Ankylosing Spondylitis

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Ankylosing Spondylitis
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    What's New in Ankylosing Spondylitis
    Community Voices

    Hello I'd like to get some information and know your experience living with fibromyalgia! #Fibromyalgia
    I also have it, but want to know how others exspirence it 😇 even a sentence that you think describes it. :D #Autism #AnkylosingSpondylitis

    1 person is talking about this
    D. Tyler Webster

    I'm Fine, and Other Lies I've Told Myself in Life With Chronic Illness

    They say you’re not supposed to personalize physical pain, especially when it’s chronic. You shouldn’t refer to it as “my pain,” instead “the pain.” You can also give the pain a name. That way when it lingers like the last guest at a party you are able to remember the pain is in fact a guest, a guest that notoriously overstays their welcome.  I haven’t given the pain a fun name yet, primarily because I believe I’m fine. I don’t consider the pain or my experience with illness unique. Some bodies function properly with little to no intervention, and other bodies require extra attention. I am the latter. My body benefits from rationing energy, the assistance of a chic cane, and sometimes sitting in the shower. These are not the only interventions my body requires, and I don’t require them indefinitely. Along the way, I’ve become gentle with myself. During the times when a profound craving for substance-induced oblivion arises, or when I have to say no to events, or when I feel the disappointment I so eagerly avoid, I feel it. Even when it’s uncomfortable. I make sure to let it rise to the surface, make its appearance, and understand where it came from. I sit with it because I don’t delegate my rationed energy to suppression anymore, and let’s face it, it’s hard to run from things when you use a cane. I don’t believe in suffering in my circumstance. Sure, my mobility is sometimes limited and my growing pains have continued after my body reached its desired size, but I am fine. I have made coziness my religion. I have become fluent in the art of comfort while experiencing pain — mental or physical — which is practiced with surgical precision. Learning which pillow feels best under your knees and which blanket feels good on your skin during a flare is a process of trial and error that truly tests your endurance for annoyance. I have cataloged memories before the pain had clinical names. Memories where sore muscles were explained by dancing with friends or falling asleep on the floor, and the fatigue could be blamed on my insatiable hunger for new experiences. I realize now I have been swimming against the current for a while. For the majority of my life, I have been seeking the feeling of safety. I thought I found it when I left home and moved states away, or when I finally started taking anxiety medication. I even tricked myself into believing I found it in alcohol. If safety is found in something tangible, doesn’t that mean it can always be taken away? Maybe I’ve felt safe my whole life and was incapable of identifying the feeling, or it’s possible I’ll never find safety at all. Maybe I’m fine constantly seeking it, and maybe I’ll believe all the other lies I’ve told myself.

    Community Voices

    I’m new here!

    Hi, my name is taniadas. I'm here because I have been diagnosed with Ankylosing Spondylitis. I experienced pain at night in my lower torso. I am better now after yoga. I am 21 years old. how will this turn in the long run? please help.

    #MightyTogether #AnkylosingSpondylitis

    2 people are talking about this
    Community Voices
    Community Voices
    Community Voices

    How to make a hot water bottle quietly

    <p>How to make a hot water bottle quietly</p>
    1 person is talking about this
    Community Voices

    I’m new here!

    Hi, my name is John S, ChronicASJohn. I'm joining after finding an interesting profile of a Mighty member who also is a blogger about their personal experiences navigating life with a serious chronic illness, or more typically several interconnected conditions.

    #MightyTogether #Depression #ADHD #PTSD #AnkylosingSpondylitis . #disabledveteran #usmarine #asassociatedincludedconditions

    2 people are talking about this
    Community Voices

    So much stuff!!!

    I have been having a really hard time and it’s been a reallly long year for my family.
    About me I have Fibro, RA, IC/BPS, sciatica AS, DDD, SpinalFusion spinalstenosis etc..

    I have my oldest brother who had a stroke this year. We have always spoken and never had and any issues ( unlike my other siblings that’s another post).

    When I was younger my brother more than once sexually assaulted me.
    I don’t know if it actually considered that
    I was sexually assaulted by my father when I was a child and raped at 15 by an older man.

    My brother who is 20 years older than me tried to kiss me on more than one occasion this was when I was in elementary school. He I found out a few years ago was also along with my brothers and my sister were sexually assaulted by my father as well.

    So the situation is idkw but after he had his stroke I just couldn’t speak to him.
    I did only speak to him because of my mother. I did tell my mother when I was younger and I can only say she made excuses for him and begged me not to not talk to him.

    I love my mother very much and we have a very good relationship except for this issue. So I haven’t spoken to him since his stroke and I feel extremely guilty for it.
    He has been trying to get in contact with me but I have thwarted contact.

    My husband knows and of course he says I should not feel guilty and doesn’t understand why I had been talking to him all these years.
    I don’t know if I should say something to my mom who is 85. I don’t think it would do anything but upset her or cause and arguement. Or bother saying anything to my brother. Which idkw I feel bad saying anything which doesn’t make sense.
    I know I should have gone to therapy years ago but does anyone have any suggestions how I should proceed in the interim ?

