LILI

An ME Carer’s View

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 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 pain since the illness began.

Her dreams have 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 a plate of solid food, emailing her friends, cuddling her nephew, having a conversation, going to the toilet rather than using a slipper-pan, and having a hug.

When I hear people moaning about having to stand in a queue, I think 'my daughter would love to do that' (not the moaning bit)! To be able to get up, have a shower, get dressed, walk, travel, shop, interact with the environment, have a conversation, and stand in a queue 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 so her food is liquid or puréed.

She cannot tolerate touch as 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...

I do my best to protect her from noise, light, odour, vibration, movement etc within the house to minimise the damage to her health.

I pick up the pieces after a visitor has long gone, desperately trying to create a place of healing safety for recovery to occur and to reduce her recovery time. 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.

The doctor was very keen for Lili to do GET.

Lili declined stating her reasons.

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 3 years', 'denied hospital appointments'.

The film, Whatever happened to Baby Jane?' springs to mind doesn't it!

The case is still ongoing. Lili and I were hurled out of our safe world into the jaws of ignorance and betrayal.

The bond of trust between patient and doctor had been shattered. It was obvious that the accusing doctor had no basic understanding of M.E. (let alone very severe M.E.).

No understanding of light sensitivity and the fact that this group of patients are unable to get out of bed and so they certainly cannot travel to hospital appointments.

The extent of this ignorance in a doctor is just frightening.

The fact they they have not kept up their medical knowledge is cause for grave concern. The carer of an M.E. loved one is like no other carer.

Not only is it imperative to learn about myalgic encephalomyelitis in order to give the specialist care required for M.E. (to avoid causing them further harm), it is also necessary to become their protector.

This serious illness is very misunderstood, even by doctors. Society as a whole has a very misguided view of M.E. and so the carer has to do all they can to keep this harmful ignorant tribal thinking from entering the world of the M.E. sufferer. They need to protect their healing space from influences, opinions and 'treatment' that will cause disease progression and maybe even death.

But who protects the carer?

In some ways the carer is as vulnerable as their loved one.

If a doctor does not respect a patient's choice of treatment, they can send in the heavy mob – social services.

It's not just children with M.E. that this happens to but adults too.

Adults, like Sophia Mirza, who are completely of sound mind are threatened or taken away from the safety of their home and family.

Another way to force the seriously ill person to tow-the-line is to go after their carer.

A doctor can say anything they want. They are believed because of their social standing.

People with M.E. don't seem to have the right to choose their treatment like other seriously ill people do.

This can be a lonely and difficult journey for the M.E. person and their carer to travel. Together they travel, often feeling alone, often feeling vulnerable, feeling ignored and misunderstood, feeling isolated from a world they once knew. But this world no longer recognises them, no longer understands their plight, their sorrows, their torment, their daily struggle.

They are outcasts.

My hopes and prayers are that things will change for the better for the M.E. community and their carers. New M.E. biomedical centres with specialist training for healthcare workers would be a good start.

I wholeheartedly support Invest in ME and their campaign to create a centre of excellence which is much needed not only for those with myalgic encephalomyelitis, but for society as a whole [click here].

Doctors and healthcare workers need to be re-educated, and the media and general public need correct and truthful information. People need to know... because M.E. isn't fussy who it attacks next.