#spoonielife
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Key themes from this conversation:
Grief is at the center of the chronic illness experience for many people but often goes unnamed. As people lose parts of their life–capabilities, spontaneity, aspects of identity, there is inevitably a grieving process associated with those losses. Calling it “grief” helps provide narrative and understanding, and helps us feel like it’s a normal process.
Illness, and particularly energy-limiting illnesses, changes your relationship with time, since what you do today impacts your life next week, and you don’t have full control over what your capabilities will be on any given day. This reality often draws people towards cyclical or seasonal ways of living, where we recognize that, while we have some control over our energy patterns, ultimately the external and internal weather of the day are out of our control.
Groups of chronically ill and disabled people operating together can give us a model for a unique type of emergent organizing. When one person needs to rest, or can’t take on a task because the lights are too bright or any other reason, other people naturally step in with full understanding and without questioning the limitation. What would work look like in this emergent model?
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Chance of Pain 100% [ On Etsy as a tee, hoodie, and mug: https://tinyurl.com/yke4kcth ]
#chronicpain#chronicillness#fibromyalgia#heds#ehlersdanlos#rheumatoidarthritis#spoonie#spooniehumor#chronicillnesstshirt#chronicillnessmemes#spoonielife
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So this week was really good, started my new job and was doing really well in training and got to stay in a hotel.
This morning however just went bad to worse, the weather is awful, then I was in a car accident (I’m fine, the car isn’t) and now very shaken up. My final day of training g got cancelled and I’m having to wait for my dad to rescue me because I’m stranded due to not having a driveable car.
I’m ready to curl up in bed.
Hope your Fridays are going better.
Anastasia
#spoonielife#spoonie#spoonie life#ehlers danlos syndrome#chronic illness#spoonie problems#mental health#working spoonie#work#car#car accident tw
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I have been on so many yo-yo and strange diets in my time. But finally, eating a pescatarian whole food plan has really been working for me. The idea is to completely change my style of eating and work on my portion control. Cooking from scratch is time consuming but, overall it is healthier for me. I'm tired of starting over and hoping that this "new" diet will help me lose weight and decrease my pain 😢. Now, I'm just in it to decrease pain and live a healthier lifestyle. 💔 the spoonie in me wants to cry because I can remember those few hours years ago when I was pain and headache free, which seemed so long ago. GOALS, I have no other social media, so I will be using this as my journal to follow along with my progress. We shall see how this goes.
#jahtarurbanhomestead#organic#growyourown#growthmindset#eclecticwitch#spoonielife#selflove#selfcare#jahtarlifestyles#seizure disorder#disability#epilepsywarrior#hemicrania continua#weightlosssupport#weightlosschallenge#weightlossjourney#painfreeliving#wholefoodnutrition
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There's always those few moments of feeling better right after we give in and completely realign our plans (hopes, ambitions for the next few hours or days as needed) to accommodate the fact that we're sick and that it must take priority. A lot of the time, that's why we suddenly feel better when we're finally going to a medical practitioner. It's why I can suddenly make the bed and speak a single coherent sentence when five minutes ago I knew those things would crank my symptoms to the next, unhappy level.
It's the relief, the instant of recognizing that we won't have to fight so hard anymore, that we're taking ourselves utterly seriously and that we're going to be cared for, even just a little bit, even if it's by ourselves. The past few hours were, in fact, that bad. (I was going to use italics there, but I couldn't stomach looking at the slant, so I chose bold instead. That is how spoonies make our decisions.)
And sometimes, by virtue of being human, we live in inches. It's something that takes effort to accept, and that is also because I'm human and want to live as I choose. That's something else that bears talking about more than we do.
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The progression of my taste in music to deal with stress changed over time....from blues to jazz to rock to rap to country to techno to viking folk to heavy to metal to, of course, dark wave was a direct reflection of the crumbling of the society of end stage American capitalism....
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Me: *sweats profusely, starts to feel chest discomfort and begins to have blurry vision at the dinner table*
Me: *has POTS and everyone at table is aware of condition*
Apple Watch: *alerts me that my heart has been above the high heart rate threshold for over ten minutes at rest*
Me: “That makes sense.”
Me: *checks watch*
Apple Watch: “163bpm”
Him: “just take off the watch and you’ll be all better.”
Me: *exhausted from having to always explain my disorder a million times over but still getting similar responses, while heading towards another loss of consciousness*
Many minutes later:
Him: “maybe you should just stop wearing the watch.”
