Why healthy people’s panic responses to COVID-19 perplexes the chronically ill

I wrote this the other day and it’s very rough around the edges but as this is a window on current events I’m posting this during the time it’s happening. Here is why The Spoonies are Baffled…!

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The stuff healthy people have been panicking about has seemed kinda surreal to us Spoonies. It’s just so far from our reality. That’s not to say their concerns are less valid than our own, everyone’s concerns are valid, but they can be very different indeed and from a broader view there is a distinct difference in scale of risk e.g. ‘I’m worried I might run out of food’ on the one hand and on the other ‘I’m worried about my heightened risk of death, I need to isolate for my own protection but am having to go to the shops even more than usual to try to find food because everyone else seems to have bought it all’.

Elle and the Auto Gnome, Brain fog

A cartoon sketch of me looking utterly perplexed.

Magic Dude is having to come home via the supermarket more often, not less, because he has to keep checking if the essentials that weren’t there have been re-stocked yet. This is the complete opposite of what he should be doing as he has a vulnerable partner at home. We live in an individualistic society, I know everyone looks after themselves first, but buying up all the supplies so that the most vulnerable can’t isolate feels pretty personal when you’re one of the ones being put at greater risk.

Healthy people will have to be at home for awhile. Anyone who does this will save lives. We generally cannot do all the things that you can do at home. To us you have a superpower, a privilege of relative health and able-bodiedness. You have time at home during which you can do stuff that we battle our bodies to do once in a blue moon.

Seeing as our worst case scenario from catching SARS Co-V2 is death… running out of loo roll is pretty meh to be honest. We have cloths and a washing machine. I’d rather that than die. No biggee, right? Stuck at home for a few weeks, meh, try decades, we’ve got this! Having to explain to people why they shouldn’t put others at risk, weeell that’s an extension of endlessly having to explain our conditions anyway, we even have to explain our specialist conditions to non-specialist doctors so it’s basically same-old same-old. But none of these are easy. Having no toilet roll is, well, shit! But more so when you’re chronically ill and less able to do washing. Being stuck at home but being unable to do anything owing to the chronic illness is sucky beyond description. Having to explain why we have a right to treatment/life is indescribably exhausting and demoralising. But when my bruv called me the other day and asked how the lockdown was going I said “same as always!” and laughed, because this is my life. It’s not going to pass. Everyone else will go back to the Great Outdoors and Doing Stuff and we will be left living our lives silently behind closed doors again. Forgotten about once more.

A lot the stuff healthy people are currently worried about and experiencing to a lesser extent, for the most part, also creates a chance that maybe, just maybe, some people will get an insight into how they are aspects of our permanent, daily lives.

An ‘ah-ha moment’ could potentially happen!

How long they’ll remember that is a whole ‘nother thing, but still… a moment of understanding from people usually outside of comprehending our reality can be important. It can strengthen or recreate a connection to those friends who don’t really keep in contact, who don’t visit even though they always say they want to, (a typical impact of chronic illness is loss of friends and occasional empty promises of seeing a 3D human are initially thrilling but often ultimately devastating). We’re so isolated pretty much all of the time.

For years.

We see doctors and sometimes family.

And.

That’s.

It.

Each year I can count the exceptions to this rule on one hand and still have fingers free to hold several biscuits at once. (This may of course be a bonus)?

So yeah, this is kinda like my experience growing up in the countryside and getting snowed in by 6’ snowdrifts a couple of weeks per year, then moving to a city and witnessing the carnage and panic caused by a mere dusting of snow. It was so beyond my comprehension that anyone would act that way in what, to me, were such minor circumstances that it was truly surreal to behold! The chronically ill community and our carers are seeing the healthy population do things that we find utterly bemusing under the circumstances. Magic Dude has often been lost for words to describe his befuddlement over what he’s been seeing and experiencing when he goes on essential food runs. There’s talk amongst healthy people of how it’s not surprising because people are under so much stress, and yet we’re still utterly bemused because we are under at least that much stress all the time and we can’t comprehend how it would cause that behaviour. To us it looks like a madness of sorts.

