chronicallyill

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    Proved My Doctor Wrong

    For nearly a year, I have complained to my doctor about pressure and pain where my liver is located and he finally gave me an ultrasound, he didn’t really want to because he didn’t think anymore was wrong, but I knew something was and definitely wasn’t normal. The results came back and I have a fatty liver and gallstones. The blood test and urine test came back that my liver has a little damage to it. He’s finally taking me serious after the test results came back. Before he always brushed me off. I hate that I had to go a year with the pressure, pain, and constant appointments for him to finally do something just to find out I was right the whole time. I lost a year of trying to reverse my liver before it’s too late and goes into a much bigger/worse problem and that I have gallstones. I knew the pain wasn’t from my Fibromyalgia… #FattyLiver #gallstones #chronicallyill #ChronicPain #doctorsdontlisten

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    #enableddisabled

    To every doctor I've dealt with throughout this whole process: YOU CAN'T PUT A PRICE ON PEACE OF MIND

    ...And I don't appreciate the social hierarchy gatekeeping.

    #chronicallyill #enableddisabled #TheMighty #ijustworkharder

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    Thankyou, and an update

    Thankyou everyone who offered their support when I posted about my normal MRI and frustration from no answers. I went through the same before almost 3 years ago, and it brings back those memories.

    Where I live in the UK, my healthcare depends on the NHS, and I’ve had no less than 3 hospital referrals in 3 months, and I’ve had countless hospitalisations and doctors appointments over the past year. It makes me feel incredibly guilty, and also in a way just tired.

    I’m tired of feeling ill. I’m tired of gaining yet another issue, or something getting worse. I’m tired of being a bit of a medical mystery with problems. It makes me feel like it’s just health anxiety causing stuff, even though I physically see the symptoms for some problems, have it down on paper and/or have symptoms that make it impossible to function properly because of other problems. I have to keep reminding myself that it is real, and my body can’t fake results for tests that aren’t normal.

    I keep comparing myself to years ago. I would never see the doctors, and when I did they always found something wrong. And now it’s to the point where I don’t want to see the doctors and just want to deal with stuff, because I know it won’t kill me, it just depletes my spirit.

    I don’t know how much more of it I can take. And it’s why my mind doesn’t want to fight for answers after a normal MRI. I am just so tired of it. And I am also just fed up of using NHS resources for no real result or improvement in my conditions. Someone else could have both instead.

    I tried looking into private health insurance, but my amount of medical conditions makes me ineligible for treatment for those. And it’s also expensive. For the first time in 6 years I don’t even have a job, and my benefits have stopped meaning that all my adjustments etc because of my disability now come out of my own pocket/ will eventually have to stop.

    Being young is a blessing, but also a curse when it comes to being chronically ill. It’s a blessing because my mind and body can/ should be able to deal with it better, and it can also handle all the tests and appointments and surgeries that I’ve had/ will have to have. It’s a curse because I know things don’t typically get better or go away, and the idea of having to deal with these issues for the next 50+ years scares me, especially as they’ll likely get worse or I’ll get more problems and it’ll make it unbearable.

    Sorry for the mess this post is. It’s 6am and my brain is trying to fight a headache.

    #ChronicPain #ChronicIllness #chronicallyill #Pain #NHS #young #Thoughts #MentalHealth #tired

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    Socks Are The New Manolos

    Sex and the City’s Carrie Bradshaw may have spent much of her time running around New York City in her Choos and Manolo Blahniks, but she also wisely once said “Maybe the best any of us can do is not to quit, play the hand we’ve been given, and accessorize the outfit we got.”

    Taking these words of wisdom and applying them to my limited spoonie life: I’ve found that the best accessory to pyjamas and lounge wear, is socks.

    I have fun socks. Socks with cats and dogs on the toes with which serve as playful, friendly greetings to front door visitors. Cutesy socks, put the doorstep world at ease.

    Then there are my colour block socks that look just as good on their own or peaking out of a pair of high tops. Colour block socks need no explanation. They announce to the world with the same brazen hutzpah as Samantha Jones, “Hello. My name is fabulous.”

    I have sparkly socks too. To misquote Charlotte York—before she became a Goldenblatt—these socks say “I’m not dead. Let’s Disco!” Unfortunately these aren’t the most practical of socks, so I wheel these out only on special occasions such as Christmas and New Year’s Eve.

    Occasions that call for a little extra sock game.

    I have no idea how to wash them so I’m going to step into the confessional box and pretend you can’t see me when I say this: I simply rinse them in cold water and air dry them for a few days, before nestling them in my sock drawer next to a bar of soap in the hope that the fresh soapy anti-miasma will do it’s thing.

    As an aside: I’m happy to discover that there is an actual song called “You’re Dead. Let’s Disco!” which I am adding to my funeral playlist, because 1) I’m a control freak, 2) when you’ve been sick for over a decade, you tend to think about these things, and 3) I don’t trust my other half to get it right… some things never change, like my cynical Miranda Hobbes personality.

