For me this is a subject that feels endless. Getting properly diagnosed with an autoimmune disease can take a while.
First signs
My first signs of an autoimmune disease began back when I was around twelve. I would often complain of aches and pains in my arms, legs and back. Mum had her concerns and felt it was time to seek medical advice. We saw our family doctor and the within minutes, we were told everything was normal and it was simply “growing pains”. So we knew why I was in pain… we had no reason not to except what the family doctor believed was the issue. The problem was my pains worsened over time. I struggled in the winter with the cold. I would loose sensation in my fingers and toes. My back would ache so much it became unbearable.
Mum decided to take me back to the GP and try again. Again, we were told it was just growing pains and it would soon stop. The doctor didn’t do tests, didn’t ask questions and didn’t give any advice, or if i’m honest, any real care. I began to get older and learned to live with the pain I was experiencing. I even stopped mentioning it. I felt like there was no point as it didn’t change anything.
Before long I had moved out of the family home and had to be responsible for myself. The pain I experienced continued and I was overwhelmed with many new symptoms. I knew something was not right and wanted to get to the bottom of it. After a number of visits to my family doctor and a number of tests, the conclusion was there was nothing wrong with me. I felt like I was going insane. I continued to battle the pain on my own but after some time it was becoming unbearable.
Fibromyalgia
After a visit to yet another doctor, I was given an actual diagnosis – Fibromyalgia.
I didn’t know what to think. I had no idea what it meant. The doctor prescribed some anti-inflammatory meds and suggested the best course of action would be to start on anti depressants. Not because I was depressed but due to what it contained and he felt it would help. I really didn’t want to go down that road… I felt I needed to do my own research. The main issue was, at the time of my diagnosis (at just 19 years old) fibromyalgia was hardly heard of. It’s only in very recent years that this changed.
To be honest I was happy to just have a diagnosis and a direction to go in, but it never felt right. What could I do? I had to accept it and carry on, but it felt wrong.
After the birth of Megan, Willow and Cody my health deteriorated drastically. I had so many new symptoms and I was struggling to get help or even answers from the doctors. I got to the point where I just gave up. I was tired of feeling crazy, feeling alone, tired of the pain and once again I had to pull myself together and learn to live with what became my ‘normal’.
I would keep everything I felt bottled up and tried to deal with it myself. I really believed it was a pointless mentioning it. Admittedly, I was completely wrong to do that. It didn’t help me or the people that cared about me. It made things far more difficult to deal with and I would always recommend talking to someone and allow them to help you and keep fighting to get the answers you seek.
Time to go…
At this point we (Adam) had decided to leave the UK and move to Portugal.
When I fell pregnant with Oscar things deteriorated rapidly. Every extra problem I had was always pinned on the pregnancy. But I got through it and little Oscar arrived. I hoped that things would start to improve but unfortunately I was so wrong.
I didn’t have the best experience of giving birth in Portugal and this had a massive impact on me. I was on my own, Adam had to look after the other three kids, we had no family here. The birth was horrendous and after three days I was allowed home, but was brought back the following day for minor surgery after finding out the pain I was experiencing from my back passage was thrombotic hemorrhoids.
I didn’t appreciate until years later what a traumatic experience this was for me. As a result I suffered from severe anxiety. I had never experienced anxiety before and wow, what a bitch it is. I really couldn’t believe I felt the way I did. It was by far the most difficult time and my mental health really declined. Adam would travel back and forth from the UK for work while I stayed home with the kids. I felt so alone and to be honest I felt like I was going insane. I couldn’t sleep, eat or think. I really felt like I was being controlled. I had never felt this way before and I was desperate for help!
That day
One morning I had an appointment at my local hospital (local being 45 mins away). I had the baby in the car with me and as I reached just about the half way point to the hospital I had a complete breakdown. It really hit me out of nowhere.
I felt like I couldn’t go out alone. I had so much fear. The way I felt scared me and I was terrified something bad would happen. Its almost impossible to explain how difficult it is to deal with something like that. It was a nightmare for me and for my husband. He wanted to do everything he could to help but felt helpless.
That day in the car, I pulled over and cried. Then cried some more and turned the car around and drove home. I knew I needed more help than I thought. I pulled up outside the house and Adam came out asking why I was home. I laughed. He had no clue why I was standing there laughing but the laughter quickly turned to tears and then uncontrollable crying. I remember saying to him that I really needed help. I felt like I couldn’t go on feeling the way that I did. I just wasn’t myself anymore. I was someone I didn’t like but couldn’t get away from it.
Panic attacks
I saw a doctor who advised me to take anti depressants and prescribed various other meds for panic attacks. I remember clearly as she said those words it dawned on me that I had had a real panic attack. She told me to take half a tablet whenever I felt anxious and that it would make me feel better. That has always stuck with me. I walked out looking at the prescription and I had this feeling that if I followed her advice and it worked, I may rely on it. I’m not saying you should ignore medical advice but I had heard a lot about people becoming reliant on meds and it was a real concern. In the end I threw away the prescription and decided to fight hard.
This period of my life was a real struggle but I had done a lot of research and managed to find a specialist consultant in the Algarve who focused on autoimmune disease and I booked an appointment. I didn’t have high hopes (from a lifelong bad experience with doctors) but I really needed to try something new. I needed some support.
Lupus
We had a long discussion at the first appointment – problems, symptoms, history. The important point was he (the doctor) was really listening. After our long discussion he was convinced it was Lupus but would need to confirm with tests.
I had many blood tests, one in particular ‘ANA‘ which came back positive, confirmed his theory. I had been diagnosed (incorrectly) in the past but this time it felt right. I wasn’t overly concerned with the diagnosis, just happy to get one that made some sense.
I remember sitting in the consultants room, staring at him and smiling with a sort of strange relief. I was relived because despite past experiences and seeing many consultants throughout my life, I finally felt that I had found the right one, one who listened and put the pieces of my puzzle together.
If you or someone you know has an autoimmune disease you will know its not an easy journey – it’s a painful journey – but it does reach a point where you start to win, as long as you are persistent, keep fighting and let in the ones you love and allow them to help you.