What I did on my AWOL-idays

Goodness me, I’ve missed being here! But where did I go?

Last Spring a Tai Chi mag’ asked for articles and I offered to write one about how much Tai Chi has helped me with my health issues. The tricky part was that they didn’t reply until this Winter, and you know how much pain we’re in through Winter, right? Yeouch! So I had to concentrate on writing the article as I was having far less Brain Time to write. The trouble began when I was subsequently asked a few extra questions and instead of them being practical health questions they were more about my experience and motivations…. and then my brain fell out.

The end! Eek!

I still don’t have much brain, but that’s hardly surprising coz I’ve actually been doing rather a lot while I’ve been missing my blog.

In the UK we have a cliche of the homework title that we were all had to write for when we were young children at school: “What I did on my holidays”, but as I’ve been awol I guess it’s “What I did on my awolidays”. Here’s what’s happened since I last got to write to you…

I spent a lot of time creating a CRPS FAQ for a support group that I admin’ in, and yes – it is to be uploaded here too. Most of it is now transferred to the weblog so I’ll be able to post it here soon, x

My beloved car, my companion for 7.5 years, started to keel over and I had to part with him. The Magic Dude and I have bought another but it’s not the saaaaaame!

I had lots of dentist appointments after losing an old crown from a molar tooth.

I had a haircut. That counts as ‘news’, right?! 😉

I finally got to go to a graduation ceremony for my MSc that I completed with my own CRPS research last year. The Open University do a good graduation ceremony 😀
P.S. I wore high heels across the stage… take that CRPS! Mwoohaaahaaa! Of course my wheelchair was nearby for the rest of the day, but, y’know, rawr!

I finally got to go and visit Stone Henge. Woot! As I now live on the south coast of the UK it wasn’t that far to travel and the wheelchair allowed ambling around the visitor centre and going for a cup of tea afterwards too.

Stone Henge

I went to see Giant Steve 2 at the cinema! (That’s Captain America 2, of course 😉 ). Although it was on the same day as the trip to Stone Henge (what was I thinking? Doh!) so I spent the whole time trying not to pass out!

Near-syncope at cinema

Not doing a very good job at guarding Magic Dude’s popcorn, eh?!

I finally got to start the salt tablets to see if they’d help the near-syncope at all as it’s been getting worse all year so far (more on that to come in a later post).

Lots and lots and lots of Tai Chi practice during physio’-time and in-my-head practice to strengthen those neural Tai-Chi-ing connections when I was able to do so. This was in preparation for one local and two national tournaments.

All sorts of doctors appointments for blood tests, blood pressure monitors, discussion after I ended up in Accident & Emergency (ER) one day and chasing up a nightmare referral to a local cardiologist (which still isn’t sorted). So you know, the usual!

I taught my first class of Tai Chi! Wow! My teacher was unavailable for a week so the two classes that I usually attend anyway as part of my physio’ became ones where I physio’d by teaching instead. Cor, who’d have thought eh? 🙂

I found that I have had so very horrifyingly little Brain Time that I turned to gaming in the last few weeks of the run-up to the last national tournament to let my brain and body wind down together. Magic Dude has had to replace his old laptop and he’s now got a sparkly newfangled one so we decided to finally try out the online Lord of the Rings game. 😀

I went to a concert – Seasick Steve, and he was aaaawesoooome! It was stoopid timing with the tournament stuff, but he really was ace and I really am stubborn!

Concert, Seasick Steve

I’ve spent the last few days away as poor ole Magic Dude hasn’t had any time off work for so many months (except to drive me to and from appointments and the tournaments) and I’ve been struggling with pain and near-syncope highs of 9s for many weeks now. So we got away, we saw Things, and we did Stuff.

And, in true ill-person style, I am now trying to recover from the few days that we spent away!

And now I’m back and have a huuuuge amount of things I want to do and there’s never enough time to do it all in. At least, there’s never enough time where my brain is working well enough and my pain levels are low enough to do all of the things I want to do, but you know I’ll try anyway!

