{"id":1041,"date":"2025-08-23T21:00:56","date_gmt":"2025-08-23T19:00:56","guid":{"rendered":"https:\/\/www.kurpfalzglueck.de\/?p=1041"},"modified":"2025-08-24T12:54:39","modified_gmt":"2025-08-24T10:54:39","slug":"me-cfs-clinic-transport-donations-thank-you","status":"publish","type":"post","link":"https:\/\/www.kurpfalzglueck.de\/en\/me-cfs-klinik-transport-spenden-danke\/","title":{"rendered":"Everyday life with ME\/CFS: Between nurse no. 17, clinic and hope"},"content":{"rendered":"<h2 class=\"wp-block-heading\"><strong>New nurse<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Today a <strong>new nurse<\/strong> started with me - in the meantime the <strong>17th caregiver in just over four years<\/strong> (after Roman, Anna, Christina, Efa, Barbara, Elzbieta 1, Maria 1 - unfortunately she was diagnosed with cancer and died of it, Maria 2, Isabella, Longina, Jaczek, Violetta, Adrianna, Elzbieta 2, Valentina and Krystof). <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">For me, every change means <strong>New processes<\/strong>, much <strong>re-explain<\/strong> and again <strong>Build trust<\/strong>. Especially with <strong>severe ME\/CFS<\/strong>where every little change costs additional energy, it's a big challenge. At the same time, I am <strong>grateful for every helping hand<\/strong>.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Clinic appointment on Tuesday<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">On Tuesday we go to the <strong>Mannheim Hospital (Urology)<\/strong>. At the last appointment there was very <strong>Respectful and understanding<\/strong> dealt with my illness - I was <strong>taken seriously<\/strong>it was <strong>Consideration for my stress limits<\/strong> taken and there were <strong>no derogatory comments<\/strong>. Something that sounds self-evident to many is a challenge for people with <strong>ME\/CFS<\/strong> Unfortunately <strong>not at all a matter of course<\/strong>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Because the opposite has happened to me too. Especially with <strong>ME\/CFS<\/strong> experience many of those affected:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Lack of knowledge<\/strong> with doctors about the disease<\/li>\n\n\n\n<li><strong>lack of consideration<\/strong> to the extremely limited load capacity<\/li>\n\n\n\n<li>or even <strong>derogatory comments<\/strong> how: <em>\"You just need to do more exercise.\"<\/em><\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">It means all the more when once really <strong>Respect and understanding<\/strong> are noticeable.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Planned this time are the <strong>Tumor follow-up checks<\/strong> with <strong>CT and ultrasound<\/strong> and a <strong>Gastroscopy<\/strong>to improve the condition of my severely <strong>Oesophagus<\/strong> to check. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Here, too, my <strong>ME\/CFS<\/strong> Every examination and every stay is extremely physically demanding.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Costly transportation<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The <strong>Transportation<\/strong> is always a small <strong>Large-scale operation<\/strong>: Because of the <strong>Stairs<\/strong> at my home it needs <strong>two ambulances<\/strong>, <strong>four paramedics<\/strong>and I will be in the <strong>Sling<\/strong> worn.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Planned stay &amp; recreation<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">I will probably stay <strong>two to three nights<\/strong> in the clinic. After that, I will probably have a <strong>Have to recover for a while<\/strong> and is less able to react. Unfortunately, even medically necessary appointments can lead to <strong>Post-Exertional Malaise (PEM)<\/strong> - lead to a worsening of the symptoms.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\uf449 When I am in the clinic, <strong>I am very happy to receive news from you<\/strong>. They give me strength and help me to get through the time there a little more easily.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Thank you!<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">A large <strong>Thank you<\/strong> to all of you: Thanks to your support, the <strong><a href=\"https:\/\/www.paypal.com\/donate?campaign_id=KSK539KC573XJ\" target=\"_blank\" rel=\"noreferrer noopener\">Postcards<\/a> be fully financed for Kurpfalzgl\u00fcck<\/strong>. \uf49a This is an important signal for me - you make it possible for my project to continue to grow and more <strong>Visibility for ME\/CFS<\/strong> is created.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The next financing project is the <strong><a href=\"https:\/\/www.kurpfalzglueck.de\/en\/donation-for-me-cfs\/\" target=\"_blank\" rel=\"noreferrer noopener\">annual operating costs<\/a><\/strong> to.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/www.kurpfalzglueck.de\/en\/donation-for-me-cfs\/\" target=\"_blank\" rel=\"noreferrer noopener\"><img loading=\"lazy\" decoding=\"async\" width=\"856\" height=\"457\" src=\"https:\/\/www.kurpfalzglueck.de\/wp-content\/uploads\/2025\/08\/image.jpg\" alt=\"\" class=\"wp-image-1045\" srcset=\"https:\/\/www.kurpfalzglueck.de\/wp-content\/uploads\/2025\/08\/image.jpg 856w, https:\/\/www.kurpfalzglueck.de\/wp-content\/uploads\/2025\/08\/image-300x160.jpg 300w, https:\/\/www.kurpfalzglueck.de\/wp-content\/uploads\/2025\/08\/image-768x410.jpg 768w, https:\/\/www.kurpfalzglueck.de\/wp-content\/uploads\/2025\/08\/image-18x10.jpg 18w\" sizes=\"auto, (max-width: 856px) 100vw, 856px\" \/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">If you have any feedback, would like to share your own experiences with ME\/CFS or just want to say hello, feel free to write to me via the comments function or in person, regardless of the channel.<\/p>","protected":false},"excerpt":{"rendered":"<p>Four rescuers, a sling, stairs full of effort. A view of a clinic visit with ME\/CFS.<\/p>","protected":false},"author":3,"featured_media":1042,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[16,14],"tags":[23,77,87,84,85,74,75,26,79,21,22,44,71,72,73,43,86,82,47,80,83,81,76,78],"class_list":["post-1041","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-mein-leben-mit-me-cfs","category-status-update","tag-chronisches-fatigue-syndrom","tag-ct","tag-dankeschoen","tag-erholung","tag-hoffnung","tag-klinikaufenthalt","tag-klinikum-mannheim","tag-kurpfalzglueck","tag-magenspiegelung","tag-me-cfs","tag-myalgische-enzephalomyelitis","tag-pem","tag-pflege","tag-pflegerin","tag-pflegewechsel","tag-post-exertional-malaise","tag-postkarten","tag-rettungswagen","tag-sichtbarkeit","tag-speiseroehre","tag-tragetuch","tag-transport","tag-tumor-nachkontrolle","tag-ultraschall"],"featured_image_src":"https:\/\/www.kurpfalzglueck.de\/wp-content\/uploads\/2025\/08\/e3ddf2e8-bce1-4290-a6e3-96c98ad90501.jpg","author_info":{"display_name":"Fabian","author_link":"https:\/\/www.kurpfalzglueck.de\/en\/author\/fajamir\/"},"jetpack_featured_media_url":"https:\/\/www.kurpfalzglueck.de\/wp-content\/uploads\/2025\/08\/e3ddf2e8-bce1-4290-a6e3-96c98ad90501.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/posts\/1041","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/comments?post=1041"}],"version-history":[{"count":7,"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/posts\/1041\/revisions"}],"predecessor-version":[{"id":1051,"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/posts\/1041\/revisions\/1051"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/media\/1042"}],"wp:attachment":[{"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/media?parent=1041"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/categories?post=1041"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.kurpfalzglueck.de\/en\/wp-json\/wp\/v2\/tags?post=1041"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}