Hello Steemit! Marie-Belle here, and in my first blog post here I will just introduce myself so as you know what to expect from me.
I was born and raised in County Down and Country Antrim, in the strange little place called Northern Ireland/North of Ireland/Ulster/the six counties. I'm not fussed what you call it. I attended both non-integrated and integrated schools whilst I was there and so the Northern Irish peace process is somewhat drilled into me from various different angles. Back 'home' I am considered a ceasefire baby, this just means that I was born in the 1990's, whenever ceasefires took place and the Good Friday Agreement was made. I studied Art and Design for a time whilst living there and was also accepted to study a degree in Graphic Design and Illustration, but dropped out after a year and a semester, due to depression and wanderlust.
I found myself living in the beautiful country of Wales in the beginning of 2016. The place that I once only knew from stories by the amazing writer, Dylan Thomas was now my home. I found it easy to get work. You see, people love us leprechauns, don't they? So I was working in a bar and it was then I realized that I had Ehlers Danlos Syndrome, Hypermobility type. This was evident in my flexibility for a long time, and I had always known that my elder brother was hypermobile, but it was not until after I had a lengthy grand-mal seizure on a strangely quiet bank holiday, during an overstaffed shift, did I realize the seriousness of it. My shoulder got really messed up from all the writhing and flailing and since this was not my first seizure, I was put on medication for it, which turned me into a right zombie. Finally, nearly two years on, I have been given physiotherapy appointments. The long wait, for those of you outside the UK, is due to the ongoing stress on the National Health Service from our current government, which in my opinion is more like a dictatorship than anything else. Living with EDS and Epilepsy (and all the other co-morbidities which tag along ) is never easy, but I have found a lot of hope and it is here that I will share my tips, tricks, advice and experience in order to help my kind.
Life in the UK is extremely hard for many people, even those who are able-bodied, what to mention the long list of disabled people who have been declined a basic income. Capita and the Department for Work and Pensions are to blame, however, I think it's best to step outside of that system and refrain from giving them the satisfaction. I've got no time to waste.
On the upside:
I was given about $5 worth of BTC back in 2014 and forgot about it, seeing now what it is worth, without me having done anything I feel so content and as though with using crypto-currencies I can gain a lot of independence back and never go back to working for/below people, but rather, work with people.
I hope you all enjoy my posts and I look forward to contributing to such a brilliant platform.
This was a lovely introduction. I lived in Belfast for two years and volunteered full time with NICHS! Small steemit-world. I found it difficult to live there (depression starting out), partly due to the lack of sunshine but also because I was only 21 and hadn't confronted any of my childhood conditioning. By the end of two years I was able to enjoy it and to this day I have fondness in my heart and would love to visit again. I'd give my left arm for a cheesy, curry chip. ;)
Thanks @aprilangel. What a small world indeed. NICHS is just down the road from where I used to live. I haven't much energy or desire to return and won't be heading to see family for Christmas, but I know I'll head back at some point. Maybe I'll see you there one day for a cheesy chip! ;)
It's a plan! Now to fund the trip using crypto. 😉
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I'm pure offended. Wales, Ireland... What about sunny Scotland!! :0)
Lol Scotland cool too. Used to go to Ayr when I was wee.
Aw, Ayr! So did I, splendid stuff. It hasnt changed any, lol
Hey boom Man. I was excited to find @mariebellehelene today. She has the same connective tissue disorder and me. I'm not always so good at telling my story. It's cool to find a faulty gene sister on steemit , and I like her style. Great things to come I imagine. Welcome to steemit @mariebellehelene 😊
Well found indeed! :O)
Welcome to Steemit! I hope you settle in well. If you are looking for networking please drop I'm Minnow Support (Peace, Abundance & Liberty) network and introduce yourself. There are awesome resources!
https://discord.gg/9YhvJQ7
Welcome^^
Hi Marie-Belle, welcome to steemit.
You are now one of a very small band of about 16 active steemians in Wales.
In fact we are having the first Wales steemit meetup in the new year if you are interested. It is being held in Ceredigion.
We have a Discord channel SteemWales, if you would like to know more :
welcome to steemit @mariebellehelena
Thank you very much for your welcome @merifamoliya :)
I applaud your fierce determination and independence. I too have lived through spinal cord injury and know the value of independence.
Ta! I know, it can be all too easy to get down in the dumps and let the 'woe is me' attitude take over. I do feel cryptocurreny and the blockchain will have a great effect on those of us who are disabled/injured. The current system just doesn't cater for our needs.
I have been learning how all of my strangeness goes together to form a hEDS picture this year. Most recently I have had 2 dura tears repaired and am trying to get back up on me feet after a long period of illness.
The dislocations, joint damage and fatigue have very much immobilised me. This huge and fairly recent change in my life is what brings me to steemit. I am unable to get out much, and have given up work.
I had a seizure earlier in the year too. Dysautonomia has been a huge challenge. I am in Australia and am finding coordinating care or finding doctors who are aware of connective tissue disorders very challenging.
Steemit has been a sanctuary for me during this time.
I am glad to meet you today 😊
I would love to see you gain exposure. Using a popular but appropriate tag is important. For instance introducedyourself rather than introduction would get more views.
Health
Life
I use those when talking about my condition.
You can see the popular tags under EXPLORE in the drop down thingy.
It is frowned on if you use a tag that isn't relevant, just because it is popular, but the right one can help.
I've resteemed both of your posts. Link me the next one too, I look forward to reading it.
Awh thanks for the pointers about the tags. I really didn't know what to put in there but thought I should have put something...
Hi, welcome to Steemit.
If u have any question turn to me.
Hope we can help eachother out in the future!
I am touched!!! welcome to the steemit community @mariebellehele
welcome mariebelle
welcome to steemit @mariebellehelene hope you enjoy your time here on steemit. Greetings from Aruba :)
Welcome to Steemit-family!
Céad míle fáilte. I hope you find much success here. Have you tried treating your epilepsy with cannabis oil? I know a few people who have used it with great success.
I hope you find successful treatments for your ailments and a long and happy life.
Dia duit! I feel that my first couple of days on here have been good so feeling somewhat content. Much more variety than bakebook anyway. I have used an oil called ImproveMe Sativa CBD 1000mg and I thought it was great. It only lasted me a week, mind and cost quite a bit. I was headed back to Belfast for my sisters wedding during the summer and wanted to be on tip top form- and I was! I have smoked the stuff since my teens but I reckon my new years resolution will be to go edible all (or at least most) the way.
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Welcome to Steemit!
Thanks for sharing your story. I'm sure you'll find many people here with some common interests. It's a great platform. :)