More to come soon,

Hellos and hugs and bestest wishes from me,

x

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Raising awareness through the awards programme, x

Getting nominated for a blogging award is awesome! It’s not why any of us become health activists, mind you. We’re driven simply to help people with certain health conditions – to know that we’ve helped in some way is the all the reward we were hoping for and all the reward we need. But apart from making your fave health activists go all warm and melty and start claiming that “no, no, of course I’m not crying, I’ve just been cutting onions, that’s all. Honest!”, it also means that other people out there, maybe other patients who’ve been looking for us, get to hear about links to reliable websites, blogs and research papers. In the case of CRPS it also means being able to let other people out there know how to help try to avoid it developing in the first place. Wow!

I wrote recently about nominating for your fave Health Activists online as it’s the season of WEGO Health Activist Awards again. Share the love this winter. Trust me, these nominations really warm the heart because none of us do this for any return, all health activists do what they do because we want to help others. The ultimate return is that we manage to deliver writing / links / research information / chuckles that help. Helping is truly it’s own reward, anything else is extra.

So when I got nominated for a fourth award I pretty much keeled over in happy surprise!

Here’s the awards that you wonderful, lovely, kind, sparkly people have nominated me for…

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Best in Show, Fbk (2)

Wowee!

But the awards are also a wonderful way to raise awareness. CRPS, Dysautonomia and Hypermobility are more common than generally thought and there are fellow patients out there still looking for reliable information.

I have found that other bloggers I’ve met along my journey are also voting for other activists just as I have been. I love that there is no unhealthy competition, we all share the same aim – to raise awareness and help others. To help as many people as we can.

This year the first three bloggers for each award with the most endorsements automatically become finalists. Nominees can be endorsed by clicking on the button under their picture on their nominations page, (e.g. mine is here, and all other nominees are being added to the directory as well). It turns out that we can each endorse a nominee once a day, and the suggestion is that we ask our readers and friends to endorse us once a day every day! Cripes!

Of course the activists which have the most common conditions will have many more readers owing to there being many more patients. Which leaves the rarer and lesser known conditions behind.

Last year there were six finalists for each award so this year the remaining three finalists for each award will be chosen by the judges on a points system. So there is still potential for a good health activist, with good presentation and information, to get chosen by the judges.

So… I’m crossing my fingers and asking you, my lovely readers, to click on the ‘endorse’ button for any CRPS and/or Dysautonomia bloggers that have been nominated who you’d like to support for this years awards.

Big hugs and thanks from me,

x

It’s health activist nominations time!

Yes, it’s that time of year again. It’s time for the third annual health activist awards when we get to vote for all of our fave health activists / bloggers out there who have made a difference to us patients. 😀

wego-health 2013

I’ve been happily voting for bloggers, it’s so fab’ to get to share the love 😀

All you need to do is follow the link here and add the weblog (or Twitter or Facebook information depending on where they write and post), and click on the award that you are nominating them for. You can do so anonymously if you prefer. When asked for the nominee’s contact info’.. an email, Facebook page or Twitter account are all ways for WEGO to let them know that they’ve been nominated.

Of course if you want to vote for little ole me I would not complain! 😉 In fact some of you must’ve been busy as WEGO Health have informed me that I have been nominated for three awards…. wheeeeee!

You can ‘endorse’ me on my nomination page if ya like. Only one of the awards I’ve been nominated for is showing on there at the moment, though, so here’s the relevant prettification for this post…

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I started by nominating someone for a health geekery award! There’s one blogger who ‘geeks out’ at research even more than I do so I just had to get in there and vote, hehe Go on, share the love people! 😀

x

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Photo Challenge for CRPS Awareness, Day 16

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 16 – A picture of someone who inspires you

As a chronic health patient it is now par for the course that I meet even more inspirational people to add to my list of ‘wonderfuls’ from over the years. There’s something about getting dealt crummy health that makes us fight harder, find the silver lining or, if it’s well hidden, create our own flipping silver lining! 😉

Today I choose to mention a fellow blogger who applies her love of science, her medical training, her experience living with CRPS and her superbly creative and wonderfully active mind to the big jigsaw puzzle that is CRPS.

