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April 30, 2013
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My Spoon Chart by IddyBiddySquish My Spoon Chart by IddyBiddySquish
This is for all of the fellow people out there with any sort of invisible illness. i myself have HMS (Hypermobility Syndrome) and am in the process of getting diagnosed/labled with ME/CFS (Chronic Fatigue Syndrome), and am going to get checked for possible FM (Fibromyalgia) and we are trying to determine if i have IBS (Irritable Bowl Syndrome) or Acid Reflux.
When i hear about the Spoon Theory i had only just been diagnosed (in February this year - not even 15 yet) and so i googled it and read it. I loved it so much i made this ^^^
This is a pain chart based on the spoon theory and i printed two of them off and laminated them. one of them is in my planner for school and to take on holiday - which is smaller - and a bigger one for my house. the way it works is just like the spoon theory; you have a certain amount of spoons left - 1 being lowest and 12 being the highest (0 isn't on there). i've always had HUGE difficulty saying how sore i am because i'm still adjusting to my 'new life' and try to push myself - which always ends badly. so i use this to tell my mama truthfully how bad i'm feeling because i hate missing school and not being able to do what i used to be able to. this has helped me massively so please, if you want to use it to say how much pain you're in then PLEASE USE IT!

i'm a massive colour freak so all of the spoons had to be different colours :D and the zebra like pattern was actually an accident, but i like it. it makes me think of the Ehlers-Danlos zebra :D - if you have an invisible illness or something you think this would be useful for then just use it :)
hope i helped anyone who finds it just as tricky as i do :) xxxxxxx
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Sarah-Vafidis Featured By Owner Apr 30, 2013  Hobbyist General Artist
I've used the spoon theory to explain my (finally diagnosed) Lyme Disease, really helped a few of my friends, those who actually cared enough to take the time to read it! :heart:
It's a great story :)
IddyBiddySquish Featured By Owner May 1, 2013  Hobbyist General Artist
It is isn't it? I think it helped my mum understand what i go through each day. Diseases like this shouldn't be taken lightly, i mean twice i was sent home by matron/the nurse in our school and each time she called my mum up saying that 'Alicia cannot have ME/CFS because....' and would say a different reason each time! and she's a NURSE!so far she's said 'because she was walking at the same pace as two guys' and the other time was because 'people with ME are only tired in the morning' - shows how much she knows (FYI i DO get it it the morning. i have to spare 10-15 minutes to try and get up from my bed!)- sorry, i'm ranting.
Is your Lyme Disease curable? I do hope it's lighter on you then it's been xxx How did they finally come to a conclusion that that's what it was? - sorry, I'm really nosy. I've started to write my story on Tumblr (my name's Lil Squish and my blog's at - just in case you want to read, do you? i wouldn't mind reading it :3
Hope you found my chart useful in some way :) I've always liked the kiddy appeal to it - the plastic spoons and the colours...i think I'm still a kid sometimes X3
Stay strong xx
Sarah-Vafidis Featured By Owner May 1, 2013  Hobbyist General Artist
LMFAO "you only get it in the morning" bahahah what a load of crap :XD: nurses and doctors can be so bloody stupid :XD:
My illness timeline began in 2006 and my heart failed. Took until 2010 for a cardiologist to diagnose my heart condition and I got a pacemaker that year. Throughout those years, I had the label ME/CFS because they couldn't find anything else. Also was pushed into a psych ward because two doctors refused to be wrong. I'm sure you know how it is "you're making it all up aren't you" ... As if I would. Anyway, I never fit the "norm" with the symptoms, mine are severely neurological and just plain weird lol.

2012 November just gone, my ME/CFS specialist tested me for Lyme and it was positive. Because I was most likely bitten as a kid, the disease has been in my system far too long, so we're doubtful I'll ever be normal again, but we're sure that the disease won't progress and continue to damage more organs, heart and brain are very much damaged, so that would be perfect if nothing else.

