{"id":3727,"date":"2018-09-27T08:42:08","date_gmt":"2018-09-27T07:42:08","guid":{"rendered":"http:\/\/www.thinkkidneys.nhs.uk\/ckd\/?p=3727"},"modified":"2018-11-21T12:01:13","modified_gmt":"2018-11-21T12:01:13","slug":"until-it-happens-to-you","status":"publish","type":"post","link":"https:\/\/www.thinkkidneys.nhs.uk\/ckd\/blog\/until-it-happens-to-you\/","title":{"rendered":"Until it Happens to You"},"content":{"rendered":"<p>When it happens to you, your world falls apart. Maybe not completely, maybe only a little bit. But this is all there is now. It\u2019s hard to focus on anything else. Nothing matters\u2026. except surviving.<\/p>\n<p>I\u2019m sitting in front of a lovely man who\u2019s giving me loads of information and telling me how it\u2019s going to be. How I\u2019m going to be. A nurse leans on the examination couch and smiles reassuringly at me. She seems to be saying \u201cdon\u2019t worry, we\u2019ll go through everything again\u201d. I\u2019m grateful for their kindness but struggling to process what I\u2019ve heard. It\u2019s complicated.<\/p>\n<p>I go home, cry, fall apart and tell people whose help I know I will need. I read and investigate and do my google research. I realise this may not be what my doctor would like to hear, but it\u2019s what we all do these days, sometimes despite ourselves. It\u2019s hard to discern the sound information from the scaremongering and shocking stories I read. But it serves several purposes<\/p>\n<ul>\n<li>I know much more than I did before<\/li>\n<li>What I learn online supports the information I\u2019ve been given<\/li>\n<li>I have a list of good questions to ask my doctor, and<\/li>\n<li>I recognise I can live with this \u2013 it\u2019ll be ok, thousands of other people live with it, so can I.<\/li>\n<\/ul>\n<p>Armed with all the information I\u2019m good to go. I do all the right things \u2013 diet, drugs, exercise etc. And I go to my next appointment feeling more in control and positive. I ask my questions, we have a discussion. And finally \u2013 \u201cOk, so the multidisciplinary team will meet next week to talk about next steps and then we\u2019ll let you know\u201d.<\/p>\n<p>It\u2019s too late when I\u2019m sitting in Costa in the foyer to ask the most important question. The one that I should have asked. \u201cCan I come to that meeting please?\u201d I\u2019m angry with myself. What happened to \u2018no decision about me without me\u2019? Why didn\u2019t I ask? I had to think long and hard about why. My conclusions were<\/p>\n<ol>\n<li>A fear of being told \u2018no, it wouldn\u2019t be appropriate for you to be there\u2019<\/li>\n<li>That I didn\u2019t want to put the doctor on the spot \u2013 it\u2019s quite likely he\u2019s never been asked this before<\/li>\n<li>My anxiety that I might not understand what they\u2019re discussing and the jargon the NHS uses<\/li>\n<li>A fear that I\u2019m kind of on the outside of this, that I\u2019ll never really understand enough and that I\u2019ll always be the patient.<\/li>\n<\/ol>\n<p>And so, I\u2019m angry that the disease is having such an impact on my life. It\u2019s part of my life \u2013 not all of it \u2013 not my identity, not my reason for being. It\u2019s just a part. Yes, a part that demands focus and attention \u2013 but still only a part. I decide that at my next appointment I will ask what the response to the question would have been had I asked it. Would he have been brave and said \u2018yes, of course, if you\u2019d like to\u2019 or \u2018let me think about it\u2019.<\/p>\n<p>It seems to me there\u2019s a lot to be gained from allowing this to happen, to help people fully understand what\u2019s happening to them and the benefits of taking some control of their condition in order to minimise its impact. And by that, I mean physically \u2013 because if you know how to do the right thing you can help yourself. But also, emotionally and mentally \u2013 to know you are doing all the right things and that you understand as much as you possibly can, has to be a positive thing.<\/p>\n<p>It surely can\u2019t be seen as threatening by clinical staff to allow and encourage people to be as involved as possible in their own care. And surely if it\u2019s good for the individual, it\u2019s good for those delivering the service. The benefits of helping me to help myself seem to me to be enormous.<\/p>\n<p>Obviously if I\u2019m self-reliant I\u2019m in less need of you \u2013 the NHS and the whole team looking after me. That must help to cut costs as well as make me less resource intensive. If I\u2019m self-reliant, I\u2019m in control of this thing \u2013 it\u2019s less in control of me. Yes, my life has changed and yes, I have to take care of this thing, but I can do this \u2013 with some help. And you know what \u2013 a positive attitude trumps everything. I\u2019m not a patient \u2013 I refuse to be one. I\u2019m just a person living with a challenge. I\u2019ll give it nothing more than that\u2026. with your help.<\/p>\n<p>With grateful thanks to the team looking after me.<\/p>\n<p>Anon<\/p>\n","protected":false},"excerpt":{"rendered":"<p>When it happens to you, your world falls apart. Maybe not completely, maybe only a little bit. But this is all there is now. It\u2019s hard to focus on anything else. Nothing matters\u2026. except surviving. I\u2019m sitting in front of a lovely man who\u2019s giving me loads of information and telling me how it\u2019s going to be. How I\u2019m going to be. A nurse leans on&#8230;<\/p>\n","protected":false},"author":130,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"enabled":false},"version":2}},"categories":[1],"tags":[70],"class_list":["post-3727","post","type-post","status-publish","format-standard","hentry","category-blog","tag-until-it-happens-to-you"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Until it Happens to You - Chronic Kidney Disease<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.thinkkidneys.nhs.uk\/ckd\/blog\/until-it-happens-to-you\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Until it Happens to You - Chronic Kidney Disease\" \/>\n<meta property=\"og:description\" content=\"When it happens to you, your world falls apart. 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