‘For two days, I was on the floor in tears from the pain. My body shouted so loudly I had to listen.’: Woman with rheumatoid arthritis, chronic illness shares mental health journey

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“Living in the present moment and listening to my body tell me what it needs is not something I am particularly good at. On one hand, I tick all those hippie boho boxes of clean eating and living, recycling, veganism, comfortable clothes, avoiding chemicals, and showing kindness to everyone and everything. On the other hand, I’m a hard-working perfectionist who is fiercely independent and who never stops, never gives up, and never stops thinking. I have worked so hard focusing on goals, ambitions and what my future should look like, I did not recognize the signs my body was showing me for most of my life. Last year, my body shouted so loudly I had to listen, but this is not where my story began.

Since I can remember, I have been more susceptible to colds, sore throats, the flu, headaches, and general body pain. My high school ‘friends’ shamed me for it, and so I felt there was something wrong with me and I was not normal. I have suffered from chronic upper back, neck, and shoulder pain since the age of 11 when I injured myself at school. I hurt myself in gym class, and soon after, I fell down some concrete stairs and knocked my front teeth out in the process. I spent my teenage years in the physio ward at the hospital, having X-rays, going to the chiropractor, and taking over-the-counter painkillers every day like they were sweets.

Woman stands with friend near koala
Courtesy of Emy Lou

The entire time, I was struggling with this constant pain, I was also struggling with depression, anxiety, and weight issues. Most of this stemmed from being bullied at school, but I was so shy and so anxious, I did not know how to deal with any of this. I was sad, overweight, and eating my feelings. When I was 14, I took control of my body and read a book about food and nutrition. I followed it religiously and have been a healthy weight ever since. But I still have issues with how I look and how I feel about myself. I am my harshest critic, but I also crumble when I receive negative comments from anyone. I give too much power to the world around me and not enough to myself. Thankfully, I am now aware of this and trying to change it one very small step at a time.

Despite all of this, I am, in fact, a hugely positive person. I choose to see the good in everyone, and I have always been the most upbeat, calm, and smiley person in any group. I have overcome my shyness to the point that people I meet these days think I’m outgoing. I have trained myself to appear outgoing in social situations in order to get the best from whatever situation I am in. I would now describe myself as an extroverted introvert with a need to recharge on my own after being around people for a while. My ambitions in life have and are always focused on helping people in any way I am able to and being a source of inspiration in any way I can.

One year ago, just as the first Covid lockdown restriction had eased, and I was finally back at work, I started to experience intense pain in my right foot and my hands. I thought I must have a bruise of some kind on my foot, and my hand pain felt similar to sciatica, so I assumed nerves were touching in my shoulder and affecting my hands. The same week my shoulder went into an intense spasm, and I was unable to move. I spent two days on the floor in tears from the pain. These shoulder spasms have happened before and are the worst pain I have ever experienced. But the foot and hand pain with it was new.

Woman at work as tour guide with giraffes
Courtesy of Emy Lou

After seeing a couple of different doctors, I finally found one who took the time to listen to me and do tests for me. So far I was just given pain medication every time I was in intense pain and no tests were ever done to find out what was really happening. I found out I had the rheumatoid factor in my blood tests. At the time, I didn’t understand just how awful that news was because I knew nothing about rheumatoid arthritis. I was put on a very long waiting list to see a rheumatologist. Months passed whilst I waited, and I had so many flare-ups between my hands, my feet, my shoulders, and my hips I was in and out of the doctors, and sometimes the hospital emergency department because I had no way to manage the flares, and I was feeling so desperate and in so much pain.

Woman with chronic illness lying in hospital bed
Courtesy of Emy Lou

I was working as a tour guide at the time which also involved helping out in the restaurant after tours, and it suddenly became the hardest job of my life. My tours were done on foot, and I needed to carry things with me on tour, but walking on my painful feet and carrying anything with painful hands was exhausting. I also couldn’t hold cups of coffee or plates of food without shaking and almost dropping them. I felt completely useless, and I also felt judged by many of my colleagues who thought I was becoming lazy and somewhat incompetent at the job.

Woman working as a tour guide with giraffes
Courtesy of Emy Lou

While all of this was happening, I was also diagnosed with an AVM in my brain. This basically means there are a bunch of blood vessels in my brain that should not be there and can cause a stroke at any time. I’m not allowed to take any anti-inflammatory meds (bad news for someone with RA!) to decrease the chances of having a stroke, and I need to have brain surgery to remove it. This news was overwhelming as I received it within a month of being diagnosed with RA. The brain surgery will take 3 to 6 months to recover from, and during that time, I may not be well enough to work and won’t be allowed to drive. As someone who has been driving since the age of 17 and is as independent as I am, this idea really does scare me.

