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.
I’ve always valued close human interactions. As a kid – before I got social anxiety, hah – 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 🙂
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💙💚💜
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 🙂
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. 🙂
Det er eventyrlig vær i Nord-Norge for tida, og det må utnyttes til det fulle (sier jeg mens jeg ligger på sofaen inne:)). Jeg har vært ekstremt syk de siste månedene, med enkelte dager innimellom der jeg har følt meg bedre, og i går følte jeg meg bra nok til å lese. Så jeg har endelig startet på Harry Potter! Elsker filmene, og er ikke en dag for sent ute til å begynne å lese bokserien. I går kveld ble jeg dessuten sittende å se en dokumentar om J.K. Rowling. Herlig dame! Visste du at hun ikke har et mellomnavn på K i det hele tatt, men at manageren hennes ba henne legge til et, slik at de kunne bruke initialer som forfatternavn? Grunnen var at de mente flere gutter og menn ville lese bøkene hennes om de ikke visste de var skrevet av en kvinne. Javisst 🙂
Nå ligger jeg som sagt på sofaen. Har sittet ute å solt meg litt, men fikk vondt i ryggen fordi jeg ikke eier hagestoler så jeg ble sittende på en krakk. Jeg er på boligjakt, dvs. leilighetsjakt, for tiden og håper jeg finner meg en plass med uteplatt eller veranda slik at jeg kan investere i ordentlige hagemøbler 🙂
Ellers så kan jeg meddele veldig bra hårdag 😉 nesten like bra som været, hehe! En speil -og katteselfie var på sin plass. Har sluttet å farge håret (for nå iallfall….), så nå begynner det å bli fint og fluffy igjen. Det liker vi!