Terminally Talented

The Umbrella

I am asked fairly regularly what Fibro is, how it affects me, etc. Well here is my (mostly) laymans terms explanation of Fibromyalgia and how I suffer it. Firbromyalgia is one of those diseases that has so much to it and is suffered differently by everyone. New symptoms or new pains oftentimes simply get put underneath the fibro umbrella. Sufferers have died of far worse issues because their symptoms were passed off as simply more fibro symptoms and thrown under the fibro umbrella. 

Strap in and get ready for the ride!

 

FIBROMYALGIA – The umbrella

An unpredicatable bitch of an illness. Chronic, widespread pain. Dysfunctional or useless opioid receptors in the brain so sufferers are un-receptive to mainstream medical painkillers (wanna have a routine surgery? Morphine and every other thing they have will not manage the post-operative pain). Brings to the party a number of unwanted disruptive shitty guests known as co-conditions – all chronic. The pain gateways in the central nervous system to the brain remain open 24/7. Sufferers are in pain at ALL times. The severity of the pain varies, but it never goes away. Spikes in, or high pain periods are called ‘flares’. It is also possible that many of those unwanted party guests will also get rowdy and ‘flare’ from time to time. 

There are multiple type of pain that are experienced. Muscular pain…. think, the day after leg day. This can be in one area (a limb, mid-back, hands, etc.), in multiple areas, or just fucking everywhere. Muscular Tension…. hold your arm up and flex those biceps as hard as you possibly can…. Now stay like that for a whole day, a week… oh heck maybe you’ll never be able to put it down. Also can encompass the entire bodies muscle system. Nerve pain…. this ranges from severe pins and needles (think stabbed all over with many pains), to the feeling of an army of green ants attacking an area, either on the surface or on the inside of a muscle or tender spot, then sharp stabs of nerve pinching pain or searing hot sword stabbing that knock the wind out of you or just stop you moving altogether. Marathon fatigue pain…. exactly as it sounds. Feel as if you’ve run a marathon the day before holding weights the whole way. This is wide spread and can cause the ability to move or walk to cease completely. This is also responsible for making simple things you take for granted painfully exhausting to do… lifting coffee mug to mouth.. hurts…. showering… hurts…

CO-CONDITIONS- exist under the umbrella

Fibro Fog – Cognitive impairment. Memory centres fail and cause embarrassing lack of important memories, often mistaken by others as a lack of paying attention or listening when others speak. Vocabulary range is lost… wanna sound dumb as a post? Complete disassociation from ones surroundings and having no idea where or when we are. Auto piloting.

Vision Impairment – Vision can go blurry out of nowhere, and there’s no knowing when it will return.

Chronic Headaches & Migraines – including vision impairment, intense claw your skull off blinding pain, light sensitivity, nausea, vomiting, passing out…. Sounds like a rough night out minus the fun. Some suffer these daily.

Allodynia – Heightened skin sensitivity, sensitivity to sounds (I can hear dead people… very loudly….. don’t chew near me.) Can trigger a hypersensitive meltdown from the sheer overwhelming state of all senses. Touch feels like burning across the top of the skin… like sitting on a rag full of thinners… or those green ant bites again. Burns like a mofo. Showers hurt like rolling in a stinging nettle field and last long after the shower is done.

Plantar Fasciitis – Extremely painful feet upon waking of a morning…. Think the foot pain that comes with a new job standing on concrete floors all day. This causes severe old lady hobbling… if it was an olympic sport I’d win!

Chronic Fatigue – The most extreme tiredness you’ve ever experienced. There is no sleep that cures this. Lifting your arms to dress causes extreme muscle fatigue that takes your breathe away… I mean everyone pants like they’ve run a race after putting a shirt on or their hair up right?

Painsomnia – Dead on your feet tired, but the pain keeps you awake… or you finally fall asleep to be woken up by the pain a few minutes later. The worst part of this is the fatigue-pain cycle of doom. You hurt, you can’t sleep, no sleep makes you hurt more, you can’t sleep from the pain… rinse repeat over and over and over. This is when one wishes to overdose on anything they can get their hands on or run full pelt head first into a brick wall hoping to be knocked out enough to finally catch a break.

