Nicola Baker
Age: 27
Location: Kidlington, Oxfordshire, England
Personal Website/blog: http://www.hopestrengthjoyandlove.co.uk
Positions in WAMCARE: UK merchandising, Holistic/Beauty Agony aunt for WAMCARE support
Conditions: Severe ME/CFS, Severe Fibromyalgia, IBS due to pain medication, Nausea and travel sickness, Inability to concentrate and cannot currently read a book
What I would be doing if well:
Location: Kidlington, Oxfordshire, England
Personal Website/blog: http://www.hopestrengthjoyandlove.co.uk
Positions in WAMCARE: UK merchandising, Holistic/Beauty Agony aunt for WAMCARE support
Conditions: Severe ME/CFS, Severe Fibromyalgia, IBS due to pain medication, Nausea and travel sickness, Inability to concentrate and cannot currently read a book
What I would be doing if well:
I
am a trained Beauty and Holistic therapist and worked on 3 cruise
liners in the Spa. I then dabbled in jobs as assistant pub manager,
Tesco team leader as I needed to have a job which payed enough for the
rent, before going on 3 more ships working in the shops onboard. I got
disembarked from my last ship as I was exhausted because I
wasn’t sleeping properly (I have never experienced a
refreshing sleep in my whole life) and my anti depressants were causing
me to hallucinate and I was having regular migraines, 8 months after
this I was diagnosed with ME after catching the Parvo Virus in which I
have had the symptoms for over 11 years. I am not really sure where I
would be as I was a workaholic and got bored of jobs as soon as I got
used to them. In one year I had a full time night job and a part-full
time day job at the same time and got around 4 hours between the two.
Interests
I have focused
on since becoming ill:
I am living with my
parents and gradually my condition has
deteriorated
whilst trying to gain a proper diagnosis for my health. Once someone
mentioned ME/CFS, I went online and read the symptom list and cried as
finally I realised that the fatigue, aches and pains and constant
illness I have felt for years was not laziness and generally bad health
as I had thought, but I was actually an illness. Not long after that
did I begin to realise that it was a difficult condition to treat and I
would probably have to learn to live with it.
I am housebound during the week and only go out shopping at the weekend, I have to use my walking stick and rest a lot but I love clothes and shoes and am determined to find a fashion bargain despite spending the whole week in PJs. In my head I am Carrie Bradshaw from sex and the city but in reality I am a size 16 girl who loves Primark and charity shops and dreams of being beautiful and full of personality. I guess when you can barely walk and all your friends live far away most of your life is spent in your imagination and on your laptop.
I originally got involved with the ME/CFS Awareness by speaking to Laura Dunks on Foggy Friends (www.foggyfriends.org I am snowdrop23jane) She was telling us about the campaign and someone asked about the possibility of buying a blue Ribbon to wear. I then decided to make them and from then on have become more actively involved in this wonderfully exciting and fulfilling new campaign.
I am very creative but in the last few years work meant I had no time, so now I have re-discovered it by making cards, and completing latch hook kits. My aunt gave me a vintage singer featherweight sewing machine and I have been making some clothing using free patterns on the web and buying fabric from charity shops and ebay. I have had to give it up as I have been gradually becoming more ill but hopefully will be stitching away again soon.
Visions and goals for WAMCARE:
Despite their being a number of charities and organizations out there for CFS/ME it is still not very well known, people have heard of it and often know or have heard of someone with it, but could not tell you exactly what it is. This illness is bad enough to cope with without those around you not understanding and thinking that you are just “tired”. I want everyone to see the Blue Ribbon worn and realise that it is for ME/CFS and know enough to make our lives easier, just as the pink ribbon is known for breast cancer.
As soon as someone has a diagnosis I want them to know to turn to us for advice and knowledge and we will see the Blue ribbon worn around the world on ME/CFS awareness day, and our voices will be heard by those around us.
NO MORE YUPPIE FLU.
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