{"id":922,"date":"2025-04-11T00:03:10","date_gmt":"2025-04-11T00:03:10","guid":{"rendered":"https:\/\/mybeautifullychaoticlife.com\/?p=922"},"modified":"2025-04-15T14:23:56","modified_gmt":"2025-04-15T14:23:56","slug":"living-with-chiari-a-decade-of-strength-struggle-and-survival-%f0%9f%a4%95","status":"publish","type":"post","link":"https:\/\/mybeautifullychaoticlife.com\/living-with-chiari-a-decade-of-strength-struggle-and-survival-%f0%9f%a4%95\/","title":{"rendered":"\ud83e\udd15 Living with Chiari \u2014 A Decade of Strength, Struggle, and Survival"},"content":{"rendered":"
\n
\"\"
\u201cTHE DAY I SAID I DO.”
Just two weeks before my first brain surgery.
“Smiling through fear, holding onto joy, and choosing love in the middle of chaos.\u201d
<\/figcaption><\/figure>\n<\/div>\n\n\n

I was diagnosed with Chiari malformation in November 2013, and life hasn\u2019t been the same since.<\/p>\n\n\n\n

In January 2014, I had decompression surgery. Not because I had time or options, but because a kink in my brainstem left no choice. That surgery saved my life\u2026 but recovery?\u2026..that was a whole other story. \ud83e\udee3<\/p>\n\n\n\n

Post-op complications hit fast and hard. Recovery was anything but straightforward, and eventually I needed a VP shunt to manage pressure and cerebrospinal fluid issues. This brought a whole new level of hospital stays, uncertainty, and trying to explain it all to people who had never heard of any of it\u2026 myself included.<\/p>\n\n\n\n

Since then, life\u2019s been a mix of ups, downs, and times when I\u2019ve genuinely thought (or wished) my head would just fall off. Lately, a lot of my old symptoms have returned\u2026 the headaches, dizziness, nerve pain, balance issues, and that bone-deep fatigue only someone with Chiari (or a shunt) truly understands.<\/p>\n\n\n\n

So it\u2019s been back into the soul-destroying system that is the NHS. Trying to get proper help through the NHS has been one of the hardest parts. I\u2019m grateful for the care that does exist, but when your symptoms are flaring and appointments are months away, it\u2019s hard not to feel completely lost in the system.<\/p>\n\n\n\n

Even the small everyday decisions \u2014 like what to do with your hair \u2014 become major ones. For me, I have to keep my hair short, not because I want to, but because when it grows the nerve pain is unbearable. Something as personal and expressive as your hair becomes just another thing you have to manage around the pain.<\/p>\n\n\n\n

And although it\u2019s only<\/em> hair, I really struggled (and still do from time to time!) with the fact that the decision is made for me because of pain. As someone who used to wear beehives, updos, plaits, and everything in between\u2026 a shaved head took a little getting used to \u2014 and that\u2019s without the judgment and questions from others about why<\/em> I shave my head!<\/p>\n\n\n\n

\ud83d\udcad What I\u2019ve Learned Through It All<\/strong><\/h2>\n\n\n\n

Surgery isn\u2019t the finish line \u2014 in fact, it\u2019s just the beginning.
It\u2019s easy to think brain surgery will fix everything. But for me, it was just the start of a much longer, lifelong journey.<\/p>\n\n\n\n

Living with a shunt is like having a second full-time job.
There\u2019s always that quiet worry and the niggling questions\u2026
Is this pain normal? Is something wrong? Should I go in or just wait it out again? Has my shunt blocked?<\/em> \ud83e\udd26\u200d\u2640\ufe0f<\/p>\n\n\n\n

You constantly have to adapt. Find your new limits. Create new routines. And do whatever makes life that little bit more bearable.<\/p>\n\n\n\n

Rest more. Ask for help (still working on that one). Accept some things as the new normal.
And shift every time your health shifts.<\/p>\n\n\n\n

There are days I\u2019m angry. Days I\u2019m scared. Days I ask\u00a0why me<\/em>…And days I just feel completely over it all.<\/p>\n\n\n\n