Many of us live with the condition, many of us try to find out ‘what is what’ to help us work with our doctors to figure out how to treat our individual version of the complex disease. A number of us work to share the information we find to help our fellow patients, whether through friendships, support groups, blogging, information groups or websites. Not so many have the background, the determination and the sheer ‘non-specialist’ cheek to try to help unravel the mysteries of CRPS themselves. But, as I said in a previous post, is it exactly what is useful in what is effectively an informal, multi-disciplinary, international think-tank.

The blogger in question is Isy Aweigh. And she is one of those with the high level, expert-patient savvy and determination. One of those valued thinkers, and extra special for her loving heart. In short, she’s pretty darn fab’, (but seeing as she’s my friend perhaps I’m rather biased 😉 ).

She is fab’, though! 😉

Anyone who’s visited my blog before probably knows about my penchant for Tai Chi, and possibly even seen my post about my last tournament and what it means to me as a chronically ill patient. I tend to set my sights unreasonably high to see where I can get to, rather than set my sights lower and risk inadvertently capping my own potential before I’ve even tried. Well, Isy has done the same on a mega scale, and whatever the outcome is she will learn so much about what her body can be capable of, what treatments / recuperation techniques etc work for her body. And whether she marathons her way to the original goal, or whether the goal morphs into something different to accommodate new health info’, the experience will be a huge personal journey and deserves loud enthusiastic applause every step of the way. I for one shall continue to read the inspiring exploits and insights of my treasured friend.

Here she is, the one….the only…Isyyyyy Aweeeiiiggghhh….. (and Ari the cat 🙂 )…

Ta-daaaah!

This piccy is from Isy’s blog over at Living Anyway.

(Love ya, chick, x)

Thank-you ‘Blogging’ for choosing to feature Elle and the Auto Gnome, x

Thanks you lovely peeps at the ‘Blogging’ for featuring my blog yesterday for your ‘Featured Blog Friday’. It was lovely to be acknowledged, and with such lovely and encouraging words, too. 🙂

I shared the link to my blog with the words: This blog exists to help support fellow patients of two conditions very poorly understood by doctors and often misdiagnosed and mistreated.

And ‘Blogging’ said:

“Thank you to all who have entered for a chance to be #FBF [Featured Blog Friday]… This Friday’s winner is… elleandtheautognome.wordpress.com. Filled with insight and humor, this blog is worth reading and our #FBF!!…about living with CRPS and Dysautonomia and finding joy through it. How informative and inspirational!!”

How lovely are they? *glee* They even told me that they appreciate my optimism in a most commonly difficult situation and admire the “silliness” I write about. “Stay strong, stay smiling, and keep blogging!” Darn tootin’, I will! 😀

I’ve said it before and I’ll say it again…. silliness rocks! Thanks guys, It was so lovely of you, x

Elle and the Auto Gnome

WEGO Health Activist Writers’ Month Challenge 2013

I attempted the WEGO Health Activist Writers’ Month Challenge (HAWMC) in April last year. I was trying to write one post per day for the challenge. On the 7th day I wrote about my resulting loss of brain and had to stop.

Writing a small post every day for 6 days = zombified state (minus the hankering for brains)

Writing a small post every day for 6 days = zombified state (minus the hankering for brains)

After that I wrote the occasional post but I had learnt a valuable lesson about pacing my beleagured brain as well as my inconsistently inept body.

I’ve just completed my study dissertation and so this HAWMC 2013 I have one less brain-factor to consider, and a substantial one at that, (although bear in mind that flexible study sessions at home were only a random, once in a while affair with my mostly lack of brain. Tough gig). So let’s see how I manage it this time, eh?

After writing the last bit of the dissertation I am in a major CRPS pain flare which is increasing the level of dysautonomia issues as well. So I don’t for a moment think this will be easy, or even that I can complete the full challenge and post every day of the month. It’s just not going to happen. But I do think it’s about time I got to come back to my weblog hub and spend some time hanging out with you after my study-induced hiatus. I haven’t been here as much as I’d have liked to have been. I’ve got some updating and catching up to do.

