Severe ME Day: Caring for someone with Severe M.E. by Sarah Boothby | 08 August 2019

August 9, 2019

Sarah is now working voluntarily with Devon NHS and County representatives to help improve medical knowledge, understanding and appropriate care for people with M.E. based largely on her experiences with her daughter Orla.

Guest Blog by Sarah Boothby.

My only child was born over the bank holiday in August 1994. As I gazed at her tiny features, I fell in love like I didn’t know was possible.

As the years went by I realised becoming a Mum was the best thing I had ever done. It gave me the type of responsibility work had lacked. Even when my marriage failed within five years of her birth, I loved being her Mum.

I’ll call her Orla because she wants to remain anonymous. 25 now, she lives like a recluse with Severe M.E., unable to leave the house except for necessary medical appointments and, on a good day, a five-minute walk in the fresh air.

“She was never ill. A performer, singer and dancer, she also loved to learn.”

Anonymity is a cover for the disappointment that is only overwhelmed by the relentless exhaustion of M.E. 

Who she was and who she is now are like strangers to each other. For me, her only ‘carer’, anonymity is just another miserable symptom of this merciless disease.

Unexpectedly a lone parent of an only child, I retrained in my late thirties to work with vulnerable families – in part at least so that if I needed to take time off my employers would be understanding.  But I never needed to take time off for Orla.

She was never ill. A performer, singer and dancer, she also loved to learn. She was deemed ‘gifted and talented’ at school, in the top 3% for verbal reasoning nationally, and a highly motivated A* scholar.

Odd things started happening at eleven. She would suddenly collapse without warning. She began every day feeling tired.

After seeing a couple of GPs who thought this was “normal for a girl of her age,” I asked for a referral to a Consultant. I worked with boys and girls her age in schools every day.  Like her teachers, I knew sudden collapse was far from normal.

The Paediatrician saw her for two years. He tested her heart; nothing wrong. He paid no attention to her saying she felt exhausted all the time. She gave up performing and hardly ever socialised, concentrating all her attention on schoolwork. 

I thought she should have more fun and imposed a ‘no study after 8pm’ rule. Not unkindly, her Consultant advised her to build up her stamina with regular physical exercise. He praised her for making herself run every day despite feeling dizzy and lightheaded as well as tired when she did. 

Feeling no improvement in her condition, Orla chose to interrupt these consultations to concentrate on her exams. Her Paediatrician invited her to return at any time, which she did since her symptoms persisted. He told her there was nothing physically wrong; it was all in her mind. 

“After seeing a couple of GPs who thought this was “normal for a girl of her age,” I asked for a referral to a Consultant.”

In his discharge letter he accurately described M.E. but failed to diagnose. Instead he referred Orla to a clinical psychologist. The psychologist rang me immediately to advise she was only employed one a day a week, had to prioritise children refusing life-saving treatment, and would never see Orla. So began our voyage into the sea of ignorance surrounding M.E.

I sat through every consultation with my daughter; moving us two counties to get a formal diagnosis.  I wanted to trust in the knowledge, skills and training of the medics working with my child. I could not have been more misguided. 

Looking back, I can see every piece of advice we were given was wrong. Nobody ever warned us that M.E. is progressive if patients do not rest. By the time we discovered this for ourselves, it was too late. 

Shortly before her 18th birthday, Orla had A* A-Levels and all the university offers she wanted but was capable of just 30 minutes of ‘normal activity’ in any 24 hours. She had got what she wanted through sheer willpower. Now she had to stop.

To begin with, I tried to carry on as normal. I looked for the positives. I believed the orthodoxy.  Orla’s prognosis was better because she was, just, still a child. We could hope she would recover. 

Maintaining a 30-minute baseline was difficult, sure, it meant a lot of extra work for me, but with time Orla would gradually increase exercise levels and improve. Others had. I would qualify as planned; Orla would take her time deciding which university to attend, becoming independent more slowly than expected.

“Like everyone else with M.E., Orla needs certain, uninterrupted, frequent and regular rest, warmth, and freshly prepared, nutritious meals that she can manage to eat.”

A highly disciplined scholar, Orla was able to follow the NICE guidance to the letter but never to extend her 30-minute baseline. In 2016, while I was away at a conference, she was admitted to A&E then discharged “to be followed up”. As anybody with M.E. will know, there is no medical follow up. Pretty soon, I came to realise that I was the follow up.

Orla’s confidence in the medical profession had not been good before. After this it collapsed completely. My highly rational, intelligent daughter became uncontrollably anxious – did she have a life-threatening treatable illness that was being missed because of M.E.? 

I interrupted my post-graduate studies and dedicated my attention to Orla. I used my university membership to access all the published research I could find. Orla used her savings to pay for private tests. I went through every bureaucratic portal looking for help.

Neither of us discovered anything helpful. Orla should have felt relieved but making the extra effort left her in greater, more constant pain. She could not stand. She could sit for meals. She could not chew.

On errands I would find myself weeping in the street, knowing my beloved child may never again be well enough to laugh with friends in a coffee shop.

Like everyone else with M.E., Orla needs certain, uninterrupted, frequent and regular rest, warmth, and freshly prepared, nutritious meals that she can manage to eat. She needs to know she has not been abandoned or blamed for a disease as if she had chosen it.

Being a Mum is still the best thing I have ever done but the level of responsibility imposed by caring for Severe M.E. is too much for anyone alone. Yet, like Orla, I can ask but I will not be helped. 

I cannot hope for a holiday, to entertain friends or family at home, or to accept regular employment without knowing Orla will pay for it. I know I am not alone. This is the common experience of everyone with Severe M.E.  It is insufferable.  Together we must change it.

The article above appeared previously in ME Essential – the quarterly member’s magazine from the ME Association.
Orla is not Sarah's daughter's real name.

The ME Association greatly appreciates every person with M.E. who comes forward to offer us their stories or to share their experiences. We are always on the look out for more especially from those able to send photos as well.

Talking about Real People with M.E. is arguably one of the best ways we have of raising awareness and it can help to bring us closer together as a community.

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Image credits: 123RF/ Konrad Bak/KirillRyzhov/ twinsterphoto.

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