{"id":408,"date":"2022-10-12T13:00:00","date_gmt":"2022-10-12T13:00:00","guid":{"rendered":"https:\/\/hsfriends.co.uk\/?p=408"},"modified":"2024-03-11T11:20:59","modified_gmt":"2024-03-11T11:20:59","slug":"knowing-when-to-take-a-step-back-when-living-with-chronic-illness","status":"publish","type":"post","link":"https:\/\/hsfriends.co.uk\/index.php\/2022\/10\/12\/knowing-when-to-take-a-step-back-when-living-with-chronic-illness\/","title":{"rendered":"Knowing When To Take a Step Back When Living With Chronic Illness"},"content":{"rendered":"

When I tell people I\u2019m sick, they usually think I mean something short-term and contagious<\/a> like the flu or a stomach bug. If I say I have a chronic illness, they picture conditions like IBS, a bad back, or chronic migraines.\u00a0<\/p>\n

The actual reality is all this and more.\u00a0Yes, and.\u00a0<\/p>\n

\u201cI\u2019m sick\u201d<\/h2>\n

I have IBS-like GI symptoms that range from mild diarrhea to agonizing intestinal pain and bloody stool. Migraines can hit me out of nowhere, obstructing my vision, garbling my speech, and sometimes lingering for more than a week. I get flu-like aches, chills, and fatigue that can last for months.\u00a0Sometimes the fatigue is so intense that I can\u2019t get out of bed, literally crawling on the floor to go to the bathroom. I get orthostatic intolerance, which means I can\u2019t stand up without feeling like puking and\/or passing out.\u00a0<\/p>\n

My connective tissues are corrupted, so all of my joints (including my spine) pop in and out of place causing pain, instability, and a heightened fight or flight response from a brain forced to be ever on alert. My mast cells, the white blood cells responsible for things like asthma and anaphylaxis, and hives, are over-active. They are triggered by things like the sun, marshmallows, and chemicals you didn\u2019t know were in your home or workplace.\u00a0<\/p>\n

And those are just the big ones.\u00a0That doesn\u2019t include the symptoms that are too small for me to report in typical doctor visits, like the tingling, numbness, and pain in my extremities caused by neuropathy and spinal instability.\u00a0Or the dry eyes and painful mouth and throat sores caused by my autoimmune comorbidity.\u00a0Or the post-exertional malaise that can make it impossible to exercise.\u00a0<\/p>\n

Sometimes it boggles my mind to try to recount everything that I mean by \u201cI\u2019m sick.\u201d\u00a0It\u2019s like a cartoon character I saw once as a kid. He was hit by a bus but somehow kept going.\u00a0Then a fridge fell out a window and crushed him. After, he was blown up by TNT explosives.\u00a0Then stung by a swarm of bees, trampled by horses, caught in a fire, and pushed off a cliff. Somehow, he kept going.<\/p>\n

And I do. I keep going. Honestly, I\u2019m terrified to stop. I\u2019m terrified that our society will label me lazy or weak or a burden or unworthy.\u00a0I\u2019m worried that I will label myself these things, or my parents, or my partner.\u00a0But I know that sometimes, my body knows when it\u2019s time to stop, and I need to listen.<\/p>\n

Ever-changing chronic illness<\/h2>\n

Another thing people don\u2019t get about complex chronic illness is that it can be simultaneously ever-changing and numbingly constant. Having diarrhea one day isn\u2019t a big deal.\u00a0Having diarrhea for fifteen years is a nightmare.\u00a0But as tough as the relentless consistency can be, I much prefer it to the fickle nature of this beast.\u00a0You never really<\/em> know what the day will bring.\u00a0Sure, I grew accustomed over the years to intestinal pain.\u00a0But would I also have a migraine? Would I have any energy or be a slug on the floor? Would I be able to eat, or would every food I tried set off my mast cells?\u00a0<\/p>\n

In Meghan O\u2019Rourke\u2019s incredible book The Invisible Kingdom<\/em><\/a>, she uses the analogy of loss of limb. If you were to lose a leg, you would certainly face challenges, but you would wake up every day knowing that you\u2019d need to adapt to life without a leg.\u00a0With complex chronic illness, it is not this simple. Who knows which of the hundred symptoms my body will pick off the menu?\u00a0Or will I be completely fine and spend the day wondering if it was all as bad as I thought because, look at me, I\u2019m fine? There\u2019s no way to communicate ahead of time with employers or friends. It\u2019s hard to get them to even believe, sometimes, when each day can look so different.<\/p>\n

Trying to get ahead of it all<\/h2>\n

In the last several years, I\u2019ve gotten to a place where I at least know what all the options are, so when they pop up throughout the day I can say \u201cI see you, I know what is causing you, and perhaps I have a trick that can help.\u201d\u00a0I live in fear of the days when a new symptom shows up and I have to go back to not knowing, to seeing specialists and rounds of testing and the trauma that gets dredged up.<\/p>\n

It happened, this month.\u00a0I started working full-time for the first time since my worst crash and subsequent diagnoses. I was excited \u2013 I\u2019ve been feeling pretty stable for a year or two \u2013 but also nervous that this would cause a flare.\u00a0What I didn\u2019t expect was for it to cause a new symptom. I started feeling nauseous and bloated. Then pain in parts of my abdomen that were not my usual.\u00a0Then eating became a battle and my belly swelled until I looked several months pregnant. It felt as if my stomach was paralyzed, that it simply had stopped emptying.\u00a0<\/p>\n

