A diagnosis says nothing about the person. Nothing about their personality, their dreams or how they cope. It only explains what they are dealing with and how the condition works 🤓🙏
International women’s day is a great way to celebrate the female aspect of humans and of all of life and creation. There is not one without the other. It is also a great day to highlight the many struggles and unfair things women have to deal with on an everyday basis. For me, personally, all this matters because as a person in female form, it hurts to be excluded, and it creates fundamental imbalance between the sexes and even more duality. Imagine eating lunch alone everyday, or not being invited to a get-together on purpose, being on the outside looking in. To be excluded. That’s what it feels like many times, being a woman. In the workplace, in conversations, in politics, in important decisons making, and for many women; in their own home. Even our own bodies. It sucks to be excluded. Please include us, it will create more balance, and balance will inevitably benefit all.
“Du vet når en tulipan henger med huet, og så trøkker man den inn blant de andre for at den skal stå oppreist… Et sånt samfunn vil jeg ha.” 🧡🌷💐
Går rundt med mange ideer i hodet, og tenker at i år blir, kanskje, året der jeg får satt de til livs. Jeg har lenge, i flere år planlagt å sette igang en nettbutikk, men har enten alltid bare starta sånn litt, ikke kommet ordentlig igang og latt det være etter en stund. Jeg tror det kan ha mye med selvtillit å gjøre og tro på at man kan gjøre en god jobb som folk liker og kan kjenne seg igjen i – for det er det jeg tror som skjer når man “klikker” med et kunstverk, man gjenkjenner noe. Enten det er visuell kunst som et maleri eller et klesplagg sydd som redesign. Unike ting som har kommet fram i et øyeblikk av kreativitet. Før jul hadde jeg en bitteliten kunstutstilling og innså nå nylig at det er først etter man har gjennomført en drøm eller et mål, at man vet hva man greier. For tenk å kunne “jobbe” med det en liker å gjøre. Det hadde jo vært nokså innafor. Og tenk å være like modig og selvsikker som Pippi.🌷🙌😄👧💪
Reading: Aspergirls by Rudy Simone
Watching: Shameless on Netflix. British series from early 2000s. It’s brilliant!
Listening to on Audible: The Life of the Buddha and The Bhagavad Gita
Drinking every day: Black tea with stevia and soy milk
Happy about: Becoming better at expressing my wishes and boundaries
Not so happy about: Feeling confused about my living situation
Thankful for: Having a bit more financial security for the first time in years
I det siste har jeg følt at jeg er litt lost med tanke på hva jeg skal gjøre med helsa. Som nevnt tidligere, så har jeg en del kroniske diagnoser, deriblant fatigue, smerter, migrene og mageproblemer.
Jeg har altså gått ned 4 kg på tre uker. Det er egentlig ganske kjipt, fordi jeg brukte over ett år på å legge på meg 6 kg. Rask forbrenning kombinert med dårlig matlyst og diverse andre magegreier resulterte i vekttapet. Jeg har alltid vært slank, men ønsker ikke miste de få formene jeg har.
Så da må man prøve nye veier. Av og til føler jeg at jeg leker litt “lege” med meg selv, men helt ærlig så har jeg vært på så mange konsultasjoner at jeg har blitt litt oppgitt.
Vanligvis tar jeg følgende kosttilskudd:
Og nå skal jeg prøve enda noen tilskudd for å se om ikke det hjelper!:
Tar du noen kosttilskudd, isåfall hvilke?😊
What is authenticity, as in being authentic? I have been thinking about this lately, although I can barely spell the word. Is is being completely transparent and honest all the time? Is it being open about your struggles, hopes and dreams? Or is it to be so in touch with your true nature & your personality that you simply cannot be anything else?
I think it might be a combination of all these, as honesty, openness and personality all seem to shine forth automatically when one is resting in one’s natural state. My goal would at least be to try and live in such a way that I am not fooling myself or those around me. I find it difficult though. By fooling, I mean that I don’t always speak my mind when I should. Sometimes I choose holding onto resentment. Sometimes I even nod along to things I don’t agree with. Sometimes I dress differently than I would like to, just to fit in.
