Nurse and Chronic ill

🥄Spoonie and nurse 👩🏻‍⚕️ 🤕Idiopathic Intracranial Hypertension: ventriculoperitonealshunt and lumboperitoneal shunt. 💊Unknown/undiagnosed kidney disease: hypokalemia, hypophosphorus. 🏊🏻‍♀️Hyper mobility syndrome. Gastroparesis 💉Unknown/undiagnosed clotting disorder: arm thrombosis, sinus thrombosis, bilateral pulmonary embolisms. 👂Vestibular schwannoma/acoustic neuroma. 🤒10 times sepsis survivor. 🎗Childhood cancer survivor (and because of that multiple chronical illnesses..)

[papasyapperia]

I wish able bodied people could understand that being disabled gives you a fundamentally different relationship with hygiene. Would I love to take a shower tonight? Absolutely. But I am deeply exhausted in a way someone without a disability can’t understand. My entire body hurts anytime I do anything. I had to fight just to brush my teeth, and I’m lucky I could even do that. A shower is just not in the cards right now, I just have to hope it’ll be in the cards tomorrow. Most people seem to think that makes me disgusting, but this is just how I have to live. I don’t like it anymore than you do.

[swimmiey]

This.. but also rolling outside my house, things walking people get under their shoes I often touch with my hands.

And I haven’t wash my hair in 4 weeks, as I just don’t have the energy to do so at the moment (and no accessible shower).

Being in pain 24/7 cost so much energy. Energy I am not able to spend on anything else.

[transdoggirl]

i’m always tired . no matter how much i rest or sleep . both mentally and physically fatigued , always .

[chronicillnessmemes]

“Let me be crystal clear: if you’ve faced a tragedy and someone tells you in any way, shape or form that your tragedy was meant to be, that it happened for a reason, that it will make you a better person, or that taking responsibility for it will fix it, you have every right to remove them from your life. Grief is brutally painful. Grief does not only occur when someone dies. When relationships fall apart, you grieve. When opportunities are shattered, you grieve. When dreams die, you grieve. When illnesses wreck you, you grieve. So I’m going to repeat a few words I’ve uttered countless times; words so powerful and honest they tear at the hubris of every jackass who participates in the debasing of the grieving: Some things in life cannot be fixed. They can only be carried.”

— Everything Doesn’t Happen For A Reason — Tim Lawrence (via chronicillnessmemes)

[swimmiey]

Me: omg my life is so boring…

Chronic illness: well, let’s spice things up then.

*bad flare on it’s way*

Me: never mind, I’ll rather go back to boring.

[eternallysluggish]

Shout out to those of us whos disability has stopped them from being able to pursue their passions.

Shout out to those of us whos disability won't allow them to work.

Shout out to those of us whos disability is a source of embarrassment or shame for them.

Shout out to those of us whos disability is so severe that they're unable to communicate to us here.

Shout out to those of us whos disability causes them to struggle with hygiene.

Shout out to those of us whos disability leads to being grumpy and upset.

Shout out to those of us whos disability makes it difficult to maintain their appearance.

Shout out to those of us whos disability has cost them their friendship group.

Shout out to those of us whos disability is brushed off as a "funny" or "gross" condition.

Shout out to those of us whos disability leads to them needing carers.

Shout out to those of us whos disability makes them too ill to shower.

Shout out to those of us whos disability causes them to use mobility aids.

Shout out to those of us whos disability causes them to fear leaving the house.

Shout out to those of us whos disability is watered down into something that it isn't.

Shout out to those of us whos disability gives them exercise intolerance.

[swimmiey]

Body, please, I’m literally begging you. I’m in tears. I’m exhausted. I just want some sleep. You graciously “let"me fall asleep about 045 Only for me to be woken up at 130. Please let’s go back to sleep. I’m hurting so much. This last few days has been hell. #SpoonieProblems

[swimmiey]

Berlijn

Remco had vrij tussen Kerst en Oud&Nieuw, dus hadden we besloten dat we er even een paar dagen tussenuit wilden. We hadden nog een hotelbon liggen, die we bij elkaar gespaard hadden via Optimel eurosparen, en hadden zo een leuke korting. Het maakte ons niet zoveel uit waarheen, als we maar even weg waren. Al snel viel ons oog op een hotel aan de rand van Berlijn, waar we binnen 30 minuten met de…

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[swimmiey]

Warme zomerdagen: contrast met vorige zomer

Het was warm de afgelopen dagen. En ondanks dat ook ik het echt heel warm gehad heb deze dagen, mijn lichaam het heel erg zwaar heeft (gehad) door deze warmte en ik merk dat het een hele dunne lijn is tussen thuis kunnen blijven en een opname nodig hebben, is het niet iets waar je mij over zult horen omdat ik gewoon weg dankbaar ben dat ik deze warmte voelen mag.