I’m going to give the HAWMC a whirl, though. I’ll try to take it carefully to avoid flare, but I know it’s going to be tough. In the same month I have a major consultant appointment, a disability benefits assessment and a physio session that I hope to spend doing Tai Chi in front of people instead of in my living room. All of these things will involve travel (as a passenger) and stress (from the challenge of managing my health in trickier circumstances than usual) which means the pain levels will rocket some more. April is going to be spent battling flares because I just have too many things in one month. Yes, three appointments in one month is (for my body) a lot to deal with and it will cause major health repercussions, (not something that I expect my assessor to comprehend in the health ‘assessment’ as I’ve been advised that none of them have any training in my complex, variable condition whatsoever. Terrified much?)

So yes, April. Not going to be an easy ride this month. The ‘assessment’ and the appointment will be causes of stress for different reasons (one because there’s no comprehension of my condition to assess my related variable functionality, and the other because of the amount of travel involved). So I’m hoping that occasional short Tai Chi physios will help me to battle through the pain, stress and dysautonomia flares, in conjunction with oodles of hot water bottle rest and gritting of teeth when the pain gets off the scale. Don’t you just hate it when you begin a ‘busy’ month (by my body’s standards) already in flare? Ah well, I like a challenge, right?!

I know that the act of writing for the blog will be a good distraction at times, and at others it will be impossible to write owing to the state of my health.

Elle and the Auto Gnome, at the laptop

To begin the April challenge whilst trying not to scream with the pain is not my ideal beginning. But it is the way it is and I will keep writing whenever I can.

So here’s to some varying themes and inevitable silliness along with many hot water bottles and cups of tea. Here we goooo…. 😉

x

Happy 1st Birthday to the Elle and the Auto Gnome blog!

Wheeeeee! A whole year…already? Wow, time flies when you’re having fun! And it is fun as well as heart-warming and indescribably amazing being on this blogging journey.

Banner, Jan, Blog's 1st birthday

Yep, it really does say One’th! 😉

I created this blog to provide information for my fellow patients on CRPS and the rarely ever spoken about overlap with Dysautonomia. I had no information for so many years, I didn’t want other people having to go without such basic and crucial information for understanding, working with and treating their condition the best we all can. Not to mention to teach those of the doctors which we meet that are less endowed with knowledge and understanding of our complex conditions than we would prefer, (and to share some useful research papers to support you in the passing on of information). xx

The blog is always ‘becoming’… There’s always new research getting printed and then useful bits of info’ to be added into my ‘What is CRPS?’ and ‘What is Dysautonomia?’ pages. So that’s ever ongoing and ever changing as the amount of research happening around the world is phenomenal. I’m a bit behind at the moment.. 2012 was a stupendous year for CRPS research in particular, especially in tying together different aspects of the biological experience, (if you have systemic CRPS then check out Schwartzman’s superb paper on my ‘Useful Links‘ page for a very handy paper indeed).

The blogging part was the bit that was new to me. I wanted to share experiences, knowledge and have a chuckle along the way, too. Who wants to read (or write) serious things all the time? 😉 And seeing as I have a laugh at the ridiculousness of the condition at times, or at situations I find myself in, or just anything really (tee hee) I wanted to share my upbeat lighter tendencies as well. Seeing as silliness is part of how I live, it’s also part of my blog too 😉

I guess you must like it as I’m utterly blown away by the visitors to the weblog. My thanks to all of you for the 9,143 visits in my first year! Wowsers!

The most popular separate page this year has been ‘What is CRPS?‘. I am so so thrilled that it is of use to you.  And I’ve been really pleased to hear that some of you have been able to put it to additional good use to show other people (including families, doctors and teachers) to allow those around you to grasp a better understanding of your condition and what you are dealing with each day. My intention in writing the page was to be useful, and it is most gratifying to hear that I have been able to help in some way. For the future: I hope to upload a downloadable version for you that is less bloggy and more professional so that you have a printable format as well. That’ll have to come after my studies are complete, though, so…after March sometime, xx

The ‘What is Dysautonomia?‘ page gets a fairly high number of visits, so I really hope that it is also proving to be useful. For the future: I hope to add more info’ from journal papers as they crop up and also create a downloadable file for this too. Once again, it’ll have to be post-studies, though, so hopefully I can get onto this for you for after March, x

