Once Upon A Time, Lupus
Six years ago today, I signed a work contract with Citibank.
The next morning, I admitted myself into A&E with agonising chest pains.
I found out within hours that I had two blood clots in my lungs.
This was only the beginning…
What followed was a succession of tests, spinal taps, biopsies, MRIs, CT scans and a lot of words that were unknown to me, mainly one …. Lupus.
What happened after the diagnosis was like an earthquake that shattered my life into pieces which I then learned to rebuild bit by bit.
As of today, I design my own jewellery which is something I never could have imagined possible. I have a beautiful studio and an online shop.
I have an amazing partner who has stood by me through some of the darkest moments of my life.
The journey was long and arduous and as I reflect upon it now, I cannot quite believe how far I have come.
The Tip of the Iceberg
I was officially diagnosed with Lupus in 2015 after a series of severe flares that had me sleeping on a stretcher in the hallway of an overcrowded A&E ward, more times than I would care to remember.
Lupus is unfortunately not a very well known disease. Although, with celebrities such as Selena Gomez and Seal who have publicly come forward with their struggles with Lupus, it is a lot more spoken of nowadays.
It is very complex and there are a lot of different types and levels of gravity.
While the exact cause of Lupus is not known by Doctors, they do believe that genetics, hormones, ethnicity, one’s environment and previous illnesses can be involved.
After asking a lot about my family genetics and medical history, the doctors concluded that in my case, the lupus was triggered by a car accident I was in, in 2009 when I was living in France.
I woke up from a coma with multiple skull fractures, facial fractures and a lot of damage done to my kidneys.
There were no other symptoms at the time other than hyperpigmentation, extreme fatigue and depression which the doctors did not seem too worried about given the circumstances.
I moved to Ireland from Belgium in 2013 in need of a fresh start and the symptoms only got worse.
How it began
At the beginning of 2014, I was taking boxing lessons when my hands suddenly started to hurt, it was not a pain that I had experienced before. It was not like an injury, it was an internal pain which I now know was Arthritis.
My trainer did not want me to continue the classes as she did not know if it would make things worse, so I stopped.
The pain in my hands however, intensified. There were good days, bad days and the worst days where I could not even hold a cup of coffee let alone get dressed to go to work.
In July 2014, I woke up with the feeling of having a blade in my throat every time I would swallow.
Funny story about the date, I was supposed to go on a second date with my current partner, Oly, that day.
I was so excited.
We really hit it off on our first date and this was going to be our second official date.
I could not believe this was happening. I just kept hoping the pain would subside but it just kept getting worse. I went to see the doctor and he immediately sent me to A&E since I was struggling to breathe.
At the time, I considered that to be one of the most painful experiences of my life.
I texted Oly to let him know I couldn’t make it on the date and that I was being admitted to St Vincent’s hospital for a throat infection.
I knew how crazy it sounded, but it was true.
Of course, he wasn’t completely convinced it was true and I cannot blame him.
He asked me what ward I was in and when I texted back “ St Andrews, bed 304”, after that, he knew it was true.
He came over a few days later and we had our second, third and fourth date at the hospital and we have been by each other's side ever since.
I was kept in hospital for over ten days, it turned out I had an infection in my throat which was making it difficult for me to breathe. Something to do with swollen lymph nodes which I didn’t quite understand at the time.
As the months went by, I started to feel worse and worse, I was constantly tired and overcome with waves of inexplicable pain and fatigue. My fingers and hands would swell randomly and the pain was excruciating.
One day I could be absolutely fine and the next, I would not be able get out of bed.
I would go to see my GP when it was really bad, but he couldn’t explain it either.
On February 1st 2015, I signed a permanent contract at CitiBank as a full time French Speaking Customer Service Agent.
I had been working for them for a year already but I had a different contract which did not include paid leave and healthcare.
This contract included full health coverage and without it, I honestly don’t know how I would have gotten through what happened next.
The morning after, I woke up with pains in my chest that were so excruciatingly painful that I could not stand up straight.
Oly insisted on bringing me to the hospital, safe to say I did not need much convincing.
The doctors located two blood clots in my lungs and decided to keep me for more tests.
I already had a history of blood clots since I was 19 and had been diagnosed with APS ( anti phospholipid syndrome) which is basically a blood clotting disorder so the blood clots were not new to me.
The doctors started talking about my spleen being swollen and kidney failure, blood platelets, white blood cells, inflamed lymph nodes and many other terms that meant absolutely nothing to me.
I was completely lost.
I just wanted to feel better. I was barely thirty but my body felt so old.
