We never gave up
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We never gave up

Sarah Graham shares her family’s experience of M.E. and what helped her young daughter recover from the illness.

In January 2017 we practically carried our teenage daughter into hospital, very poorly indeed and having missed months of education. She had become ill with M.E. when she was in primary school.

Throughout our M.E. discovery journey, we were placed many times in front of unhelpful, misinformed doctors and private professionals, who all added to the great stress we were under as a family with their opinions, contradictions and confusing advice. It’s hard not to look back with bitterness towards a health system that failed a young child.

However, the worst days are behind us. We now have the amazing support, kindness, understanding, compassion and dedication of the CFS department at The Royal United Hospital Bath. We shall be eternally grateful for how they work as a team, accepted our daughter and helped her life improve. Her health progress has been outstanding, and she is now attending school – mostly full time – and studying for her GCSEs.

In school, it took years to gain plausible respect for her symptoms. Thankfully, one particular member of the school’s pastoral team is outstanding in her understanding and encouragement (every school should have someone like her!), although we feel she gets frustrated herself sometimes when awareness doesn’t filter down to busy subject teachers. We often have to repeat ourselves and remind certain staff not to pressurise homework deadlines, that all will be completed with extensions that enable her day to remain manageable without a crash.

Rebuilding

Throughout our journey with M.E., it is fair to say we lost friends and also family connections through their lack of understanding of our daughter’s condition. She was told to pull her socks up, push herself harder, stop attention seeking. She was 11 years old and should have been enjoying a carefree life; she wanted nothing more than to pull up her school socks and feel normal and enjoy herself.

We are self-employed, and the disruption caused by our misunderstanding of the illness caused our business to suffer, as well as our marriage. However, all is being rebuilt.

We still have to monitor her physical and emotional activities, and there are weeks when we get this wrong, times when we’re blasé about checking her activity diary, but crashes are recovered from quicker. There is still frustration for her over a crash, but our daughter is a determined, strong-minded character. It’s that character that we feel has helped her climb the mountain to recovery, understand her body, and respect her mind.

She’s embraced her rehabilitation, started yoga, taken responsibility for her ongoing recovery and is very grateful for the respect and understanding shown towards her by the team at Bath. Last year, she was even able to complete her Bronze Duke of Edinburgh award, with the training starting with just a manageable five-minute daily walk!

These days, she glows: she has shiny hair, beautiful skin, and the dark eye circles and brain fog of M.E. are gone, unless a crash is imminent. It’s easy to see how some people can forget there is an underlying illness.

Road to recovery

For us, structure and routine have been critical in establishing and continuing a better state of health for our daughter, acknowledging that we sometimes have to adjust plans to suit her needs. We celebrate little successes. Pacing, eating well, practising yoga and surrounding herself with nature are top of her to-do list, all of which helps maintain her health. It’s a small price to pay for the life she is living today – and we have to believe it’s possible that this will lead on to an even better, carefree, normal life for her in the future.

M.E. tests everyone affected by it. Our daughter at 15 has learnt life skills, resilience, patience, determination, forward planning and positive body awareness.And, as well as her vast physical improvement, she is stronger in character than ever before.

Recovering from M.E. appears to be a long-term project, not an overnight sensation. It involves medical, educational, and family support and understanding. We wish those wise words had been whispered to us from the onset. I hope my account of her journey will reach other families and give them hope for recovery.

Sarah’s top tips

“While M.E. affects everyone in different ways, I wanted to share the tips that have worked for us personally, in the hope that they may help others too.”

Sarah says:

  • The traffic light system works for us; we trust it and adhere it to. We use down time to re-watch old films.
  • We maintained good communication with the school. Find that one member of the team that understands, or concentrate on helping them understand.
  • We accepted that we had to repeat ourselves often. We regularly needed to re-educate family, friends and the school about our child’s activity limitations, and remind them that sometimes we aren’t able to attend social gatherings. We tried to accept that it’s not their fault they don’t fully understand.
  • We ensured our daughter ate well and often and above all, that she maintained fluids by drinking water.
  • We got our daughter outside as much as she was able. Being surrounded by nature was great for her wellbeing.
  • We limited screen time. Teenage life today is challenging; keeping up with social media and staying up late checking messages can impact on recovery. Finding ways around this, such as setting limits to screen time, benefitted her long-term recovery.
  • We encouraged our daughter to be kind to herself, keeping a diary, including the positive days, which can be looked back on to see how much progress she has made.
  • Being kind to each other was key for us. Living through M.E. can create tension within the family.
  • We learnt to celebrate the successes – however small.
  • Seeing a day of resting during a crash not as a failure, but as a day of recharging, was helpful.

Our Children and Young People’s Service

Do you need information and/or support with education or access to appropriate healthcare? Action for M.E. offers a dedicated information and support service for young people, their parents/carers and professionals, overseen by our experienced Head of Children and Young People’s Service, Mary-Jane Willows. Call 0117 927 9551 from 10am to 4pm, Monday to Friday oremail us.

For parents and carers registered with us, we offer a dedicated online forum where you can exchange advice and support with other parents and carers of young people who have M.E. We also have a forum for children and young people, up to their 19th birthday. Here they can talk to other young people living with M.E. about their hobbies and interests, breaking the isolation so often experienced by members, in a supportive environment. Our friendly forum moderators all have M.E. themselves and will ensure a safe and fulfilling experience.

You can find further information about our Children and Young People’s Service here.