To Anyone Else Living with Chiari, a Shunt, Both\u2026 or Any Other Chronic Illness<\/strong><\/h2>\n\n\n\n

I see you.
You\u2019re doing something incredibly hard, even when it doesn\u2019t look like it.
You\u2019re still here, still trying, still carrying a weight that no one else can fully understand \u2014 and living life!<\/em><\/p>\n\n\n\n

If you\u2019re stuck waiting for care, trying to be heard, or just getting through the day one hour at a time\u2026 just know you\u2019re not alone.<\/p>\n\n\n\n

\u270c\ud83c\udffc\ud83d\udc9c\ud83d\udcab <\/strong><\/p>\n\n\n\n

Chiari is only part of my story. I also live with cluster headaches, endometriosis, Ehlers-Danlos Syndrome (EDS), and adrenal insufficiency. Each condition brings its own challenges, and often overlaps into each other. I\u2019ll be sharing more about them in future posts.<\/p>\n\n\n","protected":false},"excerpt":{"rendered":"

I was diagnosed with Chiari malformation in November 2013, and life hasn\u2019t been the same since. In January 2014, I had decompression surgery. Not because I had time or options, but because a kink in my brainstem left no choice. That surgery saved my life\u2026 but recovery?\u2026..that was a whole other story. \ud83e\udee3 Post-op complications…<\/p>\n","protected":false},"author":1,"featured_media":906,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"nf_dc_page":"","_uag_custom_page_level_css":"","_kadence_starter_templates_imported_post":false,"_kad_post_transparent":"","_kad_post_title":"","_kad_post_layout":"","_kad_post_sidebar_id":"","_kad_post_content_style":"","_kad_post_vertical_padding":"","_kad_post_feature":"","_kad_post_feature_position":"","_kad_post_header":false,"_kad_post_footer":false,"_kad_post_classname":"","footnotes":""},"categories":[9],"tags":[],"class_list":["post-922","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-chronic-illness"],"uagb_featured_image_src":{"full":["https:\/\/mybeautifullychaoticlife.com\/wp-content\/uploads\/2025\/04\/IMG_8773_Original.jpg",1895,1895,false],"thumbnail":["https:\/\/mybeautifullychaoticlife.com\/wp-content\/uploads\/2025\/04\/IMG_8773_Original-800x800.jpg",800,800,true],"medium":["https:\/\/mybeautifullychaoticlife.com\/wp-content\/uploads\/2025\/04\/IMG_8773_Original-300x300.jpg",300,300,true],"medium_large":["https:\/\/mybeautifullychaoticlife.com\/wp-content\/uploads\/2025\/04\/IMG_8773_Original-768x768.jpg",768,768,true],"large":["https:\/\/mybeautifullychaoticlife.com\/wp-content\/uploads\/2025\/04\/IMG_8773_Original-1024x1024.jpg",1024,1024,true],"1536x1536":["https:\/\/mybeautifullychaoticlife.com\/wp-content\/uploads\/2025\/04\/IMG_8773_Original-1536x1536.jpg",1536,1536,true],"2048x2048":["https:\/\/mybeautifullychaoticlife.com\/wp-content\/uploads\/2025\/04\/IMG_8773_Original.jpg",1895,1895,false]},"uagb_author_info":{"display_name":"mc.nicknick","author_link":"https:\/\/mybeautifullychaoticlife.com\/author\/mc-nicknick\/"},"uagb_comment_info":0,"uagb_excerpt":"I was diagnosed with Chiari malformation in November 2013, and life hasn\u2019t been the same since. In January 2014, I had decompression surgery. Not because I had time or options, but because a kink in my brainstem left no choice. That surgery saved my life\u2026 but recovery?\u2026..that was a whole other story. \ud83e\udee3 Post-op complications...","_links":{"self":[{"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/posts\/922","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/comments?post=922"}],"version-history":[{"count":8,"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/posts\/922\/revisions"}],"predecessor-version":[{"id":1041,"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/posts\/922\/revisions\/1041"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/media\/906"}],"wp:attachment":[{"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/media?parent=922"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/categories?post=922"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/mybeautifullychaoticlife.com\/wp-json\/wp\/v2\/tags?post=922"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}