The hospital was often overcrowded so I spent a lot of time sleeping in the corridors with my backpack pack under head in lieu of a pillow and all the seasons of Sons Of Anarchy downloaded on my laptop while waiting for a bed to free up in a ward.
I remember one time, I was on a strechter in the A&E hallway of the hostpital waiting for a bed to free up.
There are many obvious disadvantages of sleeping in the hallway of a hospital and some that you might not think of unless you have gone through it yourself. One of the most obvious is of course, no privacy, I had to sleep with my bag under my head which served as both a pillow and an anti theft. There is also no way to turn off the lights so it is constantly bright and nearly impossible to sleep unless the doctors prescribed something. I could hear the other patients screming in agony or crying out which is not something I ever got used to. Unsanitary public toilets and no showers were very difficult for me to deal with as I am quite the neat freak to begin with.
One of the less obvious cons and a basic one is the plugs for the phone chargers, depending on where you are in the hallway, you might not be able to charge your phone.
As I am writing this, I am aware that all these problems are pretty First World and I should be grateful to have had a bed at all along with free healthcare and amazing doctors, which I am extremely grateful for. Don’t get me wrong. I guess I am just describing the day to day discomfort and inconvience of the situation.
At the time, I thought that my joint inflammation was linked to an intolerance to gluten. It made things a bit tricky since the hospital meals served in the hallways were generally sandwiches. I had asked the nurses for a gluten free option but they were so busy and I don’t think they had anything so I would eat fruit and crackers. After two days, a very friendly older man named Des was put on the stretcher beside me. We were next to eachother in the hallway for three days and two nights, we got to talking, he was also on a gluten free diet so his wife would bring food for me as well and sometimes coffee. It was so nice to have someone to talk to and to share the experience with. He was having trouble with his pacemaker and was waiting for a bed to free up in Cardiology. We talked alot, about chronic pain and the impact it had on our lives. We shared movies and music. He even got to know Oly when he came to visit and asked him to fix his laptop so he could watch movies and send emails to his children.
On the third night, arounf 11pm, the porters came to announce that they had a bed for him. Des refused to leave and told the hospital staff that I was there before him and that I needed a bed more than him. He woke everyone up with his protests. I was touched by the selflessness of this man who I barely knew but also a little uncomfortable that everyone was looking at me.
After a little convincing Des went with the porters to his new bed in the Cardiology ward. I don’t know if this was related or not but the porters came for me a few hours later at 4am and whispered to me that they had found me a bed and they were bringing me. I cannot explain what went through my head at that moment. Knowing that I was minutes away from getting into a clean bed with a pillow, a plug for my charger, a semi private bathroom, a bottle of water and staff who were more available and not as stressed and overloaded than in the Emergency department.
Des and I stayed in touch, I went to visit him regularily in his Cardiology ward with fresh coffee and gluten free biscuits. He was happy to know I had got a bed soon after him. After his discharge we emailed every now and again. He was feeling alot better and we had talked about going to visit him and his family for a day in Wicklow. As life got in the way, we put it off a few times until one morning I received an devastating text message from Des’ wife to let me know that he had passed away. I broke down in tears, I felt so ashamed and guilty for not making it out to visit him and blessed at the same time that I had the chance to meet and befriend such a selfless and kind person during a difficult time in my life and I hope that he felt the same way.
The bone marrow biopsy was most definitely the worst one.
I was in my bed, in ward with three other lovely ladies. The doctor drew the curtains and told me she had never done a bone marrow biopsy on someone who was not under anesthesia. It would have been too risky with my clotting disorder. She was so nervous and apologetic, I actually felt bad for her. The nurse was there too to hold my hand. I guess they knew what I was about to go through before I did.
The doctor was behind me as I sat up in the bed. The nurse held my hand and told me to squeeze it if I needed to. I am pretty tough, generally, but this was something else. The doctor apologised once more, put something cold at the back of my hip then slowly inserted what felt like a dagger. I could not help but scream. I heard the crack of my bone. She kept apologising over and over. The nurse whispered in my ear that I was doing great and told me to squeeze her hand. Unexpected tear poured down my face and I could not stop screaming. The room went silent. With only a curtain separating me from my three roommate, the silence was so heavy and I could hear their gasps and whispers everytime I stopped to take a breath.
It was over within a few minutes. I can’t explain why but I felt violated. I don’t know if it was the lack of privacy or awareness or if it was just the excrutiating pain. The nurse gently helped me lie down on my side and I curled up and began to shiver and sob uncontrollably. The doctor squeezed my hand and quietly apologised one last time before leaving the room.
The biopsies and spinal taps after that, though painful, were nothing compared to the bone marrow biopsy. I am so thankful to have had such an compassionate doctor and a kind nurse to hold my hand. It made the experience less traumatic.