There is so much I want to write about in the coming year. That little notebook I have mentioned before is chock-a-block with notes to myself about things to get online! Some are very practical, some are experiential and some are just for a bit of fun of course. I have found that really I tend to write about what occurs to me in the moment, or what someone has asked about, rather than refer to anything in the notebook to get me started. There’s so much whizzing round my brain that’s there’s never a problem with finding things to write about, it’s more about pinning myself down to write about just one thing! 😉

One of the things that has continually both astounded me and made my heart feel all warm and happy is the constant additions of flags to the list of countries on the blog’s ‘dashboard’. To receive visitors to the blog from all around the world has made me feel more connected, made the world seem that much smaller and pretty much resulted in a permanently happy expression with a tinge of disbelief! Still can’t quite get my head around the idea, I have to look at all the gorgeous flags to convince myself it’s really true. Wow, it’s so good to ‘meet’ all of you.

2013-01-29, Blog visitor map, thank-yoooouuu

For those of you who have so far felt less confident about posting messages, comments, questions or natter on here, let me reassure you that I lovelovelove the contact, the feedback, the comments, the ideas, being able to help in some way, meeting new people. The bottom line for me is that I wanted to be useful, to make some sort of a difference, but you don’t have to be a fellow patient to comment on this blog. There are readers out there with similar and overlapping health issues and readers with different health issues to me, but there are also readers out there who don’t necessarily have any severe health issues, too. Making a difference can be as specific as passing on crucial medical info’, and general as how I keep positive or as simple as making someone laugh 😀 So don’t ever think I will be less interested to hear from you, you are all part of what has kept me blogging and I value input and natter from all of you, xx

I have met wonderful fellow patients, one of whom surprised me by writing a poem about the blog, (yep, that’s you lovely Carly 😉 ), and every single one of you who I’ve met here and on the Facebook page astounds me with your strength, your humour, your determination to understand your conditions.

I’ve also recently met fantastic fellow CRPS bloggers Caf and Hope when we were all attempting the WEGO blog challenge in November. I have some friends I’d already met who, as it turned out, also blog…  like Isy Aweigh who seriously knows her CRPS stuff, and Sylvie Ghysels who is an amazing multilingual gal who is working hard at getting CRPS info’ out to the French-speaking patients among us. I love and admire them for what they do, and cheer them on loudly… <waves pom poms enthusiastically> ! And of course I’ve gotta give a heads up and thank-you to Michelle for being encouraging and supportive as I endeavoured to get the hang of blogging, I came across her fabulous Dysautonomia blog when I was looking to see whether my blog was a bit too unusual! I found out that I’m in really good company so I’m gonna remain this way! 😉 Not forgetting all of the fellow bloggers who follow this blog, thank-you all so much for your support, as I’m buried in studies there are still some of your blogs I haven’t been able to visit yet, but rest assured I’ll get there, xx

During this first year of blogging, I have written some silly posts, got a bit writer-y and heartfelt in a couple of posts, written a poem or two, taken some daft pic’s, talked about studying whilst disabled, mentioned my love of Tai Chi physio-ing a few times,…. there are all sorts of main posts I could pick from the year, but as there is a Full Archive that you can refer to I shall instead pick out…..

Some key posts for fellow patients from my first year of blogging:

A Jar of Joy! – a way to store our joys and re-live them to ease the next New Year struggle

Always get copies of your hospital notes

The weirdest thing about my health…  – the variability of my conditions

The mystery of the balloon-inducing insects  (oedema, swelling, insect bites)

McGill Pain Index, CRPS and Fibromyalgia

British disability benefits, shockingly shameful behaviour

What I take with me to my doctors appointments

Experiencing cognitive change

Temporary cyborg and wearer of an invisible (purple) cape – my visits to cardiology, & what a tilt table test is

Why I also live in Cyberspace

This Too Shall Pass

Tick…Tick…Tick…Tick…Spoon!   – The infamous Spoon Theory and link to Christine Miserando’s original creation of the theory – great for helping others to understand our limitations.

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And as if I needed any more motivation to keep doing what I do, here’s Carly’s poem that she posted to my blog page on Facebook and which promptly made me cry (in a good way!). This is why I share info’ and blog and why I have no intention of stopping…..

