{"id":8282,"date":"2022-04-28T17:05:00","date_gmt":"2022-04-28T16:05:00","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=8282"},"modified":"2023-04-20T09:51:54","modified_gmt":"2023-04-20T08:51:54","slug":"getting-a-bit-of-my-life-back","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/getting-a-bit-of-my-life-back\/","title":{"rendered":"Getting a bit of my life back"},"content":{"rendered":"\n<p class=\"is-style-intro\">Natalie was diagnosed with Usher syndrome when she was 29 years old. She\u2019s had to work hard to rebuild her sense of self. Now, Natalie has found confidence and strength in her voice as one of our campaigner champions.&nbsp;&nbsp;<\/p>\n\n\n\n<p>I had quite a late diagnosis, so for most of my life I felt no different from anybody else. I know now that I\u2019ve got Usher syndrome type 2, which means that both my hearing and my vision are affected.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Getting a bit of my life back.\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/zKEx2LE7s0o?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p>I\u2019ve always been quite a positive person, but my confidence was really knocked.&nbsp;&nbsp;<\/p>\n\n\n\n<p>It wasn\u2019t safe for me to keep my job because I was having accidents, like tripping over. Giving up the only work I\u2019d known was such a struggle, I didn\u2019t know what I was going to do.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Finding some freedom<\/h2>\n\n\n\n<p>Fortunately, my local council were lovely. They put me in touch with Angela at Sense and it just went from there. It felt like I was talking to a family member because she was so nice and understanding.&nbsp;&nbsp;<\/p>\n\n\n\n<p>She set me up with my amazing communicator guide, Kath. She\u2019s still with me today. Kath makes me feel safe and more confident.&nbsp;&nbsp;<\/p>\n\n\n\n<p>I had become self-conscious about using a cane in public or even traveling with my disabled bus pass. It was the idea of being judged by other people that put me off.&nbsp;<\/p>\n\n\n\n<p>But Kath pushed me to get past my embarrassment and now I go out more \u2013 I&#8217;ve got some freedom. From shopping to hospital appointments, anything I need her for, she\u2019s there.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Sense showed me I wasn\u2019t alone&nbsp;<\/h2>\n\n\n\n<p>One day, Angela told me that she\u2019d recently been in touch with another young woman who was struggling with a late Usher diagnosis. I agreed to swap numbers and offer her some support.&nbsp;<\/p>\n\n\n\n<p>Her name was Leanne. We started texting and sharing our experiences and everything she said just clicked. It was strange. Leanne had felt exactly the same things I\u2019d felt. She also had the letter dropped on the doormat. I know what it\u2019s like to sit there and open that by yourself.&nbsp;<\/p>\n\n\n\n<p>It was so nice to have someone to talk to, someone who knew where you\u2019re coming from. We kept messaging and then met up on my birthday. We\u2019ve been inseparable ever since.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Campaigning gave me a voice<\/h2>\n\n\n\n<p>Through Sense, I was able to keep working to support other people like me. My first campaign was Left Out of Life, raising awareness of disabled people who\u2019ve been isolated during the pandemic.&nbsp;<\/p>\n\n\n\n<p>Being involved in this \u2013 doing recordings, being on posters \u2013 it made me feel really good. I hadn\u2019t felt like that in a long time.&nbsp;<\/p>\n\n\n\n<p>I used to be quite laid back and not talk about how things were affecting me, but that\u2019s changed. I know now that I want to use my voice to reach people who might be struggling.&nbsp;&nbsp;<\/p>\n\n\n\n<p>The work I\u2019ve done with Sense gave me a bit of normality, a bit of my life back. It means a lot.&nbsp;<\/p>\n\n\n\n<p><strong>Follow the link to find out more about Natalie\u2019s brilliant work on our campaign&nbsp;<a href=\"https:\/\/www.sense.org.uk\/get-involved\/campaign\/left-out-of-life-fighting-loneliness-among-disabled-people\/\">Left Out of Life<\/a><\/strong>. <\/p>\n","protected":false},"excerpt":{"rendered":"<p>Natalie was diagnosed with Usher syndrome when she was 29, but has found confidence and strength in her voice as one of our campaigners.\u00a0\u00a0<\/p>\n","protected":false},"author":15,"featured_media":8324,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[],"display_author":[117],"class_list":["post-8282","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","display_author-natalie"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/8282","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/15"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=8282"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/8282\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media\/8324"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=8282"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=8282"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=8282"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=8282"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}