# Worcester News Article on Nicola Winnall - A Day In The Life Of...



## M&M (Jan 20, 2002)

This is a beautifully written article. It's accurate, stirring, and so touching. Enjoy it, and share the link with family and friends! (It was posted to Co-Cure):*****(Saturday's Worcester News - M.E on front page - and page two)This uses Nicola Winnall's six-page article "A Day in the Life of .. ...Nicola Winnall" written for the International M.E. Awareness Week May 2005."..Sports-mad Nicola Winnall was forced to give up her place at ChesterUniversity, where she planned to train as a counsellor, because of thedebilitating effects of ME.And yesterday Alastair Miller - Worcestershire's only specialist with aninterest in ME - left his post for a new role.Nicola, aged 21 and from Bewdley, has spent two months compiling A Day InThe Life Of Nicola Winnall to highlight the desperate need to replace him -for her sake and the estimated 2,000 other sufferers in the county.."http://www.thisisworcester.co.uk/worcester...s/WEN_NEWS_LATEST4.htmlNicola used to ski, cycle and canoe. Now she can barely get out of her bedI have severe ME which research suggests might be a virus that affects thebrain. As a result I am completely housebound and bedbound for 23-and-a-halfhours a day.I am in constant pain that saps my energy so that I can hardly feed myself,comb my hair, read or write a letter.I am unable to watch TV or telephone my friends, and my mind is so confusedthat I have difficulty understanding a conversation or making choices aboutmy life.I wake and I can hear the outside world but my eyes refuse to open and I'munable to move a finger. After 20 seconds or more the sleep paralysisreleases me and I'm relieved it's over.My eyes are stinging and painful, and everything I look at overloads mysenses and causes me much pain till I'm forced to close them again and stopthinking.I can't tell you how utterly dreadful I feel.My first thoughts of the day are that I wish I wasn't alive and how am Igoing to climb this huge mountain of a day.Once I'm conscious I don't have the urge to sleep again, in fact I'm nottired, I'm too exhausted to sleep properly.My fatigue isn't the same as exhaustion felt by a normal healthy person.Every little thing needs thinking over carefully and bigger things takeweeks of planning.For example, a shower needs days of rest beforehand and days to recoverafterwards and I can only get through these about twice a month.I've woken in time for lunch and rest in anticipation.Eating is a battle. I'm fighting with my appetite and a swallowing reflexthat is very weak and doesn't work properly.I fight to eat my soft eggy bread, my throat crying out saying it's hadenough, as well as my hands that have to carry it to my mouth.I hope to be given the opportunity to be able to have a feeding tube soon asthis will make my life much easier.I'll be able to get all the vitamins my body desperately needs and save someof my energy.Later, now needing the toilet, I'm able to shuffle from my bed, my weak andpainful limbs supporting me, to the bathroom 10 steps away.My body feels like lead, my legs like twigs. Everything feels so heavy, likeI'm a big sack of potatoes.After nearly fainting on the loo, hoping I won't run out of energy on theway back, I collapse back onto the bed, just missing the floor, waves ofnausea sweeping over me, and I have to retch.My daily nosebleed now starts and I have to deal with that.I use my mobile phone to text messages and I text mum to check the time fortea. Somehow I'll manage the words and I hope for the best that they makesense. It takes a lot out of me. I'll be able to manage 4 or 5 texts a dayif I have to, but that's it.Luckily this has become my form of communication, which is helpful, and Ihave a push button on my bed to signal for help if needed.I sit up again to lift my heavy laptop, tugging it towards me.With my body wanting to lie back down in the darkness and silence, I checkmy e-mails. I might add a bit to my website later.That keeps the world in touch with me and I'm glad it's one thing I'm ableto work on even though it's a struggle.I have my luxuries. These include either one song on my stereo, 15 minutesof television on a very good day, (although the movements and lights I canhardly bear), reading, or writing a letter, or using the computer.It's a hard illness to manage, pacing myself and learning to let my bodyrest so that I don't get worse is perhaps the hardest thing I've ever done.Not like climbing the mountains I used to do, or holding down a job.I used to enjoy all kind of sports and walking around my country gardenlooking for flowers and animals when I wasn't so poorly.I'm sad some people think I'm making it all up and I choose to remain in bedand in pain, and not to see my family, or to do anything like normal peoplewould.Then it's night time.I don't look forward to the vivid nightmares and wondering if my breathingis going to stop.But I'll wake up again tomorrow - I always have done - hoping one day I'llbe better again.Sports-mad Nicola Winnall was forced to give up her place at ChesterUniversity, where she planned to train as a counsellor, because of thedebilitating effects of ME.And yesterday Alastair Miller - Worcestershire's only specialist with aninterest in ME - left his post for a new role.Nicola, aged 21 and from Bewdley, has spent two months compiling A Day InThe Life Of Nicola Winnall to highlight the desperate need to replace him -for her sake and the estimated 2,000 other sufferers in the county.This is an extract.What exactly is myalgic encephalomyelitis?n ME (myalgic encephalomyelitis/ encephalopathy) is also known as ChronicFatigue Syndrome (CFS) and isalso often dismissed as `yuppie flu'n It is a chronic illness that affects 1 in 250 people.n Early diagnosis improves chances of recovery n Although there is nospecific test available to diagnose ME it can be diagnosed by identifyingthe symptom pattern typical of ME and ruling out other conditionsn The exact cause of ME is unknown. People with ME often have abnormalitiesin their immune and nervous systemsn Up to 25 per cent of people with ME are severely affected, either house orbedbound and unable to look after themselvesn There is no cure , although symptoms such as pain and sleep disturbancecan be treated to improve quality of life.n With time, most people can expect to see an improvement in their symptoms,although not everyone recovers topre-illness level.------------------------------


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