One parent from our Long Covid Kids support group tells their very long story.
"9 months ago, if I was tasked with choosing a photograph that summed up our family life it would have been sports & adventures..everyone running or jumping..or with a couple of gymnasts in the mix...upside down!
How sad that this picture (which even though I’ve seen her look like this so often since March) still bears no resemblance to my Daughter of the preceding 9 years. Yet this is the picture that now reflects our daily life.
Here is our story. It’s not a short one & in that & so many other ways, it is a typical story of a Long Covid Family. I hope that it helps to raise awareness and understanding.
At work, as at home we had tracked the events across the globe anxiously.
As someone who has always picked up everything & had it worse than everyone else, I was already under investigation for a possible autoimmune condition. That coupled with working in a large teaching hospital, at the time with no PPE, I felt pretty certain I would get Covid & that I would struggle.
So when I woke on St Patrick’s Day to the typical new, persistent cough I was not entirely surprised.
Having been told that children were unlikely to catch it & if they did, it would be a very mild illness, we made the decision to remain together as a family. Rationalising the children had most probably already been exposed & that they would be more harmed psychologically by being apart from me.
How hindsight has reframed that!
Over the next few days, we all became ill with what have always been classic Covid & later classic Long COVID symptoms. But testing was only for hospital inpatients.
We’d all been told don’t go to the hospital, you’ll overwhelm them, stay home. So we did.
And so we remain ‘presumed Covid’, an extra level in the fight to be believed & receive help. 4 of the 1000s of invisible sufferers.
Over the next few days, we all became ill with what have always been classic Covid & later classic Long COVID symptoms. But testing was only for hospital inpatients. We’d all been told don’t go to the hospital, you’ll overwhelm them, stay home. So we did. And so we remain ‘presumed Covid’, an extra level in the fight to be believed & receive help. 4 of the 1000s of invisible sufferers.
Within a week my Husband’s temperatures, fatigue & shortness of breath were gone. The remaining 4 of us battled on. I did not go to the hospital only because the process was a shambles. I was desperately unwell. For weeks I couldn’t move, my lungs we so incapable of providing the oxygen for my brain or body to function.
My 12 year old had moderate fevers, shortness of breath, fatigue, malaise, muscle aches & headaches. She felt nauseous, but it generally was a mild illness apart from two nights when she was unable to lie down to sleep because of the breathlessness.
My then 9 year olds had high fevers, pallor, fatigue, nausea, stomach pains, headaches, rashes, nosebleeds & bloodshot eyes.
After a few weeks we all tried to convince ourselves we were better.
But my twins kept relapsing.
In the early weeks they’d barely make 3 well days before the fevers & stomach pains would return. Every week had a new rash-usually angry, raised & insanely itchy, but when disturbed, very sore.
Over lockdown my usually wildly active, energetic, fun filled family rarely played, bike rides were rare, trampolining stopped, even being out in the sun was often unbearable.
The relapses have stretched out a little longer. Coming every 3-4 weeks. But they come with the same crippling intensity.
I am ‘lucky’ that I am so unwell with long Covid that I am unable to return to my clinical role. If I was in work I would have had to resign, they have been ill with such frequency I wouldn’t have had enough leave to care for them.
The children all have breathlessness even though the younger two didn’t suffer this in the initial stages and constant fatigue. Alarmingly chest pain has recently joined their bingo of symptoms.
I experienced so much medical gaslighting with my own long Covid, I did not even disclose to my GP that my children were ill until recently.
How sad that I felt I was more likely to be labelled anxious or projecting my symptoms onto them than to receive help for any of us. Fear made me take my Daughter a few weeks ago. Fear of what this has done & continues to do to her tiny body.
We are now approaching 9 months into our Covid journey and for 4 of the 5 of us the constant LC symptoms are regularly joined by a relapse. For 2 of us every single day brings a rash. Sometimes a different one in the morning & afternoon. I desaturate so much each night that every morning starts with a banging headache & nausea.
My vision is like looking through a steamed up window. I haven’t felt my hands or feet since June. I have a right leg weakness so fall very easily. I have hearing loss & am still learning to speak again after my voice disappeared during a relapse in almost 6 months ago. I have POTS, chest pain & a breathing pattern disorder. I can’t return to work as my cognitive impairment means I would be a risk to my patients.
Like so many of the Long Covid community, this whole process has been a fight. We are not making this up, we are not malingering, this illness is not psychosomatic. We will keep fighting for awareness, knowledge & care.
But oh we so are tired & struggling."
LongCovidKids.org is a parent and patient-led campaign & support group for parents of children with Long Covid. Our story started with a short film on long-lasting symptoms of Covid in children & we are working on The Long Covid Kids Study with PeopleWith