoughts that I would not be able to get it back in, the horror of gym staff ringing an ambulance. The place was hopping. As stupid as it sounds, I was most concerned about people finding out and being mortified. I would forever be that girl that had to get paramedics to help her off the gym machine. The girl whose hip fucking fell apart, another massively clickbaity title in the Democrat, forever and ever and ever... So I sat there. In agony, panicking, and pretending that everything was fine and I'm a normal person doing normal gym stuff. Just casually taking a break, sitting on the machine, like a normal 30-ish person. I eventually got it back in and was so relieved.

Not sure if that's "inconvenient" or just tagged under embarrassment. I'm positive that there are a million other stories that I just can't recall right now! I guess if you enjoy walking, bathing, eating, breathing, then all the dislocations are in some way really inconvenient. 


...Gabe face has a blog (a very, very neglected blog), which you should all visit here:
Gabe's Odysee

I've been kicking him up the arse to get back on it, and shall continue to kick arse, so you should really subscribe to him and await further good reads.

He also does music things here:
Lunar Effect

Tasha

2010
2013
2014
I met this hot mess around 2010 through mutual friends, and our friendship has remained strong since -mostly based on the fact that we are both absolute (hot) messes, non-deliberately anti-social weirdos who hate sunlight and love naps. I.E. we both live in the realm of chronic illness and as a result, have less contact with the outside world than either of us would like. But the interstnetz and phone calls have helped keep the magic alive!

She stars with me in this most epic video of all time:


Her kids think I'm really, really cool (so we can just mark that down as fact, as they're teens and they know cool when they see it...  No, no, you don't need to ask them, they're eh, busy at the min. So just take my word on this one. Mark that shit down).

Q. What's the best thing friends and family can do to help you?

The main thing I request from friends and family is understanding. Which sounds basic in itself, but it really isn't. My condition is technically seen as non-progressive, but due to general age issues, and not receiving medical help that I need when I need it -Things are getting worse, my condition may continuing deteriorating. Each day is also different -one day I can walk, another day I can't. One day I can walk around town, do some cleaning, play with the dogs, and the next day I can barely move. I think most friends and family and even acquaintances understand my life under those conditions. They get used to those limitations. And until recently I could leave the house and travel in a car once, maybe twice a week.

But I think it's harder for people to understand progression of illnesses. I'm now at a stage that travelling is agony. And while I am in the process of putting things in place to make travel less painful, I still won't be able to visit friends weekly. And that's just that. But sudden changes are, and will, be hard for people to deal with. You get used to a friend being one way, it takes time but you get used to it -then everything changes, their illness progresses, you're probably a bit annoyed (at the illness, not them), frightened, confused. But stop and think. There is nothing they can do to change certain circumstances. It's harder for them -a million times over.

But your unwell friend or family member will understand you are finding it hard to cope with such changes. Talk to them -or sometimes even better, talk to a mutual friend who seems to be dealing with it well.

Secondly, I just want friends and family to know the basics of my condition(s). Nothing fancy, nothing overly medical, but the raw basics. Ehlers-Danlos syndrome and dysautonomia are hella confusing and complex, I know that. I don't know everything, I'm still learning every day. But if I have to repeat the very, very basic stuff, it really is tiring. Read up on the main EDS websites, or look for a YouTube video. If you are lost, ask me (or your unwell loved one) for a couple of links -I would be happy to oblige, and most disabled people would feel the same way. 


Q. Is there any "helpful" things you wish they wouldn't say or do? 

Sometimes hearing "get well soon" makes me giggle... I'm never getting well, lol, that's kind of the point. I try to give the benefit of the doubt, I think they mean maybe my current pain (if it's a bad shoulder day, for example). The old wives tales of turmeric, lemon juice, and a whole assortment of foods to eat, baste yourself in and stick up your ass, is EXTREMELY eye-rolly. Healthy people try all sorts of crazy shit. Prayer, fairy wishes, etc. I just ignore it. People mean well, but I would be lying if I said it wasn't annoying and silly and sometimes ridiculously condescending. But people are desperate and will place hope on anything -especially healthy people. Mostly people in my life are pretty cool though, and if they said anything silly I know we could laugh about it

FYI, Tasha is an expert on EDS at this stage! Seriously, the girl knows waaaaay more than I do on the subject! (She has such a dull life, the poor thing πŸ˜›). So mutual friends, feel free to pick her brain on the subject if you ever need to (pay her in cake, bitch loves cake).

She is also one creative lady, check out her Facebook page:
Tasha's Paintings

Ooooh and she'll kill me for this, but she also stars in this other film where she eats crazy shit and says crazy shit about the crazy shit she's eating:
Irish People Taste Test Canadian Poutine

Breanainn

2012
2017
Breanainn is Tasha's partner in crime, although I met him a couple of years before I met Tasha (maybe 2007/ 2008?). We lost contact, only saw each other randomly throughout the years, until himself and Tasha became close.