I have been trying lately to be more open about what my experience is, it feels a bit dishonest and lonely to not do so. From a relative point of view, I have lots of labels on myself, and I try to speak openly about these matters, both in conversations and on social media. I don’t feel like hiding these aspects of me. They are useful to relate to other people and for me to navigate myself in the world, and find meaningful relations. I am all of these things and that’s okay 🙂
From an absolute point of view, I guess none of these labels matter. But I am still trying to understand the absolute, so I think maybe I should not write too much about what I still need to learn and live first hand.
Hope everyone had a lovely Christmas and has a Happy new year! ❤
Det kvile ei natt over landet i nord,
Husan e små der kor menneskan bor.
Men tida e travel i karrige kår,
rokken han svive og vevstolen går
Det leve i løa, i naustet og smia
Et lys, et lys, et lys imot mørketida
Snøen ligg tung over frossen jord
ute står mørket om fjell og om fjord
vår herre gir livberging, søtmat og sul
når døgnan sig fram imot advendt og jul
så støpe vi lys midt i hardaste ria
et lys, et lys, et lys imot mørketida
Dagen e borte og natta e stor
men i mørketidslandet skal høres et ord
ei sol som skal snu så det bære mot dag
om folk som skal samles til helg og til lag
på veien mot Betlehem bære Maria
et lys, et lys, et lys imot mørketida
– Trygve Hoff
Foto av Susanne Pedersen 🙏
How autism (ASD/ASC) has manifested for me (in good ways and bad ways) 😊
– Sensory sensitivity; easily overwhelmed by light, sound, touch, smell and things happening around me
– Extreme focus on numbers, names, symmetry and details (finding errors)
– Very keen long-term memory (I tend to associate clothes and colours to events) Short-term memory has declined a lot due to my M.E. symptoms
– High need for familiar surroundings and routines
– Meltdowns due to sensory processing, sensitive amygdala (have gotten better through meditation, almost completely gone!)
– Specific interests, that often change 😅
– The need to do things in a certain way, and becoming very frustrated when they don’t get done like that
– Need to plan things carefully
– Very visual imagination, thinking in pictures rather than words (comes in handy in meditation and creative work!)
– Need things to be almost spelled out to me, taking things very literal
– Feeling emotions very intensely
– Finding fullfilment in my hobbies rather than work. Would love it if my work was my passion
– Tend to zone out/space out, or become hyperfocused on some detail
– Listening to the same music and audio books over and over again
– Selective mutism (used to be worse)😊
It’s fairly recent that I discovered that it is in fact an autism spectrum condition I have after doing an AQ test. It feels like a huge, massive relief to finally know what has been sort of a mystery to me, and it feels like all the pieces of a puzzle just fell into place all at once. Funny how close people around me (Heidrun and Karl Henrik) knew already and have hinted to me about it, it just took me a while to admit it I guess 😄
Here are some interesting videos and articles on the subject:
Our Recent Study on the Overlap between Autism and Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders (very interesting as I have Hypermobility as well)
Treating Autism and ME/CFS: Could One Drug Help Both? (super intriuing article connecting autism and ME, which I also have) Excerpt from the article:
“ASD is not Chronic Fatigue Syndrome (ME/CFS) but some similarities exist. Both diseases affect cognition and sensory processing, cause problems with stimuli, cause significant social withdrawal, and are associated with increased levels of oxidative stress, reduced glutathione levels, and a Th2 immune response shift.
According to Dr. Naviaux, “ASD and ME/CFS are on the same biological spectrum.” Dr. Naviaux has encountered teenagers with ASD who develop ME/CFS, and adults with ME/CFS who develop autism-like symptoms of mutism, social withdrawal, sensory hypersensitivities, and OCD-like symptoms.
Both, he believes, are caused by a failure of the cell danger response (CDR) to shut down normally after a chemical or biological injury has been healed or cleared. Both disorders lead to abnormalities in metabolism that he has characterized using a laboratory tool called mass spectrometry and metabolomics.
[…] Dr. Naviaux believes that the energy and other problems in Chronic Fatigue Syndrome (ME/CFS) may be caused by the same cell danger response he believes is present in autism. The strange wired and tired symptoms, the inability to settle down and rest, the hypersensitivities to stimuli, the ADHD-like problems, even the mood issues like anxiety – all are the consequence of the body being put in a low energy state. Ironically, people in low energy states just can’t relax because, Dr. Naviaux asserts, “it takes more energy to relax than react”.
Høsten er en alltid en fin og fargerik påminnelse om forandring og det forgjengelige.
