💖Just A Spoonie Living In A DayDream 💖 @sparkleybumblebee-blog - Tumblr Blog

Newly diagnosed with a chronic illness I've been dealing with for years. Can you explain the spoon thing to me?

Oh gosh, I didn’t see I got asks. Apologies to you and the next answers. The Spoon Theory is written by Christine Miserandino who tried to explain to her best friend what it felt like to have a chronic illness. In short the spoons represent the amount of energy you have during a day. So for example on an average day you start out with 12 spoons and that’s all you get. Every activity you do will cost you spoons. Some only 1, some 2 and some might even cost 3. This means you really need to balance your activities and try to not run out of spoons during the day. Which can be extremely difficult.

Here’s an image which illustrates it very well

(I can’t find the original source so if anyone knows, let me know!)

Here’s the link to the original article: The Spoon Theory by Christine Miserandino

buzzfeedau

Monument Valley honestly kept me from having a panic attack a few weeks ago.

I was on hold with my bank for roughly a half hour because someone had stolen my debit card number and had charged a couple hundred dollars worth of stuff to it. All I could think about while I was on hold was what if my rent check bounces, I can’t afford the late fee I’ll be slapped with and I’m already on bad terms with my super - and I felt that horrible grip around my chest squeezing down and my breathing getting faster.

Normally I can just drink a cold glass of water and sit in front of my ac (to remind myself that no, my throat is not actually closing up, and that yes, I can still successfully get air into my lungs with the help of a fan) but this time neither of those tricks did anything. Well actually that’s not true, they reminded me that I was alone in my apartment, and if couldn’t find a way to calm down, I wouldn’t necessarily be able to get help - which only scared the shit out of me even more.

So I sat in front of my AC and pulled up the brightest, happiest looking app I have on phone, which is Monument Valley, and within ten minutes of building pathways to guide the princess through the castle I was breathing normally. I found myself thinking, look at this bitch, you’re already solving this, this will be cleared up with your bank in the next half hour, and in case your check bounces, you’ll have documentation as to why to show your landlord. On good days, it’s sometimes honestly as simple as helping a tiny me walk through a beautiful castle while solving simple puzzles to remind myself:

I got this.

ghostmapped

GASP DOWNLOADING THEM ALL

ohbthr

Monument Valley is an absolute joy and beauty of a game, and I’m definitely checking out some of the others now.

pastrygeckos

monument valley is fantastic and i’ve been thinking about trying some of these others :3

dragonsgalaxy

abyssrium is also really relaxing! you basically raise marine life! the art is also really pretty

apetemoss

HOLEY SHIT I BEEN WAITING FOR VIRIDI TO COME OUT ON PHONE

painmanagementprincess-blog

If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.

Carmen Ambrosio (via painmanagementprincess)

noelleian-deactivated20190923

Being Tired vs Fatigue

When you’re tired, you sleep and you will wake up refreshed.

When you’re fatigued, you are exhausted, but you can’t sleep. You are weak, often too weak to walk, or perform simple tasks. You’re restless and listless, but you don’t have the energy to do anything. You can’t concentrate and your thoughts are all over the place. Sometimes it’s accompanied by widespread pain. When you’re fatigued, sleep will not make you feel better. When you’re fatigued, nothing makes you feel better.

Learn the difference and quit telling chronically ill people that you’re tired, too. It’s not the same thing.

painmanagementprincess-blog

earthstory

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bandwgia

painmanagementprincess-blog

You know you have a chronic illness when...

1. Going to the doctor scares you, not because of what he might find, but that he will find nothing wrong.

2. You’re well versed in medical jargon.

3. When your family is looking for you and the first place they check is the bed.

4. Winter is your enemy.

5. Your house is in chaos and you’re ok with that.

6. Walking to the mail box is a huge accomplishment.

7. You are grateful for the small things like your spouse cleaning his dishes or trying to fix dinner without asking where the pots and pans are.

8. You take multiple naps a day and still fight fatigue.

9. A pill case that lasts others a week lasts you one day.

10. All your close friends are in the doctor’s waiting room.

11. Your social circle is on social media.

12. Your biggest accomplishment for the week is that you didn’t have to throw up when your family came over to visit you.

Finally, if this sounds familiar I understand, I believe in you, you are a member of the spoon society so embrace that fact. Once you let go of the big stuff you will find peace in your life.

#spoonie post #sparkleybumblebee

painmanagementprincess-blog

Mine are more like intolerable and un-fucking bearable.

sparkleybumblebee-blog

This is me in a nut shell.

