My name is Helen Butcher I am 42 years old, have 3 lovely children and have been happily married to Mike for over 22 years. I look perfectly healthy, if somewhat tired and bedraggled on occasion – but then don't we all have our 'off' days. I enjoy walking our dog, Pippin, love gardening, but my main hobby is photography – all quite normal for the outsider looking in.

“What is Fibromyalgia?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.   

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.  Fibromyalgia Syndrome (fibromyalgia for short) is a common illness. In fact, it is as common as rheumatoid arthritis and can even be more painful. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment.  

If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain.”

That is a brief 'text book' description of Fibromyalgia for those of you who haven't heard of it – but it all sounds so casual and easy – living with it is something else entirely. It doesn't just affect you personally – ok you are the one who is in pain and so tired you can't keep your eyes open even though its only teatime and you haven't done anything all day – BUT your family have to manage their lives around you, helping with chores, preventing dangerous accidents, supporting and caring for you and have to put up with your terrible mood swings, depression and short temper when the pain is just a varying constant nagging that just wont go away no matter how much medication you swallow or how little you actually do.

My poor kids have to do all the housework – I can't even sweep the kitchen floor without it causing pain and discomfort. My husband has to do the shopping as I can't push the trolley or reach down  or lift the items we want. In fact, between them Mike, David, James & Louise really keep the household running with me acting as manager. To take my kids shopping for their school uniform I had to plan in advance – not to do anything for the few days before so my fitness level was as high as possible, ensure I took my full medication and painkillers on the day and plan which shops we were going to (I used the internet to check which shops actually had the clothes my kids wanted to buy) to keep the expedition as organised and short as possible. On getting home from work my husband then had to prepare the evening meal while I just collapsed in my special chair with my heat pad on my back and tried to relax and not fall asleep and that was after 2 hours carefully planned shopping with a ½ hour lunch break!

You see part of the problem is that I continually tense my body ready in case anyone/thing touches me because something as simple as a small bump sends shock waves of pain through my whole body which then takes several minutes to recover from. I am very clumsy so I can easily trip over nothing and if I am not vigilant and watching closely where I am going I may just not see that person standing in front of me and walk into them and this jars my body with yet more pain. This constant pain, watching and tensing is very tiring which just adds to my fatigue problems.

Then you add the 'fibro fog' and no this isn't a scary movie although I am sure my kids do get worried by me a lot of the time – I just can't seem to remember their names or forget what I am saying in the middle of a sentence. I am regularly burning food – I just forget I was in the middle of cooking! If things aren't right in front of me I just forget them – I have to set alarms to remember doctor's appointments, I have a medication box so I can see if I have taken my meds yet or not, I write lists of  lists to try not to forget things but still I burn the tea and miss appointments!

There are many other ways that Fibromyalgia affects your every day life to the point you really find yourself doing very little just to try and avoid a flare up of symptoms. It really is a life-changing condition. Life -changing for you and your family.

However, Fibromyalgia is difficult to diagnose and this isn't helped by a general lack of awareness – not just by the public but within the medical industry too. I had been suffering with Fibromyalgia for many, many years with no diagnoses and just constant visits to various doctors and consultants to be told ' it was all in my head', the problems I did have (scoliosis of my lower spine) could not be causing all the pain and symptoms I was describing – they were psychosomatic. After 25 years I began to believe them. Luckily, I have moments of lucidity where I am strong and positive and stand up ready to fight and when I moved to my current doctors I explained that I was fed up with not knowing what was wrong with me, that I was sure it wasn't me making myself ill and PLEASE could he arrange for me to be seen by someone who could help me. I was crying my eyes out, a wreck and must have appeared as desperate as I was. He had just diagnosed me with osteoarthritis in my neck and was willing to help and so began many trips to many specialists where I was eventually diagnosed with Scoliosis, Osteoarthritis, Hypermobility and Fibromyalgia – I am by all means not unique in having a list of problems being topped of with the Fibro – this is extremely common.

I am lucky my family are hugely supportive and I have been able to adjust my life around me and to try and control my illnesses rather than letting the illnesses control my life. My doctors are good too and work hard to try and get my medication balanced and working effectively. My yoga teacher is excellent and I thoroughly recommend yoga as a way of relaxing and also as a means to release muscle tension. Going online I discovered lost of useful information about Fibromyalgia and by chatting to other sufferers on forums I began to understand and learn about my condition and how to control it and how to live with it. So now I am managing my life, with medical support from my GP, exercise with my yoga teacher, massive mental and physical support and help from my husband and children and me trying to be positive and keep on living life – after all we only get one chance so we have to get as much from it as we can.

This neatly leads on to my involvement in the One and Other project ….....

I put my name forward with no real thoughts of actually getting a spot – I just loved the idea and possibility that I could, maybe be a part of something that I could actually do that was quite unique - so was completely amazed when I received the email offering me the 5-6pm slot on 19th August. In fact, I did originally think the email was fake and a scam. Having been able to log onto the One and Other website and add my profile I accepted the email was real and I really did have a spot on the 4th Plinth!!

My idea for 'A Statue's Eye View', ie. The statue taking photographs of the crowd, rather than the usual crowd taking photographs of the statue came almost instantly. I then had the exciting thought of trying to find someone willing to help me and provide the equipment to take a 360 panoramic image – that really would be a Statue's Eye View. Through an online forum specialising in 360 images I made contact with Tom Mills of vrwebdesign.co.uk and my idea became a reality. My sister-in-law then suggested I try and combine my photography idea with fundraising and I originally thought I would choose a sight-based charity to link in with the Statue's Eye View theme. My husband then put forward the idea that I choose a more personal charity, one that had meaning for me and so the idea of raising awareness of Fibromyalgia and supporting  fibromyalgia-associationuk.org came about. I have set up a page; justgiving.com/fibro-on-the-plinth for people to make donations as easily and securely as possible.

My cousin, Jenny Talbot is helping me put together a website and no doubt Tom Mills will have some input too. My aim is to have a blog on the site running up to and after the event so I can pass on my thoughts and feelings, there will be links to Tom Mills website, Fibromyalgia Association UK, Just Giving and of course the 360 panorama image as well as the opportunity to buy copies of the panorama as well as other still images of the hour I will take whilst up on the plinth with all proceeds going to the Fibromyalgia Association UK charity.

Visit the website: astatueseyeview.info  pledge your support and make a donation.

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