Then there’s the angering behaviour. Some crafters have been smugly showing off their finds online as if there’s nothing wrong with buying the last bottles of alchohol swabbing stuff from the diabetics stock. Seriously? How is this acceptable in any shape or form? I can’t imagine what kind of people would see such a post and cheer at someone effectively saying “I can craft at the expense of a vulnerable person’s health. I did this by choice. Yay me, bet you’re so impressed/jealous!”? Or at least, I don’t want to imagine those kind of people. Or those moaning about how the vulnerable customer hours at supermarkets are filled with ‘normal’ people when, you know, invisible illness is the majority of chronic illness and these people are very vulnerable. We’re as invisible and deemed irrelevant as ever it seems. In the UK we had weeks of ‘oh it’s okay, only the elderly and chronically ill will die’. Oh. That’s okay then. (Arse).

So… we have to look out for each other because in our extensive experience pretty much no-one else is going to.

Fortunately, the UK is now catching up with what we knew was coming weeks ago and did nothing about. The government has advised we remain at home and only go out for essentials such as procuring food or medicine. Magic Dude has fiiiinally found that places he’s getting sent to for work are no longer packed with people. He has been designated a ‘keyworker’ and can’t work from home so he can’t fully protect me (or himself, he has asthma) as he has to go out into the world and he has to come home to look after me. We need others to protect us by not going out there. Humans shed coronavirus for days before even starting to show any symptoms, so not feeling ill has no relevance to whether you are spreading the infection to vulnerable people. He was working in a hospital the other day and overheard someone say “I realise it’s real, now”.

<headdesk>

Meanwhile, here’s an insight to what’s been going on in the chronically ill community. First: it’s… well… a community, so it’s not so extremely individualistic because we strongly identify with each other. We’re part of the same tribe. Broadly speaking there is support and information being shared, a good support group can be invaluable to a patient. There are differences and personalities that clash but when the shit hits the fan we band together. Unlike in the healthy population the main go-to is not ‘save myself’ individualistic values. The main theme is information based – we want to share it to protect each other and the information is even more important to us because we are far more at risk from complications, but not everyone is trained on assessing source reliability. Sharing anything we see without checking the source is how unhelpful / incorrect information gets spread. This is an issue for healthy folk as well but a) it doesn’t risk their lives to the same extent and b) it seems to be secondary to Buying All the Things.

We know what it’s like to be without. To be restricted. To not have health support. To need meds and not be able to get them. The majority of help and information-sharing that I’ve seen in my social media network of both chronically ill and able-bodied has actually been from the chronically ill. Those who are most limited and most vulnerable are being most pro-active about protecting others. ‘At risk’ people still recovering from the coronavirus reaching out to share crucial information with fellow patients. ‘At risk’ people in hospital reaching out to their fellow patients because they know those are the people who understand the risks and complications and can offer relevant info or advice rather than empty encouragement. ‘At risk’ people sharing information to protect their at risk friends and extended family.

The other type of friend in my social media world who have been sharing valuable information are my science friends. Some friends are both ‘at risk’ and scientists. (Yes, we can be both highly qualified and intelligent while also being chronically ill and even cognitively impaired).

The general kinship of the chronically ill is often online because that’s where we live. Social isolation is nothing new to us, it has been our bane for years, often decades. For me, getting to a Tai Chi class was the most social event I got to go to. Since I deteriorated post-fall over 3 years ago my social gatherings are pretty much only with headphones and a laptop. We get to know each other, we get drawn to people who have the biggest overlap with us in a Venn diagram of who we are. Friendships are made and then this happens…

There are tight knit online networks of dear friends who’ve seen each other through thick and thin for yeeaars. Shared with each other details which we can’t share with our healthy friends coz the majority have enough trouble coping with what they know about our illnesses already. Risks of surgeries get discussed in reassuring but practical ways around the condition in question. Health hiccups get posted with questions and the ill-friend network answers. Research papers get shared to inform confused GPs. We can be honest about severity and risk factors because we ‘get it’, we aren’t phased by the severity of everyday issues because that’s our daily experience too. Severe and in-your-face-real is what we have been dealt by our conditions and fellow patients are best placed to understand and support each other even though we’re each up to our eyeballs already.

