I could be writing off my frustrations regarding the total governmental neglect of chronically ill people, but ...

... I refuse. Wholeheartedly. I already addressed my concerns on various occasions, i.e. comments on newspaper articles and additions to questionnaires on global health and well-being in corona times, as well as social media (Instagram, Twitter). The only similar experience came today in the form of a single dad, caring for his 3 children in a co-parenting situation while also managing two jobs. To me, there is no reason to believe our government even realises there is such a group of people who fight every day against their own bodies as their illnesses chronically and invisibly eat away more and more of their health and well-being, meanwhile feeding their depression, anxieties and general feeling of worthlessness.

But I promised not to berate these experiences of mine. Today I want to be light and funny. I barely slept last night, thanks to the migraine that decided to announce itself ten minutes before I went to bed at 9.50pm. I hoped I'd be able to just sleep it off, but Fibromyalgia chose to join forces resulting in me being wide awake, in dreadful pain, at 1.30am. Took my migraine meds at 2, got nauseous about 15 minutes later, and decided then to just call it a day ... night, and opened Merge Zoo to do some mindful candy feeding of my cute little animals. When staring at the same videos ("watch videos to get your reward") for too long and feeling all the more nauseous, I closed the app, put on Sophie Hutchings on Spotify and grabbed my current Terry Pratchett. I read till 4am. Ish. The final time I looked at the clock, was 4.45am.

Painsomnia is a terrible thing. It deprives the body of the so necessary sleep and causes even more pain, making the next day a trial of pure adrenaline, only to backfire as the day progresses. And regardless of knowing this, it will still hit me like a sledgehammer. It could not have come at a worse time either, for in three days my son will return and I'll need a lot more spoons than the shortage I start my days off with lately.

In a couple of minutes, my friend will join me for a walk in the nearby fields and meadows, to get some fresh air and also just to be with each other, respecting social distancing ruling, naturally. Although we both suffer from Fibromyalgia, she has it in a much milder degree than I do - for instance, she can still work and do a bunch of activities I had to let go of. Today, she texted me her pelvis and lower back are hurting - yesterday she had this wild plan to go somewhere on our bikes and hike there, but there you go: with a chronic debilitating illness like Fibromyalgia, we have to take it day by day, and need to be extra careful in planning activities and outings beforehand. Most people do not get that - it is why friendships with healthy people can get quite tricky, as the lack of empathy and acceptance starts weighing on the spoonie, just when they need unconditional support the most

But, light and funny it is to be, right?
Let me get back to you after my walk in the fields 😁

Discoveries during Quarantine, on pain, on mind and on HS parenting

As I am delegating my grocery shopping and doing even more online pharmaceutical purchases to avoid exposure to people who might be infected, I find myself not only missing those rare social encounters that used to lift me up a bit before Covid-19 struck, but I also am missing - on a more urgent and deeply level - the professional physiotherapy and the trauma therapy. 

What to do when the body starts failing even more despite daily yoga routines, and the mind will not be silenced by soothing meditations? I am trying to stay positive but I can tell you: this is not an easy task. It takes up a lot of the energy I need to get through the day pain-wise. My collection of spoons is very low by the start of any given day, but lately I need almost 20 minutes to even try and get out of bed. It takes up to an hour to be able to walk decently, instead of like a grandmother robbed of her rollator. The hot shower, right after giving Tiger his medicine and NHV, followed by the Patches NHV ordeal, and the general cat breakfast, has become a necessity instead of a luxury - without it, my lower back, pelvic girdle, hips and neck cannot loosen properly. The yoga session, following the shower, is a very, very painful one. Acute headaches, growing into monstrous migraines, as well as nauseous spells are unwelcome guests to that party.
My days now are spent in isolation with my cats. Used as they are to me being around, they ignore me quite a lot of the time, unless they need filled bellies or bring a mouse, or swat bees. I get up in the morning with many plans to do, but after the painful yoga, and the using up of over 7 spoons, I can only carefully sit down on the couch, heat pad in my back, and read the latest news on my phone. I get restless of doing nothing worthwhile. I feel bad and guilty for not creating any art. On Instagram there are several posts on how to flow in the moment, to cut yourself some slack. But I have been cutting myself slack for over a month now, and the pain is only increasing, embedding itself in the core of my system. I worry. I worry a lot about the future. In the midst of the past quarantine, I got a letter from my Health Benefits Office: Are you still entitled to being disabled from work?

