This Lupus Awareness Month we want to highlight some of the experiences our lupus community have faced over the 18 months during the COVID-19 pandemic. We would like to say a big thank you to all our supporters who have shared their story.
“The pandemic is the best thing that’s ever happened to my lupus. This might be surprising to some, but it’s true. Despite not having seen my hospital Specialist in over a year, COVID-19 put us in more frequent contact than ever before as I grew more in tune with my symptoms having not a lot else to focus on – thanks to a combination of shielding and furlough.
This time to focus on myself and really listen to my body led to the realisation that my current course of medicine was poisoning rather than treating me. This might sound dramatic, but blood-work revealed that the methotrexate that I took daily was genuinely poisoning my liver.
Without phone calls every 6 weeks – sometimes more frequent – I mightn’t have gotten the chance to report how I was feeling to my specialist for up to 6 months. Contact before the pandemic was often sporadic and lacking; without COVID-19 it is likely my liver would still be at the peril of methotrexate.
After a few months stripped of medication – that placed me in a constant fatigued state, grateful that the ongoing pandemic meant that I did not have to work or socialise – and numerous blood tests to ensure that my liver was back on track, we decided a new course of medicine over the telephone.
I am now in the best health I’ve ever been with my Specialist describing my blood-work as spotless. The pandemic has placed me more in tune with my symptoms than I’ve been in the 5 years since I’ve been diagnosed. I can spot a flare coming before the flare has even decided it’s course. COVID-19 made my invisible illnesses a bit more visible – to me, at least.”
Due to the amount of immunosuppressives I take, I fell into the clinically extremely vulnerable category which meant I was shielding for significant amounts of time. I was fortunate to be able to work from home, but my role had to change several times as my job of working in a residential setting had to cease during the pandemic. I, therefore, spent 19 months working in my garden office in front of a computer screen, inputting data, tracking positive COVID cases amongst many other jobs – it was very lonely.
Kayleigh has been a long-term supporter of LUPUS UK. She has organised and participated in various events and has recently raised £70 for the charity by becoming the face of her sponsor’s boutique!
“Hi, my name is Ruby and I am a mummy to a 3-year-old toddler. When the pandemic began, he had just turned 2 and we managed to have a lovely celebration with our family. It is crazy to think a whole year and a half has passed with us, for the most part, being stuck at home with not a huge amount to do. We live in a flat, therefore do not have a garden, we didn’t feel safe enough to leave the house for a walk, or to do the weekly shop. We waited until we had really ran out of necessities before deciding to go for a shop, even then my anxiety levels were through the roof. Would I be able to get everything I needed from one place, or would the shelves be half empty?
I think as a parent, we all have guilt on what our children have missed out on. Still to this day we haven’t been to a play centre since the pandemic as the thought of all the germs makes me nervous. Mum guilt has been real, especially as he is so young and these are the times before starting school where we are able to take them out any day without problems with education. I know he probably won’t remember, but to me it is still lost time memories being made in places we could have visited.
Throughout the first year of the pandemic, all face-to-face consultations with my rheumatologist, nephrologist and GP had been through the phone. This made it very difficult to diagnose issues that surfaced during this past year. One example is an issue with my nail, which I have only recently been able to receive what is hopefully the correct treatment to fit the problem. This issue began in March 2020, the beginning of lockdown, and has taken a year and a half to finally be seen, taken seriously, get referred, receive the referral booking, have samples tested and results back to prescribe me with the treatment to cure my nail. For the past year I have basically had to hide my right thumb from photos, videos and in person as I am self conscious about it. I am someone who loves to post cooking videos, and for the past year I have not been making these videos due to this reason.
I had been lucky enough to work for a company who allowed me to work from home for the first 2 weeks, then I was placed on the furlough scheme which brought my wages down to 80%. In October 2020, the government announced the end of the furlough scheme, the company I had been working for let me go. As you can imagine this was a very stressful situation to be in, how can I support our family with no job and my limited ability to work? Then came the sleepless nights, applying for jobs every day, trying to make the most of what we had left in our fridge and stressing about how to afford the next shop. Not being able to see family was the most difficult part for my mental wellbeing. What made it worse for me was how confusing all of the rules and advice were about what we could and couldn’t do, and how half of it didn’t make sense to me. We could eat out, but not see our family at their homes? I just couldn’t get my head around it.
With all the stress and uncertainty around the pandemic, I am happy that I have been able to spend quality time with my son, as through that first year he has grown so much. Looking back at old videos and photos, it’s been lovely to know I’ve been with him, helping him through his growth, learning how to speak, use chopsticks and growing into his own personality. I am also grateful that the pandemic has pushed me to use everything in the house and not waste food. I’ve made so many random delicious dishes from what I wouldn’t normally put together that had been left in the fridge. It’s taught us to use everything before buying more and to be grateful for what we do have.