This is not an abstraction, but rather a very specific fear.\u00a0EDS can cause gastroparesis, which is paralysis of the stomach.\u00a0I\u2019ve had a doctor suggest that some of my GI issues were intestinal paresis, but this was different.\u00a0Then I started feeling dizzy and nauseous whenever on my back, something that can be caused by arterial compression conditions like MALS, another serious complication that can arise from EDS.<\/p>\n

And thus came the panic.\u00a0<\/p>\n

It\u2019s hard not to fear what\u2019s ahead<\/h2>\n

Another thing about chronic illness is that it is made bearable by forming community.\u00a0Sick friends are amazing<\/a> and spoonie communities can be literal lifesavers.\u00a0Yet being as well connected to the chronic illness community as I am also means that I know too much.\u00a0I know people with my conditions who have been bed-bound for years, use feeding tubes for nutrition, and are slowly dying. I have seen the downward spiral time and again \u2013 a mast cell flare makes eating a challenge and causes worsened joint laxity and PEM, rendering exercise impossible, which then causes POTS to worsen, which increases the brain\u2019s stress response, which worsens all symptoms and causes additional complications\u2026 it spirals on and on until you\u2019re too unstable to even receive treatments.<\/p>\n

I\u2019ve seen it happen.\u00a0It\u2019s hard not to fear that I will be next. But the fear makes everything so much worse<\/em>.\u00a0<\/p>\n

So, I reloaded my meditation app, got some extra babysitters, increased my therapy sessions, and tried really hard to be zen while ordering tests for MALS, gastroparesis, and other motility issues. I decided that the most likely cause was autonomic since my POTS was also out of control, so I doubled down on salt and water and exercised when I could.\u00a0Things seemed to clear up a bit.\u00a0I felt my stomach empty one day and was hit with a need to be in the bathroom forever, as well as a righteous hunger.<\/p>\n

After days of eating ravenously and feeling like I was going to puke if I didn\u2019t constantly have something in my mouth, I felt it shift again. My stomach was getting tighter, my belly was swelling, and it was getting harder and harder to get food down, despite the hunger.<\/p>\n

I\u2019m in the grey area.\u00a0I am not so sick that I have severe gastroparesis or MALS.\u00a0I can mostly get by, go to work, and be somewhat of a parent (with help).\u00a0But some days it\u2019s too much.\u00a0Every time I stand up I have to choke down the vomit and will my vision and control of my limbs to return.\u00a0My despair and fear creep back up. What if I can\u2019t work?\u00a0What if I\u2019m just not cut out for having a career?\u00a0Or for being a working mother? What if I have to spend another day feeling this miserable and nauseous, hungry but unable to eat?\u00a0What if I\u2019m not sick enough to test positive for the big ones like gastroparesis but too sick to be ok without treatment\/intervention?<\/p>\n

\"Ari,
Ari spending some time with her baby<\/figcaption><\/figure>\n

What\u2019s next for me<\/h2>\n

What I keep reminding myself is that just as possible is the upward spiral.\u00a0I\u2019ve seen it happen \u2013 resting and self-care calm the nervous system, allowing mast cells to chill enough to tolerate a few more foods. This new nutrition (and joy!) gives enough of a boost to introduce some new movement or activity, if not exercise.\u00a0This movement tightens up the joints and further soothes the nervous system\u2026 over time, each decrease in symptoms allows for new treatments, activities, and energy\/emotional boosts.\u00a0The dominoes fall into place until everything stabilizes.<\/p>\n

I\u2019ve seen it happen both ways.\u00a0I feel like I\u2019m on the brink of a spiral. I know that stress and fear can tip it downward, while rest and self-love<\/a> can spin things up.\u00a0It is hard, in this world, to accept that resting is the most important job sometimes.\u00a0But for myself, my family, my friends, my daughter, the students I hope to teach in the future, and the adventures I hope to enjoy, I need, so desperately, to let myself rest.<\/p>\n

And so, while I love my work here so dearly, I will be taking some time off to heal.\u00a0I can\u2019t express enough the importance of role models with chronic illness like Emily, who have openly taken this time for themselves, to help me feel powerful, rather than weak, in my decision. I am so grateful for this community<\/a> and for the time I have spent with you.\u00a0And I can\u2019t wait to come back, once I have given my body time for its upward spiral.<\/p>\n

The post Knowing When To Take a Step Back When Living With Chronic Illness<\/a> appeared first on Mighty Well Journal<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

When I tell people I\u2019m sick, they usually think I mean something short-term and contagious […]<\/p>\n","protected":false},"author":1,"featured_media":410,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[17],"tags":[],"_links":{"self":[{"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/posts\/408"}],"collection":[{"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/comments?post=408"}],"version-history":[{"count":2,"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/posts\/408\/revisions"}],"predecessor-version":[{"id":411,"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/posts\/408\/revisions\/411"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/media\/410"}],"wp:attachment":[{"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/media?parent=408"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/categories?post=408"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/hsfriends.co.uk\/index.php\/wp-json\/wp\/v2\/tags?post=408"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}