Jeg liker lister, lister er både gøy å skrive og å lese, så her er en liten liste over ting jeg…
Burde: Stå opp tidligere og ikke starte dagen med kaffe, men ordentlig frokost. Har blitt en sånn en!
Skal: Bruke dagen i dag på å få unnagjort ting jeg har utsatt; svare på mailer, bestille legetimer og få pressa inn noen timer med sitting (meditasjon).
Har dilla på for tiden: Nutella. Er maktesløs mot Nutella.
Ønsker å bli bedre i: Å kommunisere! Jeg har ingen problem med å skrive ting, men skulle ønske jeg var flinkere til å si ting, ikke være så konfliktsky.. Det er vel en øvingssak?
Leser nå: The Lotus Sutra og One Taste av Ken Wilber. Han skriver bra, veldig bra. Har kommet sånn 20 sider inn i boka, og har allerede flirt og grått. Skal sjekke ut flere av hans bøker etter denne. Har lagt til en widget nederst på bloggen til GoodReads-profilen min, sånn btw:)
Gleder meg til: Retreats i både november og desember. Samt kunstutstillingen jeg skal ha på SevenDesign rundt nyttår! Det blir stas.
Gruer meg til: HPV-vaksinen. Haha. Ikke fordi jeg er redd sprøyter, men jeg vet aldri hvordan kroppen reagerer, eventuelle bivirkninger og sånt.
Sparer penger til: Retreats. Og reising.
Prøver å ikke gjøre mer: Utsette ting.
Jobber mot: Male nok bilder til en ny utstilling til neste år.
Kommentér gjerne om du har flere punkt jeg kan adde til lista mi 🙂
Cave, rock and tunnel exploration in Laksvatn, down by the sea. Autumn is really here, the colors speak for themselves 🙂
I wanted to write a little bit about something that occupies of my mindspace a lot; love and relationships. I’ve briefly mentioned before, here and elsewhere, that I consider myself polyamorous. I was not aware of this term until some years ago when I found myself really loving and wanting to spend time with more than one person, and I’ve found this hard to explain to people around me, and also to the people I love. Because of course, as humans we are used to certain ways of thinking and responding to things, and all sorts of feelings arise when it comes to what could be called untraditional relationship structures, or non-monogamy. And then there is the whole communication part, and even the logistics of it; love is infinite but time and energy is not (relatively speaking), so how to distribute your time?
From my buddhist point of view, love and compassion is something we all have a capacity to feel, and is in short, the heart of spirituality. Love makes us open up and it can be shown in so many different ways, and different people bring out certain positive qualities in us that we should cultivate for the benefit of others around us. But this is easy to forget, especially when it comes to close/intimate relationships; we trigger each other, we feel jealous, we want them to feel like they owe us something, we blame and forget to treat them –who has chosen to spend their precious time with us- with the respect they deserve. Basically, it brings all the things we don’t want to deal with to the surface, but it can also be seen as a good opportunity to deal with it, to grow. (Of course, here I am not talking about staying in an abusive relationship, for example, but about facing our insecurities).
I believe there is a love that connects all of us, one that can be felt by simply tuning into the feeling of your own heart (i.e. in meditation). But I also believe there is many different love dynamics, be it romantic, platonic or sexual – or a mix, and it largely depends on the two people involved, how they make each other feel and how their personalities go together. Also, if they are both polyamorous, or one is monogomous. All relationships are unique, and it seems a bit foolish to think that there is only one way to have an intimate relationship, and that there should only be one at a time (although I 100% respect other people’s wish for monogomous relationships too). It may take extra work having multiple relationships going on parallel, but to me, it feels even worse having to hide my emotions, and to choose one person over another. I don’t think one should run after each and every desire/attraction that comes along; that would only be destructive for everyone involved – I am talking about being able to spend time with those you are in love with and those you feel committed to. This life is brief, and like a dream it can stop at any moment. It’s imporant to find time to show love and affection while we can. But like I said in the beginning, time can be an issue, and sometimes one just has to prioritize some things more than others. I admit, this is not my strong side. But I am working on it 🙂
is key. I’ve always been introverted, and find it hard sometimes to talk about stuff that is on my mind. I tend to just keep it in and have long conversations to myself instead, haha. Or to my cats…. This is not so favorable when it comes to polyamory, but I feel I have found a way that works for me to still get my points and feelings across: I write. It may not be super romantic, but I write it in an e-mail, on facebook message or simply as a letter and give it to the person I wish to say something to. I feel like expressing myself through writing is much easier; you get time to think and reflect, and get the words down “right”. I wish I was better at communicating verbally, I would love nothing more than hold the hands of a person I love and tell them all about what’s going on inside. This is something I am working on. But as long as the message gets across, I guess that’s the most important.