So basically that's a really brief, brief xD

Have you ever been tested for Lyme? <3
IddyBiddySquish Featured By Owner May 2, 2013  Hobbyist General Artist
Yeah, they know nothing. My mum told me that she told the nurse about what my Physio is doing (keeping me up late and making me build up my muscles etc - the usual)and she shut right up XD
Wow, you've gone through so much! I've only just started getting diagnosed to this stuff - only in December last year did it actually start getting recognised. I'd had the symptoms for years but only last year did they get incredibly worse.
It's horrible when people think it's all in your head or that you just want attention because it's never the case and it makes you feel like utter crap! It makes you think you're insane and makes you embarrassed for feeling things their science can't find! Things they might never know about because, lets face it, no matter how much science progresses they'll never know everything. It honestly is an outrage how they don't address this stuff more in both hospitals and schools; everyday places that have issues with this stuff.
You managed to pack so much into that 'really brief, brief' XD I cannot believe how much you've gone through. I haven't been tested for it and i doubt I will. They seem to think they've go everything or so it seems, but I'll mention it to my consultant and physio - mainly to learn about it and maybe she'll test me for it if for nothing more than to make sure. Is it a simple blood test? I'd only heard of it last year in my science class, but it was as an example for something so I don't know very much about it. could you tell me? your knowledge will be a lot more accurate than the internet.
How do you cope with all of this? I know that's one of the things people with invisible illnesses don't want to hear - I hate it too (hypocrite, i know :3) - but I honestly have no clue how you do it. I mean, I know you just have to, but how don't your emotions go all over the place? I'm not doing great at coping but any tips, on ANYTHING, would make me most grateful :) xxx <3
Sarah-Vafidis Featured By Owner May 2, 2013  Hobbyist General Artist
Simple blood test, if picked up early, CURABLE! The longer it's in your system, the harder it gets to treat, but there is treatment available. (Depending on the country you live in...) USA for example - first thing doctors think and test for. Get your script for antibiotics, your treated and fixed in weeks/months.

Everyone is slowly coming around but the UK should be okay. Basically Lyme Disease is a bacteria that comes from a tick bite. Many people do not remember being bitten, nor remember this rash [link] (which you DON'T HAVE TO HAVE to have Lyme.)

Lyme is classified as an infectious disease, but you can't "catch" it by being next to someone, nor is it anything contagious like Ebola Virus :giggle: and the tick basically damages your body and its ability to function. Multiple organ failures/disorders will take place. People react differently to it. Google will be more reliable than me for stuff that's in your country, but I can tell you it is worth testing for!

For example, one person I know with Lyme is off studying the world, travelling with university. Touring. Having fun. Being normal.
I however can't even leave my bloody house. I'm sick in bed, had to quit school and use a wheelchair. It's honestly shocking we have the same disease, but that just shows the difference to everyone's bodies and the length it has been attacking your immune system :D

As for coping, that is the single most important thing of being chronically sick. You MUST find a way that works for you. Just because someone else read this "BE HAPPY - BE CURED" book, don't feel you have to! I used art. I still use art but my muscles in my hands don't really allow me to do it now, so I take photographs now. Art is how I cope as it is the one thing I still feel in control over <3

I'm struggling at the moment with dealing with everything, but that's only because I worry far too much :XD: I have no family, so if my parents were to suddenly die, I'm F***ED. I really don't need to worry about that, but I do.

So as for coping, I guess I don't. I just know how my life is and take it a day at a time, it's really the only way. I don't like being showered by nurses, but it's honestly the best part of my day. Simple things like them washing my hair makes me happy because I can't do it myself.

The emotion part, let them! You have EVERY right to be angry, or sad, and definitely have all rights to be frustrated. But as long as you have something you love to do that makes you happy in your life, you really will be okay :heart:

Long message sorry!!
IddyBiddySquish Featured By Owner May 3, 2013  Hobbyist General Artist
Trust me, I DEFIANTLY don't mind long messages - this, so far, has been the best part of today simply because when I went to get up to go to school I couldn't move because everything hurt, I was exhausted and everything felt like it weighed the same amount as the Earth!

I'll defiantly get my doctor to test for that - I'm okay with HAVING the blood test although I have a phobia of needles :sprint:(I look away and have the spot numbed with a LOT of cream X3) but it's actually after that it effects me; I get incredibly light headed and i actually fainted once - wasn't fun. But it's a LOT better then possibly having that. It is possible this happened when I was about 7 - my dog got a tick embedded in his eyebrow. As for being bitten I have no memory of it, but like you said not many remember that sort of thing.

