A mother’s diary of hope

DEVASTATED by her daughter’s illness and terrified about the future, Rachael’s mother Karen kept a diary to document their ordeal. Here, with a brutal honesty that every parent will recognise, she reveals the highs and lows of Rachael’s recovery...

October 2014

SAT 25: Rach went out. SUN 26: Rach hung over. Tingly hands and feet. A lot of pain in legs. Unable to sit up or eat Sunday dinner. Then just dozed on sofa.

MON 27: Rach called me at work saying she couldn’t walk – no sympathy. She called 111. Taken to hospital though. Diagnosed with ‘GBS’. WED 29: Rach very weak, but still able to use phone. THURS 30: Taken to intensive care as a precaution.

FRI 31: Rach weak. Frightened.

November

SAT 1: Unable to use arms, breathing shallow. V distressing.

SUN 2: Seizure. Rach stopped breathing. Sedated and later had MRI. I’m in shock. I’ve never seen or felt anything like this. I feel numb and terrified. My body feels empty but full of energy… I feel scared and want to get away, but I shouldn’t feel like this. I’m running away when Rachael needs me most… She goes grey. Her eyes are partially open. Her heart rate begins to drop quickly along with her oxygenation stats. I’m terrified. I’m not crying but I feel like the world is ending... MON 3: Rach communicating through a letter board now. FRI 7: Tracheotomy.

MON 10: Rachael depressed... stated she just wants to die.

TUES 11: Rach’s 20th birthday.

Lots of pain. FRI 14: Rachael’s in agony all day – screaming inside for 1.5 hours, but no voice so couldn’t be heard. I read her to sleep. She wiggled her fingers a little.

MON 17: Rach can’t tell where her limbs are and can’t see them. Anxious, upset, and frustrated and in pain. But neurologist says she’s clinically improving – there’s more finger movement.

TUES 18: Docs say Rach won’t be returning to uni after Xmas as recovery linked to severity of syndrome and this is v severe. 3-6 months until she goes home.

FRI 21: Physio showed me how to massage hands – helps show the brain they’re still there. SUN 23: Nurse painted Rachael’s nails. Heart rate lower today – 107 to 120.

TUES 25: Called in again, Rach vv v upset. Saying she can’t cope, wants to die, ‘Can’t do it any more’. Refusing oral meds. Referred to psychiatrist. She asked me to stay the night, to sleep in her bed and to take her home.

December

SAT 6: Phlegm in throat causing heaving and nausea. Refused physio. TUES 9: Really good day – positive mind-set. 2 x 3 hour spontaneous breathing sessions.

FRI 12: Rach sat on edge of bed, able to hold head up and, with support, upper body. Starting to chew, ate Wotsits and chocolate

buttons. MON 15: Rach told psychiatrist how she will have changed as an individual and is looking forward to meeting that person. MON 22: Tracheotomy

taken out! XMAS DAY: Rach happy & cheerful. Wrote her name on a piece of paper too.

January 2015

SAT 3: Rach went for a walk through hospital to south entrance and back. SUN 18:

Stood up unaided for first time.

March

WED 11: Rach home at last!