I am still fairly new to poly, but it seems there is no doubt that communication is important. I mean, it’s certainly important in all relationships, but more so maybe in poly ones because there is more people and thus more feelings involved. At the same time, I think it’s imporant to respect what the other person wishes and don’t wishes to know about for example your other partners, or trivial details that have no real relevance to your dynamic. I for one, don’t want to know about my partner’s casual hook-ups. All I ask for is that they are careful not to get sick and to practice safe sex. I only wish to know if they have fallen in love with someone new and/or have started dating someone romantically or otherwise longterm/feel committed to someone else, as this may have some impact on my time with them. And of course, if they are thinking about children in the near future (gosh, am I that age already?).
A friend of mine asked me how my “love life was going”, and I said I was having some open loving relationships at that moment. His response was: “Oh, so no committment?” This triggered something in me, I felt like that was a weird, but also not surprising response. I feel very committed to the people I love. Committment to me is not having sex with one person for the rest of my life. Committment to me is committing my time and energy to someone I like, to show them trust and respect, sharing special moments together and letting them know how I feel about them. To travel places and to eat meals together. To cook, shower and read together. Doing everyday stuff, together. Making plans. I have been in two longterm monogomous relationships in my life before, and the level of committment I feel is still the same, even if it’s non-monogomous. Crazy, huh?! 😉
I get jealous. Of course I do. I am still human 🙂 I compare and compete, I make myself feel small and sometimes think that I am not good enough as I am, be it physically or otherwise. Feeling inadequate. But I also feel it is my “job” to tackle strong negative emotions like jealousy through practicing meditation and taking resposibility for my own mind, my own emotions. I do find it hard though, emotions can be very overwhelming. Also something I am working on. Jealousy is such a strong and common emotion, and it can really do damage in intimate relationships, so if a partner feel extreme jealousy, I try to not be the douche who points a finger and says “that’s your stuff to handle, deal with it”. Because it’s not that easy.. There are often ways to work through it together.
I know in my heart I will always be polyamorous, just as I know in my heart that I am bisexual. Polyamory also feels like the only way for me to feel both committed to loving relationships and still date both sexes. This is not something I am doing at the moment, but definitely a wish I have for myself in the future, at the same time as I feel very satisfied with what I have now. I also find myself in a strange feeling of wanting a family. I mean, like kids. (Can’t believe I wrote that!) Either I am just feeling super clucky (and have done for some time now), or I am actually getting to a stage in my life where it feels right to do within the next years. All I really wish for my future is to make my relationships work well, but also attend to my personal dreams. If they go hand-in-hand, that’s amazing.
Monica Olivia, last day of August 2018 ❤
Hallo der nede! 👋 Foto fra flytur over Norge et sted 🌏 Blir aldri lei av å se fjell, og det er ikke ofte jeg får sett de fra denne vinkelen. Fy søren, så fint!⛰
“Sometimes a broken heart gives birth to anxiety and panic, sometimes anger, resentment and blame. But under the hardness of that armour, there is the tenderness of genuine sadness. This is our link with all those who have ever loved. This genuine heart of sadness can teach us great compassion. It can humble us when we are arrogant and soften us when we are unkind. It awakens us when we prefer to sleep and pierces through our indifferences. This continual ache of the heart is a blessing that when we accept fully can be shared with all.”
Påska har så langt vært ganske chill for min del, har stort sett vært hjemme å slappa av, lada opp. Spist godteri. Tatt tvangs-selfies med kattene. Prøvd meg på litt hjernetrim i form av kryssord. Blitt sint fordi jeg ikke er noe flink på kryssord. Drukket litt for mye kaffe, og hørt veldig mye på Lord Huron. Legger ved en fin sang av dem! Ser ikke ut til at det blir så mye skitur eller sol i år, da vi har snødd ned her oppi nord, men håper alle har en nydelig påske læll ❤
Litt bilder fra de siste ukene. Ramfjord, Ersfjord, Storelva og Lyfjord 🙂 Jeg har til og med vært på skitur; tre ganger! For første gang på fem år. Selv om det tar all energien jeg har, og krever mye planlegging både før og etter, så føles det verdt det å komme seg ut og bruke kroppen. Jeg elsker jo å være utendørs, skulle virkelig ønske jeg kunne gjøre slike ting oftere, ja – faen heller, hele tiden! Springe på fjellet, gå lange skiturer, klatre på berg og i trær..:) Naturen, ass.
