“I haven’t always had Lupus. Like so many, my Lupus reared its head after a traumatic event. During my second full-term pregnancy, my relationship with my partner broke down. I was five months pregnant, and Noah was a ‘lazy’ baby. I was in the hospital every other day for the last 12 weeks of my pregnancy because he had a low heartbeat and didn’t move as much as a ‘normal’ baby. I was going through a breakup and taking care of my 2-year-old single-handedly while working part-time, and the stress and worry took their toll. In the end, my labor was induced, and Noah came into the world a healthy little boy.
When Noah was about 2 months old, I began feeling incredibly unwell, my whole body hurt, I was fatigued constantly and had no motivation. The doctors dismissed it as post-natal depression as I’d been through such a difficult time, but I knew my body, and I knew I wasn’t depressed. In the end, my mom came to the doctors with me and demanded they investigate it more as she was concerned there was more going on. The doctor agreed to run some blood work. The next day, the doctor’s office called and asked for me to go in immediately as something had shown up. My bloodwork confirmed I had tested positive for an autoimmune condition and hypothyroid, and they expected I had Hashimoto’s thyroiditis, I was given thyroxine and told I’d need to remain on tablets for the rest of my life and would need regular blood tests, but once they got my medication right, I would lead a fairly normal life…but this was just the beginning. It would take another four years before I was diagnosed with Lupus.
Although I was now on the thyroxine, and the doctors had got me on a correct dose I never quite felt ‘normal’. My muscles and joints were so painful, and I was constantly fatigued. I would sleep whenever my boys would allow me and just doing everyday chores would leave me needing a nap. We’d have family days out, and I would find I needed to rest for two to three days afterward. My relationships with my friends began to break down as I was constantly letting them down as I couldn’t manage lunches, dinners, shopping dates, nights out, etc. The energy I had was fully invested in being a mom and working my part-time job. I then began developing what I’d soon come to know as a ‘butterfly rash’ or the technical term ‘malar rash.’ My skin becomes incredibly inflamed and aggressive and my skin splits and bleeds. At first, my doctors believed the rashes to be eczema they gave me different medications, but they would either aggravate it or have no effect at all. I was constantly at the doctor’s with sore skin, UTIs, and just constant pain in my whole body.
Then one day I saw a different doctor, and everything changed. I really felt like he listened to me, he didn’t use the word depression or make excuses about my thyroid or fob me off with another cream or tablet to try, but the best part of all was he didn’t look at me like I was going crazy. He explained that he wanted to check my blood again and wanted to refer me to a rheumatologist as a lot of my symptoms pointed to an illness called Lupus. I’d heard of Lupus. I knew my great aunt had Lupus, but I never knew what the illness meant or exactly what it entailed. And I left the GP surgery and went straight on to Google. It was literally the worst thing I could have done. I was convinced my life was over. It all seemed so scary, and the stress of it all was just making me feel more poorly. (I’ve learned in recent years that stress is a huge trigger for my flare-ups.)
After three months of waiting, I saw my rheumatologist and after a lot of blood tests, body examinations, and different procedures, I was diagnosed formally with Lupus. For those of you reading this who haven’t heard of Lupus until now, it’s a chronic disease that causes the immune system to attack your healthy tissues—most commonly skin, joints, and internal organs like your kidneys and heart. There are different types of Lupus, and mine is SLE. I was gutted, but at the same time pleased, to finally know what was wrong with me and why my body was behaving the way it was. But again, this was just the beginning of another journey. My rheumatologist started me on drugs that would suppress my immune system and therefore keep my Lupus at bay, but this process can take a long time and it is trial and error as to what will work, as everybody is different. I’ve since learned my Lupus attacks my skin, muscles, joints, heart, kidneys, spine, and brain the most.
This is where it all goes awfully wrong…two years into treatment, I developed severe back pain, and within three weeks, I had lost the feeling in my bladder. I remember getting up one morning, going downstairs, and realizing I hadn’t used the bathroom and I couldn’t remember the last time I had. I tried to go, but I couldn’t urinate, and the more I tried, the more pain I was in. I contacted my GP and was seen at an emergency appointment. They believed I had Cauda Equina syndrome, and I was sent straight to my local A&E department. Once there, I received a bladder scan which showed my bladder was very full. They then asked me to try to use the bathroom and advised me on some positions to assist myself to go. Finally, I was able to go a little, and with that, they sent me home. The doctors told me I had a trapped nerve and needed to rest.
Two days later I was still struggling to use the bathroom, the pain was unbearable, and I began to lose the feeling in my left leg and was now limping. I was a sight. I went back to my GP and again was sent to my local A&E department. This time, I could tell they were more concerned. Everything around me was happening very fast. I had no reflexes from my knee down to my left leg and couldn’t feel them touching me. After an MRI scan, I was diagnosed with Cauda Equina syndrome. I had no idea what it meant. I was told I needed to be transferred to another hospital and they were getting an ambulance ready. I was so scared. The pain in my back was unbearable, and the morphine they were pumping into my canular wasn’t helping at all.
I called my mom who was taking care of my children to let her know what was happening and to ask her to bring my boys to see me. She made it to the hospital just in time for me to see them and reassure them I was okay before the paramedics arrived to transfer me. I was told the team was waiting for me and I’d receive emergency surgery as soon as I arrived. I remember being in the ambulance and asking the paramedics if the sirens and blue lights were really necessary, and he laughed and told me they were extremely necessary but not to be worried. They weren’t wrong either, as soon as I got onto the ward the anesthetist was there, ready to prep me and explain the procedure as well, as get me to sign forms to allow the operation to go ahead. I don’t remember much of the conversation, but I do remember her telling me there was a risk I could end up paralyzed. I signed the forms and was taken to theatre.
