By Diane 

I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly. 

 It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis. 

To cut a long story short, it took a year to get a diagnosis during which time she literally dragged herself to doctors and hospital appointments to undergo tests and consultations (which were sometimes more like inquisitions from paid torturers).  Although Lili was severely affected and completely housebound from day one, she forced herself to go because she so desperately wanted to know what was wrong with her so that she could have treatment and get on with her life again.  However each visit and test pushed her body beyond its limits.  She was gradually deteriorating.  Every tiniest activity (physical, cognitive and sensory) from washing her hair to rubbish collection day, had devastating results.  Sometimes she could recover in a few days, other times it would take months, but often the cumulative effects of the noisy, smelly, bright, sunny, loud, vibrational, fast, chemical based world we live in were all too much and disease progression with permanent damage resulted.  Doctors always amaze me when they are puzzled by her severity and wonder why it's taking so long to 'pick up her bed and walk'.  

Lili collapsed after her last hospital visit.  She passed out with a seizure, her body violently shook, and paralysis spread throughout her body.  It was an extreme reaction to the overload of physical, cognitive and sensory attack on her body during that year, but this last journey to the hospital was the straw upon the last straw that broke her body down.  She never recovered.  My beautiful daughter is totally bedbound.  She has a diversity of symptoms that seem endless.  (Most of the very severely affected have between 60+ and 100+ symptoms).  The worst thing of all is the relentless, agonising pain.  Widespread pain in every muscle, joint, and organ possible.  She has not had one day free from headache since the illness began. 

 Her whole life now is lived from her bed.  Not her choice for she is a talented artist and photographer and she dreams of walking in summer meadows photographing the bees and butterflies dancing upon colourful flowers.   She dreams of completing her geology degree.  She dreams of paddling in the sea with her nephew.  She dreams of putting on a pretty dress with her hair all beautified.  Such simple dreams.  Her dream of having children has been snatched from her by this awful disease that others misunderstand by thinking it's just about feeling tired or attention-seeking.  The above are some of Lili's dreams but in reality, she would just love to be able to do some of the everyday things that others take for granted.  Lili longs for simple pleasures such as having a bath, cleaning her own teeth, reading a book, eating solid foods, cuddling her nephew, having a conversation, stroking her cat, looking out the window in daylight, going to the toilet rather than using a slipper-pan, and having a hug. When I hear people moaning about standing in a queue, I think 'my daughter would love to do that'.  To be able to get up, get dressed, walk, travel, shop, have a conversation, and stand are such blessings that people forget they have.  And to be able to do all this without unimaginable pain is a further blessing.

My amazing daughter has such a positive view of life.  I'm stunned that she's not depressed or angry.  Although she sometimes has her low days, her courage and inner strength are immeasurable. Not a day passes without seeing one of her magical smiles which sometimes just breaks my heart.  

Her days are spent in a darkened room and in as much silence as the outside environment will allow.  She is hypersensitive to light, noise, odour, vibration, touch, movement, chemicals, some foodstuffs, and medicinal drugs.  She can hear a vacuum cleaner five houses down the road, smell the fabric softener on people's clothes and feel the vibration of a humming fridge.  All these things can send her body into a crash at any time.  

She is unable to sit or stand due to being moribund with pain, orthostatic intolerance, paralysis, blackouts and much more and so her bed is her companion twenty-four hours a day.  She is unable to chew and has swallowing difficulties.  She can only wear light, soft stretchy pyjamas which have minimal contact with her skin.  Her skin is always 'on fire' like it's been grated with a cheese grater.  Her description. I have to cut her pyjama tops off (when she can tolerate a change of tops) because any movement causes her indescribable pain.  She has difficulty speaking sometimes and so asks me to be her voice.  She calls me her gatekeeper.  I do my best to protect her from well-meaning visitors and the noise, light, odour, vibration etc within the house to minimise the damage to her health.  However, I am limited to protecting her from the outside world.  Aircraft, motorbikes, fireworks, DIY, sunshine, heat, barking dogs, roadworks, lawnmowers, parties, environmental smells...the list is endless.

Another thing that I try to protect her from is people's attitudes towards her illness and therefore, towards her personally.  Sometimes these misunderstandings and judgemental opinions come knocking at your door. 

Last year we had to move house.  There was no choice.   Lili and I knew that it would be a huge cost to her health and in the back of our minds, we knew (but didn't verbalise), it could have taken her life too.  It didn't but it came very close.  With a move comes new doctors.  I registered us both at the local surgery straight away and booked a home visit.  I won't go into details but the GP was an aggressive rude man who insulted Lili to such a degree that I wanted to throw him out.  I remained polite but firm.  The next time I called the surgery I requested a different GP.  She came as if she had already prejudged us.  I asked for oxygen for Lili.  The doctor refused.  I asked for morphine.  Another refusal.  However, the doctor was very keen for Lili to do GET.  Not again, we thought! We had already spent three years re-educating Lili's previous GP who also suggested GET as did  the Consultant who diagnosed her.  Was there no getting away from this torturous damaging 'treatment'! 

Does the Hippocratic Oath to do no harm now state 'except for all those with myalgic encephalomyelitis?'  A couple of months later there was a knock at the door.  It was a social worker.  One of the doctors (who wished to remain anonymous) made an allegation of abuse/neglect.  I was in a state of shock and felt sick to my stomach.  To hear the words 'suspected of abusing your daughter' is something that will haunt me for the rest of my days.  The accusing doctor said that Lili was 'being kept in the dark', 'not allowed to speak', 'nursed in bed for 24hrs for 2 years', 'denied hospital appointments'.   The film, Whatever happened to Baby Jane?' springs to mind doesn't it!  The case is still ongoing.

To all those who care for their severe M.E. loved ones, my advise is find a supportive GP.  S/he is your biggest ally...or enemy.  Having their support is important because they will approve benefits and fight your corner.  They don't have to be clued up on severe M.E. as they can learn on the job so to speak.  They only need to have an open mind. 

 Next, read as much information as you can about M.E., especially severe and very severe M.E.  Read books and papers by Ramsay, Dowsett, Hyde, Hooper and so on.  Join true M.E. groups, such as 25% ME Group.  Learn about the latest biomedical research.  

Regularly visit real M.E. websites such as Stonebird, Hummingbird, Invest in ME, Dr Speedy's NICE blog, Tymes Trust, ME Action UK and so on to keep up-to-date.  Print out some of the information and keep it in a file so you have evidential papers at hand should you need them.  Read Greg Crowhurst's book, Care for Someone with Severe Myalgic Encephalomyelitis as this is packed with information which can help you protect your severe M.E. loved one and yourself from ignorant tribal thinking. 

 Knowledge is power.  You don't have to worry about being politically wordy.  Just speak from your heart.  Talk about what you know.  Your experience is knowledge.  Only you and your loved one knows the truth about the how myalgic encephalomyelitis affects your life.

Beautiful blessings to you all!

* My heartfelt thanks to Greg and Linda Crowhurst, Criona Wilson, and Christine and Tanya Harrison (BRAME) for your support, love and advice. 

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