2017 Challenge – Part 1: Life

happy jar 2017

First up, I hope everyone entered the new year safely and in good spirits. 2016 was a bugger in many ways and no need to bring more of that cursed energy with us into a fresh new year. In fact, here in Denmark it is a tradition to jump from a chair at the first bell stroke to avoid bringing the Devil over the threshold to the new ear. You know, like the groom picking up the bride when they enter their home for the first time. I did, so hopefully things will be better. Stating that, I actually want to explain what goes on in my life and why there may be coming some slight changes or new not strictly book related posts on this blog in the future.

In late Summer and early Autumn last year, I was in and out of hospitals trying to figure out why I was constantly exhausted and in pain no matter what I did or did not do. I was in brain scans, had blood work done, had heart monitoring and tests done, X-rays, psychological interview, and a whole lot more but nothing seemed to show up on anything to explain my symptoms. Eventually, because of the lack of results, I was diagnosed with Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome (ME/CFS). In short, it is a disease no one really understands but it seems to behave like Multiple Sclerosis in many ways, but as of yet no one is certain what it is, what causes it, and at present there is therefore no cure.

That was a huge shock, as you can probably imagine, and something I am trying to grasp each morning when I wake up still feeling exhausted as if I had not slept at all. Most days my pain level can be managed as I have a milder form of ME but through Facebook fora I know that severe sufferers are bound to their bed or wheelchairs as well as enormous amounts of expensive pain medication. That scares me because I have always thought of myself as active though also an introvert, and to know a wheelchair or a nursing home could be a faster-coming scenario for me makes me question everything. Currently, I am not able to keep a job and I am in the middle of applying for public benefits which I am still in some ways ashamed of. I have always worked and studied towards being away from the ‘System’ and those statistics, and to be able to provide for myself. However, if I am to hopefully manage this disease and let time work in favour of me since I am still somewhat young (turning 30 in July) and can hope for a cure to be discovered, I have to prioritize to take care of myself and at the moment that means being provided for by the state.

I am on a waiting list for a clinic which researches in my disease but until then I am learning everything I can about the most recent research abroad and how to optimize my health in general. Most importantly, I am trying to learn to trust my body again because I have not done that for the past 5-10 years as my symptoms never made sense or could be explained. Now I have to trust my body because my body was right: something is very wrong and I must learn not to aggravate it. This will mean that I cannot e.g. buy groceries, cook, eat, and do the dishes on the same day. That would result in extreme exhaustion and pain, as would a long day with my family. So ME/CFS is also very isolating and on the few good days incredibly boring because I must not overdo it on those days to make up for the bad days.

Post-Exertional Malaise (PEM) is my primary symptom, and that is basically extreme exhaustion the day after or even several days after any – especially prolonged – activity. This explains why I have needed a holiday after a holiday spent with family or been like a dead fish on school trips. So everything ‘normal’ now takes 3-5 times longer for me than it would for a healthy person because I have to pace myself. You see how that interferes with having a job, right? And having a social life (Thank goodness for social media in this case!).

Because of all this and because 2016 was such a spoilsport of a year, I have made 2017’s life challenge to have most days without PEM and to remember the good things in life. Therefore, inspired by gratitude journals and TBR-jars, I have made a little ‘Happy Jar’ where I write something good or positive I have seen, read, or heard of on small slips of paper. Hopefully, the jar will fill up quickly. It is to remind me of the good things on my bad days and to focus on the good stuff. Then 31 December, I will look through them all and relive all the happiness and gratitude; the daily magic, as I call it. Because magic can be found only if you look for it and our eyes adjust in darkness and take in more details so it does not seem as dark and scary.

To track my PEM, I have created a pixel spread in my Moleskine calendar, to help me get a quick overview of my situation and maybe halting a crash before it gets too severe. This was inspired by bullet journal trackers and I have just taped an extra page into my calendar from the loose address book which I never use anyway. Maybe throughout the year I can discover times I am more likely to crash and I can go to the specific dates in my calendar and see if I have done something special that may have caused them and thus adjust.

So this blog will of course be a part of this journey and since I have many interests and many places where I find happiness and inspiration, I will probably also start featuring them here on my small island of Internet-land. That could mean I update and post more regularly but just not necessarily only about books or literature. Fear not though! Books and literature are still the speedway to my heart and will be a key feature in all my life but I will talk more about my reading challenge and goals in my next post.