I won’t bore you with the details of all my biopsy stories....
Long story short, after a year I was FINALLY diagnosed with Lupus.
Do NOT Google your Diagnosis
My first thought was… What is Lupus?
A quick Google Search defines Lupus as an autoimmune disease through which your own body’s immune system attacks its organs and tissues such as joints, skin, kidneys, blood cells, brain, heart and lungs.
So basically, my body is attacking itself ?
As I continue to scroll down through the search engine, I see that the (long) list of symptoms include muscle and joint pain, fever, rashes, extreme fatigue, hair loss, chest pain, sun/light sensitivity, kidney problems, mouth sores, miscarriages, blood clotting, vision problems...
As I read further down the Google search, I come across a fact that immediately baffles me : “ Lupus is also known as the invisible illness...”
Invisible? I literally just read the list of most common symptoms and they are anything but invisible.
I am confused & scared.
I am thinking about all the events that lead me here.
My car accident, my move to Dublin, all my flares that brought the doctors to this diagnosis. Did I do something to deserve this? Was one of my main thoughts. It brought on self loathing and shame.
I had never really practised self-love or self-care growing up especially since the car accident. I was struggling to accept the new reality and the new me.
I spent my life surviving rather than living it to the fullest.
Now, I am angry.
Angry with my body, angry with myself, angry with the doctors.
As my stay in hospital extended ( I eventually got a private room) and the doctors continued my tests, more and more diagnoses were added to my medical file as I continue to Google all the medical terms:
Lupus nephritis, which is the inflammation of the kidney.
SLE ( Systemic lupus erythematosus) in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs.
APS ( Antiphospholipid syndrome ) which is an autoimmune disorder. Signs and symptoms vary, but may include blood clots, rash, chronic headaches, and seizures.
Rheumatoid Arthritis which is a chronic inflammatory disorder that can affect more than just your joints. In some people, the condition can damage a wide variety of body systems, including the skin, eyes, lungs, heart and blood vessels.
The worst is behind me, or so I thought.
Then the treatment started…
Ok. So what now?
Firstly, my first kidney treatment was astronomically expensive.
Over €290 per month for kidney medication only, then there was blood thinners, steroids, and arthritis treatments on top of that.
Secondly, the side effects were horrendous. Fortunately I have since been put on a new treatment which is lot more budget friendly with less side effects.
I started to lose chunks of hair when I started my kidney medication which led me to shaving my head and starting over from scratch.
I didn’t realize it would be such a big deal for me, but it was.
I couldn’t stop crying once my head was shaved. I felt like I had lost an important part of myself, my femininity. I couldn’t look at myself in the mirror without seeing someone else.
For the first year of my treatment, my body was getting used to the treatments, I would flare up every month or so and end up back in hospital with the doctors calling it “a close call” each time and they would discharge me days later with a new Steroid prescription to ease the flares.
I used to think the worst part about the steroids was gaining weight and having a swollen face for weeks, until I ended the treatment.
It would leave me feeling completely empty and emotionally wiped once the steroids stopped.
I was in a dark pit that I could not see myself getting out of. I was miserable all the time. Its almost like there was a perpetual grey cloud looming over me. I didn’t see the point in getting up in the morning. This led to a lot of scary dark thoughts.
I was recommended to the psychiatry department after being diagnosed with depression. The doctors explained to me that I had withdrawal symptoms due to the steroids and that it was “normal” to feel depressed and that it would go away. They offered me mood stabilisers but I honestly could not bring myself to take more medication. It would just be a never ending spiral.
It was like my mind was at war with my body which was pretty symbolic as I really needed to learn to love myself and care for myself.
I had never felt so lonely. I couldn’t explain what I was going through, it just seemed like I was so far away from “normal civilization” I discovered online support groups for women who could understand what I was going through and this helped a lot.
I have the most amazing partner who would do absolutely anything to make things better but there is still an invisible wall between me and the world. I had to constantly cancel on plans because I wouldn’t be feeling up to it, which eventually led to cutting myself off from people because of the shame I was carrying.
Ah Yes, the Invisible Illness
I could not explain the pain to anyone, because they simply did not understand.
I didn’t seem sick to people who saw me on my good days so they couldn’t understand how bad the bad days were.
I started to understand where the term “ invisible illness “ came from.
I couldn’t go to work more than two days a month, I felt so guilty for missing out so much on work but I was also so grateful to have a contract that allowed for employees to be sick.
”You don’t look sick” Is what I heard so often when I would miss social events or work. If only I could explain what a day in my life was like, I would sound crazy. Ultimately, by saying I don’t look sick, you are implying that I am being dishonest about my condition and that, in itself is enough to drive someone made.
