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 🤓🙏
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.
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! ❤
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”.
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
I got a question in my comment section if I could write a little bit about what effect tantric yoga has had on my health, and this made my head spin with ideas about what I should write because I think I have something to share and I am always happy to talk about my yogic and dharmic practice, it being a big part of my life. I wrote a post earlier this year about my health/illness, but I will just mention again what kind of health struggles I have to make a context.
So, in 2010 I came down with a serious viral infection (mononucleosis caused by Epstein-Barr virus) which left me very ill. I have had some health issues almost all my life (IBS, migraine, eczema), but this was a big blow to my immune system and gave me lots of symptoms: brain fog, muscles pain, headaches, worsening of IBS (more stomach problems), sleep problems, weight loss, hair loss, extreme fatigue, vision problems, terrible memory, numbness in certain areas of my body, dizziness, mood swings, adrenal exhaustion, thyroid imbalance, dry itchy skin, cold extremities….the list goes on, but lets just leave it at that 🙂 Losing my energy and health also made me lose most of my social life/relationships and this of course made me very isolated. So no doubt it affected my mental health/mood as well.
In 2011 I started doing physical yoga, more specifically hatha yoga. I signed up for a course in town and I remember feeling really good afterwards! It was like I found back to an old activity I had done many times before. I loved the asanas (poses/movements) and the pranayama (breathing exercises), and I came in touch with my body for the first time in….well, forever. What is also so great about physical yoga is that you work with the body and not pushing it too much like you would pumping iron in the gym. I adopted the exercises to my daily routine, even if I was bedbound I could do something simple like yoga nidra (systematically going through and relaxing the body in your mind) or just moving hands or feet to make the blood flow.
I did hatha yoga on and off for many years, until I stumbled upon awakening and tantric yoga in January 2016. It was quite different from the yoga I had been doing so far; mostly focusing on the body and not so much the mind. As I understand tantric yoga in my own experience, you work with mantras and vizualisations to transform the dualistic mind. You ‘invite’ energy into your body, mind and aura through specific practices so that karmic imprints, patterns and subconscious mindstates can be processed and thus cleared. This sounds strange at first, at least I thought so. But still, there was no doubt that it worked, and still does, as I do the practice every day.
After I started doing tantric yoga, the illness has been easier to handle; it’s like I see it from a very different perspective because doing these kinds of energetic practices transforms a lot of my feelings around the illness, but also deeper stuff. And as the lid of fear and feelings about being ill slowly has been lifted, the illness itself is easier to address. It is also my belief that chronic illness is not necessarily forever. “Chronic” means “long term”, and I don’t think or hope I will have these health issues for the rest of my life. I also think that the practices has a direct impact on transforming how the illness acts in the body, as I have felt lighter and not as fatigued after starting tantric practice.
When it comes to long term illness and dharmic/yogic practice, I’m going to very cliché and say that balance is key. If you feel too sick some days to practice for 2 hours then maybe 15 minutes is enough. But I feel it is very important to do at least a little bit every day, not lose practice completely (which I have in some periods) and to always keep in mind why you are doing it. I often think about my own motives for doing anything, perhaps sometimes also overthinking it, but I feel when it comes to this, it is becoming easier to find the discipline to practice as the years pass because I see the benefits and my motivation is simple and clear: I wish to get well so that I may benefit others. And I don’t wish to be ill anymore.
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!