Living with an invisible illness

Something a bit different on my blog today. I don't usually post anything personal on here or on social media. But today is International Fibromyalgia Awareness Day. And while I don't often talk about it, this week I've been struggling with symptoms. So here's a slightly adapted speech I gave on the subject of chronic pain a few years ago.  

Four years ago, I was asked to speak to some local women under the broad heading of the ‘challenge of being me’. I had no idea what to talk about. I work as a health journalist, have two growing boys and run a home. But this is no different to 1000s of other women aged 40-something around the country.

Then my husband suggested that I talk about what it's like to have a medical condition that no-one actually notices, yet is always there in the background. Maybe, he suggested, I could raise the awareness of chronic pain conditions.

In the UK, pain is one of the most common reasons why people seek medical treatment. It’s considered to be chronic, long term, if it lasts for longer than 12 weeks. It’s estimated that people who have chronic pain consult their GP up to five times more often than those without it. According to the British Pain Society, around 10 million people in Britain suffer pain almost daily, resulting in a major impact on their quality of life and days off work.

Arthritis, one of the most common causes of chronic pain, affects one in six of the UK population. But according to the charity Arthritis Care, the knowledge of the condition is very low. There’s a lot of misunderstanding and misinformation, and most people think there's nothing they can do about it and that it's inevitable.

When I originally wrote this speech, it happened to be Arthritis Care Week, with the theme that 'something can always be done'. The charity had been asking people what their 'something' was - the first step that got them started in trying to manage their arthritis, rather than letting it manage them.

I have fibromyalgia. This poorly understood chronic condition is often grouped under the heading of arthritis, although now doctors believe that it is caused by a problem with the nervous system rather than the joints and muscles. More recently, research has looked into the role of blood vessels too. Like arthritis though, fibromyalgia can affect the joints and causes chronic pain.

Every year, May 12th is designated International Fibromyalgia Awareness Day. This date was chosen because it is Florence Nightingale's birthday. It has been widely documented that she suffered from a fibromyalgia-like illness for over 50 years, leaving her bedridden with chronic pain and fatigue. This was probably triggered by a bacterial infection caught in the Crimean War.

According to the Oxford English Dictionary, a challenge is 'a task or situation that tests someone's abilities'. Fibromyalgia certainly fits the bill. It impacts on my life every day, sometimes all day, affecting how I feel and the decisions I make. But the question I have been asking myself over the last week is do I see it as a challenge that I have to overcome?

To give you some background, fibromyalgia is estimated to affect around one in 20 people worldwide, yet many people have never heard of it. There's no specific test and the only way to diagnose it is to rule out everything else first, such as thyroid disease, multiple sclerosis and arthritis.

Fibro, to give it its shorter name, causes a whole host of different symptoms, impacting on every part of the body. But some of the main symptoms are widespread pain and stiffness, fatigue, irritable bowel syndrome and poor or unrefreshed sleep. The pain can vary from aching, to a burning or bruised sensation to stabbing pains and can occur anywhere in the body.

No-one fully understands the cause of fibro, although there seems to be a problem with the way that pain messages are carried and received around the body, alongside low levels of certain chemicals and hormones in the brain and disturbed sleep patterns. People with fibro are very sensitive to pain messages, so we experience the pain due to, say, a simple bump on the arm more severely and for longer than other people would do.

In many people, fibro has a specific trigger - an infection or a physical or emotional trauma. Mine was a throat infection at the age of 13, which triggered my immune system to attack my joints, leading to reactive arthritis. For six to nine months, I had the body of a 90 year old. I found it hard to walk, write and do simple daily tasks. I took a lot of time off school and couldn't take part in PE lessons or join in with certain activities. When the symptoms finally cleared up, the consultant warned me that I could experience problems later in life, particularly whenever I had a viral infection or was feeling run down.

When I was 18, while at university and back to leading a normal active life, playing tennis every day, I went back to the same consultant with pain in my neck, shoulders and back, and a bruised feeling in my legs. He diagnosed fibromyalgia. But at the time my symptoms were so mild that I didn't think

about the long-term impact.

Nearly 10 years ago, this all changed. Following my first and only flu jab and a stressful few months with building work at home, I developed pain all over (especially in my joints), dizziness and severe fatigue. The only abnormality that came up in the investigations was vitamin D deficiency, which can cause similar symptoms but can also be triggered by chronic pain.

The rheumatologist I saw didn't know much about fibromyalgia, and it was only two years later that I realised this was a severe flare up, possibly triggered by the flu jab. I notice now that whenever I get an infection, my fibro symptoms get worse.