Along comes another threat to our health. Only this time it doesn’t just threaten one person in the group at a time, it threatens all of us at once. But other than that, it’s ‘just’ another threat to our health. Admittedly it’s a big one, but the point is that this is what we Do. This is what we live with. All the [hecking] time. The risks we face with our health, our treatments, our meds etc on a daily basis are constant and continuously fluctuating and morphing. So we’re not only having to deal with this continuously but also having to endlessly adapt and be flexible to the shifts and changes because they change the problems, complicate them, force us to learn more to understand the science so that we can explain it to our non-specialist doctors. If we don’t we’ll go under. We’d get taken down by the severity of our symptoms, our meds side-effects, our lack of treatment, our lack of medical support and/or understanding. It is relentless.

In light of this insight into the differing responses of the well and the ill, it is hardly surprising that there were initially memes all over the chronically ill community about how when the ‘normies’ are ill we should suggest thinking positive and trying yoga. This is amusing to us because….we get told that shit aaaall the time. Sometimes people will go out of their way to specifically write us a message about the wonders of [insert magical cure here]. Having to repeatedly point out that stuff that helps with certain issues to small extents cannot magic away a neurological condition gets old fast. So after all the yeeeaaars of getting this repeatedly from sooo many people…this is darkly amusing! It’s cathartic!

Elle and the Auto Gnome, health comments on a scale

A seesaw diagram leaning down on the left of the fulcrum. On the right are a few postive comments from medical practitioners (including “There’s nothing left I can teach you”). Weighing it down on the left are a lot of uninformed and damaging comments from others e.g. “Here’s a book about thinking away your pain”, “You’re doing physio so you must be getting better” right through to ” It’s all in your head” on the far left.

And when people are complaining about getting bored at home we’d like to point out that we’re soooo happy if you’d like to swap awhile, you can manage this crap for a bit whilst we finally get to paint and DIY and garden and Tai Chi and bake and and and….all the things we could do at home if we only were well enough.

Of course we could resort to that other age old claptrap we get and start telling people that “it must be sooo niiiice to be at home aaall the tiiiiime”! (Spoiler: it isn’t). (Especially when you are ill and it’s forever).

We use humour to cope with yet another threat to our health (and potentially to our lives) because there are so many of these over the years that a somewhat dark and twisted humour becomes a survival tool of sorts. But what we really want is for no-one to ever say this crap to us again. That maybe they will get some insight to our lives through how much they hate having to stay at home for even such a short time, how bored they get when that’s not even a drop in the ocean yet. Or maybe, and here’s a thought, they might actually stop buying aaaall the Things.

Our healthy friends won’t ever truly know just how relentless that stuff is so they’ll never know how much of a relief it is when they don’t undermine our entire existence and everything we battle through 24/7 with one ignorant, offensive comment. But this health-scare experience might mean a few additional people realise how inappropriate that stuff is. Every little helps, right?! A few less comments like these to deal with would reduce the amount of daily crap we have to deal with. Which would be nice, right? So I can hope, right? (Magic Dude says my most annoying trait is how ridiculously optimistic I am, but I need it to survive so it’s staying).

We love our friends who don’t come out with the Stoopids. To them we say ‘thanks for not being dicks, we The Spoonies appreciate it!’. They’re probably the people who aren’t panic-buying everything from under us, too.

Maybe now that the reality of the threat is sinking in we might see a change in behaviour to something more sustainable to get us through the next few weeks or months. Over-burdened hospitals means that people with no virus but who need to be treated for car accident injuries or a heart attack, for example, may not get the treatment they usually would. Their risk of death is higher because having more critical patients than ventilators means that choices have to be made. Those more likely to survive will be the lucky ones prioritised for treatment. In other parts of Europe we are hearing from nurses openly saying that patient age is currently their first decision maker. Whilst this goes on everyone is at risk, not just those vulnerable to disease complications from the virus. And as people realise this they are finally staying indoors, because now it affects them instead of ‘just’ the vulnerable. <sigh>

As Terry Pratchett pointed out we can be pretty intelligent individually but get us in crowd mentality and we can be pretty stupid. Everyone for themselves and reacting en masse. We see a difference in the underdog groups though. By definition we need to come together to survive because as individuals we don’t count. And we do that as best we can in the face of whatever the masses are doing.