Maar waarom zou je niet klagen…

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[swimmiey]

Me: omg my life is so boring…

Chronic illness: well, let’s spice things up then.

*bad flare on it’s way*

Me: never mind, I’ll rather go back to boring.

[swimmiey]

Vertrouwen

Vertrouwen Ik moet mijn lichaam opnieuw leren kennen, maar hoe krijg ik ook het vertrouwen in mijn lichaam weer terug?

Het grootste gedeelte van de zomer opgenomen geweest met een zware infectie, waardoor ik zo ziek ben geweest dat ik een paar keer op het randje heb gelegen. Mijn mijn longen reageerde heel heftig op deze infectie, waardoor ik veel zuurstof nodig had. Door een hele lage bloeddruk met spoed naar de intensive care (IC) overgebracht. Uiteindelijk bijna 45 dagen koorts gehad, waarvan de meeste dagen…

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[swimmiey]

Intracranial Hypertension (IH) is a rare neurological disorder that results in increased cerebrospinal fluid pressure within the skull. Doctors used to call it “Pseudotumor Cerebri” (aka fake tumor), because those with brain tumors also have elevated intracranial pressure—causing the same symptoms and presentation. Life with IH varies greatly from patient to patient, but is a serious condition that can greatly impact quality of life. Having severe headaches, nausea, vertigo, loud ringing in your ears, and even vision loss every single day sounds like a nightmare. But it’s reality for those with Intracranial Hypertension. Not every patient experiences all of these symptoms, but they are all very typical with IH. Some have “good days” and others do not. Many patients are unable to work or go to school because of their health. To put it bluntly—this condition is difficult to live with. Just because you see us smiling, laughing, or out doing something doesn’t always mean we’re feeling better—it means we’re trying to enjoy our lives despite our illness. Treatment options are unfortunately not great. Medication to treat IH is very harsh on the body (particularly your kidneys) and has many undesirable side effects. Those that don’t respond to medication often resort to brain shunt or stent surgeries. There is no cure or “quick fix” for IH and it’s accompanying symptoms. #iihsucks #iihawareness #invisibleillness #intracranialhypertension #headachefromhell #myheadhurts #chronicpain #chronicfatigue #chronicillness #chronichope #iih #pseudotumorcerebri #pressureheadache #vpshunt #lpshunt #butyoudontlooksick #weneedacure #blurredvision #paralysed #tinnitus #iihawarenessmonth #spoonie #spoonielife #lumbarpuncture #ineedaspinaltap #totiredtofunction https://www.instagram.com/p/BntSHddCFk0/?utm_source=ig_tumblr_share&igshid=1ud9ojtv8mt82

[swimmiey]

I’ve had an amazing swim clinic tonight from Olympic swimmers @idekker and @saskia_de_jonge. And even though I’m pretty tired now, I’ve had a blast. It was so nice to be able to swim again. I was so happy I was able to do this even though I was pretty tired all day, I really needed some positive energy. Doing thing like this is really helping me to get through the bad days. Big thanks to Inge and Saskia for making my day. 🏊‍♀️ #swimmerforlife #swimclinic #iloveswimming #missswimmingsomuch #chronicillness #invisibleillness #njtube #chronichope #headachefromhell #ineedanap #itneverstops #intracranialhypertension #fanconisyndrome #electrolyteimbalance #kidneydisease #kidneyproblems #kidneyfailure #childhoodcancersurvivor #nursingstudent #butyoudontlooksick #myheadhurts #positiveenergy #totiredtofunction #spoonielife #spoonie #spooniestrong #spoonielife (bij Optisport Dronten zwembad Overboord)

[swimmiey]

