Guest Blog : Living with Long COVID the Invisible Illness, by Saskia Mulder

What’s it like living with Long COVID?

This is a question I’ve been asked so many times, particularly in recent months as the illness is slowly but surely getting the recognition it deserves. I used to answer this question by rhyming of my symptoms and how they effected my ability to function and carry out activities of daily living. This was primarily because I was so paranoid, I wasn’t being believed; so many people asked – have you still not returned to work yet?

In addition, many of us in the Long COVID community felt we weren’t being believed by the medical profession with many trips to the Emergency Department or GP surgery resulting in all scans and routine blood tests coming back clear. The Psychosomatic narrative began to emerge. We were told it was Anxiety or Depression and offered medication to treat such symptoms. I’ve been subjected to some of this, its humiliating, mortifying and evokes great rage within. This is something the ME/CFS community have been subjected to for years. However, I’ve been luckier than some, I have also experienced, caring and empathetic interactions with GP’s and this must also be acknowledged.

Pre Covid

Let’s rewind to March 2020, I am a Deputy Ward Sister and was working full time and more - I was seeing clients from my home, as I’m also qualified in several Complementary Therapies. I tick the ‘stereotypical’ box of being fit and healthy, slim, big walker, yoga, and meditation enthusiast, enjoy healthy eating – although not shy of a McDonald's or chippy when the notion takes me.

You could describe my personality as Bish-Bash-Bosh, high energy, jovial and direct with a great love for humour and traditional Irish ‘banter’. If any task needs completed it’s done so efficiently and effectively. If staff come to me in work with a problem, it’s sorted within the day. I’m incredibly independent with wonderful friends and family, with a love to travel and explore other cultures. I navigate my way through life at a high functioning level and am immensely proud of my 24- year-old son who resides in the UK living his best life.

However, on the 19th of March 2020 my life and world changed beyond belief. I was working on a ward looking after patients who had contracted COVID-19 and began to feel unwell myself. Sore throat, tickly cough, tightness in my chest and fatigue. I still wasn’t entirely convinced I had the virus, as looking after patients can make staff rather anxious that they are experiencing similar or comparable symptoms. With every little niggle and symptom you think “have I got it?” and you learn to block out that thinking in order to carry on with the task at hand.

19 months later - 3 rounds of antibiotics, 1 course of steroids, 2 inhalers, Post COVID Myalgia, Post COVID Pleurisy, Costochondritis, Sinus infections, blocked ears, and facial neuralgia pain. All coupled with what we now know and understand to be some form of Dysautonomia, this is a dysfunction of the autonomic nervous system. The range of symptoms is vast – including extreme daily nausea and vertigo, menstrual changes, mind blowing - numbing migraine headaches, internal tremors and body shaking.

Allergies to food and drinks, Gastro issues, Tachycardia, fluctuating changes in BP, changes to my mental state and the most excruciating, debilitating fatigue; like you’re wading through treacle unable to lift your limbs without extreme effort. This, in turn, impacts and causes cognitive - concentration and sensory issues. Every day I feel drunk, unable to sit up for long periods, unable to stand without support for longer than 10 minutes, unable to tolerate noisy or long interactions or read more than 2 pages of a book. Long COVID is a multisystem illness and must be treated as such; I now no longer recognise the above woman I was, the independence and joy from life has been stolen from me.

So 19 months on what is it really like living with this debilitating life changing illness?

I recently participated in a radio interview where I described to the listeners what living with Long COVID was like. For many of us it’s an invisible illness. Apart from the people who sadly cannot walk at all and require a wheelchair or a stick - I recently had to admit defeat and purchase the latter. To the outsiders we might look a bit pale or have lost some weight, however the suffering we are enduring is invisible to them.

Due to all the symptoms previously mentioned, I now function at around 30-40% of the person I was – and that’s on a good day. There may be occasions where I can’t leave my house for a week. My condition cycles in and out of relapses, which means it sometimes looks as though I’m well. I’m not – my symptoms just become even more debilitating, rendering me bed or sofa bound. I’m about 80% housebound and unable to drive to visit my mum 20 minutes away because of the effect it has on my body and symptoms. This is what is now known within the Long COVID community as, Post Exertional Symptom Exacerbation (PESE).

PESE is a game changer, it’s like being stuck in some sort of purgatory, dominating every task and activity you try to complete. Just to complicate the matter even further, some PESE symptoms take up to 72 hours to fully kick in, so you’re left in permanent confusion. Was it the washing I hung on the line or the phone call that lasted longer than I could tolerate, that tipped me over the edge?! It’s relentless, all-encompassing, and truly depressing. This blog has taken several weeks to write at 10 or 15-minute intervals, increasing many of my symptoms and resulting with a feeling that my brain has been put into a food blender at high speed.

The year mark seems to be a particularly tough hall mark for many of us long haulers, indeed my year anniversary was a week I’ll never forget. I was going through the cruellest relapse that began in January and it lasted for about 2.5months. I was suffering from one of the infamous COVID migraines which lasted 17 days straight and medication didn’t touch the sides. I sat at my kitchen table, the spring starting to fill the air, crisp blue sky, and sunny days. How can I be even more unwell a year later? The tears started to flow, I sobbed. In fact, I sobbed for a week solid at my kitchen table, staring out into the world I could no longer access.