Those chronically ill patients that are also ill with potential COVID-19 are reaching out. Some are in hospital, some at home. Those of us that have any info on potential mitigating factors are sharing them, and there’s a whoooole lot of unconditional support between crip besties. It’s still not quite feeling like spring yet though and winter beats us up to a desperate symptomatic heap of non-functional. Many of our pals haven’t come out of winter shut-down yet, they’re still trying to get to a level where they feel they can communicate. We see posts from them before we get messages. If there’s posts we are reassured, when even those go quiet we know they’re having a ridiculously tough time. Suicidal thoughts are not uncommon for people living with such endlessly intense issues impacting on them, we are used to talking to each other about such stuff. I post stuff regularly and know that my pals are reassured by that. My healthy pals have a different concept about that than my fellow patient friends, they tend to see this as a sign that I’m ticking over okay or at least mostly coping. The latter group know how much I’m struggling not because I tell them more, but because their insight into the reality behind my posts is razor sharp as a result of their own experience. I’m not saying I get suicidal btw, I’ve been there and come through it by my own decision (those that have been revived by medics or talked out of it by others have a high risk of recurrence whereas I’m a stubborn old bint who made a Decision, damnit!) But I’m saying that it’s not uncommon for the chronically ill, and understandably so. And then the government and media declared that it’s okay, only the vulnerable will die. It’s okay. It’s only us. We have no value. No worth. And here’s that other uphill struggle. Where society says our value is in ‘what you do’ in society, for a living, to earn money. It’s bollocks of course, but it’s internalised and takes some (a lot of) routing out. We have to band together to acknowledge each other’s worth, lift each other up, encourage each other. “Keep going.” ” I’m here.” “You can do this.” and that gem of a friend who says “how can I help?” , listens to you turn down their help numerous times with very sensible reasons and then does their own well-informed damage assessment of your situation and, when required, says “tough, I’m helping you anyway!” We have to counterbalance the damage that general society does to us, by sidelining us when they’re not actively punishing us for being ill (I’m not getting into that here, but trust me, benefits assessments are not accurate, people who look ‘normal’ can have genuine need of a disabled parking bay, not being allowed to events because they haven’t made buildings accessible to everyone etc, it’s very restrictive and punitive for a group who are already being punished 24/7 by their own bodies)!

So yeah.

Suffice to say being chronically ill a) sucks, b) results in invisibility / disregard / exclusion and c) stop buying all the Things!

I need tea.

Anyone else fancy a cuppa? Kettle’s going on (when I can physically get to it) xx

making-tea-with-near-fainting

Pencil sketch of me with crossed eyes determinedly trying to make tea. The thought bubble says “must…make…teeaa”.

 

 

 

 

 

Loss of a friend and raising awareness

Today I write with a heavy heart. I lost a friend to suicide. Yes, he had CRPS, but he actually coped astoundingly well with the condition. His love kept him going. His love of his God, his love of his canine companion and his love for life. He enjoyed being outdoors and growing veg’ in the garden sharing photo’s of his crops as many of us gardening types do, he really enjoyed going fishing with friends until his condition worsened to the point where he could no longer do so, he loved his music (from Beethoven to ACDC) and he just loved and believed in goodness so strongly that every time his health knocked him down or stopped him from being able to do something he found the strength to dust himself off and grow from it.

His first response would be to share the beauty he felt in that recovery with his friends by posting in a CRPS support group where he knew fellow patients needed to hear just that. He always supported fellow patients, encouraging them to keep going, reassuring them that he understood the pain, the loss, the limitations and yet that there was still beauty in the world. Still a life to be lived. Still love to experience. He truly was a shining soul who lifted so many in dark times of their own.

His outlet was his poetry. That’s how he found the words to express his experience with CRPS. A condition so removed from common experience that words just don’t suffice until you suspend the usual way of communication and get creative with them. He let those words fall from his mind onto the page and they captured moments living with such intense physical pain. Burning. Loss. And yet hope. Love. The will to continue.

Cross' poem, CRPS doesn't own me (2)

One of Cross’s poems that he shared on his public page to raise awareness about CRPS

So yes, he had coping mechanisms that allowed him to find the strength to focus on the beauty in life to keep going. All of us will have a point where our situation finally outweighs our coping mechanisms. In fact I wrote about this just 12 days ago and it rips me apart to know that he so desperately wanted those around him to understand. He appreciated my article and wanted others to read it to help them to understand what he had been feeling for so long. He had been talking about suicide on and off for a long time by then. It was one of the reasons I wrote the post. I needed to create something that fellow patients could share with loved ones that said what they could not find the words to say. To reassure those close to them that it’s not cowardice or weakness, selfishness or meanness or anything else of that ilk. It is human and understandable. That those finding themselves in this situation are not to be treated badly but helped to gain more coping mechanisms, helped to make the necessary changes. Helped. Understood. Helped.