#potsawareness#pots#pots syndrome#postural orthostatic tachycardia syndrome#dysautomnia#dysautonomia#myalgicencephalomyelitis#me/cfs#chronically ill#chronic conditions#chronic illness#spoonie#cfs#chronic fatigue#spoonie life#spoonies#spoonie feels#spoonie problems#spoonielife#out of spoons#no spoons#spoonie things
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Got my sleeveless @titusnation shirt!! I can sit in the front again without having to run to the bathroom and puke before the opener comes on cos I got too hot!!! #spoonielife https://www.instagram.com/p/Cp20u_hup-l/?igshid=NGJjMDIxMWI=
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So my week has been pretty rough. I tweaked my back getting out of a chair and tripping on an old cat. So my mobility has been very slowly returning with hot and cold packs stretching and meds. Rest and forced shuffling to get to bathroom. How I got around before we used the hallway as a pantry was using a modified walker Ir even wheelchairs. But food Camelot sale was good. So I used already through the dryer sheets to slip shuffle my way. It is so much easier than
Anything else I have and requires the least amount of muscle movements. Too bad I couldn't shuffle down the stairs.
And to end my week
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I love how when you are chronically ill the first time getting up from bed is always a nice check in like ouch… ouch…ouch that still hurts… ouch that’s new… ouch I guess this is what we are living with today…
#chronic illness things#chronic illness humor#spoonielife#spoonie#chronic illness#chronic pain#fibromyalgia#my post
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Chronic Pain: What You Need to Know
Chronic pain is a type of persistent pain that lasts for an extended period, typically longer than three to six months, or beyond the normal healing time of an injury or illness. Unlike acute pain, which serves as a warning signal and typically resolves once the underlying cause heals, chronic pain persists and becomes a condition in itself.
Chronic pain can have various causes, including:
Injury or trauma: A previous injury or trauma that has not fully healed can lead to ongoing pain.
Medical conditions: Conditions such as arthritis, fibromyalgia, neuropathy, migraines, and back pain can result in chronic pain.
Nerve damage: Injuries or diseases affecting the nervous system can lead to chronic pain.
Infections: Certain infections can cause persistent pain, such as post-herpetic neuralgia after shingles.
Autoimmune disorders: Conditions like lupus or rheumatoid arthritis can cause ongoing pain and inflammation.
Musculoskeletal issues: Chronic pain may result from conditions affecting the muscles, bones, and joints.
The quality of life and general well-being of a person can be greatly affected by chronic pain. It can affect physical function, mental health, sleep patterns, and overall daily activities. People with chronic pain may experience fatigue, depression, anxiety, and social isolation.
Remember that seeking support from an “Online counselor” can be a valuable step in managing chronic pain and its effects on your mental and emotional well-being.
“Online counselling” platforms like TalktoAngel offer convenience and accessibility, making it easier for you to connect with professional help from the comfort of your home. However, if you have severe pain or suspect a medical emergency, it's essential to consult with a healthcare professional or your primary care doctor for a thorough evaluation and appropriate medical treatment.
#chronicpain#chronicillness#spoonie#invisibleillness#fibromyalgia#chronicfatigue#pain#spoonielife#chronicpainwarrior#autoimmunedisease#anxiety#mentalhealth#chronicillnesswarrior
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Life with ME/CFS and some other spoonie conditions can feel like this
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Right I really have fallen off the face of the earth here.
Works going well, getting used to the long shifts but I’m getting a good rest in between thanks to my shift pattern.
I started grief counselling which is a whole bundle of stuff I’m not gonna go into on here at the moment.
I have my graduation from uni next week and can’t wait.
Hopefully after all this I’ll actually be a bit more active again.
Sending spoons
-Anastasia
#spoonie#spoonie life#spoonie problems#mental health#working spoonie#spoonielife#blog update#tw: grief#dealing with grief
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I completely deactivated all of my other social media, and now I am just going to focus on my health journey over here. I am not trying to lose an enormous amount of weight. I am just trying to maintain my health, but raise my energy, and have more spoonie feel-good days. I feel like I have been having more daily pain lately, and it is resulting in mental and emotional morale decline. I am going to use this space as my journal and document all that goes on in my life for the next year. I don't have many followers here, so this will be my raw and unedited story.
#jahtarurbanhomestead#growthmindset#eclecticwitch#spoonielife#selflove#selfcare#jahtarlifestyles#homesweethome#growyourown#journal#healthylifestyle#healingfood#organic#wholefood#gardengirl#medicinal herbs
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#crohnsawareness#crohns#crohns disease#crohnswarrior#crohnsdisease#ulcerative colitis#colitiswarrior#colitis#chronic illness#chronicillnesslife#chronic pain#chronically ill#ibdawareness#ibdwarrior#ibd problems#spoonielife#spoonie#spoonieproblems#nausea#invisibleillness#chronicpainlife#hidden illness#invisibledisability#autoimmune#autoimmune disease
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