I am trying to grin through all that, whilst finding ways to lighten the fog and overload in my mind. One of my (new) friends on Instagram recently posted a picture of the audiobook she was listening to, The Highly Sensitive Child, by Elaine N. Aron. As both my son and I belong to the Highly Sensitive People group, I got intrigued: I often doubt the way I am handling my child, having my intuition guiding me, searching for ways that would help me battle through the sensory overload, the pressure of shoulds and have tos. Before he left to stay with his father, he told me in a warm, gentle and actually little surprised voice, how happy he is that we are so often on the same page, sensing each other's feelings and moods and even thoughts, finishing each other's sentences. And we have the same sense of humour too, a huge asset in these quarantine times. Sadly, my Audible does not have that book in their library, BUT I found another by Elaine N. Aron, The Highly Sensitive Parent. And that book, my friends, is such an eye-opener in many ways. It has left me with quite some AHA-moments, as well as some good cries - as I finally start to understand that what I believed about me to be true, is just me being highly sensitive, to my own deeper self, but also to others, to moods and tones of voice, to worry and doubting, to weigh each possible choice and nearly drown in the chaos of possibilities. It explains why in a bookshop, back in the day, I will grab every copy I like, then start contemplating "should I?", followed by putting them back one after one. It explains why when buying online, I will often empty my cart, only to return a few days later, having given the purchase many hours of thought (and guilt and headaches) and deeming myself allowed to buy them.

On parenting level, this book supports me in my parenting style. I have often discussed parenting trouble with non HSP's and been told I need to be firm and not give s much freedom as I tend to do. Things is, with my boy, now 10, one is able to negotiate. he is both blessed and cursed with a high intelligence, a high and deep sensing of others' moods and expectations. It makes things hard, in that he will reply with answers he thinks you desire of him, and it makes things easy when I sense he worries and he finally gives in and talks to me, because he knows I only want him to be happy. In that way, my parenting seems to be of an emphatic kind, understanding, yet with boundaries (which often proves the hardest still, as I look beyond the wants and desires, I look at needs, I look at his full head, and decide then to loosen a boundary or not). And I follow my intuition a lot: I mean, a LOT. Seems to be an HSP thing. And it means also that I am not weak, or fragile, or living in an imaginary world, or dominant, or arrogant. It means, like so many others, I am just trying to be me, in a world that forces me to be someone else, even now, in quarantine times.

Stay safe. Hang in there. Read. Listen. Get to know yourself better.

Quarantine is actually my normal ... uhm ... (a little rant from a spoonie)

Since March 16, Corona has put us all in some form of quarantine. Funnily - or rather, sadly - for me this requires very little adaptation as both Fibromyalgia and the treatment for Colitis Ulcerosa with immunosuppressants have been forcing me to stay at home for over 14 years now, . The majority of that period I was in a toxic marriage and trying to stay on top of toxic relatives and in-laws while monitoring household, freelance work and parenting. There was no support from government, and my social circle grew smaller due to lack of energy and understanding.

I try to be sympathetic to those healthy people now confined to their own four walls, with their loved ones, being in each other's constant proximity while trying hard to keep a sane mind as well as feeling useful to both family and society. I try not to shout WELCOME TO MY WORLD, as that would be very nonempathic and also rude. But I do think it. I do think that they are lucky to be understood by their loved ones, their friends, the government. Because now "we are all in it together". Suddenly there is a major feeling of standing strong and raising awareness for mental health during these times of social deprivation. I both hail and get frustrated with companies, government facilities and employers in general who all of a sudden get very creative in creating possibilities to work from home. I was fired from my job as a therapist due to my illness, and there was no guidance, no re-mediating to a more flexible job that befitted me.

True, current technologies make a lot of these teleworking possibilities a reality. Back in 2005, 2006 this was still in its developmental shoes. But even in the years following my confinement at home, I have never been contacted to check how my mental welfare was, or how I dealt with suddenly being stuck at home, labelled "completely useless for the job market". I was forced to reinvent myself, mostly on my own, here and there aided and supported by the friends who still stuck with me.