    But back to socks. I also own the gold standard, the Manolos of the sock world if you will; the pure cashmere sock.

    You know the kind. They adorn the feet of influencers lounging around their houses looking effortlessly chic clutching large glasses of red wine while daring to wear white jeans, while cute young offspring wander around wearing matching outfits. And there’s just enough mismatching design elements that you just know they and their interior decorators put many design hours into making it look like this too was effortlessly thrown together so that everything—chicly of course—oozes with just the right amount of enthusiasm “Look. I’m not that different from you. If you buy these things tagged in my post that have been gifted to me, you too can look as effortlessly cool and chic as I do.” Basically what former socialite Laney Berlin from the baby shower episode would be doing if she was on Instagram.

    Alas, like the mythic Mary Jane Manolos that Carrie found in the Vogue closet that were a size too small, I too discovered that washable cashmere socks are an urban sock myth. After ever so gently coaxing them into a lingerie wash bag—and putting them on a cold wash as instructed—they still emerged a size smaller, covered in a pox of pilled wool.

    The irony was not lost on me: my costly cashmere socks as with all my other expensive endeavours to improve my health—like supplements, infrared sauna blankets, treatments, and that one time I built a four cornered shrine dedicated to Manon, willing him to take my ailments and inner scars, had failed miserably. Okay, I may have made up the Manon part, but the rest is all true.

    Sadomasochistic that I am, I still have some cashmere socks lined up in my sock drawer like little ladies in waiting in anticipation of the day a spoonie royal like Lady Gaga, Sia, or Venus Williams should decide to pay me a visit, I will be suitably prepared.

    For as Carrie Bradshaw never said, but might have if she were chronically ill, “When your life is at a standstill your sock game benefits.”

    #SpoonieFashion #Spoonie #chronicallyill #Fashion #GravesDisease #Fibromyalgia #sjogrens #ChronicFatigue #ChronicFatigueSyndrome #bedbound #thisismetrying

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    Three Chronic Woes #chronicallyill #ChronicIllness #overwhelmed #Neuroendocrinecancer #ME myalgic encephalitis #EhlersDanlosSyndrome

    How do you cope when it is ALL coming at you at once? I was once a very independent, successful, super type A, corporate America gal who was so capable. Three chronic illnesses later I am exhausted, always battling brain fog, and my past coping mechanisms no longer work. Very quickly my life has spiraled out of control & I am feeling in such utter chaos that I don’t know how to right the ship. #hopeless #needhelp

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    I'm new here!

    Hi, my name is FeliciaDistad. I'm here because I want to elevate patient voices and create a space where we have a more active role in our own care.

    #MightyTogether #Vasculitis #GranulomatosisWithPolyangiitis #chronicallyill

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    I've Been Gone Too Long (poem)

    youtu.be/PKmhjdbTDYU

    #MultipleSclerosis #MS #mslikesymptoms #chronicallyill #Spoonie

    I’ve been gone too long

    Voids stare back at me

    Enough is enough; set me free

    Being in this body is tiring

    Enough is enough

    Every day feels the same

    Never changing, always something holding me back.

    Going every part of nowhere

    Only seeing what I want to see

    Nothing can change what’s already begun

    Even though I want it to change.

    Too many years wasted

    Only to find the truth in hell

    Over the hill, right in front of me

    Long has the fight lingered inside of me

    Only to be snuffed by the anger and rage

    Never again, never again!

    Great minds never cease.

    ***

    This poem was written from my bed as I was battling a menieres/neurological attack. I was fine one moment, then I was grabbing my head and throwing up in a bowl.

    What the?

    It’s frustrating, dealing with all of this. I’m strong and a badass but there are days when I don’t feel strong enough.

    I have to remember that I am because it’s true. I need to be kinder to myself, nicer to myself. Because I’m worth it.

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    What to do when you’re currently going through a chronic PTSD event?

    Currently going through something that is an addition to my already diagnosed medical ptsd.

    It’s already taken a toll on my physical health that I ended up in the emergency clinic a few weeks ago. The doctors asked if anything stressful was going on in my life that could have caused it. At first I couldn’t think of anything, but I quickly put the pieces together and realized it was from all this current medical stress.

    I can’t find any resources online on how to deal with cptsd while it’s happening. Only after. Therapy isn’t an option right now. I’ve been in and out of therapy since the age of 5, and it’s only ever hurt, not helped. Also, a part of my medical ptsd is from psychiatry, so I feel like it’ll do way more harm than good right now. And just all these appointments I’ve been subjected to lately have been really triggering.

    #PTSD #CPTSD #ChronicIllness #chronicallyill

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    Tips and Tricks needed

    I'm chronically ill and need some tips and tricks for when I am having a bad flare day #chronicallyill

    1 comment