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Hi, my name is Biospine!

BiospineBiospine Member Posts: 8 Listener
Hi everyone! Glad to be joining the community! I have hEDS an inherited genetic disorders that affects connective tissue throughout my body. Think of me like Elastigirl from the Incredibles, I have frequent dislocations, strains, sprains and subluxations. I have chronic pain and a bionic spine. Despite this I like to travel to exotic places for Nature and bird watching like Jungles and I'm currently working on highlighting the advantage to getting over and reducing barriers to help enrich life for disabled people.

Replies

  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    Hi @Biospine
    Welcome to the community! You are incredible! Please let us know if we can do anything to help! :)
    Community Champion
    Disability Gamechanger - 2019
  • chrisvanfchrisvanf Member Posts: 64 Courageous
    edited September 2018
    Eyup @Biospine and welcome to the site, Wow what an outlook, tell us more about yourself, and which jungles?, which countries? I, we, the community needs more.,  
    Edited, re-edited, bits added, bits taken out spellchecked then edited again, 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @Biospine and a very warm welcome to the community! Thank you for sharing this with us all, I am sure the community would love to hear about your travels!
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  • BiospineBiospine Member Posts: 8 Listener
    Hi all, thank you for the welcomes. I'm having a flare up right now and not up to typing. I'll be back soon.
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Welcome to the community @Biospine I look forward to chatting with you! :)
    Scope
    Senior online community officer
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @Biospine, I am sorry to hear this. I hope the flare up doesn't last long!
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  • BiospineBiospine Member Posts: 8 Listener
    Slowly getting better. Want the warm weather back it definitely helps reduce my pain. ItsI decidedly Autumnal here today!
  • BiospineBiospine Member Posts: 8 Listener
    Hi @chrisvanf, You asked what Countries and Jungles......most recently I've been to Costa Rica, India, Nicaragua and Thailand. Travelling those distances is hard and the infrastructure for disabled access is often non existent (but they are trying). The hardest roads lead to the most wonderful places! Often you will find a disabled toilet but it's just bigger, no rails or anything to help you 😆.
    I'm lucky that my pain reduces in hotter climates so not always wheelchair bound. Pavements often get washed away by wet seasons so most streets are like building sites and obstacle courses year round. You just have to suck it up and deal with the barriers ( a good carer helps). Once you see your first wild sloth it's worth it. Most of the National Parks in Costa Rica have some paved trails so you can get into the jungle even if you can't walk
    One thing I find is that people in Asia and South America can be more curious, helpful and not afraid to ask what is wrong with you than in the UK.
    Most of my travelling frustrations come from avoidable and inexcusable problems with Airlines and Tour Operators who forget me and I end up sitting on an empty plane for 30+ minutes waiting for wheelchair assistance. Or in TUI's case you will ask them for things like ground floor rooms and they just ignore your needs altogether!
  • chrisvanfchrisvanf Member Posts: 64 Courageous
    Wow, you are quite simply an inspirational person @Biospine,  to have accomplished so much already is truly remarkable, Jungles, wild animals, mountains (and TUI as well lol!).

    I hope one day when everything has settled down for me, to visit Thailand and some of the Far East countries.

    I was an HGV driver before my accident and travelled extensively through Europe, Balkans, Baltics (Estonia, Latvia and Lithuania), Scandinavian countries, North Africa, even did the US and Canada for 2 years.
    I guess when you have the nomadic gene, you just have to travel to anywhere different or new.

    I have seen quite a varied amount of animals in the wild, the air, sea, and on land, but nothing could compare to the time I heard my first Wolf howl, that was spine chilling especially when I was parked 200 mile inside a Canadian forest and 100 mile from anyone, I was in their territory, still makes me smile today thinking about it.

    You are right about people from different nationalities, the poorer the people, the friendlier and more curious they become.
      
    I wouldn't like to say if it was the tour operators that are at fault, in general, I find it's a person or people who sometimes see a disabled person as an inconvenience. 

    You should write a book about your travels, what you did and where you did it, the people, the wildlife and the challenges you faced or came across and how you managed to overcome them, a few photos of the places and people you met, and you'd have a very interesting book,
    You never know, you might inspire a few more people to challenge themselves and overcome the barriers that sometimes, they themselves have put up, and to get out and enjoy what you can for as long as you can.
       

     
    Edited, re-edited, bits added, bits taken out spellchecked then edited again, 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Biospine   Pleased to meet you . Thank you for sharing your amazing travels.