Mind you, I am not angry with people who complain about their current situation. I just get upset because I feel the chronically ill, who lost their jobs due to their unwanted illness and have been discarded in very rude ways, who fight against anxiety and depression every day because they are isolated as a result of not being able to keep up with the healthy folks, who put a lot of energy in healing to manageable degree of pain and/or discomfort, who also try their hardest to be there for their loved ones, we spoonies, we seem to be forgotten.

Earlier, I read an article in the news about a former astronaut who was interviewed regarding this quarantine situation. "It is very similar to being in space", the man stated. And I was like, what the f***? Why not ask a spoonie about their social isolation? Or their frustration when they finally got enough spoons to go grocery shopping and stand in line to go in the supermarket, aching all over, only to find every toilet-paper shelf empty?

These times should bring out sympathy, solidarity, empathy. Reality often shows a tragically opposite truth.

Despite my rant, I am deeply grateful for all measures being taken to keep everyone healthy, to protect everyone from getting sick. I am grateful to health staff, mailmen, garbage collectors, veterinarians ... for still being there for us. Thank you. My cat Patches was saved from a severe allergic reaction to a (bumble)bee sting in her face, and without our vets, I dare not think what would have happened. Thanks to my mailman, I got lovely cards for my birthday and online orders are still being delivered.

I just wish us spoonies were considered more important than as a mere footnote in the comment "most people likely affected by covid-19 are the elderly and the chronically ill, due to their insufficient immune systems". I am on both Ledertrexate (Methotrexate) and Remicade, both of which affect the immune system in not too good a way. And I worry - even though my doctors convince me I should not.

What I want to say -- be kind, be as understanding as you can manage, follow the rules, protect others by protecting yourself. And when this is all over and all you healthy folk are allowed to return to your jobs and to roam the streets, parks and restaurants again, remember that for us spoonies this current way of living merely continues indefinitely.

The balance in life, or how to try and change our views

Many people aim to focus on the positive things in life. You see it everywhere on social media: happy pictures, promising and uplifting posts, meaningful experiences, enriching encounters. But you know, how would we know these are blissful and happy moments, had we never known the bad and dark times that coloured our lives in a different yet equally meaningful way?

You see, I myself have always had a negative attitude towards life. I never questioned it; I was a difficult child according to my mother, too sensitive, too anxious, too much of things that didn't fit in our family. We were severely beaten and emotionally abused as children, my brother and me. Later the beatings stopped, but the psychological warfare continued relentlessly - my brother (her golden child) allied with my mother a long time ago, and things have never been the same for me since. Maybe that is why I developed a rather negative attitude towards the world. I used to do towards life as well. I have had such intense suicidal thoughts I still do not know how I managed to grow above them.

But I did. And I'm working really hard to heal my mind, heal my views and thought patterns. To change my coping. Because it (coping, me, me in relationships) all started with my inner self - hyper sensitive and too smart - and it got aggravated through the abuse: I grew suspicious of everything while trying, desiring to be open and trusting. To be positive within all this negative.

Through my university years I learned how trivial things can be, how superficial people - and life - can be. I was on Facebook for such a long time - "Everyone is on it!" - and got really very depressed as people seemed to lead such marvellous lives. With tons of friends. On countless holidays and outings. And I was dealing with chronic illness that got me fired, a narcissistic mother, a spiteful brother- and a wishful thinking lovelife that got me into a weird marriage and divorce.
Despite the knowing Facebook is not REAL, it still got to me. Badly.

It took me a long time to realise: many people hang on to these positivities to keep their heads up in a killer world. To stay strong themselves. To survive. And I have to admire that.
But it is not how I deal with things. When life gets bad, it gets to me intensely. It swallows me up. Because I experience everything so deeply. I need to brace myself everytime this happens. I need to ... prevent the panic attack by grounding myself. And since all my good experiences turned on me in some way or other, I first get very excited but then doubt sets in and I get wary. Bad coping. Something I truly need to work on. I need to start seeing that my "negative" start is a means to learning about a "positive" way of living. And this is why I got professional help - because this ... I cannot do on my own.