My good days are very good and well my bad days, you can guess... are simply awful.
I spoke to my manager at Citibank about my diagnosis and my fears, he was so kind and understanding and he told me that I had six free counselling sessions included in my healthcare package and that he thought it would be good for me to make use of them.
At that point, things could not get any worse so I decided to give it a shot.
I had a great counsellor who helped me to accept my diagnosis instead of fight it. It led to me opening up on so many other levels way beyond the Lupus.
I have been in counselling since then and I highly recommend it to anyone.
There is a feeling of freedom that I feel when speaking to a therapist. There is no judgment, there is no need to filter how I feel or what I say.
It’s so liberating and it has helped me come to terms with the disease and with my body. I learned to be kind and gentle with myself. I used to be a workaholic and very competitive. I had to be the best, always.
I started practicing mindfulness, I started going to a gym on a regular basis, daily meditation and yoga stretching.
I also read many self help books and started journaling.
I began listening to my body and what it needed.
Now that I am in tune with my body, I have definitely noticed a link between my mindset and the flares in my body.
If I get upset or anxious, within minutes I will feel my fingers start to swell and the pain shoots through my joints.
It is a lot easier to control now that I am aware of it.
I have also noticed certain foods that trigger my flares such as dairy, gluten and alcohol.
I also joined a few different forums and online support groups for Lupus patients and I have to admit that when I see the daily struggle and pain that others are in, I feel grateful for the days where I am not in pain.
Before I was diagnosed with Lupus, the arthritis was so bad, I sometimes could not physically take care of my basic needs.
Then came the Jewellery....
When I started making jewellery ( see blog post on how I started off here), I did not get my hopes up and I honestly didn’t think that I would last very long.
I remember coming back from my first two jewellery making classes with sore hands.
I was disappointed because I had found a hobby that I truly loved but I knew it just was not a good fit for my condition since it was constant strain on my hands.
I didn’t quit, instead started warming up my hands and fingers before beginning to make jewellery and I would take extra care of my hands.
When the schools closed down at the first lockdown and I started practicing my jewellery making from home, I was amazed at how much I could work without flaring up.
For the first five months, I would work five to seven hours a day with hardly any joint pain whatsoever. That is when I realised the power of positive thinking.
Every morning of lock down, I woke up with one thing on my mind... I wanted to make jewellery. Somehow, I made it happen. My joints stopped hurting and I was able to work for hours.
I honestly think that doing something that I loved had a huge impact on my physical state.
I still have joint pain every now and again but nothing like I used to.
Every so often, I push myself too hard and I forget to take care of myself but my body doesn’t fail to let me know I have gone too far. I need to care for myself constantly and remember to listen to my body which is not something instinctive.
I have always been overly hard on myself and I push myself to my limits.
Living and working with Lupus has taught me to listen to care for my body and put my well being above my To Do Lists. It has also taught me to appreciate every morning that I wake up and every night that I go to bed without pain.
No matter how bad things are for me, I know it could always be worse and it has been.
The New Normal
I have been in steady remission for over three years now and well adapted to my current medication so my flare ups are a lot less severe than they used to be.
My most common flare ups now are joint pain and swelling in my hands, knees, elbows and neck. These are not the kind of flares that I used to have and that would put me in hospital. These are chronic pains which I have learnt to live with.
They can appear quite abruptly and can be linked to many factors such as the change in weather, the cold or the heat, fatigue or due to a strain when I work too much.
Throughout the years, I have found ways to soothe the pain, such as (very) hot showers, hot water bottles, weighted blankets, daily stretching, meditation and incorporating fresh turmeric and ginger in my diet.
Most of all, I have learned patience and acceptance. Being gentle and patient with my body and my abilities and understanding that I am not the person I used to be.
I learned to rely on others to help me and to let go of the need to control what I could not.
My condition is one of the reasons that I started to work with natural healing crystal beads and incorporating them in my designs. I want my jewellery to be more than an accessory and to have meaning and power.
I think that whether or not, you believe that wearing natural gemstones will make a difference, deep down it gives me hope and it makes me feel stronger and more confident and that in itself is a huge step forward.
One last paragraph😃
I hope to bring some awareness to Lupus with this post and I hope that if you’re reading this and you can relate in any way, do not give up.
We are stronger than we think. We are survivors and warriors.
We can all make our dreams come true, it might take a little more time and work for some people but you’ll be proud of yourself and the end of the journey. We just need to tune into what our body needs.
Thank you so much for taking the time to read this. It has been so therapeutic for me to put all this in writing and I hope it has helped you in some way.