A chronically-ill woman who has been suffering from long Covid for over a year is calling for more support for people with this illness, which she says is becoming "the silent pandemic".
Louise Walters, who lives in Stevenage, suffers with Ehlers-Danlos syndrome - a connective tissue disorder which causes fatigue, pain and regular dislocations - and in March last year she developed long Covid.
Long Covid is when COVID-19 causes symptoms that last weeks or months after the infection has gone.
Louise, 43, explained: "My first symptoms were heart palpitations, followed by crushing fatigue and dizziness. That progressed to increased heart rate while prone, low blood pressure and fainting.
"My hair started to fall out in clumps, I lost my appetite and experienced severe brain fog. I had shortness of breath and body aches.
"Cognitive issues arose where I couldn’t remember words, names of people I loved or my own address.
"I became so weak my husband had to wash and dress me. The lowest point was when he had to feed me, as I no longer had the coordination nor strength to hold a fork.
"I experienced constant anxiety attacks and disassociation, when I couldn’t work out if I was awake or asleep.
"My doctors put a lot of my symptoms down to my previous conditions, as at this point long Covid wasn’t really spoken about other than in terms of fatigue, but I knew something else must have been causing it."
Louise says blood tests revealed Covid had drained her body of vital vitamins and minerals, such as B12 and folate, as well as lowering her iron reserves, but this didn't explain why she was so severely ill.
She said: "I became bed-bound for three months. A year later, I have slowly improved, but rely on a wheelchair or mobility aids.
"I am in no way back to pre-Covid health. I’ve had to give up my volunteering role as a coach for the Riding For The Disabled Association. It was only for two afternoons a week, but I am still so fatigued and plagued with bouts of light-headiness and dizziness, fatigue and memory issues.
"An iron infusion and regular B12 injections have helped, but I still get mental confusion.
"Blood tests have also shown inflammation in my liver, which has left me swollen and nauseated. I am so full of inflammation, I have put on nearly three stone.
"I am also waiting for more tests in regards to hormone issues - another common problem post-Covid, cardiac tests to determine what damage has been done to my heart, and I will need to see a neurologist in regards to my brain health, as recent studies have shown Covid causing brain injury and shrinkage. The waiting times are up to a year, due to an already overstretched NHS."
Louise says the government has shown a "lack of care or concern for those who are vulnerable, elderly or disabled", with "the new generation of disabled people long Covid is generating" being ignored and "the lifting of restrictions showing a dangerous game of roulette being played with people's lives".
She said: "We are disposable, expendable, but this virus can leave its mark on anyone. It doesn’t discriminate. Previously healthy people are being brought low, long-term sick leave is on the rise, and jobs are being lost, but not enough is being done to prevent it.
"As a sufferer already of an invisible, chronic illness, I have been used to being gaslit by doctors, specialists, friends and, to a certain extent, my family. Being misunderstood, or your illness downplayed, is just another factor of a hidden disability we wrongly accept as part of the condition, but now is the time to speak out, as thousands of potential sufferers could be avoided.
"We should no longer resign ourselves to sub-standard care. This is the time to demand answers and to receive support, to halt the destruction and severity this new illness brings - an illness that is affecting more than one million people across the UK. Long Covid is the silent pandemic."
Louise is an administrator for a support group called COVID-19 UK & Ireland Sufferer & Survivor Support, which can be found on Facebook.
She said: "We hold regular zoom meetings for sufferers. It's a safe place for people to discuss their lives, thoughts and ask for advice. It’s been really beneficial for many who feel alone or scared."
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