    #SexualAbuseSurvivors #SexualAssault #SexualAbuse #SexualAssaultSurvivors #ChildhoodSexualAbuse #SexualTrauma #SexualAssaultAwarenessMonth #RheumatoidArthritis #Fibromyalgia #Fibro #InterstitialCystitis #sciatica #DDD #AnkylosingSpondylitis #painfulbladdersyndrome #LymeDisease #ChronicIlless #ChronicLymeDisease #LymeWarrior #Spoonie #PituitaryTumors #PituitaryTumor #SpinalFusion #gastric sleeve surgery #Anxiety #CPTSD #PTSD #PTSD

    8 people are talking about this
    Community Voices

    The grief of losing another food from my diet

    I have #IrritableBowelSyndromeIBS which also triggers #Migraine s. When I got diagnosed I was started on the low fodmap diet and after elimination and reintroduction I could eat two of the six of the fodmap groups... and fodmaps are in almost everything. Over the years since I have started reacting to more and more foods. Now I react to all of the fodmaps, and even some in "low" fodmap quantities. I'm also no starch for my #axialSpondyloarthritis (#AnkylosingSpondylitis ). So my diet has become VERY limited.

    This week I've identified another new trigger and lost yet another food: strawberries.

    It may seem like such a small thing, but my heart is broken. I love strawberries and they have been a staple in my diet since I developed IBS. Now for some reason I'm reacting to them, even in a low fodmap quantity 💔

    I struggle enough with food as it is. There is so much I can't have it's hard to find food I can eat without consequences and I'm bored of what I can eat. Strawberries were one of the few foods I still enjoyed and looked forward to eating. Now it feels like there are no treats left.

    I miss food.

    This is just another loss on the #ChronicIllness journey. And I will grieve for this one as I have all the others. And when I am done I will pick myself up and move forwards, because there's nothing else I can do 😞

    (I've been working with a functional medicine practitioner for nearly a year to try and improve my gut health and be able to eat more foods long term, which may be why this setback is quite so deeply emotionally painful.)

    7 people are talking about this
    D. Tyler Webster

    How Ankylosing Spondylitis Helped Me Learn to Love My Body

    My body was carried by a woman who when faced with adversity plants her feet and remains stable no matter the severity of the storm. It was made by a man with vigor, an insurmountable capacity to endure challenges, and the ingenuity to make a meal with a few forgotten pantry staples. Both have never cowered or run from anything — even each other — when at times they should have. Instead, they persevere, sometimes shaken, but nonetheless, moving forward. My mom’s favorite saying is, “Chapter closed.” This is typically said when something traumatic has happened and we no longer want to discuss it. We instead begin the next chapter of our lives and hope for more. I’ve found myself saying “chapter closed” after a flare, or the failure of another medication. I’ve closed many chapters recently. When I become frustrated with my body and its inability to withstand the normalcy of a full-time job, or its pain that leaves me reliant on a cane, I come back to the things I’ve inherited from the people I love. I remind myself that I embody the same vigor and willingness to persevere. Though I am flawed, I do not run or cower, I plant my feet and endure the storm and remind myself that my body is a good place to be. I will not have biological children. I wouldn’t want to pass along the pain that comes with owning a body of my particular genetic mutation. If at some point I do have a child, when they are faced with the inevitable obstacles of having a body and navigating the human condition, I hope to pass along that same vigor and willingness to preserve. Though it won’t be hereditary, it will be taught. I was never taught to love my body; for years, I found comfort in destroying it. I pushed myself to extremes, and I prided myself on the ability to endure the damage I inflicted. Maybe if I was taught to love my body, to nourish it, and speak kindly of it, I wouldn’t have sought comfort in harming it — while unbeknownst to me, it was harming itself. When your body begins to recognize its own tissue as foreign, and you’re presented with an illness that is out of your control, you become regretful of the harm you’ve inflicted on yourself. I wish I spent more time loving my natural weight instead of denying myself second helpings of my favorite meals. I wish I spent less time drinking. I wish I had spent more time being consciously grateful for my body’s abilities instead of doing my best to hinder them. I didn’t feel like my body was a good place to be then, which in retrospect is why I spent so much time being removed from it. Now, even while managing chronic illness, my body is a good place to be because I take care of it. I honor its fatigue, I support it with a cane, and I listen to its desire for a second helping of my favorite food. I am consciously grateful for my body’s abilities, even when they are limited. I can’t imagine hating a body that was created by two people’s desire to personify their love. I have the height of my grandfather, the easily tanned skin of my father, the dark features of my grandmother, and the bone structure of my mother. I see the characteristics of the people I love that weren’t assigned to my DNA in my siblings, and it seems impossible to hate my body when it is made from and shared with the people who taught me what it means to be a good person. I feel the softness of my belly, the weight of the bags under my eyes, the dull ache in my legs, and I fall asleep knowing tomorrow there is time to love the parts of myself I was unable to love today.