“Why is it I feel the way that I do?
Seams coming undone from being sewn with wet glue.
Piece myself together each time, til the end,
just to break apart and have to start from the beginning.
Living in this world you can feel so alone,
especially when the pain burns down through your bones.
It seemed like no one else could ever truly understand,
until I reached out online for a helping hand.
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“The friendship I found was never expected
searched “ice/CRPS” and then I connected
To a world of support that made me feel right at home,
lead by a fearless, silly woman… Elle and the Auto Gnome.
Her wisdom and joy have brought me such comfort,
and although we’re new friends I already love her!
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“The way she takes all of the negative things
and turns them into positive dreams!
She challenges herself and although she may fall
She gets back up and conquers it all!
Through all of her strife she never stops offering
all the help she can give to others in suffering.
What why this woman’s a hero and more
and her kind hearted spirit I’ll forever adore!”
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                                                – Carly Goebel, Oct 2012
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WEGO Health Activist Nominations

Oh my, oh my, oh my, oh myyyyyyy! I’d been contacted by WEGO Health to let me know that I’ve been nominated for the Rookie of the Year Award a wee while ago, but today I opened up my emails to find several messages from WEGO about nominations for three other awards as well and I am currently still on a floaty cloud of happy surprise!

Thank-you lovely readers for being so kind as to nominate me for several awards for WEGO’s 2012 Health Activist Awards. I am totally blown away by your kindness and your ever wonderful and heart-warming support. I cannot find the words to describe being transported from a morning of tired slogging through my rather bland porridge (I think my tastebuds may have got used to me accidentally tipping far too much cinnamon on, my hands were less wobbly today and my tastebuds were rather sorry about that!) to “Wheeeeeeeee! Oh good grief! How blummin’ lovely are theeeeey?” *wibble*

I have now been informed that not only have you nominated me for 2012 Rookie of the Year, but also for 2012 Health Activist Hero, 2012 Unsung Hero and 2012 Hilarious Health Activist! Wow! I’m totally blown away! Thank-you so much, I am challenged to find the words to adequately express my feelings as I’m still in a state of happy surprise! (With my ANS it’ll take a while for the wibbles to settle down, too, so I may as well go with it and grin like an idiot for a few hours, eh?)!

I want to say to keep voting for your fave health activists online because there are some truly amazing people that I’ve met out here in the online ‘cloud’, but the voting closed on December the 31st and so now it’s over to the WEGO Health judges to get some mega-reading in. Lawks, they’re gonna be busy! There are some amazing bloggers out there and I salute them all. I’ve met wonderful fellow bloggers and fellow patients since starting this blog and there are no words to adequately express the strength, love and beauty that is apparent in your words and actions online. I am honoured to be counted among you and I adore the support and sharing online that helps so very many patients living with a massive variety of health conditions. Each and every individual doing this makes a positive difference and has priceless value because of it, xxx

2012 WEGO Nominations

Happy New Yeeeaaar!

To you all from me, thank-you so much for visiting, commenting, and letting me know that you’ve found the info’ on this weblog useful. It means so very much to me to be able to share information and experiences with you. I have not been able to write much recently but after March you may well notice an increase in blog posts as dissertation writing will no longer have a call on my sparse brain time!

Creating and writing this blog has been an amazing experience for me. Both from the point of view of sharing info’ with fellow patients, and getting more comfortable about posting my words out in the wider world. This website is my virtual home, the hub from which I branch out and explore. This website says so much about me, but there’s more silliness, more information, more chat and pondering to come. I’m looking forward to 2013’s blogging experience and the 1st birthday of the blog at the end of January. Next year is looking exciting from where I’m sitting (under a blanket with a hot water bottle 😉 ).

Oh yes and whilst sporting some rather sparkly celebratory nail varnish!

Oh yes and whilst sporting some rather sparkly celebratory nail varnish!

So here I am raising my metaphorical glass to say cheers to you all. May you have a bright and shiny 2013 with smiles and magic moments to get you through the bumpier times, and as much tea as a person could wish for! 😉

Love and bestest wishes from me,

x