We all need a balance of good and bad in our lives. Because it never is all good, and it never is all bad. We just need to DARE to look at these experiences that frighten us openmindedly: every situation, every encounter teaches us something, and we have the power to label it thusly. Not bad or good, but a lesson.
This is how I am trying to look at things now, instead of taking it personally, too happy or too grim. Because life is hard enough, without us putting ourselves down. ❤

After the Divorce: discoveries, contemplations and healing

I have been trying to keep track of my blogging for the past years, and obviously failed miserably. Thing is, my mind has been feeling like a big black hole, consuming information without processing it, just gobbling up experiences, thoughts, memories and conversations, devouring them like pizza - or cake. I feel my mind now is getting better, ever so slightly. Not nearly there yet, it never really gets to *that* point with Fibromyalgia and its greedy Flares and Fogs. But the new supplements, some major changes recently, and working on a different mindset are doing their mojo.

My life now could not be more different than, let's say, three years ago. After ten years of marriage, of which the final seven were absolutely and painfully challenging, I gave it up. I had to, to protect both my child and my sanity. I also had to block my family after that; their resentment went over the roof after I announced the divorce, as if they were the sole victims in the story and I the one to cause all the problems.

It's only now that I am trying to heal myself, by acknowledging my past and my marriage have hurt me and that I am now in the position to change my attitude towards that as well as the people around me, that I am discovering both my family (especially my mother and brother) and my ex have Narcissistic-Manipulative Personalities. Being brought up by a narc mother certainly did no good for my mental and emotional development, and while my brother soaked up the abuse to become a true narc himself, I grew into this ever anxious, worrying and hypersensitive creature, that learned to put others first as she herself was not worth any attention, let alone love. This attitude in life drove me into the arms of another narc person, though, like I mentioned, I only found out about his true self after I already left him. The marriage however left me broken and empty, and I haven't felt like that since I escaped my parental home decades ago.

Living on my own already taught me a lot about myself, my way of cultivating my experiences and trauma as a shield to protect me yet push people away, and the friendships I have/had/believed to have. It had me build my walls higher, and leave little Alice-in-Wonderland doors for those special souls who are supporting me to this day, be it with money, groceries, peptalk, or just being there. Or all of the above. It is teaching me I am my own master, that I call the shots now, and that I am no worse or better than anyone. That I have to be there for me, and my son, and that I am responsible solely for my reactions.

It also taught me about being a mum. My son stays with me most of the time, yet every time he has to leave for Dad, it rips my soul apart. The first night is the worst; I postpone going to bed, I wander about like I'm lost, and sadness and loneliness tsunami over me with relentless power. And I keep saying, It's temporary-Itstemporary-Itstemporary-Itstemporary-Itstemporary - a mantra I hold on to like a floater to driftwood in an angry ocean. It gets better when the days pass, until I see him again - then there is a blissful period of unison, right up to L-Day, Leaving Day, and the sorrow and forlornness start all over again.

And it taught me about the therapeutic advantages of cats. With three cats about the house, there always is one nearby to curl up against me and soothe my anxiety and worry with intense purring, headbonks, biscuit-making, or mouse-bringing. Although I miss the cats I had to leave with my ex, I am truly grateful for my Landlady, who eventually and by grace of the real-estate agent, allowed me to home the other cats, as she was not very keen on pets at first.

Even though I keep getting overwhelmed by sadness now and then, and I do doubt myself and my worth more than once, I have found some amazing people who are still helping me to keep my head up and face the world with courage and optimism. I take every day as it comes, and some are easier than others. I realise some things are temporary and others are just the way they are.

A constant worry though is money. Because I am now single and on disability benefits, life has become pretty expensive. The benefits are taxed as normal income, both rent and insurances for home, family and car gobble up most of the monthly allowance, the fixed household costs are frightfully high when you are on benefits. By the end of the month, due to some bad choices and trusting the wrong people when I first left my ex, I am evidently maxed out, and by law I am thwarted to make some extra money, as I need to make quite a lot to compensate for the withholding of 10% of the monthly disability allowance. And with my BlackKittySketch postcard design (on Instagram: @blackkittysketch) I never made that amount of money. (But I did make a lot of people happy!!)
These are things they never teach about in school: What to do if life throws you lemons as big as watermelons? *sigh*

See, que sera, sera, but I wouldn't mind the que being light and lofty for a change ;-) In the meantime, I try To Be More Cat and go with the flow.