Today was my birthday. I will celebrate it tomorrow, since we’ve had a swim meet today. Last year hasn’t been easy, but I’ve met some amazing people who I know will stand by my side when I need them. Next year won’t be easy either, but I’m going to try to make the most out of it. For now I’m just happy to be home and to be able to celebrate my birthday at home and not in the hospital where I was admitted 2 weeks ago with sepsis. It was a close call, but they discharged me Thursday so I’m able to be home for my birthday. I’ll do an update on the last admission soon, but I need some time to write it out and I’m to exhausted to do it right now. First celebrating my birthday tomorrow with my closest friends and family, and update will follow after. ------------------------------------------- #hello28 #hospitallife #sepsissurvivor #birthday #birthdaygirl #anotheryearolder #anotheryearwiser #anotheryeargoneby #chronicillness #invisibleillness #spoonielife #greatfulforlife #newfriendsforlife #swimmeet #swimmerforlife #chronischziek #headachefromhell #intracranialhypertension #fanconisyndrome #antibioticsfordays #sepsissurvivor #butyoudontlooksick #happybirthdaytome #bye27hello28 #invisiblystrong #ineedanap #totiredtofunction #chronichope #sickbutstrong #alliwantformybirthdayisacure

[swimmiey]

A little over a week ago my NJ started to leak bile and stomach acid. Also everytime I ate or drank something it leaked out and I started to threw up formula, so I knew it had migrated from my jejunum to my stomach and needed to be replaced. It happened on Saturday night so we decided to hold my feeds for a day and called my nephrologist on Monday. They had an opening on Tuesday, so I wasn’t to long without my feeds. It needed to be replaced on the endoscopy ward with a gastroscopy. I was given versed, but was still wide awake and noticed everything that happened during the endoscopy. They tried placing it through my nose instead of my mouth like last time, but the scoop was to big so it did hurt like hell.. but I’m glad they were able to place it through my nose. Hopefully this tube stays in place for a while, because I’m really disliking the placements. My blood pressure was really low during the procedure and after (70/35) the alarm went off constantly, so they almost made me stay the night.. But luckily it came up just enough to be allowed to go home. -------------------------------------- #njtube #ifeellikegivingup #feedingtube #feedingtubeproblems #sickandtiredofbeingsickandtired #spoonie #spoonieproblems #totiredtofunction #chronichope #chronicheadache #chronicillness #chronicpain #chronicfatigue #electrolyteimbalance #invisibleillness #intracranialhypertension #sondevoeding #fanconisyndrome #butyoudontlooksick #headachefromhell #versed #hospitallife #hypotension #endoscopy #gastroscopy #endoscopie #gastroscopie #ineedacure #chronischziek #kidneydisease (bij Isala)

[chronicillnessmemes]

“Let me be crystal clear: if you’ve faced a tragedy and someone tells you in any way, shape or form that your tragedy was meant to be, that it happened for a reason, that it will make you a better person, or that taking responsibility for it will fix it, you have every right to remove them from your life. Grief is brutally painful. Grief does not only occur when someone dies. When relationships fall apart, you grieve. When opportunities are shattered, you grieve. When dreams die, you grieve. When illnesses wreck you, you grieve. So I’m going to repeat a few words I’ve uttered countless times; words so powerful and honest they tear at the hubris of every jackass who participates in the debasing of the grieving: Some things in life cannot be fixed. They can only be carried.”

— Everything Doesn’t Happen For A Reason — Tim Lawrence (via chronicillnessmemes)

[swimmiey]

Me: omg my life is so boring...

Chronic illness: well, let's spice things up then.

*bad flare on it's way*

Me: never mind, I'll rather go back to boring.

[chronicillnessproblems]

I think an important thing about spoon theory that abled people don’t get and that isn’t talked about enough outside the community is how unpredictable spoons are and how long-lasting the effects of shortages can be.

Like people get that I don’t have as much energy, but they’ll assume that I have some idea how much energy I have. I don’t. It’s completely unpredictable. It’s not like I get 20 spoons a day, or like I get 20 spoons per morning if I slept well that night. I can sleep fine and wake up feeling well, but then an hour later I have to go to bed again because I can’t move and I don’t know why. Then the next day I might be able to do more than usual and be fine, or maybe I overshot how much I was actually able to do and now I’ll be recovering for the rest of the week.

And running on low spoons for too long or pushing myself too hard can have a negative effect for a week, or a month, or years, and I also have no way to predict this. It’s kind of like how if you leave your car lights on once and run your car battery down it’ll probably be okay once it gets a jump, but then again you might have drained it too much and now it’ll be really weak and finicky until you replace it.

Except of course I can’t just go to the mechanic/doctor and get a new battery. If I push myself too hard one month it might take me three or four months to rest constantly and re-figure out why my pain and fatigue are bad in the first place, and three or four months of NEVER depleting or pushing past my spoon shortage again to get back to normal, or else I’ll have to take more time to recover.

The spoon theory is great, but when you’re living with low spoons chronically, there’s a lot more complexity and impossibility to managing life with spoons than most abled people who think they understand spoons seem to think there is.