Januar er favorittmåneden. Dagene blir fort lysere, og sola “kommer tilbake”. Alt ser friskt og nytt ut når det er så mye snø, og selv om det er veldig kaldt, fins det varme rundt meg. I folks hjem, i bilen, fra stearinlys, i musikk, fra dyr, i relasjoner, under dyna. Ja, også har jeg bursdag i januar. Det er alltid stas 🙂
I am definitely not gonna write a “new year, new me” post, because I am really not trying to improve myself. If anything, I am trying to dissolve what is left of “me”-identity 😀 I am not going to say “2018 will be the best year” either because the last two times I did that, the year proved to be the absolute worst/hardest, haha. Not gonna jinx it this time!
The new year has started off with a very bad flu + migraines + something called laryngitis (constant couching and loss of voice). Luckily, people rarely call me, so good old texting is in order! I hope I get better fast, tho, because I have some couchsurfing hosting to attend to, and also there is the TIFF (Tromsø International Film Festival) coming up. Plus some concerts…and parties…ah, how will I find the energy to do all this 🙂
I do, however, want to say that I wish the new year will be even more creative and that I will find more motivation for my art. Doubt and low energy has been big for me these last months and it has affected me a lot. I also wish that I will develop and find meaningful connections and adventures this year. I don’t believe it is good for anyone to be too much alone or isolated, even if you have chronic illness or social anxiety or whatever reason. I have been in a place where being around people have been *impossible*. So I am so grateful that is not the case anymore, and lately Couchsurfing has been kind of a lifesaver in that regard. I don’t have a job or go to school, so meeting new people this way is really nice. I still love my own space, but balance is always key 🙂
Last year, in January, I started a crowdfunding for a medical treatment (rehabilitation) in the Dead Sea, next to Jordan and Israel.. I have not received enough funds to go there yet, but if I do within the next 8 months, it is very possible I will go. Other than that, the year is pretty much open to whatever happens. Not gonna plan too much.
Happy new year, folks 🙂
I’ve always valued close human interactions. As a kid I was pretty much hanging out with friends every day. Playing outside a lot, having sleepovers, going to cinema, doing shenanigans around the neighborhood.. Kid stuff, you know 🙂 I have been very lucky in that sense, always having friends and someone to turn to if needed. And I have always enjoyed being a friend: someone you can rely on and someone who listens. Being a friend feels meaningful. And if we can share silence too, even better!
As I have grown older, some friendships have either ended or we just don’t have much contact anymore. But when we do meet, it is as if we never parted. These kinds of friendships are very special, I think. Time can pass and your lives are hectic, and different paths have been chosen, but still the bond of friendship is there. Also, having long distance friendships allows you to send postcards – I love sending postcards!
Now that I am not a kid anymore – alas!, finding new friends have been kind of hard. Like, how do you find new friends as an adult? You can’t just ask like you could when you were 7. And the period of my life when I was bedridden did not exactly make it better. Being 21-22 and bedridden was like really, really wanting to go to a party, but not being allowed to. That feeling. Luckily, I feel better in my health and have been forcing myself to be more social the last year or so. Kind of catching up for the “time lost”. Because I do love being around people, it just takes a lot of energy sometimes. I have 3-4 people in my life now that I value so much, I don’t even have words for it. Some of these relationships are romantic also, some are pure friendships. I guess they are whatever feels right and natural. One of them is long distance romance, and even though this is hard sometimes (missing each other and not being able to visit often) – it feels worth it. He feels worth it. Another is a deep connection of love, friendship, spiritual companionship and almost a decade of time spent together, and sometimes apart. And one of them is such a fun and adventurous friendship, it’s never a dull moment.
Whether the relationships are platonic, romantic or whatever, I value all of them equally.
The last year has also been a journey for me finding out I am polyamorous. It was like finding out I am bisexual – which I did many years ago. Lots of failing/learning, back and forth and some hurt feelings for me to find this out, but now I feel like I can be myself 100% and that is pretty much one of the best feelings in the world.