#spoonie humor #sparkleybumblebee

ciaocasper

Things I've learned since becoming ill...

• It’s nobody’s fault. It is genetic. It just happened.

• Do not be too proud or stubborn to ask for help. You need it.

• Brush your teeth and wash your face (even just with a baby wipe) everyday if you’re able to do so. It makes you feel more human.

• Shower or bathe whenever you are able to. Good personal hygiene is good for your mental health.

• Some people will leave. You don’t need those people. Others will stay and they are wonderful human beings.

• You are not a burden. You are not useless. Do not be guilty. Please. Guilt will eat your insides.

• You have not lost who you are. You just now have to make adjustments to accommodate this new thing.

• Accept the fact that you have an illness. Being in denial will only make your mental and physical health worse.

• Clean pyjamas are a divine gift. As are clean bedding and blankets.

• Self care is entirely subjective. If you want to do yoga then do it, if you wanna sit and eat takeout in front of the TV in a squirtle onesie then that’s fine too. Whatever makes you feel good, or at least better.

• If you are tired then rest. Do not burn yourself out. It doesn’t matter what time of day it is, if you need a nap then you have one.

• Talk. Write. Sing. Paint. Draw. Dance. Do something to express your feelings. Don’t keep them inside. You’ll explode.

• Don’t worry if you can’t adjust right away. It takes time. A lot of time.

• Do not feel ashamed or embarrassed. Unfortunately illness often has embarrassing symptoms or such. It isn’t your fault. People who allow you to feel embarrassed about such things are terrible people.

• Keep your sense of humour. Some days it’s the only thing that gets you through.

• There will be good days. Grab them with both hands and enjoy them. Savour them. Spend them doing things you love, things that you can’t do on bad days.

• Prepare yourself to the best of your ability. Like…always have a hospital weekend bag packed for emergencies, keep a bed day drawer or bag near to where you sleep, have food or snacks close by, always have a water bottle…

• Take your meds. Please. If you have a serious illness for the love of god don’t listen to the “big pharma” conspiracy theorists. You need your meds. They keep you alive. They enable you to function.

• Research your illness. Keep yourself informed. But don’t dwell on what might happen. Please don’t scare yourself.

• It’s okay not to feel positive all the time. It’s okay to feel down. It’s perfectly natural. But try to be as positive as you can. For your own sake.

• Your own health comes first. It’s not selfishness it’s survival.

• Be kind to yourself.

• The bad days can be horrific but the good ones are beautiful, and so worth holding on for.

• Don’t give up on love. Just don’t.

• You are a badass warrior.

sparkleybumblebee-blog

This is so perfect

#spoonie post #ehlers danlos syndrome #sparkleybumblebee

quadriparesis-deactivated201908

I need more people to follow!

my dash is getting a little slow so! reblog if

- you’re trans (any gender, especially if you post a lot about transition or you run a transition blog! i love reading about other people’s transitions!)

- you’re chronically ill (especially if you have ehlers-danlos syndrome, POTS, gastroparesis, mast cell activation disorder, and/or peripheral neuropathy) and blog about it. feel free to follow me too- i really want more chronically ill mutuals!

- you’re intersex

- you identify with cripple punk/cpunk (”bad cripple”, anti inspiration porn, etc.)

- you’re autistic (especially if you run a stim blog! my stim blog is @wheeliecoolstims )

here’s my about if you want to follow me too! i really want more mutuals! i’m not that great at conversations but i try lol

jekabeth

Spoonie here. Supporter of all and judgemental of none who do no harm to others. Dysautonomia diagnosis.

#spoonie post #sparkleybumblebee

theconcealedweapon

If someone can lift 100 pounds, would you expect them to carry it with them everywhere they go?

If someone can sprint 20 miles per hour, would you expect them to be able to maintain that speed for a long distance?

Of course you wouldn’t. Being able to do something does not mean that you can do it for a long period of time.

So if a wheelchair user can stand to reach something or walk a short distance, why do you assume they don’t need the wheelchair?

sparkleybumblebee-blog

This is pure genius, the perfect way to explain it

#spoonie post #sparkleybumblebee

alicentflorent

reblog this post if you're under 25 and suffering from a chronic illness

I want to see how many of us there are

sparkleybumblebee-blog

Sixteen

#spoonie post #sparkleybumblebee

That Moment When. . .

That moment when you’re having a really bad flareup and you can’t sleep and you just want someone to talk to and it’s almost 11:00 p.m and you can’t find anyone awake. Anyone out there to talk to??? I feel so alone. . .I just want someone to be there.

#spoonie post #sadness