Life after the label

I was 26 years old when I was first smacked with the label “disabled”. Let me take you back to that time and share a little bit of the first chapter in my life with chronic illness.

I knew when I was diagnosed with Rheumatoid/Inflammatory Arthritis roughly four years ago that life was going to be very different to what I had anticipated in younger years. I knew that at the mere age of 26, life was about to tip on its head and I had no choice but to just run with it (or roll – since I can’t run anymore, I’m not even that good at walking some days!) What I was never prepared for was the impact this disease would have on my identity. I expected to lose my ability to do some things, like run, but I never expected to lose myself as this new chapter of my life began.

The past four years have been a rollercoaster that I never wanted to get on and have screamed, sometimes loudly, sometimes silently, to get off. It all started with wrist pain back in October 2013. I first visited the doctor just before my 25th birthday to explain that I had intense pain in both wrists. He sent me for an x-ray – on only one wrist. This of course showed nothing, and my GP told me, in these exact words, ‘sometimes knowing there is nothing wrong helps’. Or in other words ‘it’s all in your head pet’. And BAM…the battle of my life began.

 

What followed was months of trying to ignore the pain, mixed in with a few more trips to the doctors when the pain began to spread to other joints. I saw many, many GPs over those months and not a single one took me seriously. One did reluctantly refer me for physiotherapy but even then, I hit a dead end. I got a letter telling me to call and book an appointment before a certain date. Every day from the date I received that letter I called the physio department. Each time my call went unanswered, each time I left a message, and no one ever got back to me. The date on the letter came and went and so I was discharged. I didn’t ask my doctor for another referral, I was too tired to have that fight again.

Buying our house

 

Life went on, my pain went on and I had to just get on with it. My now husband had proposed to me on my 25th birthday and I had a wedding to plan. I’ve always been an 100mph kind of girl so of course within six months I decided it was entirely feasible to plan a wedding, buy a home and start a new job. In hindsight, I was overly optimistic in my abilities and forgot that I am human, not super human. But I did all three successfully. We bought a beautiful home, we had the most amazing wedding and I went on to enjoy 18 amazing months at a dream job.

In August 2014 I walked (perfectly normally) up the aisle to marry the most amazing man in the world, my best friend, my strength and my everything. We enjoyed an amazing honeymoon in Lisbon, but it was during this that my health began to decline. We love to travel and explore; we can’t sit by a pool and just switch off without getting restless within half an hour. We walked around ten miles a day on our honeymoon and enjoyed so many beautiful and amazing sights. However, there were some days when I was too exhausted to get out of bed. We put it down to having just done three big life events and the stress/exhaustion that comes from that. Sadly, we were wrong and by my 26th birthday in October 2014 I was becoming desperate.

Our wedding day

 

The pain had spread to more than my wrists. It began to hurt my hips, hands, toes, ankles; most joints in my body. It felt like an almost overnight thing. I begged, I mean literally begged my GP to do something. Most of the time I couldn’t even get past the receptionist. One day the pain was so bad I couldn’t take it anymore. I rang the GP surgery and cried down the phone, pleading with the receptionist to give me an emergency appointment. I ended up threatening to go to A&E to try and get her to understand how bad the pain was. She didn’t care. I did end up in A&E that night out of sheer desperation and FINALLY someone listened to me. The doctor on shift that night restored some of my faith in medical professionals – she listened and heard the key thing, which had been ignored by so many others, I had a family history of rheumatoid arthritis and that numerous joints were painful and inflamed. She was horrified that my GP had done nothing with that information and wrote a letter requesting them to refer me to a specialist. In November 2014 I finally saw a consultant rheumatologist for the first time. It was a small battle won but the war was far from over.

In November 2014 I finally saw a consultant rheumatologist for the first time.

 

Little did I know that I was about to face 12 months of what can only be described as sheer and utter hell. There were plenty of wonderful things that happened in 2015 – but I will, for some time, remember it as the year that almost broke me. It was the year when I saw some of the greatest sides to people and some of the absolute worst. It was the year I had to question everything – my career, my dreams, my friendships, my future, my abilities and my sanity. It was also the year that I ran a home, worked full time, didn’t take sick days when I should have, kept it together, was a wife, a friend, a sister and a daughter. It was a year when I should have, and could have, given up on so many occasions but didn’t. It was the year I learnt that people can amaze you with their love, support and kindness. I learnt that the love of another person can make you stronger than you ever knew possible, that true friendship adapts and changes as you do, and makes allowances for the times you can’t be who you once were. It was the year my life was taken over by the big, ugly label that is ‘disabled’ and the year I refused to be defined by other people’s preconceived ideas and ignorance.  It was the year I took more medication than I ever knew existed, the year I cried more tears than I knew one human could have inside them, the year I learnt that screaming my head off in my car is an excellent way of letting it out without anyone alerting the police. It was the year I discovered that even when you can’t climb the stairs, you can damn well drag yourself up them (and through life) if you really focus on what is important and refuse to let the b*stards grind you down.

Our last holiday before my symptoms started

 

As I moved into 2016 I was optimistic for a better year, with the right medical professionals on my side as we moved towards finding the correct treatment to get my disease under control. It turns out 2016 was more difficult than 2015, but that is a story for another blog post. In 2016 I was forced to stop working due to ill health and saw some of the worst sides of society as part of this. However, through it all I had a lot to be thankful for. 

In recent years I have focused on recovering from a lot of what happened in those first chapters of my illness. I finally made my physical and mental health a priority, learnt the art of forgiveness and healed some pretty deep wounds in my heart. 

Celebrating our first wedding anniversary.

 

These days I am much more positive, which is something I have learnt can make the biggest difference even in the challenging times. My health is, for the most part, very well managed. I have an incredible medical team including my Rheumatologist, Rheumatology nurses, physiotherapists and my occupational therapist, who I am thankful for every day. I have learnt how to cope and deal with daily pain, how to protect my mental health and how to say ‘no’ to guard my physical health. These are all things I will discuss as this blog continues. 

I have always loved to write, I regularly share things on my personal social media about living with chronic illness and I am passionate about challenging the stigma and discrimination many of us with chronic illnesses face. This blog was something I thought about for a long time, before finally getting up the guts to float the idea of starting a blog to my brother, who is not only a wonderful sibling, but an incredible friend. He was so receptive to the idea that I decided it was now or never. 

My not so little brother and I before a photo shoot.

 

So here we are, this is my blog and I hope you enjoy it or learn something from it. I would love to hear from anyone living with a chronic illness, about your experiences, any articles you’d be keen to see or any questions you may have about my own experiences. I am also hoping this blog reaches people who don’t have a chronic illness, who maybe love someone who does or are just keen to learn more about something which is more common than we think. I’m always open to questions, comments, feedback or hearing your experiences, so don’t hesitate to message me on my contacts page.

Thanks for reading and remember, if all you did today was breath that’s okay. Find your positive and hold on to it, no matter what it is you’re dealing with you are enough, you matter, and you make a difference.