“Friendship and romance are not ranks, tiers, or levels. They are not above or below each other. Romance is not a promotion. Friendship is not a demotion. Romance is not “more than” being friends with someone. Friendship and romance are concepts that exist on equal terms, side by side. Sometimes they happen to coincide. Other times they never intersect at all. How relationships are classified is only up to the individuals involved but neither is inherently more or less valuable than the other.” – Unknown
Lately, I have not had much routines in my life; sleep has been either poor or way too much. Like 14 hours at a time. Always waking up with a headache and needing a nap after a few hours awake. Procrastinating things and not eating often enough/not had much appetite. Hasn’t been a full-blown ‘dark night’ – at all – but still not functioning as well as I know I can.
I started doing hatha yoga in 2011, but the last few years I’ve been doing much more sitting meditation than asanas (poses), but been wanting to start again because I know how beneficial it is. So today I started 🙂 Did a few sun salutations (surya samaskara) and some simple stretching. Not too much at once. When I saw my own video I see how stiff I am and not much flow in my movements. This will improve, I know, if I keep it up. Which is my plan!
Four years ago, when I was bedridden, simple yoga movements was something that really helped. Just sitting up in bed moving my joints or doing yoga nidra on my headphones, getting the blood flowing and getting the body into deep relaxation has been a life saver when it comes to chronic fatigue and chronic pain.
Very happy to have finally started again! I know posting this will make me more motivated to write/film an update later on 🙂
Bildene er tatt i Spåkenes.
* * *
Av og til
må noe vare lenge,
ellers mister vi vel vettet snart,
så fort som allting snurrer rundt med oss.
Store trær er fint
og riktig gamle hus er fint,
men enda bedre –
Som ikke flytter seg en tomme
om hele verden enn forandres
(og det må den snart),
så står de der
og står og står
så du har noe å legge pannen inntil,
og kjøle deg
og holde i noe fast.
Jeg trives med fjell.
De lager horisonter
med store hugg i,
som de var smidd av smeder.
Utdrag av Rolf Jacobsens dikt ‘Mere fjell’
[click photos to enlarge in slideshow]
I år på nasjonaldagen bestemte jeg meg for å invitere noen godtfolk til såkalt champagnefrokost, fordi det har jeg alltid hatt lyst til å dra på!
Hvordan dra på champagnefrokost uten å forlate huset for mye? Jo, ha det hjemme hos en selv 😀 Pluss at jeg har en utrolig fin kjole fra 60-tallet jeg reparerte som jeg hadde lyst å bruke…heh. God unnskyldning. Det ble mer enn nok mat, og en god del (hjemmelaget) sangria. Også fikk jeg smakt pavlova for første gang, det var helt himmelsk godt og levde absolutt opp til mine forventninger. Det ble til og med litt igjen etter gjestene dro, og leftover kake er jo noe av det beste som fins. Så det ble kake til kvelds. Helt innafor. Nå er jeg ganske utkjørt til tross for en powernap i ettermiddag, så det blir tidlig kveld på meg. Håper alle har hatt en flott 17. maifeiring ❤ Tusen takk for i dag, dere som tok dere tid å komme å feire med meg. Legger meg veldig takknemlig.
Idag tok jeg meg en liten tur ut for å få litt friskluft og for å meditere i fjæra, samt ta litt bilder. Ikke den mest fantastiske kvaliteten på bildene, da jeg måtte bruke mobilkameraet framfor speilreflekskameraet fordi jeg glemte minnekortet hjemme, og den korte turen opp fra fjæra for å hente det virka som et stort tiltak der og da. Vel, de ble jo litt brukbar! 😀
Ellers har dagen blitt brukt til å se videre på Game of Thrones, som jeg startet på på nytt for noen dager siden. Fant ut at jeg skal se alle sesongene en gang til før den syvende kommer i begynnelsen av juli. Må si at jeg ikke husker halvparten av det som skjer i serien, må har vært veldig lite tilstede første gang jeg så det. Eller så er det bare den “gode” gamle hjernetåka/ME-hodet som gjør det hele litt vanskelig å følge med på.