His spirit was strong, his will to live was amazing, his love for others was out of this world, his coping mechanisms worked as any of ours do – only as long as they are not outweighed by the situation.

When the situation is out of our control we have to make what changes we can that will enable us to keep going. As dis-empowered as we can be by our own supressed self-worth, by the lack of CRPS knowledge that causes others to behave badly and/or inappropriately around CRPS patients, we can still make changes. We can change our way of thinking and our approach to our health, we can choose which physio’ we can do at home, we can choose who we are in contact with, change the way we plan our day, we can stop trying to do what we used to do and start thinking about things we can do whilst we are working on the physio’, or when resting afterwards. We can make changes. My friend was unable to do so because even his most personal space was not his own. In such extreme circumstances we can still make changes because there is a social care safety net and a social protection safety net – people we can contact in dire need who are directed by law to help. But when that fails, well, there is quite simply no safety net.

My friend’s safety net failed.

It shouldn’t have.

Public services should not fail like this.

I cannot stress how much we need to spread greater awareness of CRPS and it’s multiple effects. No not that embarrassing Pepsi ad’ with the link to a local support group website which is out-dated and incorrect despite being asked to update and correct it by patients, that is so unhelpful. Every time I see that blasted ad’ I <headdesk> in a way akin to shouting “Whyyyy?” at the heavens. Link to the RSDSA please. They are up to date, they are informed and they have current professionals in the field working with them. 

I haven’t written about my friend’s particular circumstances because another good friend has already done so with her fabulous professional knowledge from working in the medical field and her close contact with our mutual friend. You can read her piece here. I’ve delayed reading it myself so as not to muddle my own writing here, so I shall pop over and read it (and probably have a cry whilst doing so) once I have finished writing this post.

The bottom line is: this shouldn’t have happened.

What I want to do is highlight my friend’s beauty of character, to remember him in the way that his friends knew him and not in the way that a few quotes from his last few desperate and angry days on social media inadvertantly make him seem. He wanted to live, but could find no way to escape his circumstances to be able to do so.

What I want to do is to to highlight the impact that lack of knowledge about this condition can have.

In fact what I want to do is initiate change.

With regards to that – watch this space. And share the link to the RSDSA, the CRPS FAQ of useful links and information on here, and don’t feel you have to keep quiet about CRPS.

There is a drive to get information to doctors on the Facebook page CRPS Research and Developments, so pop in online and ask for a postcard or two to drop in for your doctors to read. This is important. So very important. So many lives are lost to CRPS each year, and if we wait for the general medical field to catch up with the specialist research it will be too long. Too late for another soul who found that their safety net was missing because CRPS was not understood.

There is an opportunity to raise awareness with the RSDSA’s event “Color the World Orange” which you can see on Facebook here. It gives you an excuse to shop for clothes *and* you can help raise awareness. And if you would like to be part of an orange display on here too then please do post your all-oranged-up piccies to my Facebook page here, because I would love to colour this blog orange too, x

There is also a patient-initiated memorial event which you can see on Facebook here. If, like me, you do not want to release balloons owing to the potential effect on wildlife don’t worry there are other ways of raising awareness and it would be wonderful to have your company raising awareness in honour of such a good soul.

You can purchase awareness tee-shirts and other items on the CRPS, Art & Spirit Cafepress shop here. All of the proceeds go straight to the charity (currently in the process of setting up, and there are no wages to pay at all thanks to our awesome volunteers with a variety of fabulous professional skills) which is involved in sharing information and knowledge with those who need it to help bridge the gap between doctors and patients. If you can’t find what you’re looking for in the shop then let the CRPS, Art & Spirit team know here because we may well be able to rustle up a design at your request. 🙂

If you knew Cross and would like to leave a condolence message then you can do so here.

I am so so glad and honoured to have known him. I will always remember him because he has a place in my heart and that’s forever-land in terms of my memory.

Cross, be at peace my friend. Your wish to educate others and spread the word on CRPS to help fellow patients will continue, xxx

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Much love to you, readers, as always.

Thank you for looking into one or more of these easy awareness raising events, it means an awful lot to us patients and it would swell my friend’s heart to know we are working on his fondest wish.

x

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