Vulvodynia – Nothing is sacred! NOTHING. The sensitive and delicate skin of the entire lady garden becomes weak, peels off and leaves the entire area red raw and painful as fuck. This can lead to multiple recurring UTI’s as the weak skin can migrate up the urethra. This can also flare so bad that walking is off the cards entirely. And you guessed it… no hanky panky sexy times when this happens.

More Allodynia – That pretty bra you used to wear to feel like the sexiest milf around…. Yeah it’s now the trigger of intense burning muscular back pain and turns your rib cage into a spiked cage of torture. Pants? Cute knickers? Skirts with a non elastic band that you used to twirl in and feel all princessy…. nope. Fabric around the legs from pain feels like the are constricting all blood flow no matter how tight they are… The maxi skirts that sit higher on the waist, trigger insane kidney stones type pain that radiates around your entire mid-section. Something on the hips… sciatic, lower back pain, intense lady style cramps. I mean who doesn’t wanna feel like their innards are being torn out barehanded….. return of the hobbling granny.

Tinnitus – High pitched ringing in the ears. All.The.Time. So loud it keeps you awake or even wakes you up during the night.

Depression – This one makes me feel like Bianca Stratford of 10 Things I hate about you….. “Like.. Duh!” The pain is 24/7. EVERY second of EVERY minute, EVERY goddamn day. Ya get sad about it. Your entire life has changed and the person you once were is gone… Yup fucking sad… have a funeral for able bodied you.

IBS –  Can’t eat anything you want now…. that’s over, long gone. Crippling cramps, ridiculous bloating… But hey Aprils fools Pregnancy picture ready! (Don’t get offended I’ve also lost 9 babies to this disease)

Random Numbness – Oh hay dead arm! Ever tried pushing a trolley of shopping and a toddler around one armed? Oh you wanted to use that limb today? Nope.

Suicide – At any moment the pain can hit the roof. You wanna claw your skin off, rip the muscles out and thrown them in the bin just because it sounds like a massive relief. Accidentally overdoing the meds just to make.the.pain.STOP. The brain stops functioning properly when the body has been in high pain for extended periods. How could anyone live like this? How can i possibly burden the rest of society, let alone my loved ones with this shit. Fibro is terminal. And I will take to task anyone that says otherwise. It is lifelong and it is degenerative. Death can knock unexpectedly at any time for many reasons, least the desire to end the pain. Be prepared to battle this for the rest of your life.

Immune System Drop Outs – I call them immune flares. All of a sudden you feel like you’ve been hit with the worst man-flu that exists. Inflammation levels spike, temp goes up, the body starts fighting a non-existent infection. Any normal person illness/virus can be picked up super easily curing these. Quarantine thyself.

Whacked Temperature Regulation – Get too cold? Pain spikes and the body loses it’s ability to warm itself back up. Have a hot bath to soak the pain away? Overheat quickly and wind up throwing your guts up or passing out. Hot day – still have cold drop outs randomly. Cold day – sweat your ass off.

Shitty Jaw – (Temperomandibular Disorder) Wanna eat? Chewing hurts and causes you to tire out. Wanna take a bite of a large burger? Mouth won’t open that wide. Jaw and face aches, plus the jaw can lock up and hurt like a bitch and trigger migraines. Wanna BJ? Enter at own risk.

Bladder Issues – (Interstitial Cystitus) Need to wee? Pain immediately. Feels like someone is trying to rip your uterus, bladder and rectum out with their bare hands. Walk to loo like a hunchback squeeling pain with every step. Feels like a rough ass UTI all the time.

Infections – All of a sudden years old piercings act up. UTI’s happen easily and come on super fast – sometimes just from wearing underwear… oh and hey random kidney infection out of nowhere that lands me in the ER close to septic.

Anxiety – Evrerything in your life is at the mercy of the disease. Every single tiny thing you do is over analysed and micro-managed to simply survive this life. Anxiety is a constant companion as you never know when the next flare will strike or how bad… Go on a date and spike in the middle of dinner and make it home after sounding rude as fuck to excuse yourself, to collapse in a heap unable to move until it settles.. whenever that will be.

Costochondritis – Chest and rib cage turns into a spiked cage of torture. Wanna breathe? It’s gonna hurt. Was I in a cage fight yesterday and my memory has failed? I’m sure some of these ribs are broken…. 