I år hadde jeg en helt super påske! Har ikke vært på hytte-påsketur på masse, masse år, men nå hadde jeg overskudd nok til å bli med på en aldri så liten ekspedisjon til Målselv og Faksfjorden sammen med en gjeng raringer 😉 Badstu, scooter, brettspill og veldig mye god mat. Kanskje en god del vin. Ikke noe skigåing på meg, men var koselig med litt alenetid også i helt fantastiske omgivelser. Tusen takk ❤
Etterhvert som jeg har vaska håret, ser det ut til å bli mer og mer lilla enn blått (som det opprinnelig var), noe som egentlig ikke gjør noe, da jeg også er nokså glad i lilla. Har fremdeles ganske mye hårfarge igjen og tenker å freshe det opp så snart jeg får dreadsene mine i posten (har bestilt sånne håndlagde syntetiske dreads – igjen)!
Idag var jeg i en tur i byen for å handle litt og kom over en veldig fin mørk blå kajal med glitter samt en blå øyenskygge. Vanligvis kjøper jeg kun sminke på salg, fordi jeg syns alt er overprisa, og idag var intet unntak. Kajalen kosta 10,- og øyeskyggen 20,- – på salg på H&M 🙂 Så da jeg kom hjem måtte jeg prøve de sammen med en lilla matte lipgloss jeg fikk i bursdagsgave. Syns det ble en fin look så tok ‘noen’ bilder. Mini photoshoot med Kali💙💚💜
Nils og Kali, mine to hårete samboere som gjør hverdagen litt mer livlig, hver dag ❤
I wanted to write a detailed post about how I deal with the everyday struggles of having chronic illness. Chronic simply means long term, so it is not written in stone that you will have it “forever”. Which is good news. But to somehow cure yourself from it, is another story. And to be understood by others, is also sometimes difficult. I wanted to write about that, too.
First some background story:
When the body first started to show symptoms of serious illness, I was 18. Crippling headaches, infections, eye problems and stomach problems. At the autumn of 2010, I got mononucleosis and, in hindsight, I don’t think I completely recovered from it. Mono is caused by the Epstein-Barr virus (EBV), which I probably still have in my body, causing all sorts of problems. Then in 2011, it got much worse and I ended up in the hospital for one week – doing tests (i.e lumbar puncture) and being examined by a neurologist. My main symptoms was my poor concentration/brain fog, headache and blurry vision. He saw “nothing” wrong with me, except for the headache, so I got the migraine diagnosis and very strong migraine medication – which did not work!
I lost some weight in that one week, and being a skinny person already, I did not look very good. And I felt worse. I pushed on for another year, before the body said completely stop. There was nothing left, no energy. I had to quit my job and other strenuous activities. I was in the doctor’s office so many times, I think I saw him more often than my friends, and finally he referred me to a specialized team at the hospital who gave me the much stigmatized ME diagnosis. In the following months I could not physically do anything else than rest, go to the toilet and eat. The stomach was not working, my head felt like one big ball of cotton, all my joints hurt, my arms and legs was too heavy to move and the fatigue…oh lord 😛 Not to mention being very scared and frustrated on top of it all.
This went on for many years, with very small improvements. Some periods better than others where I could go to café or out on small walks, but overall still very limited. Today, when I look back, there is a really big difference, though. But it has happened so slowly that it’s hard to notice unless I look back and compare. I feel like I have done most of the work myself – as all ill people need to no matter what illness they have – but I have met good helpers along the way as well. A good private doctor in Trondheim, my amazing physiotherapist who I see every week and also in 2016 I met my yoga teacher and the Open Heart dharma sangha, and the yogic practice is of big help.
Last autumn I was able to go for a mountain hike and I have also been trying out work (6 hours a week in a second-hand shop). This turned out to be too much right now, but it was great to try and to get out some! Now I currently am unemployed and am just focusing on my health, art and practice.
Left: On the bad days I feel like the illness shows somewhat, both in the eyes and the skin in terms of fatigue and paleness. Right: While on the good, or ‘less bad’, days I look better, and it also shows in the eyes. It does bother me that this illness is so crippling, yet so invisible, and so there can be a lot of stigma and misunderstanding when it comes to both family, friends and health carers. The feeling of not being believed or told that “it’s all in your head” despite many studies showing otherwise is like a kick in the face every time. Imagine not being able to walk too far without getting dizzy, faitgued, nauseous, fever-ish and pain, and then someone says: just push trought it or think positive. It’s also hard for people to understand that you can do much one day, but that you will have to “pay” for it later (in the following days – or weeks depending on the severity of the illness). It is a difficult illness to understand, so I don’t blame people, but be careful what you say or suggest, it could sound more harmful than you intended 🙂
Here is a list over things I continually do throughout the day to manage the symptoms:
1. Eat enough, at least 3 meals a day. I stick to a low sugar, dairy -and gluten free diet. I also supplement with smoothies (see picture).
