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Susan H-J's story

16th August 2020

On 9 October 2019, 68-year-old Susan felt absolutely fine. One day later she was rushed into hospital after a friend raised the alarm. Susan can recall very little of the day she began her battle with meningitis

Susan H-J's story

In hospital, doctors told her sister Libby that Susan was unlikely to survive the night.

Against the odds, Susan pulled through, but her meningitis experience has left her with a number of after-effects, including the partial loss of two fingers. She tells us her incredible story.

“Let me introduce myself – my name is Susan Harrington-James and I am alive to tell you my story. My personal life was in shreds. I felt that I had lost everything that was close and dear to my heart but I didn’t know that I was about to face the hardest battle of my life - and I assure you that during my life, I have faced many.

“The battle was to fight meningitis and septicaemia, a battle I nearly lost.

“I remember the day before I contracted the illness; I went to the hairdressers, walked Henry, my dog, and felt fine. What I don’t recall is the following morning when a friend came to see me. He realised that I wasn’t good and phoned my sister saying that he thought she should come over, which she did straight away.

“Libby, my sister, phoned the GP and told him my symptoms and his response was to get me into hospital straight away. I do remember, while in the ambulance, seeing marks appearing on my hands. I tried to get them off but they kept coming back. The journey in the ambulance is the last thing I remember.

“Apparently, I was told to lie on a bed in a corridor in A&E for a long time. A doctor finally arrived and she said “Intensive Care, NOW”.

“I was connected to so many machines. Hours later, my sister, sitting by my bedside, was told by the doctor that I wouldn’t make it through the night and see the morning. But she was wrong. She didn’t know me, but my sister did, and she knew that I would make it. I would fight and come through it.

Libby was ever-present

“Libby slept in a chair next to my bed for the first few nights. She is very precious to me.

“After a week in Intensive Care, I spent the next two months on my road to recovery in hospital. It was a hard journey, but I am alive to talk about it. I won the battle for myself, with my wonderful sister and the care, diligence and devotion of the doctors, nurses and carers – all giving me everything they could, but above all giving me hope and belief in the future. Deep down in my heart I knew God was there. He has work for me to do. He has spared me to help others that do not have strength through illness and for people who are nearing the end.

“I was moved from ward to ward. I had many visitors, Libby came daily. Also who came daily was a member of the hospital Chaplaincy Team and on Sundays they gave me Communion.

There were many hours of darkness, blankness. I felt that my brain had decided to detach itself from the real world, the reality of my pain, my fear, my panic for the future. I didn’t want to remember these feelings, my recovery wouldn’t allow it. The blackness of those hours matched the blackness of my fingers and toes. I was scared that it would spread.

“A specialist from the Queen Elizabeth Hospital in Birmingham came to see me. His original thought was that he was going to amputate the dead nerve endings of my fingers but he decided to let nature take its course. Little did I know that it would take six months of incredible pain for half of two fingers to fall off, with the help of a small operation to smooth the remaining finger tips.

“My toes are still with me but continue to give me severe pain. Another consultant, whom I am under, wants nature to take its course and let the tips of several toes fall off naturally. The pain has just been transferred from the fingers to the toes. I have been on very strong painkillers since October 2019. Most of the remaining blackness has vanished.

Ongoing after-effects

“Unfortunately, my illness has also caused damage to two glands and has affected my blood in some way. Nothing is serious and all can be treated.

“After two months of being in the Worcestershire Royal Hospital I was transferred to the Worcester City Inpatient Unit for rehabilitation. I recall falling in the ambulance – my legs were so weak. I couldn’t stand, I was frightened and I wanted to return to my bed in the hospital, which I knew so well. I felt safe and secure there. But I arrived at the Inpatient Unit, sat in a wheelchair and was taken to my room. I then was greeted by Suzie Pascall, who was in charge of this particular unit. She is a natural at her job, highly liked and respected. I admired her greatly. She calmed me down and reassured me that I would be looked after.

“For the next two months, the team, under Suzie, were brilliant. They brought me back to life again. My deepest thanks go out to them all. They will remain in my heart forever. They taught me how to walk and to wash and dress myself, although I was determined to do these ablutions myself and I was soon walking with a frame on my own and then a walking stick.

