Our CEO had Covid Pneumonia leading to Long Covid
During the summer of 2021, I began to suffer with fatigue and muscle issues which started in my right arm, developing into my hands and my legs. My mother, being of an elderly age, had noticed that I was unable to lift my leg onto my other leg when sitting down. I just felt so exhausted all the time. In September I developed a dry deep cough causing me to stay in bed. By October I started to improve and went on to decorate two rooms, wallpapering and painting ceilings. By November I started to have a dry, hacking cough which lasted for two weeks. On 15 December I was eventually tested and found to have Covid. Within nine days my whole body, core and sides felt like they were burning. I thought I had cancer and was dying. I had so much pain around my lungs and by the 24 December I was sent to Southend hospital where pneumonia had developed. The persistent cough stopped me from sleeping and I had not eaten for two weeks just drinking pineapple juice.
Whilst in the hospital I was pumped with so many antibiotics, steroids, remdesivir and cough mixture. Even with all the medication I still had the persistent cough. I was keeping other patients awake throughout the night. After 11 days I was moved to the step-down ward. A kind nurse had found a nebulizer which I used for five days and soon noticed a difference. I was then able to talk. I was then transferred to a rehab ward and the nebulizer was stopped for two days. The cough came back with a vengeance and from January 12 to the 14 February I was put back onto the nebulizer for five weeks, for three times a day. This could sometimes take up to 45 minutes. I was anxious that when returning into the community, the cough would return. I worried how I would cope. It was decided to stop the nebulizer on Monday 14 by Friday 18 when I left the rehab, feeing much improved and without the cough.
I moved back with my son, and it was arranged for carers to visit four times a day. After four weeks I felt that I was coming down with a cold, which developed into a cough. I began to panic in case the cough returned. I then developed pain in my left lung and tried to contact a doctor to be told that I would have to wait for a call from a pharmacist. My son was now beginning to worry, and he told me to phone 111. I received a phone call the next morning. By this time, I was so exhausted after waiting by the phone. I had now fallen asleep and missed the doctor’s message urging me to go to A&E if I was still feeling unwell. By the time I woke up on Friday morning I was feeling very ill. Panic began to set in. The pain was down my left side, and the cough was returning. I felt very weak and tried to contact the doctor at 8am but I was unable to get through. I then phoned 111 and an ambulance with three wonderful women paramedics, attended to me with lots of machinery. It was found I had a chest infection. They managed to speak to my doctor who had consented to the antibiotics.
The question was my care plan, which was supposed to be finishing that particular day, 1 April. How was I to cope at home? I was unable to get up the stairs, and even now I’m still having problems with my muscles when walking. I haven’t left the house. The paramedics spoke to my GP who had not realised that I was on a care plan. He was giving me my fit notes for DWP but hadn’t read any of my discharge notes.
The antibiotics had started to kick in for the first few days and I began to feel better by the Wednesday but then I started to feel a pain in my left side and my arm was beginning to go numb. Again, I tried to contact the doctor without success and so I phoned 111. I got through to the doctor, who told me of three ways to get help. One, he was going to contact my doctor to suggest a zoom meeting, but this was refused as none of the doctors were not taking part in any meetings at that time. He then suggested I go to A&E which was not possible as I had no transport, and my carers were unable to take me to hospital. The other option was to call an ambulance, but I did not feel that I was bad enough to go to hospital, so I was advised to phone back at 6:30pm to speak to an out-of-hours practitioner.
It took me almost an hour to get through to an advisor who told me they would send an ambulance because of my breathing difficulty and the numbness in my left side. The ambulance paramedic arrived at 12:15am Friday morning and my heart was monitored on an ECG machine. After the assessment I was advised that I would be taken to Southend hospital. There was concerned that I may have developed a blood clot having had blood clots at a younger age. There has been research showing there is a higher risk of this developing with those who are suffering with long covid. We waited for an ambulance to pick us up. Before they arrived, the paramedic helped me on the bed so I could have some sleep while he waited in the dining room. At about 4 o’clock we arrived at Southend hospital where I was given a flowchart test before entering the hospital. This showed negative and I was then allowed in.
Bloods were taken, and chest x-rays carried out. I spoke to many doctors and nurses to find out more about long covid and the issues that they were dealing with. This was so important to me because at that time my carers had little knowledge of long covid, and during my stay at the rehab centre I was the only one suffering with long covid. I felt very isolated, and my family were not convinced of the severity of my illness. I have always been strong and determined, how come had I changed so much? It was so good to be able to speak to hospital staff who would listen and empathise with my condition.
It has taken many months to receive the help I needed from my GP, and for doctors at 111 having access to my discharge letters to be able to order the necessary medication I needed. They also sent emails to my GP to get my medication on prescription. The issue was now that my care plan was coming to an end, and I still could not get up the stairs to go to the toilet or have a shower. There were persistent phone calls from the DWP and Reed partnership to see if I was ready to return to work, even though I was in a high dependency ward. It was difficult for me to speak due to the CPAP mask covering my face and breathlessness through the coughing. The hospital and rehab nurses and doctors were shocked at the way I was being treated. I asked for fit notes and help with filling out the 28-page Universal Credit Health Assessment form. This alone was causing me so much stress that my physiotherapist took the form away, having seen the stress I was putting on myself, which was not helping my recovery.
I am on the Occupational Therapist screening list, so it is now a waiting game. I have had help from our local CAVS’s which as funding for a new project, ‘Women over 40 years old that had had Covid’ which is helping me with pain management. I have been informed of a ‘Long Covid Van’, at Wat Tyler Park, Pitsea, and I am attempting to make an appointment.
The sad thing is that it is difficult to understand what long covid sufferers are going though. The front liners of this illness have been the carers, nurses, and doctors, who have been under stress to help the patients, and the traumas they have seen. The first year of the pandemic was horrendous for all concerned, resulting in so many members of staff exhausted and leaving their profession. We all clapped and rang our bells every Thursday night in support of the marvellous work the NHS were providing us with without a full understanding of what they were really going through!
P.S. I still am left with a horsey voice resulting from the continuous cough, but I can carry out conversations on the phone more easily, much to my son’s dismay. It is taking a long road to recovery, but I can see progress being made each week and I know by keeping a positive mind, this will help me to get back to working on my goals and plans I have for the future.