2. Drink enough water. “Enough” meaning whenever I am thirsty (when the body wants it)
3. Take supplements (in cooperation with a doctor) based on blood samples. The brand I use is called Solaray.
4. Yoga. More specifically meditation (tantric). I used to do more physical yoga, but now it’s more sitting and chanting.
5. Compassion practice – as I call it. Working with prayers and intentions for everyone who experience illness with the help of Bhaisajyaguru (aka the medicine buddha).
6. Pace! The most important thing. Do things (i.e housework) in small portions, and not push myself to do more than the body can handle. Sometimes this ‘rule’ has to be broken because some things needs to be done, but I try as best as I can to pace.
7. Sleep when/if I have the opportunity in the afternoon.
8. Listen to some audio book to get some mental stimulation if there is not too much brain fog, when reading is too strenuous.
9. Drink 1-2 cups of green tea mixed with orange juice (which is a super energy drink) 70% green tea, 30% juice.
10. Paint, if I am in a creative mode. This gives me so much joy and it’s very important to have some hobby like this, I think.
11. Talk to people and not be afraid to ask for help (do grocery shopping etc.)
12. Listen to guided relaxation (yoga nidra) when I feel wired and tired.
Here is a list of things I do during a week in order to make life easier:
1. Make big portions of dinner one day that I put in boxes and freeze so that I have meals for several days to come. Making and preparing food can be very draining. And not to mention the dishes 😛
2. Write a diary over things I need to do, and make sure not to put too much things on one day. Pacing on a big scale!
3. See friends – this is something I like to spend energy on, so I try to fit it in often. I felt very isolated when the illness was at its worst, and I realized how important it is to get up and out, so now that I have the opportunity to do so, I do it gladly.
4. Sleep, relax and pace a lot if I know I have a big event coming up (i.e vacation, wedding, birthday party etc.)
Thanks for reading. If you have some good tips on how to pace better or other energy saving hacks, please let me know!
“If you think dogs can’t count, try putting three dog biscuits in your pocket and then give him only two of them.”
Det er mandag igjen, og i dag fikk jeg kjempekoselig besøk av Opal og hennes nydelige “lille” ramp, Findus. Kattene måtte så klart hives ut, men det overlevde de fint, og hadde vel egentlig ikke så lyst å komme inn igjen da de innså hva slags monster som var inne i leiligheten. Husky er en av mine favoritthunderaser (på lik linje med pølsehunder!), tror det har mye med at tante og hennes samboer hadde alltid mellom 10 og 14 huskyer da jeg var liten, og jeg forelsket meg i alle sammen.
Ønska meg blått hår kjempelenge, og siden nedre del av håret allerede var blondt, så var det lett å farge det! Brukte en kombinasjon av beeunique.co.uk sine farger Fish Bowl og Blue Mayhem. Veldig fornøyd med resultatet, og denne typen farge (Special Effects) varer også ganske lenge – opptil flere måneder, og det er såpass mye i hver flaske at man kan freshe opp en gang i blandt før man dusjer. Trenger bare å virke i 20 minutter 🙂
One of my favorite short movies. Beautifully narrated by Leonard Cohen 🙂
Also, favorite meme!
How I do my everyday make-up 🙂
Ny hobby: skrive dikt oppå foto jeg har tatt 🙂
Got my hair done a little while ago by the really talented hair dresser Michelle Sofi at Miss Sofi hair salon in Tromsø. My original plan was to just trim the ends a bit, but a couple of days before my appointment, I decided to do something new, so I googled “blonde brown ombre hairstyle” and thought I needed to try it. It turned out great – I’ve never been blonde before like this (except for when I used to bleach it before I dyed it bright pink) – so it’s still weird to see blonde hair on my shoulders. It took about 4 hours to get it blonde, too, because of my red-ish ends, but I am so happy with the end result that I didn’t mind all the treatments even though it may have damaged my hair a bit. 🙂