Sadly, reports are beginning to circulate through the media that people are dying by suicide due to being unable to suffer the pain and illness any longer. One such high profile case is Dawsons Creak writer Heidi Ferrer, who coupled with the lack of support and being disbelieved could no longer cope with living, she leaves behind a son and husband. This is not a singular incident and most likely and very sadly won’t be the last. Many people who I’ve met along my journey have at one point felt suicidal, myself included. During my 1-year anniversary week, I decided if this was my new life, with no answers or hope, I didn’t want to be here any longer. Within the pit of my stomach, I felt a deep resolve, I meant it. It scared me and I knew from my background in working with mental illness, I needed to reach out and admit my thoughts. I did and I’m still here, still fighting, every single day.

What now for us long haulers?

There are some glimmers of hope beginning to emerge in the medical field as research by American leading Pathologist, Dr Patterson confirms that in his cases studied, Monocytes (type of white blood cell) are harbouring COVID spike proteins. Because these cells are harbouring a viral protein, this means they are antigens which cause inflammation in the body. They pass all through our body and bind to our blood vessels. Additionally researchers at the Max Planck Centre for Physics and Medicine in Germany have discovered that there have been changes to the shape, size and stiffness of blood cells in people who are suffering from the condition. This evidence could explain many of our symptoms and the crushing fatigue, finally – hard evidence. We are not stuck in some sort of psychosomatic ‘sick role’. Ground breaking research in Germany has shown that Long COVID appears to be a vessel disease, causing microclots within the blood plasma. Causing many issues, tissue hypoxia being just one of the debilitating symptoms, which could explain the shortness of breath long haulers experience but all respiratory tests come back clear. This extremely exciting research and the most significant to date. Various treatments have begun trials, my only concern is how long will it take before this protocol filters through to the NHS?

In June 2020, NICE issued a statement - acknowledging raised concerns about the appropriateness of Graded Exercise Therapy (GET) as a treatment option. As people recovering from COVID were reporting it was exacerbating symptoms, NICE cautioned against using GET at that time. CDC and World Physio guidelines both advocate pacing, resting, and attempting to find your baseline. GET is not recommended and flares up symptoms and triggers a relapse. Science is now catching up, we have been reporting this extensively. Unfortunately, some health professionals through lack of seeking correct education or choosing to believe the psychosomatic theory, continue to advocate GET. This is not good enough and why so many long haulers partake in media work (from our sickbeds) to fight for recognition and correct rehab advice.

Long COVID clinics have still not arrived in my country (North of Ireland) although many of us have been campaigning for them since 2020. However, funding has now been approved and it looks like Autumn time will bring our first ever clinic. I have mixed feelings and expectations surrounding this new arrival, as our comrades in the UK feedback mixed satisfactions. Poor over all structure, not incorporating enough of a multi diverse team and incorrect and somewhat dangerous exercise advice being prescribed, like GET. As well as instructing people to partake in sit-to-stand tests amongst many others, which we know causes massive relapses. This is very concerning and although I’m very glad the clinics are finally coming, the Jury’s still out on how effective they will actually be.

In Conclusion

I feel living with Long COVID is akin to the stigma of living with mental illness. With such a massive global division, between conspiracy theories and ideologies of governmental control or simply disbelief that the virus exists. It’s not something one can divulge to someone in Tesco’s whilst debating over what baked beans to buy. The reactions are like the illness itself, multifaceted, we have lost not only friendships. But even had family members doubt the severity of this vile illness.

For the vast majority of patients, we had to self-navigate this illness and source support from charities and ME/CFS groups with Northern Ireland Chest Heart & Stroke being the first charity to offer me Long COVID support. During the summer of 2020 and through the first lockdown, after many months of battling alone inside the 4 walls of my home. They were a lifeline and are an amazing team. They continue to be the main source of rehab support here in my country and function solely on donations. Belfast Back Care & Physiotherapy Centre was the second source of support, who kindly offered us long haulers 6 weeks of rehab. This regime had to be quickly changed when the amazing team of Physios realised, we couldn’t quite keep up with the original exercises. Due to the fragility of our bodies and dominating fatigue, the team readjusted their regime and most importantly listened to their audience.

There are many support groups online and I happened by chance to become part of an amazing one called Brain Health Breakthrough CIC. The founder of this group still suffers from Long COVID, and the meditations are based specifically on Long COVID symptoms and calming the nervous system, which is completely out of sync due to the illness. This has transpired into an amazing source of support and connections. Another fantastic organisation that I have been involved with is TIYGA Health, a research company which has been vital in giving us long haulers a voice. This company has been capturing our daily symptoms through the use of an App, which has been simple to use and understand. This data collected will be used to look at trends, similarities and analysed by experts to help as many people as possible. An Irish based health company has taken a particular interest in my story with Long COVID and sent me many free samples of CBD products to help with my excruciating chest pain. This has given great relief when nothing else has, their kindness has been astounding.

The above organisations have shown us more kindness and compassion than any medical expert to date. We have formed alliances with each other via social media and built friendships virtually, that have become very important to us. Not only for our sense of sanity but having that relatability aspect with people who know exactly how life changing this illness has become. With millions estimated globally to be suffering from Long COVID, it can’t all be in our heads?! Without a doubt, Long COVID seems like it is becoming the next pandemic. We desperately need help. I’ve switched from being the nurse to the patient, my eyes have been opened. If I ever return to practice I will do so through a different set of eyes.

Follow Saskia Mulder @scuzzimulder30 on twitter for updates and developments.

Saskia uses the TIYGA app using the profile "Long haul after virus"