I’m tired.<\/p>\n
I’m over it.
\nI feel like it’s enough already.
\nI’ve risen to the challenge, I’ve tapped into my inner emotional resilience, I’ve gained invaluable coping tools and I’ve been given the gift of learning to truly appreciate what I have.
\n
\nBut now I’m \u00a0ready to be done. Ready to be done with this disease. \u00a0I’m ready to go back to my old life where I wasn’t “amazing” and insightful but rather just a regular person with regular life stresses. I want to remember what it felt like to care about losing 5 pounds to fit into my “incentive jeans” or to be able to watch a sad movie without having it hit me so hard because I relate almost too well to it.<\/p>\n
I wasn’t planning on blogging tonight, but I received a phone call today from the prosthetist informing me that my new, unbelievably expensive custom- made silicone AFOs have arrived from England and they are ready for me to come try on. I have been fantasizing about these \u00a0since I was casted for them a month ago. I have been fantasizing about the world of possibilities they may offer. They are essentially like tight silicone socks that you velcro onto your feet. And they only come up to your ankle. That means there is no hard black carbon fiber riding up the back of your lower leg. That means you can squat down, sit on the floor with your legs crossed, wear them under your socks and shoes and most importantly for me, walk around “barefoot.” I realize I’m using the “you” pronoun, probably because I’m so terrified that they won’t work for me or be the magical addition to my life that I’m hoping they will be. It doesn’t feel safe yet to believe they will do all of these things for me.<\/p>\n
I am trying to be excited, but the excitement is competing with a sense of doom. Because for now, it’s just a different kind of brace, but next time it might be an appointment to be fitted \u00a0for a cane, then a walker, then a wheelchair, a neck brace, hand controls for the car, railings for the shower and an adjustable bed to help getting up easier… These aren’t irrational fears that I have. These are the realities for so many of my fellow HIBM patients. This is what patients post \u00a0about on our Facebook support group-questions about who has used what kind of assistance device, who has noticed arthritic pain in their joints, who knows how to get disability benefits from the government and on and on.<\/p>\n
The worst part is, I am someone who is regularly forced into this intense, dark emotional space. That’s not who I am. At least it’s not who I used to be. I miss being able to be my happy, carefree self at times like these. I am still reeling from the joy that was my 20 year high school reunion over the weekend. Seeing so many wonderful old friends. Some of who didn’t even know about the direction in which my life had gone. I guess I didn’t realize that night how refreshing it was to have my HIBM self be somewhat anonymous. To be lost in my old self, hear memories about her, be reminded of her. I guess I just wish the high from that could have lasted a little bit longer…<\/p>\n","protected":false},"excerpt":{"rendered":"
I’m tired. I’m over it. I feel like it’s enough already. I’ve risen to the challenge, I’ve tapped into my inner emotional resilience, I’ve gained invaluable coping tools and I’ve been given the gift of learning to truly appreciate what I have.<\/p>\n","protected":false},"author":1,"featured_media":548,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":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":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-16","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"aioseo_notices":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/08\/rain2.jpg?fit=730%2C350&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/s5aYbC-tired","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":739,"url":"https:\/\/livingwithhibm.com\/?p=739","url_meta":{"origin":16,"position":0},"title":"Emergency Brake","author":"admin","date":"May 10, 2019","format":false,"excerpt":"The other night I dreamt that my car was speeding out of control. \u00a0I was sitting in the passenger seat. There was no one driving. I started panicking when I realized I didn\u2019t have the physical strength to get over to the driver\u2019s side. As I screamed, all I could\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/04\/nausea.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/04\/nausea.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/04\/nausea.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/04\/nausea.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":236,"url":"https:\/\/livingwithhibm.com\/?p=236","url_meta":{"origin":16,"position":1},"title":"Pain is inevitable. Suffering is a choice.","author":"admin","date":"February 15, 2016","format":false,"excerpt":"I'm coming up on 10 years of knowingly living with this disease. An entire decade. One fourth of my life. Throughout these past 10 years, I have mourned losses, adjusted to new baselines, adapted new ways of coping, advocated on behalf of patients and invested a tremendous amount of emotional\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/02\/sail.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/02\/sail.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/02\/sail.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/02\/sail.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":243,"url":"https:\/\/livingwithhibm.com\/?p=243","url_meta":{"origin":16,"position":2},"title":"Finally, I’m here. I’ve arrived!","author":"admin","date":"March 10, 2016","format":false,"excerpt":"When I was first diagnosed with HIBM (or as it's now often called, GNE myopathy) almost 10 years ago, I couldn't even say the name of the disease out loud. I could barely accept that I had it. I didn't want anything to do with it. I didn't want to\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/03\/palm.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/03\/palm.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/03\/palm.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/03\/palm.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":795,"url":"https:\/\/livingwithhibm.com\/?p=795","url_meta":{"origin":16,"position":3},"title":"Dark Corners","author":"admin","date":"April 25, 2020","format":false,"excerpt":"In moments when I am so overwhelmed by the reality of my disease, I go into extreme coping mode. This involves me zooming out as far as possible- far enough to try to intellectually conceptualize this life as simply another phase of my existence. Just a blip.\u00a0 It\u2019s a clear\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2020\/04\/img_0375-1.jpg?fit=1200%2C1067&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2020\/04\/img_0375-1.jpg?fit=1200%2C1067&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2020\/04\/img_0375-1.jpg?fit=1200%2C1067&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2020\/04\/img_0375-1.jpg?fit=1200%2C1067&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2020\/04\/img_0375-1.jpg?fit=1200%2C1067&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":169,"url":"https:\/\/livingwithhibm.com\/?p=169","url_meta":{"origin":16,"position":4},"title":"What goes up must come down","author":"admin","date":"June 5, 2015","format":false,"excerpt":"I've had a good few months. Like, really good. If you've hung out with me lately, you've probably had the fleeting thought of, \"Um, is Jen on stimulants?\" As in, I've been talking fast and thinking fast- what I jokingly refer to as feeling \"high on life.\" And though the\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/06\/balls.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/06\/balls.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/06\/balls.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2015\/06\/balls.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":66,"url":"https:\/\/livingwithhibm.com\/?p=66","url_meta":{"origin":16,"position":5},"title":"Preparing for Landing","author":"admin","date":"September 16, 2014","format":false,"excerpt":"The other day, I \u00a0picked up my older son from school and tripped and fell on the way back to the parked car. It happens sometimes.\u00a0 As we waited at a stop sign \u00a0on our way home, I saw\u00a0one of the dad's from his\u00a0kindergarten class 3 \u00a0years ago walking in\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]}],"_links":{"self":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/16","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=16"}],"version-history":[{"count":2,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/16\/revisions"}],"predecessor-version":[{"id":549,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/16\/revisions\/549"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/media\/548"}],"wp:attachment":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=16"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=16"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=16"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}