Spasms – wanna.look.like.you.have.a.tick….. woah yeah my whole leg just jumped on it’s own in pain…. yes my left eye closed while my head spasmed to the left….

Sahara Desert dryness and Weak Skin– All the places that really should be moist… nope. Mouth feels like you ate an entire bag of extra flavour bomb salt and vinegar chips without sharing. Nose bleeds just cleaning it, inside of eyelids start peeling and impairs vision – take eye drops everywhere… Didn’t need that skin anyway…..

Fibro bruises – Feel like you were whacked with a 2×4 by a hulking muscle man, but there’s no visible bruise. No don’t fucking touch it! Oh and for sure someone hit me full pelt with a cricket ball, for sure it’s gotta be the deepest purple… nope nothing but pain. Don’t touch it!

False let down – The mummas will get this one. You know when you first get let down after you have a bub and it stings and burns like a bitch? For the non-mummas -Pour hot as shit wax down the top of each breast. Leave it there so it can sufficiently continue burning deep below the skin surface. Don’t touch that makes it worse.

Random Sunburn – I could be a hobbit indoors all day and wind up with red sunburnt skin….. It hurts! Like sunburn. So far it hasn’t caused peeling at least…. Although a little let down it doesn’t leave me with a golden tan….

Itchy Scratchy Skin – For sure I am covered in mosquito bites… midge’s attacked me in my sleep! Nope just itchy…Everywhere.

Fake pregnant… fake menopause – Everything that comes with those two things! Except every single test shows normal hormone levels… I reckon the levels are normal it’s the hormones themselves that are whacked haha.

 

These are all my experience. All the time. And I know there is more I’ve forgotten. Add yours in the comments.

Life is bloody hard. Life is harder with an illness of any sort. This. This is shit. And it can hit and alter your life irreversibly with no warning. I’ve had mine since I was a kid. A diagnosis was finally reached in 2014. I am 33 and I can’t hold down a job. I never know if I will wake up and be able to walk or move. I never know if I’ll be in the middle of grocery shopping and pass out. The last job interview I went for I was told (after answering the common question of if I have anything that would hinder me in the workplace) I would be a liability in the workplace. I live 65% below the poverty line. And I am always always researching and trialling things and trying everything possible to return to or live a normal life. It is a degenerative disease… just imagine all those things above getting worse…. You had a bad day at work? I’d trade you everything I have to be able to have a bad day at work. Didn’t feel like shaving your legs? I long for enough energy to keep them hair free. Go out with your mates, party, chill, relax, have fun… I can’t do that. Tired of your kiddos being overwhelming (shoutout school holidays!) I’ve lost mine due to this illness and see them once a week. Every minute is making sure I make it through the next minute. No longer the life of the party… more the party pooper.

But I live. I love. I smile. 

I smile when everything hurts. I smile when you’re being an ass. If I turn it off the result is not good. I stay in positive land as much as I can. I suffer the disease of hope. A cure has to be out there somewhere. I’m still here. I’m still fighting. My armour is chinked and tarnished and there is blood everywhere. But I’m still holding my sword and battling every single moment. 

Fight with me.

 

 

Kiarn

Fine Art Photographer

 

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8 Comments

  1. Mel December 17, 2017

    Iโ€™ll fight alongside you always

  2. Corina December 17, 2017

    OMG, I so really appreciated every word you wrote. And I cried echoing my Journey, every word. Thank you for sharing.
    I try not to share such rawness for fear of offending and losing people in my life who find this hard to hear.
    THANK YOU, THANK YOU, THANK YOU and much much love.

    • kiarncom December 18, 2017 — Post Author

      I too have done this for too long. I feel I just can’t anymore. It is what it is, and I need people to understand. It shows my true support system too.

  3. Corina December 17, 2017

    May I share this?

  4. Marie December 17, 2017

    You made me cry, not because l was sad or offended but because this is true and it also explains how l feel. Well done and well written. I will try to post this because this is what fibro is to me too and most people donโ€™t get it. Thank u ๐Ÿ‘

    • kiarncom December 18, 2017 — Post Author

      I am so very glad this has touched you. You are a beautiful fighter. Hang in there ๐Ÿ™‚

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