• Nelly - My Story

    I have always been an active person. I love the countryside and the sea. As a child I was labelled as 'hyperactive' and was always up to something be it building go carts or climbing trees. I was a proper 'Tom-boy'. My family life as a child was idyllic. I had loving parents and a sister who I was close to. We always had something nice to look forward to.

    In the summer of 1976, you may remember it, we had a drought. My life was turned upside down when my caring beautiful mum died suddenly when I was 9 years old. I still kept smiling though and stayed strong for my dad who was such a lovely man. He was devastated - widowed at 34 and with two young daughters. Until recently, I have blocked out this time in my life - skipped over it and just lived even faster than before. I always kept so busy that I never stopped to sit or rest. As I got older I enjoyed long walks in the countryside, camping, taking my little boat out to sea and fishing for Mackerel. Life was happy but always in my heart I longed for my mum.

    I married at 23 and had three children. My choice of husband was not a good one. I didn't know anyone could be so cruel as I had never experienced cruelty before. I don't want to dwell on this part of my life except to say that I tried to make him change. I tried to love him enough and teach him how to be a loving husband and father and at the same time, to stop hitting, kicking, spitting and calling me names. He didn't change and so I divorced him when my youngest was five years old.

    I have always worked hard, having 3 jobs at once at one time. I like to make plans, to succeed and make things happen. When I decided to further my caring career which started when I was 18 it seemed the natural step to become a qualified social worker. I did just that and took a job during school hours so that I could always take my children to school and collect them and be there to cook tea each night. I enjoyed being a mum. I planned lots of activities for the children so that they always had something to look forward to. Simple things like baking a cake, going for a bike ride or swimming with me or even more adventurous things like camping holidays or trips to Euro Disney. I always worked hard and helping people suits my character. I loved to think of ways of building up peoples confidence and making their lives that little bit better. I have met all sorts of people through my work and most of them have been wonderful.

    At work one Monday morning in August 2009, I remember saying to my manager that my legs are really aching and that I must have over done the walking the previous weekend. As the weeks went on, I continued to feel unwell and the GP told me I had a virus. As usual I plodded on, kept smiling and working. Soon, my lunchtime gym sessions stopped as I just couldn't manage them. I knew then something had changed in me as I could no longer walk along the beach near my home, hold long conversations and in meetings I would forget my words on cases I knew so well. This led to panic attacks, and I felt like I was no longer in control and wondered how was I supposed to continue at work, look after my family and do all the school/college runs when my arms and legs felt like they were weighted down with lead.

    I was admitted to hospital twice with chest pains on two occasions and tested for heart problems, DVT and had an MRI scan. The consultant said I was fine, healthy and to enjoy myself more! How on earth was I supposed to do that I wondered, when each day I was getting more and more tired. Believe me I tried to keep going and tried to push through the overwhelming tiredness.

    In April 2010, I couldn't get out of bed. Light hurt my eyes, noise was painful and I felt bruised and exhausted. The GP took bloods and signed me off work. I was diagnosed with ME and Fibromyalgia and referred to the local ME clinic. I spent three months laying flat for most of the day, too weak to do anything. I can't really remember last summer - I know it happened but I couldn't leave the house. The past year has been a tough one. I ponder endlessly about my future asking the same old questions - will I be able to work again and how will I manage with no wage coming in? On a clear day, I can see the answer that evades me most of the time. The simple answer is that I really need to learn to take one day at a time. It may sound simple but it is so hard to change a lifetime of planning and doing in to one of simply being. Since April 2010, I have spent most of my time laying down. For the first time in my life, my thought have turned to my mum. Bless her. I have wondered if the shock of her death and the 1970's approach of not allowing children at funerals and so on has had an impact on me. I know I was really ill with Scarlet Fever shortly after her passing and I can still recall those terrifying hallucinations. Did this and then the Shingles soon after make me more susceptible to ME?

    Of course like all of us there is much more to my story, way too much to type. Intertwined with all of this, there are a lot more people and events, bereavements and other roles I have played in my life. Anything from a carer, a counsellor and confidante - as I said I like to help others.

    I do wonder how my life will be now I have this condition and on down days I reflect and wonder did I cause it? Should I have been helped during times of emotional distress, and not kept smiling and pushing onwards? Who knows? All I know is that I am very lucky to have my 3 lively kids(almost all grown up now), a supportive sister and the best friends anyone could wish for.

    Thanks for reading

    Nelly x