The Spoon Theory for ME/CFS

Today it is the international day of awareness for Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrom and Fibromyalgia. Every year sufferers and health practitioners – those who believe in it at least – try to raise awareness in the public for this horrible and so far untreatable disease. Every day is a struggle but just how much can be hard to grasp for healthy people.
One patient, Christine Miserandino who suffers from Lupus, a disease which shares many similarities with ME/CFS, created an analogy called The Spoon Theory in order to explain how patients with these kind of diseases always have to think ahead with how they want to live and why it is always a heart-wrenching moment to decide against meeting family or friends just to do dishes. It seems almost stupid and trust me, it FEELS stupid that we have to think about such otherwise trivial things when we really want to spend time with our near and dear. But we have to if we are to avoid excessive pain and PEM (Post-Exertional Malaise). Below I will try to explain the Spoon Theory with a small twist to clarify inspired by a post on a facebook support group.

The Spoon Theory

In short, you have to imagine your day’s or week’s supply of energy for everything you have to do whether it is doing dishes, go to work, meet your best friend, talk on the phone, read a book etc, as a bundle of spoons. Healthy people have an unlimited amount of spoons and can do things to give them even more spoons. But for every single thing where you use energy, you use up one spoon. This is where it gets hard for patients and where the true cost of the disease really comes biting your behind, because once our limited number of spoons are gone they are truly gone and we cannot get any new ones. Christine’s personal account can be read here if you like, but I would add a twist to her original theory that not all the spoons are of equal size.

You have a mix of teaspoons, soup spoons, serving spoons, and table spoons. Of course you try to use up the bigger spoons for the bigger tasks but you cannot always be sure that you have one available. Especially when you have to account for things you cannot plan. For instance, you cannot be sure that you can find exactly all the things you need to buy at the store and so you could be forced to hunt down alternatives or leaving without necessary items. Or perhaps there is a whole school class in the bus with you and the children are happy – and noisy. Or the air conditioner has broken leaving you too hot or too cold, or your husband is stuck in traffic and comes home in a bad mood. Emotional tasks cost energy spoons too. That means that something which might on an ideal day have cost you a teaspoon ends up costing you a soup spoon! Which could interfere with your weekend plans for going to your niece’s fifth birthday party or reading a book. Because cognitive tasks despite them being low in physical level, are also still using up spoons.

Let me be totally honest, it is a very disheartening way of life to distrust your life and your surroundings this way and many go through bouts of depression on top of it. But unless you want to end up in bed for the rest of the week in pain you cannot afford to take one thing at a time. You ALWAYS have to keep your plans in mind and make enough room around them for the unplanned. As a chronic illness patient with things like ME/CFS or Lupus, the risk of getting other sicknesses is also greater than for normal healthy people because our immune system is constantly strained. So despite how carefull you have been with your spoons you could be getting a cold minimizing all you spoons left for that day or week. You see how this could affect your life? And not just whether you can be pain-free but also the quality of life. Nothing is sacred to this disease, it takes everything if it can if you are not carefull and planning, and even then you are not safe.

#MillionsMissing

As hurt as your friends may be at you for a long-planned meeting last minute, you also go through the emotional work of trying to forgive yourself for doing it because you miss them terribly but can feel the pain increasing and overwhelming you just thinking about getting to their house. Tomorrow would then mean a day in bed in excruciating pain and you cannot do that because you have a doctor’s apointment then. ME/CFS patients lose a lot of friends this way beyond losing the daily social connections with colleages as most of us have to give up our jobs or studies. My heart really breaks for those living in places without healthcare or public benefits. They are living on a rock and have to use up even more spoons considering basic human needs.

Last year, an ME organization started the campaign #MillionsMissing around the world to raise awareness of just how many of us are missing from life. The events would show empty pairs of shoes lined up, each one to illustrate a person not being able to fill them out and be out and about anymore. This year, we recreate this event and I know that there will be empty pairs of shoes in Copenhagen but if you want to show your support, you can upload a picture on social media of empty shoes and include the hashtag. It would truly mean a lot to us if you did.

I try to keep optimistic despite nothing really helps me in that endeavour. I try to work things I used to love doing into my plans. Like this blog with the books I read and whatever else inspires me. That means many days I cannot do things I like because then I have to take a shower (washing my hair is really an energy consuming task!) or go grocery shopping. Let’s not even think about the dishes! I live alone and I usually only have myself to count on as my family has their own homes and health problems or friends living too far away, and also you don’t want to be a nusiance and a burden. They didn’t choose this disease for you either so why should they be burdened by it as well as you? So there is a lot of FOMO (fear of missing out) but I personally rely on social media to give me glimpses into their lives and connect with them this way because it takes less energy and I can then think on something besides pain or exhaustion for a small moment. As close to me being me as I can. And I need those moments to make up for the truly horrible ones when I don’t recognize myself or see how I can ever have a meaningful life.

