My COVID journey began on the 1st April 2020 when I first stepped foot onto the ward of a community hospital where I had never worked before. I had worked for the same NHS trust since July 2009, always at the same community hospital until March 2020. With three days notice and no choice, I was redeployed to this other community hospital and my hospital was ‘temporarily’ closed. I worked just four shifts over two weeks, two of those shifts were before staff were issued with surgical face masks.
My COVID-19 symptoms started on 15th April 2020. I tested positive on 20th April 2020. Many of the staff, including my partner, caught the virus from a patient we were exposed to before appropriate PPE and patient Covid testing was introduced. The patient in question was in the ward in a side room admitted with a deterioration in chest infection and was on oxygen. The patient was tested for COVID-19 about 4-5 days after admission (after a struggle to obtain PCR swabs). The test results were positive for COVID-19 and sadly the patient later died as a result. During this time staff, including myself were unknowingly exposed to the virus.
My first symptoms were a runny nose and eyes and a sore throat. I had a headache and felt like I was getting a cold or had hay fever. No cough. I did not take my temperature for the first few days. My symptoms progressed as follows:
First two weeks:
Continuous fever of at least 40 degrees Celsius, Increase sore throat,
Loss/change in taste and smell, Fatigue,
Diarrhoea (continuous), Shortness of breath, Headaches,
Confusion, delirium and hallucinations, Tachycardia/palpitations,
Night sweats,
Brain fog/memory problems, Nausea,
Painful joints and muscles,
Skin irritation-rashes/hives/spots/itchiness,
Visual disturbances, sore eyes and peripheral hallucinations,
Tinnitus and auditory hallucinations, Increase anxiety,
Neurological disturbances.
Following these two weeks, I also developed a Covid-related DVT in my left calf and had to take rivaroxaban for six months to treat the clot and prevent further clotting.
I can honestly say I have never been so ill in my life and felt like I would die. I couldn’t walk more than a couple of metres without needing to sit down due to gasping for breath. I really should have sought medical assistance, but I thought if I went to the hospital I would not make it out alive. I did not want to leave my partner and my dogs. I have struggled with this since as I often wonder if my prolonged symptoms would have been lessened if I had sought medical assistance at the time. I had PTSD following this and had to have counselling to help me deal with it.
I have continued to be unwell at varying degrees since I first contracted Covid-19. I have never fully recovered. A typical day for me at almost nine months of having Long Covid consists of feeling nauseous until the afternoon. Fatigue is always present but varies from mild to severe. I often have migraine-type headaches. I have developed a gastric reflux problem and now need to take medication. My eyes are sore and blurry. I had an eye test and needed a new prescription and now have dry eyes so I am on eye drops. I have a debilitating brain fog that limits all my daily activities and is also at times dangerous due to memory loss/cognitive impairment (i.e. forgetting medication or risk of taking too many). I am in pain most of the day and night and have become very weak and physically unfit. My mental health has suffered from the whole experience and from the fact I don’t know if I will ever fully recover. I suffer from tinnitus and vertigo. I need a white noise soundbox just to be able to sleep. Despite my best efforts, my sleep remains disturbed due to pain, tinnitus and the stress of living with this illness. My physical appearance has also been affected including hair loss and weakened nails. My skin is extremely sensitive now. I get rashes, spots, irritated, and sore skin. I also have had some swelling/inflammation.
My GP has been amazing which I know I am so lucky to have. However, she is limited in what she can do to help me. Many of my medical appointments have been by telephone. This includes all the services offered by the Long Covid Clinic. I have been under the care of various specialists including Rheumatology, Neurology ENT/Audiology, and Pain Management. I am still awaiting a formal diagnosis as I have to wait a minimum of a year between each appointment as I go on and off the medical merry-go-round. I have been prodded, poked, and tested for this and that.
Scans here and there. Nearly everything comes back normal! I feel everything but normal! Maybe one day I will get answers or maybe medical professionals will know why Long Covid is causing us all these awful symptoms. Until then I am back to waiting.
I can no longer go to the gym to exercise and can only walk a short distance. I can’t walk my dogs far. I don’t socialise and I find it too much and find it difficult to hold conversations. I have problems following TV programmes and forget what is happening in them. I cannot read for any length of time so have stopped reading for leisure. My dexterity is poor and hand-eye coordination so my craft hobbies have had to stop. I haven’t been on a holiday abroad since being ill. I used to go cruising a lot but there is no way I could manage them now. I feel very lonely and isolated as I have lost friends, colleagues and family members due to suffering from this debilitating health condition. People who don’t have it do not understand it. I have a couple of friends I have made from Covid support groups whom I am truly grateful for. I do have my partner who is also suffering Long Covid so we support each other. It still is very lonely.
In September 2023, I was dismissed from my job as a staff nurse on ill health grounds and I have applied for an ill health retirement pension. I have not had an answer as to whether I will be awarded it and at what level. I don’t feel hopeful as I am 45 years old. All I know, I am too mentally and physically unwell to return. I do not know if I will ever be able to do my job or any job again. I have had to lapse my NMC nurse registration which was so upsetting. I am now relying on benefits to survive. I never thought this would be the way I would finish my nursing career. I just wish I did not go to work for those night shifts in April 2020. Maybe my life would be so different now.
I hope we can all find the answer and help we desperately need soon. Sending all my fellow Long Haulers best wishes.
Love Emma x