The next day I awoke back on the ward. I remember being laid flat and wanting to sit up. I had tubes everywhere and a catheter in place. I still didn’t really understand what was wrong with me or what had happened. I buzzed for a nurse, and when she came over, she explained that they had operated on my spine and a part of my spinal cord had been ‘nicked.’ I needed to remain flat for 24 hours because if I sat up, I ran the risk of the fluid bursting the stitches. She went away and called the doctor who had performed my surgery to let him know I was awake. He was with me within an hour. He explained I had Cauda Equina Syndrome. I also had a slipped disc that was protruding so much it was cutting off the nerves at the bottom of my spine, which was why I lost the feeling in my bladder and my leg. If left, it could have been so much worse. I hadn’t realized just how severe my condition was although the pain was horrendous.
After two days, I was allowed out of bed. I nearly passed out the first time I stood up. My blood pressure had been very low, and although they had managed to raise it, I still felt so lightheaded. I was given a frame and had a nurse on either side of me, but when I went to move my left leg to walk, it wouldn’t work properly. It sort of dragged. The nurse explained it was normal, and with time, it would hopefully improve. After five days, I was allowed to go home. I moved into my parents’ house with my two boys, but after a few days I needed to get home. I needed my boys to know mommy was okay, and we would get back to normal. But nothing was normal. I still had no feeling in my bladder. Before I left the hospital, I was shown exercises to help me use the toilet, and I still had no feeling in my left leg to touch, but the nerve damage inside was horrific. In time, I taught myself to walk again, and I saw a urology team who taught me how to self-catheterize.
A year after my first surgery, an MRI scan showed I still had some residual disc left behind and cutting off some nerves, and the surgeons believed a second operation could possibly help. Unfortunately, it wasn’t successful. I never had a fall or an injury to my back and after communication between my neurologist and rheumatologist they informed me they believed my Lupus had attacked my spine. I still walk with a slight limp, and when I’m tired or feel poorly, it’s more obvious. I have to use walking aids, the majority of the time. I have crutches, a walking stick, a walker, and a wheelchair, and I can’t walk long distances. But I am so grateful because even though I can’t walk far…I can walk.
Lupus has taken a lot from me, but I try my hardest to remain positive, which isn’t always easy. As Lupus is an autoimmune condition, I also have other secondary autoimmune conditions as well as Osteoarthritis and Trochanteric Bursitis. I take around 30 tablets a day, have regular blood tests, and see my rheumatologist every eight weeks as well as other specialists in between. I’d be lying if I said this hadn’t affected my mental health as well. In the beginning, I remember feeling so overwhelmed, scared, anxious, and very low, and there are days when I still struggle with these feelings, when I question why this happened to me. I worry about being a burden on my family, especially my children as there are days when they take care of mommy instead of mommy taking care of them. I worry about what may go wrong in the future or the things I may miss through being sick.
But I am also incredibly fortunate, I have amazing family and friends who are incredibly supportive. And I have the best 2 sons I could ask for. My sons, Jude (13) and Noah (11), are incredible; I mean they’re beyond amazing. They don’t remember when mommy was well, which I am very grateful for, as they don’t miss their old life. Although I feel poorly a lot, we make the most out of our time together. If I’m sick, we make beds on the sofa and have movie days or draw and color together and picnics in the living room, and when I’m well, we have days out at the beach or our favorite park. I think ‘sick mom guilt’ has made me a better mom because I want to make the most incredible memories with them when I can, instead of them just remembering me ill. Every opportunity I get I make sure they know they’re my priority and their happiness is the most important thing. I don’t hide anything from them. I always make sure I’m honest about my health, and we talk all my appointments through so they understand. I think growing up living this life is also molding them into such kindhearted, empathetic, and loving young men. The way they handle it all makes me incredibly proud.
Despite the amazing help and support I receive, I found myself yearning for someone who understood this all properly, so I began an Instagram account, @lollyandlupus. It was the best thing I could have done for my mental health. I’ve made some of the best friends I could ever ask for. I think feeling poorly and seeing how much my health affects my family, I play down my symptoms or the way I’m feeling because I don’t want to upset them. I know my health already has a huge impact on everyone around me, and they constantly worry. Having this space where I can be completely honest about how I’m feeling has saved me from myself at times. Chronic illness is incredibly hard and incredibly lonely because unless you live with it you can never fully understand. I’ve made myself a little community of support. If I have a new symptom or concern, I can ask their advice or ask if it’s ‘normal’ for us, I can rant when I’ve had a day planned but that day has had to be spent in bed. My closest friends and I have a Whatsapp group, ‘lupus lovelies,’ and we talk daily. We even travel to each other’s hospital appointments to be there to support one another, we meet for lunches and days at the beach, and if any of us feel tired and need to leave early or we must postpone that morning, we understand. I don’t know where I’d be without them. They help me so much: I can be myself, and I can be honest about my feelings and pain.
I think the thing I love the most about sharing my life with Lupus is being able to advise and help other people who are in the position I was so many years ago. I know how scary it is and how little is known about Lupus, and just being able to talk and discuss it with people who are in that position makes me feel like I’m helping. I’ve honestly made the most amazing friends across the whole world. When the doctors told me I had Lupus, I thought my life was over. I was so wrong because my life wasn’t and isn’t over, it’s just very different to how I had it planned. But when does life ever go to plan?”
This story was submitted to Love What Matters by Lauren Matthews from Hertfordshire, England. You can follow her journey on Instagram and Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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