Facing the world (and Henry)

“Then it was time for me to face the world, leaving with tears falling down my face I was taken home to my cottage in Bewdley. I walked into my home and stood alone. Four months is a long time to be away, the cottage was so very quiet and empty. I live alone. Then Henry, my beloved dog, was brought back to me. We stood in silence just looking at each other. It took a number of days to bond again. Then my treasured sister Libby came, loaded with food for myself and Henry.

“Naturally, I am still unable to walk Henry; he is very strong. When I became ill, Libby found The Cinnamon Trust, a charity that offers dog walking as a free service for people that have a dog and for any reason are unable to walk them. I have two wonderful people, Claire and Emma, who love Henry and Henry loves them.

“I knew what I had to face, I knew my goal. I also knew that God was at my side, encouraging me to walk my path. At this point I remembered those beautiful words of the ‘Footprints in the Sand’. I hope that you know them. But also at my side throughout my life but especially now helping me to find love and peace and supporting me, is my beloved sister. She is a beautiful person whom I love very much. I have given her so much distress, anguish and heartache throughout our lives. I treasure what she has done for me. I pray each day to keep her safe. She is all I have now, my parents having long gone. My darling brother died with cancer, he was only in his 50s. I am divorced and my crazy lifestyle led me not to have any children, living in South Africa, Kenya, France and the States.

“Looking back on my international life, I feel that this illness has changed me, I hope for the better. My humbleness and sincere thanks are brimming out of my body. Sometimes I feel it is overflowing with the richness of life. My losses and my gains are deeply rooted within me. Each fibre is bursting like a flower in the spring. One day that flower will burst forward in its glory of the summer.

“Physically, I have come through lightly, although I still have on-going issues. This chapter of my life, I have learnt to accept. I want to close the door on what has happened and I am learning that I have to throw the keys away for ever.

“But I am taking one day at a time as I suddenly found myself back in hospital again. Strange marks were appearing on my legs and they thought it could be the meningitis returning. After five days of tests and more tests it was not meningitis – the research goes on. They think it might be vascular bruising. My balance has also been looked at as I do fall sometimes.

“I am starting a new life. I try, when I am alone, not to think of the mistakes I have made over the years. Libby is truly amazing in what she has done for me. I don’t think anyone in the world could match her acts of love, gentleness, kindness and just being that rock. My new life, I hope, will be fulfilled by helping others who have not pulled through the way I have. Strength, love, support, friendship, are all needed. My recovery is my goal. One day, I will reach it.

“I was taken into hospital on 10 October 2019, a date that is embedded within me. While I was in hospital it was my birthday. The nurses and carers came in with a cake, candles and singing Happy Birthday. I had a smile on my face - a smile I hope I can keep as I move forward with my recovery.

Covid lockdown gave me time

“Although my own lockdown has been since October, I spent the official national lockdown with Libby, looking at the bright side of these last few months - how they have given me time to improve my balance and strength. I now can shower and wash my hair - it’s wonderful. Medication seems to control the pain in my toes and I have also had time to liaise with the doctors who are carefully monitoring my progress.

“Thank you for taking the time to hear my story. I hope that your stories are as positive as mine. Just remember your goal. Each day I move a little closer to mine which is simple – health, happiness, love and hope.

“To finish I should like to personally thank all the people that have supported and loved me throughout.

“Meningitis Now – thank you for phoning Libby and for keeping her informed from the start. She knew that you were always there. And I thank you for what you have done for me since I have been home – your attention and helpfulness have been beautifully received. I will not forget.

"I also give my thanks to Age UK and to The Cinnamon Trust, who have done wonders for me knowing that Henry was being looked after, all the staff in the hospital and the Inpatient Unit, also the carers, physiotherapists, the shoppers, and the District Nurses who still come to dress my toes. I give my thanks to all in the NHS and to my friends both old and the new ones I have made, as well as some very beautiful patients who gave me strength and humility. But above all I give my thanks to my devoted sister. She will never know how much I love her and thank her.

“I will now do whatever I can to help Meningitis Now. It is a charity worth fighting for – and I will.

“Behind all these wonderful people is the hand of God - which fills me with hope.”

Hear Susan tell her story

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