The one thing I miss is independence. I LOVED being able to do the things I can no longer do. I have difficulty with breathing - not been diagnosed with anything and have been tested for asthma but I don't have it - which stops me from doing quite a lot, then along with excessive tiredness and pain whenever I move I can't do a lot. Granted, i'm defiantly lucky that i'm not bed bound or need a wheelchair - though sometimes i really wouldn't mind one - for life. It IS meant to improve, but it's not so far. Then again, I only started Physio in January/February time and she told me that this will take a long time - she wouldn't give me any sort of time, making me think it could take up to a year or even more.

All of the tings I like I don't get much time for, or can't do it. I can't do any extreme sports (obviously) and drawing is difficult but I do do it and rather enjoy it. The difficulty is I've always had difficulty with anger and my 1st therapist said I should get someone to check that out, not that we did. In the end I found ways to cope with it and then what happened? I couldn't do them anymore. They were things like piano and writing books - always preferred creative things. Typing is getting really difficult - i'm using a voice thingy (you speak into a mike and it types it. It's so damn useful, but i'm not allowed to use it for school *sad face* - have to use a scribe instead, which works out badly since I can't spell things aloud so I now loose marks for that!)

Not to mention, my music teacher isn't helping. she's incredibly rude about me not being able to be 'normal' and the P.E teacher actually said I was a burden on the other teachers and implied that it was MY FAULT I had this stuff. Sigh
Sorry, lost track there. I know what you mean when you say you're F***ED because i'm similar. I have family, but none with us and they wouldn't be able to look after me the way my mama and dad do :cuddle:. But I guess at least I'd have them. I REALLY hope you have a good day coming your way - I know that you must want one as much as I do.

I'll figure someway to cope - i'm trying numerous things out, even going to a youth center for people with CFS/ME or who have symptoms of it. They might be able to give me some tips on dealing with the tiredness.

Thank you for your help :la: and I'M SO SORRY! I've written/spoken an ESSAY!!! I guess I needed to pour my heart out. Give yourself a treat for Getting to the end of this! :squee:
Sarah-Vafidis Featured By Owner May 4, 2013  Hobbyist General Artist
Lol you're kidding, I was told I was a burden on my teachers years ago too, when I was hospitalised and they refused to send me work to do... Wtf? I was promptly taken out of that school.

What year are you in if you don't mind me asking? It's bad when it happens to people in their youth :(

Pour it out anytime you need, I'll do my best to cheer you up :aww: the bad days suck and I'm sorry :huggle:

Are you able to listen to music? I know for some people it causes severe pain to do so, but if you can, try listen to it at ALL times. I did this for a couple of years, at a low level (yeah right lol, I always turn it up more) and it worked as a baseline distraction from the pain <3 even if you can still feel it, you trick your brain into hearing something else.

IddyBiddySquish Featured By Owner May 4, 2013  Hobbyist General Artist
That's TERRIBLE! Honestly, I cannot believe some people. Bet you were glad to leave! I cannot believe that! That's absolutely dreadful - That should be looked into, there has to be something wrong there, right?

It's fine, I don't mind you asking :D. I'm in year 10 - doing my GCSEs. I just got back from a ME/CFS youth group! It was really good and one of the mums of one of the girls there is going to help with the school because that's her job! :D I felt more secure when she said we were actually not doing enough to make school easier; we thought we were being out of line!

I ALWAYS listen to music, and it does help to distract. I'm the same when it comes to having it low...then turning it up XD I even listen to it when i'm in the isolation room at school - it's for naughty kids but I go there when I cannot do the lesson, or when I actually have lessons there! The teachers in that dept are LOVELY, which really helps.

So do you not go to school/stop going to school? Sorry, I don't catch on very fast :/ But what did you do? How did you KNOW what to do after? Sorry, being nosy XD
And thanks for all your help, you're so kind! :)
xxx <3
(1 Reply)
SpaceTacos113 Featured By Owner Apr 30, 2013  Student Digital Artist
Colorful spoons! XD
IddyBiddySquish Featured By Owner Apr 30, 2013  Hobbyist General Artist
I LOVE THE COLOURFUL SPOONS!!! uh *cough, cough* so yes. me like the colourfulness of said spoons... :D i promise i'm not a strange child XD
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