    I do think many of the community would be interested in your experiences. I am one and it is getting past the disabled barrier.

    I have never been abroad never visited countries . Would love to but have myself so many nagging doubts and anxieties.  Lot of it is money and also finding support as well.

    You are an inspiration to every one and what can be done and achieved.

    Pleasure to meet you

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • BiospineBiospine Member Posts: 8 Listener
    Wow @chrisvanf your travels sound amazing, I'd love to hear Wolves in the wild. I am writing, or trying to, about managing Chronic Pain which includes my travels how they help me overcome some of the depression and frustration that we all get from the hand that's been dealt to us.
    I am also starting a crusade about Pregabalin use, I was on it for 7 years and no-one tells you how bad it is coming off the stuff. Took me a year (GP wanted me to take longer) sweats, rage, nausea and even fits! 
    Photography is one of your hobbies - when I can hold a camera 😁. I have no shortage of travel shots....I really should start a blog!
  • BiospineBiospine Member Posts: 8 Listener
    @thespiceman I hope you can get to travel one day. My dream is to have a disability travel business (I'm not interested in getting rich off people like me so it will be just enough profit to cover my wage). 
    Travelling can be really daunting, I have cried cried quietly through at least 2 flights due to pain and a medication I was on caused severe travel sickness but I didn't know until it was too late and on a 12 hour flight. 
    I get anxious every time I travel because I am scared of having a major dislocation or another disc rupture but I remind myself I am no better off if it happens here.....when I go to A&E or have ambulances the Paramedics and Drs NEVER know what Ehlers Danlos is. Road travel can be painful so we try to go on river excursions where possible.
    Insurance is an area that needs tighter regulation, one quote for a trip was 10x dearer than the cheapest quote with the same amount of cover. There was literally NO difference in cover!
  • chrisvanfchrisvanf Member Posts: 64 Courageous
    For starters, you should definitely consider a blog @Biospine.

    I understand trying to do something while suffering a disability where chronic pain is a symptom, can be massively difficult at best, but by what you have achieved, not impossible.  
    I think that a lot of people see challenges as impossibilities, and instead of finding solutions, they just see reasons or make up excuses to not do things.

    Please tell me when you start writing your blog, or finish your book.   
      
    Edited, re-edited, bits added, bits taken out spellchecked then edited again, 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Biospine Thank you for support and kind words.

    I have travelled all over the UK buying and selling.

    I had a problems with my parents. My Mother especially I do believe had fears of foreigners. Xenophobia. Of a generation born in the thirties and any body who was around of any ethnic descent.  As well my Father had fear of flying.

    Plus racist attitudes the both of them. My Father loathing of anything German and anything that reminded him of the Germanic people or Japanese.  That is the results of scars of War time I do believe and is understandable.

    When these new stores opened Aldi and Lidl.  My Mother had to remove the labels for fear my Father finds out. Scary times.

    Growing up in that household been told and how to live. Means any opportunities for foreign travel went up in smoke.  Made loads of excuses. Add to that if I did want to go abroad would not entertain the idea to them.

    Had friends but working up to tell them going abroad with them my friends was difficult. Missed so many opportunities due to my parents.

    So fearful of anything foreign my parents ate all the time English Food and the British Diet.  Even tins of Spaghetti and other foreign food items like those Vesta meals we all ate in the Sixties and Seventies.  Never eaten.  Yet my self love Italian and food of the Med had to eat that else where secretly.

    Once had a Curry sat in my car because would not allow it in the house or Chinese.

    So that is the history. Except the one time went to Channel islands my big break and it ended up a mess.  With them my parents. Got over the flying but I forgot the Germans invaded Jersey.

    Because I also forget our hotel had Portuguese waiters what a nightmare. Plus the hotel we stayed in was full of Jewish people which I enjoyed speaking to.  Had interesting, intellectual discussions many times.

    My parents did not. Approve and especially calling me names in front of them one morning. Making reference to the name of a certain concentration camp.  Because I had lost a lot of weight at the time. Recovering from hospital. Shocked upset and annoyed .

    I lost my new friends immediately as she is and was insensitive. I had to explain to them about her and her about the Islands history.

    So there it is. Reasons why.  Am now early fifties love my Italian food, culture all that. Away from them main thing. That has mentally effected me.

    Wish you the best sorry for the long story.  Hope you do get set up a business. Doing holidays for the disabled.

    Pleasure to meet you

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
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