HELL TURNED UPSIDE DOWN : THE COVID PANDEMIC AND CARING FOR SOMEONE DIAGNOSED WITH VERY SEVERE ME.
I wrote a song once called “Seventh Circle of Hell”, for that is the level of Hell my wife has been trapped in, without recognition, hope or treatment for nearly three decades.
Unspeakable as it is, the situation then was very different compared to what we are experiencing now under the Covid 19 Pandemic : a profoundly serious threat to our life and those of the others hidden and locked away too, due to Severe ME/Very Severe ME.
We were living on the edge, well hidden from view, but it was an edge that we knew and had learned how to negotiate within, to a small degree, after years of fighting and struggling to get need met.
After disastrous interventions that caused lasting harm and after years of hoping for knowledgeable medical input that was not forthcoming , we had figured out the risks to noise, sudden movement, motion, exertion, perfume, light, touch, certain foods, interaction of any sort ourselves.
Though it took decades, to the best of our ability and with what was possible, we had at least built some relatively safe structures around us.
There was always a threat to our life if disaster struck and hospital was required, always the underlying risk of catastrophe should anything happen to me as sole carer, but we lived with that threat, managing it.
However, under this deadly new invisible viral threat, impacting the whole of society, things have fundamentally changed, even if they seem in some ways, on the surface, to still be the same.
Suddenly, almost overnight, the way we do have to do things is radically different. This is so for everyone, but it takes extra effort and energy not easily available, when living with a person with complex system dysfunction, multiple hypersensitivities, in tremendous suffering, who has little to no energy to begin with.
How do you deal with these additional , vital demands , when it is already difficult beyond words to meet need safely?
Before, we didn’t have to wear gloves and carefully clean every package entering the house in case it is infected. Though perfume on packaging was already a threat and problem not easily solved, a deadly virus is a huge terror lurking.
Previously we didn’t have the extra worry about should we or should we not both wear face masks and how is that even possible for a person with constant face pain, where any contact or pressure on the skin is painful to excruciatingly unbearable. For people requiring care from the community this is a pertinent problem.
Now, suddenly, everyone and everything is under new threat, from each other, as never before - and so our life, like every one else’s, has been turned on its head.
Rather than having to stay at home due to physical inability, there is now an official requirement that we do just that. Finally a weird kind of permission to do the necessary. This is strangely liberating in an odd sort of way.
When I wrote the song, at least there was not the immanent risk of my wife losing her sole carer- me, to Corona Virus.
At least basic supplies, like food was not totally unavailable or inaccessible an collecting prescription medication was not the same level of potential risk.
At least NICE and the UK Government, prior to this rampant virus, had not defined the most vulnerable as not being of equal value to others in society, when push comes to shove.
At least we weren’t facing a government spending in free fall and the worrying possible consequences of the government bailout, after the situation has been stabilised; the long term economic cost, eventually being shouldered by cuts to provision for the poor, ill and disabled, battered, crushed, punished and demeaned, as they have thoroughly been, for the sins of the Bankers. We have to hope that will not happen again.
At least I didn’t have to worry about wearing a face mask and glasses to go outside the front door.
At least I didn’t have to avoid passers by who might give me Covid virus without even knowing they had it. Or worry about getting caught in the slip stream of possible air- borne viral particles, from a passing cyclist or runner.
I didn’t have to fear a friendly greeting or worry about catching a deadly disease on my doorstep.
Right now, the planet is in lock down; an extraordinarily difficult, even surreal experience for everyone.
Luckily, I guess, because of poorly understood symptom experience, medical neglect, poor testing, medical misinformation and the primary need for environmental protection, we have become extremely skilled at living in self-isolation, without much needed community support, for decades on end, as have many of the Severe ME community.
But let us not pretend that we are all totally adept at dealing with this new situation and threat as a consequence. This Pandemic seriously threatens the fragile balance that living with ME has created. People’s already poor quality of life, is impacted with potentially devastating consequences.
What if they cannot get food, help with prescription delivery or basic care needs met safely? The lack of Personal Protective equipment across the board is a huge concern, leaving all more vulnerable and at risk.
It is possible to draw striking parallels between the suffering of people diagnosed with ME and the current Covid situation; for example the abysmal Government response, trying to bury the disease by abandoning trace and testing so quickly, going for Herd immunity, in effect washing its hands of it’s spread, not sharing the true number of infections or deaths.
Those at home are left to get on with it, leaving the disease to get out of control, the ill, frail and vulnerable have effectively been abandoned in Care Homes; so the true impact of Covid is not being accurately measured. This sounds familiar to people with ME, for there has never been any government led epidemiological study to understand the true spread of ME.
It has become glaringly obvious to us, during this Pandemic, how banal, generalised and unspecific the published advice about ME and Covid 19 is, compared to say, Rare Diseases. It highlights, to us, just how little ME is taken seriously as a disease itself, as opposed to a general fatigue state of unknown origin, dissociated from true disease status.
It tragically illuminates how little is still actually known about ME or who actually has it; so bland, generalised comments are the only available path to take, sadly. By not not acknowledging the initial cause or full symptom experience, the underlying physiology is neglected and treatment interventions are unsafe.
If only the link between Enterovirus and ME was recognised and reinstated.
What a dangerous state of affairs it actually is for people, right now, not knowing the physiological cause of the illness they have been diagnosed with,still at risk of mental health misinterpretation if hospitalised, due to so much misinformation around. The ME community has been battling for years to get the truth of this neurological disease properly, adequately recognised, researched, respected and treated.
How terrible it is, that with little or no proof of their specific, complex physiological issues, there is no guarantee whatsoever of safe treatment and medical understanding should they have to endure - if it is even a possibility, a hospital visit for suspected Covid virus and breathing difficulty.
As a consequence of this Pandemic, it is no exaggeration, I believe, to declare that things are never going to be the same again. We can only hope that developments will somehow move in the right, not the wrong direction as more is learned.
If and when we all get through this, the nightmare experience of those of us who have survived so much, in the devastated, neglected, isolated world of ME, struggling in the dark, out of sight, often out of mind, long before the current virus hit, must surely serve as a stark warning for people experiencing difficulties in recovering from Covid 19.
Perhaps in their unfortunate favour, at least they will know that they had Covid 19 and that is the cause of any ongoing related health problems - not “maladaptive thinking”. Sadly with ME, no such clear distinction is made.
They must surely not be fobbed off as many with ME have been, as being “tired all the time malingerers”, who somehow brought this illness on themselves by not trying hard enough to get over it.
It is good to see the timely warning by Physios For ME against pursuing ineffective, harmful, inappropriate, widely derided, “CFS” -type, psychiatric “rehabilitation” strategies for the new post viral experience.
...such are the fragile threads of hope you cling to, here in the Seventh Circle.
Greg & Linda Crowhurst April 2020