Over the last few years, my symptoms have become more pronounced. I get at least one flare up for a few days each month. A flare up is like having a bad case of flu - fatigue (being so tired I can't lift up my arms), feeling dizzy or 'sea sick', experiencing pain all over and a raised body temperature. Even on a good day, I can feel a little heady and tired (although not fatigued) and experience pain somewhere. I’ve since been diagnosed with hip osteoarthritis as well, all stemming back to the original viral infection I had at the age of 13.

So do I see my fibro as a challenge? Yes I guess I do, but no more of a challenge than any other chronic pain condition. People with chronic pain often look completely fine on the outside but inside it can be a whole different story. Unfortunately, we are the only ones who know how we are feeling and sometimes it is difficult to put this into words.

Fibro isn't life threatening and shouldn't get progressively worse, although it flares up and down and each flare up varies in severity. My fibro affects many aspects of my life. For example, I can't sit or stand in one position for long periods as my joints are too stiff; some days, I stay indoors as much as possible, as wet or cold weather makes my symptoms worse. And I try not to drive too late at night, as this is when I am most likely to experience the fatigue and dizziness. Late nights and loud music can trigger a flare up too.

I feel that the biggest challenge is that there’s no specific treatment for fibro, and that most GPs don't know much about the condition. The prescribed treatments that are available aren't always effective and, in many cases, the side effects can be worse than the symptoms themselves - especially for people like me, whose symptoms are mild to moderate rather than severe. Many people do find the medicines very effective and significantly improve their quality of life. But I have chosen not to take any prescribed medications for as long as I can still manage without them. I cope by taking over the counter medicines to relieve my symptoms. I also take vitamin D supplements every day to keep my levels up.

While writing an article on pain management, I discovered that at any one time around one million people in the UK are suffering from pain that could be significantly better treated. This doesn't just mean being given more effective medicines, but also receiving more information about coping strategies and complementary therapies. The National Pain Audit by the British Pain Society in January 2013 found that NHS pain clinics make a significant difference to people's lives, yet many patients don't have access to adequate services or they face long waiting lists.

I saw a fibro consultant eight years ago. He commented that with my job and my two boys, I am doing incredibly well. I wasn't quite sure what he meant by this, until I realised that many of his patients are housebound or in too much pain to work. He told me to come back to him if I get to the stage when I feel I can no longer cope. But all he offered me was strong medication, rather than practical measures and advice. Needless to say, I never went back.

A few years ago, I took part in Cancer Research UK's Race for Life. Reading the stories of some of the women walking and running that day, and seeing the

names of family members and friends written on their backs, made me realise that life really is too short to let it pass by. There are a lot of people with far worse conditions than me, some life-threatening, some progressive, some a mixture of the two. Since then I’ve lost close friends and relatives to cancer and other illnesses too.

According to deaf and blind American writer Helen Keller, writing in 1957, 'Life is either a daring adventure or nothing.'

Well I choose the daring adventure. I have had fibromyalgia and chronic pain for almost as long as I can remember. But it shouldn't define me and it shouldn't control me.

The key to fibro management, and any chronic pain condition, is pacing yourself, which means not overdoing it or pushing yourself beyond your limits. But doing enough to keep going.

I am fortunate enough to work from home. I have several deadlines each month, but can plan my own hours. I get more work done on some days than on others, but it all gets done in the end and between flare ups I can do extra work in the evenings if I need to. I’m also reading/reviewing books and writing fiction – this tends to be late in the evenings and I often don’t sleep well.

I admit that sometimes I shout at my boys a bit too much when I need to get dinner ready or chauffeur them around, because all I really want to do is rest. But I know I can't, because I have too much to do. And I won't, out of principle. Admittedly though, I probably don't rest enough.

So if you see me and think I’m a bit quiet or aloof, or I seem a bit tired or anxious, it may be because I feel pain somewhere, my head is spinning or I feel a bit run down.

While researching this, I found the following quote. 'Life's challenges are not supposed to paralyse you; they're supposed to help you discover who you are." This was written by Bernice Johnson Reagon, an American singer-songwriter and human rights activist.

So who am I? I am a health journalist and a mother of two. I love reading and reviewing. I'm also writing crime fiction in the hope that one day I'll achieve my dream of being a published novelist. And oh, yes, I also happen to have fibromyalgia.

Now, going back to Arthritis Care's question four years’ ago - what was my 'something'? What was the first step that got me started in trying to manage my symptoms? My answer is that I have finally learnt to rule my fibromyalgia, rather than let chronic pain rule me.