{"id":360,"date":"2014-07-26T19:31:25","date_gmt":"2014-07-27T02:31:25","guid":{"rendered":"http:\/\/debbiepetrina.authorsxpress.com\/?p=360"},"modified":"2014-07-26T19:31:25","modified_gmt":"2014-07-27T02:31:25","slug":"important-things-others-should-know-about-chronically-ill-people","status":"publish","type":"post","link":"https:\/\/debbiepetrina.com\/?p=360","title":{"rendered":"Important Things Others Should Know about Chronically ill People"},"content":{"rendered":"

\u201cAn Educating Tool\u201d<\/strong><\/p>\n

I was in the middle of writing a blog about what folks with MS really need from others when I came across this pin I found on Pinterest. What an extraordinary pin to share with my peers!<\/p>\n

Because I still look so good after all these years and rarely complain, people around me sometimes still<\/em>\u00a0don’t seem\u00a0to understand\u00a0my difficulties\u00a0since MS is invisible, unpredictable, and interfering. And it is probably because I am so good at the way I manage this disease, despite the fact that I use a wheelchair.\u00a0I make it look so easy, when the truth is, it can be a real bitch.<\/p>\n

For people who are just learning about how to live with a person with MS or who is chronically ill, a copy of this will be a good, educating tool.<\/p>\n

\u201cPeople with chronic pain and illness want everyone in their lives<\/strong>
\n to know these important things about them\u2026\u201d<\/strong><\/p>\n

<\/strong>
\n1. Don\u2019t be upset if I seem on edge. I do the best I can every day to be \u201cnormal\u201d. I\u2019m exhausted and sometimes I snap.<\/p>\n

2. I find it very hard to concentrate at time for a lot reasons. Pain, drugs, lack of sleep\u2026 I\u2019m sorry if I lose focus.<\/p>\n

3. Letting my loved ones and friends down by cancelling plans is heartbreaking to me. I want more than anything to be as active as you and do the things I used to do.<\/p>\n

4. My health can change daily. Sometimes hourly. There are a lot of reasons this happens. Weather, stress, flare-ups\u2026I can assure you that I hate it as much as you do.<\/p>\n

5. I don\u2019t like to whine. I don\u2019t like to complain. Sometimes I just need to vent. When this happens, I am not asking for pity or attention. I just need an ear to bend and a hand to hold.<\/p>\n

6. During rough times, I find it hard to describe how bad it is. When I say \u201cI\u2019m fine\u201d and you know I am not, it’s\u00a0okay to ask questions. Just be prepared if the flood gates open because \u201cI\u2019m fine\u201d is often code for \u201cI\u2019m trying to hold it together, but having a rough time. I\u2019m on the edge.\u201d<\/p>\n

7. If I am hurting bad enough to tell you about it without being asked, please know that it\u2019s REALLY bad.<\/p>\n

8. When you reach out to me with suggestions to help me feel better, I know that you mean well. If it was as simple as popping a new pill, eating differently or trying a different doctor, I\u2019ve most likely already tried it and was disappointed.<\/p>\n

9. All I truly want from you is friendship, love, support and understanding. It means everything to me.<\/p>\n

10. When someone gives me a pep talk, I understand the sentiment. Chronic illness just doesn\u2019t go away. I wish it did, too! I appreciate your wanting the best for me, but save the pep talk for the gym or the kids’ next volleyball game.<\/p>\n

11. It hurts worse than you can possibly imagine when I\u2019m thought of as lazy, unreliable, or selfish. Nothing is further from the truth.<\/p>\n

12. I do a lot of silly things to distract myself because any part of my life not consumed with pain is a good part.<\/p>\n

13. The simplest tasks can completely drain me. Please know that I do the best I can every day with what I have.<\/p>\n

14. Come to me with any questions you may have about my condition. I love you and would much rather tell you about this face to face without judgment.<\/p>\n

After all these years I have lived with MS, I may put this on my refrigerator at times; or give a copy of this to the forgetful numbskull or the insensitive ostrich that has their head in the sand! (Yes, I think we all have a person or two like this in our lives.) And, the next time someone says \u201cWhat\u2019s wrong<\/em> with you?!\u201d I think I will tell them to read #___.<\/p>\n

www.DebbieMS.com<\/a>
\nAuthor\/MS Counselor\/Living with MS<\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cAn Educating Tool\u201d I was in the middle of writing a blog about what folks with MS really need from others when I came across this pin I found on Pinterest. What an extraordinary pin to share with my peers! … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[16,35],"tags":[95,164,169,222,235,243,253,257,267,268,278,292,403],"class_list":["post-360","post","type-post","status-publish","format-standard","hentry","category-education","category-relationships","tag-chronic-illness-communication","tag-living-with-ms","tag-managing-ms","tag-ms-communication","tag-ms-education","tag-ms-fatigue","tag-ms-information","tag-ms-invisible-symptoms","tag-ms-peer","tag-ms-peer-to-peer","tag-ms-relationships","tag-ms-support","tag-understanding-ms"],"_links":{"self":[{"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/posts\/360","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=360"}],"version-history":[{"count":0,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=\/wp\/v2\/posts\/360\/revisions"}],"wp:attachment":[{"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=360"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=360"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/debbiepetrina.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=360"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}