But I try to be optimistic. I try to see my age (turning 30 in July) as my luck so I have time for science to find a cure. Or maybe just a good treatment option for me to be able to have a job and a family. To have this disease be managed enough to give me more spoons. That is what makes me go on each day. Hope.

{ image credit: 1 mine, 2, 3 mine }


DANSK:

Idag er det den internationale oplysningsdag for fibromyalgi og myalgic encephalomyelitis, også kendt som kronisk trætheds syndrom. I den anledning vil jeg henvise til den indtil videre bedste måde at forklare en kronisk sygdom for raske, kendt som The Spoon Theory, altså ske-teorien. Den blev opfundet af Christine Miserandino da hun skulle forklare sin veninde hvordan det egentlig føles og hvordan man egentlig lever med en kronisk sygdom.

Kort fortalt skal man forestille sig at raske personer har et uendeligt antal skeer til rådighed. Syge har et lille bundt og kan ikke få flere. For hver eneste ting, som de skal bruge energi til bruger de en ske. F.eks. gå i bad og vaske hår – haps! 1 ske er væk. Så er det morgenmad og på med tøj – haps haps! 2 skeer væk igen. Sådan bliver det ved og ved. Det synes måske ikke så alvorligt, men hvis alle ens skeer er væk inden man er kommet til frokost på arbejdet så begynder det at blive et problem, ikke? Specielt hvis der er mange gøremål derhjemme, mad skal vi jo alle have og der skal handles ind og gøres rent. Måske er der larm i bussen eller meget kø og trafik på vej hjem og endnu flere skeer forsvinder som dug for solen.

Kognitive og følelsesmæssige ting tager også energi selvom de kan være stillesiddende, så selv det at se Matador eller læse et ugeblad kan betyde at der ikke er skeer nok til de vigtigere ting. Derfor bliver mange kronisk syge meget isolerede og det er meget ensomt og deprimerende at sige nej til at mødes med en ven bare fordi man om morgenen vaskede hår. Alt skal overvejes og planlægges med meget luft omkring sig i kalenderen. Så selvom den ser tom ud for en rask så kan den allerede være overfyldt for en syg.

Det er individuelt hvad der kræver mest energi, for eksempel kan tøjvask være ekstremt energislugende for mig mens jeg kan sidde og læse en bog uden at jeg er helt drænet (derfor denne blog). Hvad vi alle dog har tilfælles er dog at vi hver eneste dag skal tage ekstremt mange og trælse valg for hvordan vi kan komme igennem en dag uden at få følger senere. Følgerne er endnu mere opslugende udmattelse, den slags som går ind i marv og ben og giver dig kvalme, og svære smerter. Det kan føles som om at kroppen simpelthen falder fra hinanden, rådner, og er gennemspiddet af knive. Hvert eneste skridt er på glasskår og hver mundfuld mad er maddiker. Ingen har lyst til at have det sådan, vel? Så vi gør hvad vi kan for at undgå det hvilket desværre også betyder at skulle undgå meget af det vi gerne vil.

Der er indtil videre ingen kur, ikke engang en rigtig medicinsk diagnose. Alt er kun udelukkelse af andre ting og opgivenhed fra sundhedssystemet. Alligevel står vi op – næsten – hver morgen og prøver. Vi kæmper og kæmper for de små øjeblikke uden nævneværdige smerter og hvor vi føler os – næsten – almindelige som alle I andre. Jeg håber, at min alder taler min sag. Jeg bliver 30 i juli og håber derfor, at der måske kommer et gennembrud og at jeg kan få gavn af den. Det er jeg nødt til at tro på. For alternativet er her allerede i min hverdag. Realistisk er det nok sådan her jeg skal have det resten af mit liv, men jeg håber det ikke. Bare en lovende BEHANDLING ville betyde alverden. Os syge forlanger ikke engang en kur, bare forståelse og hjælp.

I København er der idag et event arrangeret af ME-foreningen i samarbejde med ME Action for kampagnen #millionsmissing. Der vil blive opstillet tomme sko som symbol på alle os, som ikke længere kan udfylde dem og bruge dem til at være ude i livet. I kan også bidrage med et foto på de sociale medier af et par tomme sko og hashtagget #millionsmissing for at vise jeres støtte og skabe opmærksomhed. Det ville betyde meget for os at få anerkendelse og fokus på sygdommen. For vi møder så meget modstand og mistro, at det bare er psykisk og hypokondri. Sygdommen er hård nok at kæmpe mod specielt fordi vi ikke altid ligner nogen der er syge. Så hvis I ville dele nogle af jeres skeer med os på denne dag ville vi være utroligt taknemmelige.

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About Ann-Cathrine 38 Articles
Established 1987 in Aarhus, Denmark. MA degree in English and Art History from Aarhus University, Denmark. Loves books, art, writing, coffee, dandelions, paper dolls, and haute couture.