A month after these two diagnoses, I was scheduled to take a 7-hour bus trip to visit my boyfriend who had recently moved away for work. (Another reason I was upset and stressed amongst my health concerns!) I took an anti-inflammatory painkiller while on the bus even though I knew I was not supposed to. My entire body was flaring up, and I didn’t know how I would survive the remaining bus journey. The next thing I remember was getting intensely hot and itchy. I felt sick and my heart rate was beating through my chest, and I suddenly found it hard to breathe. I could feel my throat closing up as I staggered to the front of the bus to ask the driver for help and then I passed out at the front of the bus. I woke up surrounded by ambulance medics and realizing I was not able to talk or move my body as it felt completely paralyzed. I had gone into anaphylactic shock from the pain killer and was given two rounds of adrenaline and help to breathe.

The next few months involved several mental and physical breakdowns, crippling panic attacks, and the darkest of dark thoughts. I tried to push everyone away from me because I could not cope with how I was feeling both physically and mentally. I live on the complete opposite side of the world from my family, I left all of my friends to go live with my boyfriend where his new job took him, and I found myself without a job, without friends and family, and feeling incredibly low and in constant pain.

Woman with her mother, both have dyed hair and sunglasses
Courtesy of Emy Lou
Woman with blue hair stands with friends
Courtesy of Emy Lou

I was finally able to see a rheumatologist and have now been on medication for around 9 months. I actually refused to take the medication for the first couple of months because I was so afraid of the side effects. But unfortunately, the pain just got too much. It has been a struggle since I started because it takes a very long time for the medication to take effect, but the side effects are fairly immediate. Currently, they include nausea, hair thinning, and weight gain, and sometimes my body hurts when touched or the opposite–it feels numb.

The positives however are I am now able to use my hands and feet and move around almost like a normal person. Small things can trigger the RA. Stuff like housework or driving for example can cause flare-ups in my hands and wrists. I find I am tired all the time. Yet I can’t sleep at night. It takes a long time to get to sleep and then I wake up every couple of hours.

I have to take life slower, otherwise, I make myself ill very quickly. The intense exercise I used to do and enjoy is completely out the window now. I feel weak, out of breath, and in too much pain. But I am now doing a lot of walking and low-impact exercise from home. I’m learning that if I have a full-on day that is all go, go, go; I need to take it easier the next day to avoid catching a cold and having a pain flare.

I still have a variety of health concerns that have nothing to do with RA or my brain AVM. For example, my shoulder spasms seem to be unrelated to RA. I have also developed an unenviable list of foods I am now highly intolerant to. I am bloated at some point every day no matter what and I can’t breathe through my nose, despite having a nose specialist telling me everything looks A-OK. It doesn’t sound like a big deal, but it makes exercise and sleeping quite difficult!

As I write this, I am in my 8th week of Australia’s 2nd Covid lockdown with no end date in sight as the situation is becoming worse every day. However, I am one of the lucky ones who still get to leave the house to work. I work as a carer for a girl with Autism and ADHD. I put my heart and soul into my work as I have always done, and I understand her exhaustion and her anxiety in a way that some of her previous carers didn’t. And what’s more, her mother (my boss) is understanding and sympathetic to my limitations regarding the RA. We are a very good team, and I am so grateful I found this job exactly when I needed it and have been welcomed into their family.

My friends and family are mostly hundreds or thousands of miles away, but I now talk with them regularly now that I am feeling better about myself. This has made a huge difference to my mood in general.

Woman and friends sit with dog on the grass
Courtesy of Emy Lou
Woman and friends together at birthday party
Courtesy of Emy Lou

I now see a psychologist once a week where I mostly focus on a therapy called EMDR to help me deal with past trauma in order to release negative thinking patterns and potentially even help with physical pain. I am also learning Spanish online with an amazing Spanish-speaking tutor, and I am completing a course where I will be able to teach English online as a second language to students of all ages. My hope is once I have my teaching and language skills on point, I will be able to work from anywhere in the world without hurting my body in the process. I also use a meditation app every night to help me get to sleep, and I go for a walk along the beach almost every day.

Woman with red sunglasses in a black dress
Courtesy of Minzoet

My future looks a little blurry at the moment due to the lockdown in my country. Right now, I am learning how to feel at peace on my own and not push myself too hard. When I put too much on my ‘to do’ list on a day off from work, I end up feeling very ill the next day; much like being hit by a bus (I imagine!)

I hope when the Covid restrictions ease a little, I will be able to leave my country. I desperately want to visit my family and friends! I want to travel, explore, and experience new cultures and ways of life. I want to understand my body better and gradually learn how to do the very best for myself. I am absolutely determined not to get any sicker. My body has spoken out several times, and I really am trying to listen now! I am convinced I can reverse a lot of my health issues with more research, patience, lifestyle changes, and experimenting with different things until I find what is right for me and my body. My goal at this stage is to live a life that is calm, creative, positive, and surrounded by love. I want to help people feel good about themselves and feel inspired to be their best selves. I want to continue on this journey with myself too and see where it takes me.”

Woman holds camera out in field
Courtesy of Emy Lou

This story was submitted to Love What Matters by Emy Lou of Maroubra in New South Wales, Australia. You can follow her journey on Instagram. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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