I’ll leave you with a few photos of our lockdown fun! Our first day out at the park, celebrating birthdays at home, a day out at the zoo & a lovely meal outdoors with family ♡
Thank you for reading, Ruby”
Keep up to date with Ruby’s journey via her blog www.positivelylupus.com
“My name’s Danielle and I was diagnosed with Systemic Lupus Erythematosus during the height of the pandemic. In December 2019, I was involved in a head-on collision whilst driving to work. Whilst the crash wrote my car off, at the time I didn’t consider myself to be severely injured just a bit bruised. I was checked over in hospital and was advised I probably had a bit of whiplash. In the weeks that followed I started to feel very fatigued and not like my usual self. I was mixing up my words which wasn’t like me and I had pains in my legs lower back and shoulders. My insurers had offered me Physiotherapy so I took this up and was having weekly sessions. Two weeks into my Physiotherapy my father suffered a heart attack and was quite unwell in hospital. He’s type 2 diabetic and I decided to ask my GP to do a routine blood test as I thought perhaps the fatigue could mean that I might be diabetic or similar too. When the results came back they advised that I was positive for ANA, ENA and Anti-centromere antibodies and that they wanted to repeat the test. My GP thought the inflammation may be to do with where my muscles were inflamed from the accident and advised me to come back for another blood test once my Physiotherapy sessions had finished. I attended Physiotherapy face to face through January and February. I didn’t feel the exercises they gave me to do at home were having much affect and whilst the manipulation therapy felt good during the session my legs and shoulders felt constantly knotted. Physio stopped being face to face when the lockdown was announced and my symptoms were getting progressively worse.
They continued to do video/telephone appointments but I didn’t get much benefit from them. I was unable to work during the first lockdown which was great as I was extremely tired and meant I could pace my day. I’d go for very short walks with my boyfriend and come home and sleep for an hour or two after. Physio over the phone wasn’t helping and my boyfriend spent hours massaging my legs and shoulders just so I’d get a good night sleep. When we went back to work in July 2020 I struggled even more. I was losing concentration at work and making silly mistakes I wouldn’t usually do. My dad had just had Heart Bypass surgery and I was trying to look after him and hold down a full-time job. Work were really helpful and allowed me to drop to a four-day working week which really did help. I also noticed I was becoming increasingly sensitive to noise and hated being in busy or loud environments I put this down to social distancing at first but even in small groups or at home loud noises or talking is very triggering for me. My Physio had finished around this time and I felt worse than ever. My blood results were still the same and my GP advised I would have a minimum of a 37-week wait to see a specialist. I was in so much pain by this point and felt so rotten I knew I needed to do something sooner. I’d been paying into a private health care plan through work and so decided to see an Orthopedic surgeon which my GP had advised me to do. My mum has had ongoing back problems and I wondered if what I had was similar.
Going private meant that I had an MRI scan, X-rays and a nerve conduction study within one month of my initial appointment. The scans were mostly clear apart from some minor degeneration in my spine which the consultant said wasn’t uncommon and wouldn’t be causing all of the pains or fatigue I was experiencing. He requested a copy of my blood results which I showed him. His wife was a Rheumatologist and he felt the problem may be autoimmune due to the antibody markers in my blood. He referred me to a Rheumatologist within the same hospital and I was seen within 2 weeks. During the appointment, my Rheumatologist looked over my previous tests and advised he felt I had a Connective Tissue Disease alongside Fibromyalgia. I was sent for further tests immediately including an Echocardiogram and further X-rays.
In December 2020 he confirmed SLE and started me on a course of Prednisolone. When this proved to have some positive effects on my symptoms, he put me on Hydroxychloroquine and Amitriptyline. Whilst it’s taken some time for the medication to take effect, I am feeling better than I was at the beginning of last year. I now have blood tests every three months to monitor the effects of my medication and whilst my medical insurance no longer covers me for treatment for SLE I have continued to pay to see my consultant privately. My GP has referred me to his NHS clinic however wait times are becoming longer the longer the pandemic continues for. I’ve opted to continue to pay privately for my consultations with him as I don’t want to go back to feeling as unwell as I did and I feel I have no choice but to continue for the time being if I want my treatment to remain consistent.
Being diagnosed in the midst of the pandemic has been tough. I had to go to all of my appointments completely alone and finding out I had a lifelong chronic condition had a big impact on my mental health. I sought counselling and cognitive behaviour therapy from Hertfordshire’s As One service which provides support sessions to help you to manage both your mental health and adjust to having chronic conditions.
Pre-pandemic these sessions would likely to have been face to face however these have all been conducted by phone or video calls. I’ve liked having the option to have phone appointments as these were sometimes more easily accessible and meant I didn’t have to use up energy to get ready and travel to appointments.
I know that I have been fortunate to get a diagnosis as quickly as I have in the circumstances, and I will be forever grateful for that. I’m also grateful to all my family, friends and boyfriend who have been there for me through all of this maybe not always in person but always as a minimum at the end of the phone. Now I’m diagnosed I plan to find out as much as I can about SLE. I’m monitoring various aspects of my everyday life including food, sleep, daily activity, etc to try and understand as much as I can about what causes my flare-ups and if there is anything that particularly triggers them. I set up my Instagram page Lupus_Fibro_and_Me to spread awareness of SLE and Fibromyalgia in the hope that it offers some reassurance to others going through the same or similar experiences. Its a great therapy for me and has not only helped me to meet others with the same or similar conditions but also helps my family and friends to understand the daily struggles.”