He's also a fellow spoonie/ disabled person, so we have many a laugh over that. We are super annoying to be around in small cafes -me with the rollator, him in the wheelchair. We take up all the space. So being in the way and annoying is kind of our thing. We are a complex and diverse bunch! And in case you're wondering, as I'm sure you are -I'd totally win in a cripple race. On that note, I realised that we have like zero photos together. Sick recluses are terrible at getting photos together apparently! However, I do have ones that I took of him, as you'll see from above.

Q. Do your dislocations get in the way of your romantic life?

Eh, I may have rephrased that one a bit... Le sigh, ya big bunch of ham childs. Ok, I'll answer (as above) but please no more related questions to anyone who would like to do part 2 of this Q&A, hahaha. Yep -I dislocate joints writing a shopping list, lifting a coffee cup, and indeed during SEX. There now, is everyone happy that I said that? Can we move forward now with our lives? πŸ˜‚ Jayyyyysus. The hip is the worst one, obviously. But ya know, it can be funny too. Disabled people all over the world have sex all the time -now everyone, that's in your head now. Yas may thank Breanainn for that!

Q. Are there any celebrities with EDS, That could help out with awareness?

Cherylee Houston is the one that first springs to mind. She plays Izzy in Coronation Street, and is also the patron of Ehlers-Danlos UK.

Other than that I've heard only hearsay really about other famous people. The thing with any hypermobility condition is that not everyone has it to the same extent -some people are flexible but rarely dislocate! So they might be only in moderate pain and never think anything of it -But other people with EDS may notice it for them. Plenty of people are also double jointed and have absolutely no pain or issues. It's important to see EDS hypermobility type on a broad spectrum, but it's also important to note that not all people who are hypermobile have an illness.

There has also been speculation about historic people such as Anne Frank and Abraham Lincoln having either EDS, Marfan's syndrome or something closely linked.

Q. Is EDS something that can be passed onto your kids?

Yes, all types of EDS are genetic. However, like all genetic conditions, it can skip generations -I have cousins who are all on different parts of the hypermobility spectrum, but neither of my parents have/ had EDS (that I know of, I do wonder about my dad who is now deceased). So anyone in my family line is at risk. In saying that, if you have a parent with EDS, then you are 50% more likely to have the EDS genes. 

As we are planning to have children soon it's something myself and Bicky have discussed at length. As hard as it is to see me in pain and unwell, I wanted to get across to him how heartbreaking it will be for us to see our child in pain, if they are affected. We have planned and thought out a lot of things around pregnancy and parenthood the last couple of years, so I think we are prepared. Plus I try to look at the positive -Knowing all the symptoms, all the early indicators, means we can identify if our sprog may have EDS. And then fight my absolute ass off to get them proper care. I've learned a few things over the last couple of years, and so at the very least early intervention will be implemented. 

Damien

2003
2005
2008
2016
Me and Damien met all fresh faced and bright eyed during our teens, I think about 16, the year being... None of your business. There's literally too many memories, laughs and tears to mention in one paragraph, but he's the son my mother wishes I was. Lol. Like seriously, she prefers him over me... Now she is reading this both laughing but denying it, and he is reading this both laughing, and well, sneering I'm sure. He loves a sneer. And a grump. Think like Roger The Alien From American Dad meets... Well that is really all he is. In all seriousness, he lives far away the last few years but I know he is only an e-mail away, and has been a big part of my EDS journey. He has watched me go from "oh that's an odd pain"/ "why is my hand hand doing that?"/ "This doesn't seem normal", to bandages and wheelchair. He's forever asking questions about my conditions, so I knew he would want to take part this blog post.

Q. Do all people with EDS have dysautonomia, or can you have EDS without dysautonomia? 

A large amount of people with Ehlers-Danlos syndrome also have some form of comorbidity, a closely liked secondary condition. And for many, that's a type of dysautonomia like POTS - Postural Orthostatic Tachycardia Syndrome.

But EDS and POTS are not the same thing, and each condition exists in their own right. Not everyone with EDS has POTS, and not everyone with POTS has EDS. While both illnesses generally cause widespread pain, EDS is a fault in collagen while dysautonomia is a fault in our autonomic nervous system (autonomic dysfunction). I.E. all the things our body does without conscious thought -breathing, digestion, heart-rate, blood pressure, and so on. Because of this, the symptoms are widespread and can seem very disconnected. Like EDS, it can be hard to diagnose -although it does not cause dislocations like EDS does. They are both multi-systematic conditions. I'm currently waiting for further testing to see if I have POTS, or another form of dysautonomia called inappropriate sinus tachycardia. My main issues (well, the ones that are most bothersome) are low BP and tachycardia.

Here's a video about POTS that I absolutely love, it explains everything about it perfectly: 


Well, this has been... interesting! I really enjoyed it though, it was fun involving my friends. I hope you've learned something new about my condition. And please share on your social media, as what we all really need is awareness. Most of my friends and family had never heard of Ehlers-Danlos syndrome -Lets change that!

I plan to do a part two of this, so if you know me and want to take part, please make contact on Facebook


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