DANSK

Velkommen tilbage til min lille blog efter en lidt ufrivillig men nødvendig pause her i efteråret og vinteren.

Kort fortalt var jeg ud og ind af hospitaler i sensommeren 2016 og i løbet af efteråret fik jeg så den diagnose, der hedder Kronisk trætheds syndrom, også kaldet Myalgisk encephalomyelitis (ME/CFS). Jeg har døjet med uforklarlige smerter og udmattelse i en lang årrække efterhånden, men sidste år syntes min læge ikke at der var mere som kunne “måske” forklare det og jeg blev jo så undersøgt på alle leder og kanter. Der var MR-scanninger, røngten, blodprøver en masse, hjerteundersøgelser og alt muligt andet, men intet poppede op som sådan. Derfor var det ved brug af udelukkelsesmetoden at jeg fik diagnosen.

Det er som navnet siger en kronisk sygdom og ingen ved præcis hvad den kommer af, hvad den egentlig gør (bortset fra de symptomer vi patienter beskriver) og derfor er der ikke nogen kur. Gennem patientfora på Facebook kan jeg se hvor alvorlig den faktisk er, da flere er bundet til enten seng eller kørestol samt meget dyrt og hårdt smertestillende medicin. For det er foruden den konstante udmattelse, smerterne som er det værste. Lige meget hvor lidt man laver får man smerter og smerterne udmatter så en endnu mere. Man føler at man taber ligemeget hvad man gør, og selv det at handle ind, lave mad OG vaske op bliver umuligt.

Jeg er heldig at jeg har indtil nu en mildere form for ME, og kan de fleste dage holde hånd i hanke med mit smerteniveau, men jeg er konstant udmattet. Hvis der endelig er et øjeblik hvor jeg føler mig frisk og rørig er det absolut nødvendigt, at jeg IKKE laver for meget og prøver at “veje op for de ting jeg ikke har nået”. Det vil kun resultere i endnu flere smerter dagen eller et par dage efter. Det er nemlig det der kaldes PEM – post-exertional malaise (post-fysisk problemer, det har ikke noget dansk ord endnu), at man bliver indhentet af smerter og udmattelse i ekstrem grad efter et hvilken som helst gøremål. Selv at sidde til en familiefødselsdag kan sende mig til tælling i flere dage og almindelige huslige gøremål skal brydes op i bitte små dele og over flere dage og stadigt er det kun heldigt hvis jeg får dem gjort. I mange år skammede jeg mig over det fordi det jo virkede som dovenskab til trods for at jeg følte at jeg virkeligt prøvede af alle kræfter. Nu ved jeg jo så, at min krop har haft ret hele tiden og at der er noget galt. At jeg ikke “bare skal tage mig sammen” eller “dyrke motion”, for de to ting virker ikke. Tværtimod gør de tingene værre.  Derfor er det i øjeblikket også umuligt for mig at have et arbejde og jeg må ty til offentlig forsørgelse selvom jeg ikke er glad for det. Men hvis jeg skal håbe på at fremtiden kan finde en kur så vil jeg ikke ødelægge min krop og ende i en kørestol inden da.

Med alt det sagt, så vil det jo nu blive en del af min blog for det er ikke noget jeg kan løbe fra længere. Så jeg vil nok også begynde at skrive indlæg herpå som ikke kun handler om bøger eller litteratur, men også om nogle af alle de andre ting, som interesserer og optager mig. Som I kan se på billederne har jeg også lavet et lille “Happy Jar” hvor jeg skriver en seddel med gode ting, jeg har oplevet eller hørt om for at holde fokus på de gode ting her i livet. 2016 var jo ikke et af de sjoveste år, men jeg er overbevist om at der findes gode ting hver eneste dag. Om det er at klappe en sød hund eller at jeg finder den første anemone eller bare at solen skinner, alle sådanne ting skal fyldes i glasset i løbet af året. Jeg vil også holde øje med mit PEM og noterer med en farve hver eneste dag i min kalender. Planen er at få et overblik og at se om jeg kan finde nogle pejlemærker for hvornår jeg har det bedst og hvornår jeg har det værst, og så justere hen ad vejen.

Jeg håber, at I stadig har lyst til at læse med selv med de små kommende ændringer, men I kan godt være rolige. Bøger og litteratur vil altid være min store kærlighed og der vil stadig være masser af det her på Literamour. Men alt det fortæller jeg mere om i næste indlæg.

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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.