Co-parenting is a weird construction. Not weird in the logical, legal way, but in an emotional, human way. Despite knowing - and experiencing - the pros and cons, it always leaves me bereft and sad when the boy has gone in his father's car. And while he is no longer crying and his face is no longer a pale mask of utter forlornness, he still has that gleam of sorrow in his eyes where his smile to me does not reach.
During these corona times, his father and I eventually decided to adjust the co-parenting schedule from 10 days here and 4 there, to a 7 by 7 days period. It took me some convincing, because his father is not the kind of man to give up his newly achieved freedom for the capriciousness of a ten-year-old; but I persisted, because corona forced a hold to all ongoing therapies, and my body has been flaring up really badly due to Fibromyalgia. On top of that, the boy had trouble getting into the schoolwork mood, so the revisions he initially had to do, were a labour to say the least. I simply could not keep up with his overflowing highly sensitive mind and his mood swings at the time. When the notion of pre-teaching was first launched two weeks ago, I repeated my suggestion to the 7x7 deal, focusing on the balance of schoolwork instead of my failing body, and there we are now. This week started off with the first day of pre teaching here; the rest of the week the boy is at his dad's.
Leaving me to the cats again.
Used as I am to being alone, it now seems to hit me more than before. I mean, before the "lockdown light" as some like to call the Belgian time of covid-19 quarantine. Society does not seem to worry too much about the chronically ill people who have been home-bound for years and years; they ask a former astronaut for comparison to the current corona lifestyles. Working from home back then was impossible or not even contemplated; now employers bend over backwards to make it happen. The focus on fragile people consists of elderly, pregnant women and mentally disabled people. Not a word on chronically ill or how they experience these covid-19 restrictions and fears. Society worries about the complications of anxiety, depression, despair ... of the lockdown on people - the healthy people that is, the ones who work and are needed for the economy. When I was sacked, on my 30th birthday, due to Fibromyalgia and too many absences, I had just started my career as a children's therapist; I had spent three years looking for that job. And it turned out to be very easy to discard me. I lost whatever frail respect my family still had for me, and I lost a lot of social contacts, as well as financial freedom. And now, in the midst of this pandemic, the chronically ill are discarded once again.
That written, I have to admit I am happy to be here, now, on my own, after the divorce - because my marriage turned nasty and frightening, and I dare not think what could have happened if corona struck back then. That bonding was a very different kind of loneliness, the feeling lost in a relationship that should be filled with love and understanding and compassion, coming to an unexpected end as soon as a child is born and the role of the woman is done. That was another form of being discarded altogether; I often found solace with the cats, especially my Patches who is very sensitive to energies.
However, these quarantine times are similar to my normal of the past 14 years, except that now I even see fewer people, as I refrain from going anywhere except to the vet for my cats, and maybe the mailbox to post some snail mail. My ex does my grocery shopping, a friend buys bread for me. And when my boy is here, we enjoy every minute of spending time together, we talk and we laugh, we share a similar sense of humour, and as we both are highly sensitive people, we tend to 'feel' each other in more than one way.
But now he's gone, and all of a sudden it's just me and the cats again, amidst the invisible corona lockdown walls.
Tuesday, 21 April 2020
Friday, 10 April 2020
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 😁
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 😁
Monday, 6 April 2020
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.
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.
Thursday, 2 April 2020
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.
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.
Subscribe to:
Posts (Atom)