Here Rachael Jade, from Sutton Coldfield in the West Midlands, tells us her story.
“On 1 April 2012, aged 41, I woke up feeling very unwell. Cruel April Fool’s Day joke! It started with vomiting around 6am. I’d had a bad chest infection so I thought it was the flu.
“As the day went on I felt worse and worse, struggling with bright light and pain in my legs. I had work the next day so went to bed to rest. Around 9pm my husband came upstairs with a cup of tea and I was delirious. He called the ambulance. My temperature was 41 degrees and my husband spotted rashes on my arms which didn’t go away when he did the glass test.
“I was rushed to Good Hope Hospital and put into an induced coma. One week later, I was woken up, still very ill, confused, dark patches on my skin, and still couldn’t move my legs. They got a plastics and burns consultant over from the Queen Elizabeth Hospital in Birmingham, and a week later I was moved over to the burns unit there. At some point I had been diagnosed with meningococcal septicaemia.
“My body had gone into organ failure and parts of my skin looked like I’d been eaten by zombies, chunks of flesh were missing and my feet had turned black. On 23 April 2012 the decision was made to amputate my feet, and surgery was ongoing every two or three days until July when they got all the infection out. More and more was taken off my legs every few days until it stopped just below my knees. There were many more complications such as needing an ileostomy and stoma bag.
“I was discharged from hospital at the end of July and went into a rehabilitation centre for a couple of months, before returning to hospital to have the ileostomy reversed. I then got the superbug C difficile while I was in hospital, so I had to stay there even longer. All I’d wanted to do for months was to go home and see my dogs.
“Eventually I arrived home towards the end of October 2012 and had to sleep downstairs on a hospital bed with an air mattress. Needless to say, my life had been changed completely.
Our lives had been turned upside down
“I was in a very dark place for a very long time and refused to accept my new disability. I went through all the stages of bereavement for the loss of my limbs. I’d died and been brought back to life a couple of times on the operating table. It all felt like a sick joke, and I honestly felt that it would have been kinder to let me die.
“To be honest, I still occasionally feel like that when I run out of strength to battle through the difficulties of life with a disability. My husband really suffered when I was ill; it took a physical and emotional toll on him as he was working a full-time job and then having to walk the dogs after work, then visit me in hospital for months. He has been my rock, and I couldn’t have gone through this without him. My father had died a few months before, and my mother had just gone into a home with Alzheimers. I felt all alone.
“Previously I’d been a counsellor, supervisor, lecturer and trainer. I’d lost my ability to walk, work, I’d lost my sense of purpose, my freedom, my sense of identity, the ability to walk my dogs.
“My battle with prosthetic legs has been ongoing and has not been a smooth journey. Sometimes I require surgery so the legs are left off for a few months. I’ve not been able to return to work, much to my dismay. I do not have the physical ability to do the jobs which I once did.
“Meningitis Now was such a support to us around this time. As you can imagine, our lives had been turned upside down. I could no longer work or walk our greyhounds every day and my husband was suffering exhaustion. Your funding helped us to employ a dog walker for a few months until things became more stable (thank you!), and a while after that I received funding for a stairlift. This meant I could go upstairs to sleep in bed with my husband again – at long last! Brilliant, thanks! And then adaptations for my car.
“Several years have now passed, and I still struggle. I cannot come to terms with what happened of why. But about 18 months ago I was asked to join a band, which has turned my life around and given me something to enjoy and achieve. Thanks to the stairlift I can get upstairs to record music!
Like a family
“I’ve done a lot of soul searching these last few years, wondering why I survived and what purpose I have on this earth. Being asked to join the band Hybrid Spirits has turned my life around. Suddenly I’ve regained my identity, a purpose, and been able to get my teeth into something which I enjoy again. I enjoy being creative and being part of a team. The band are like family to me. We rally around each other if anyone is having a rough time.
“We have just released an album called Astral Whispers, and after listening to some of the music tracks we thought that it would be a good idea to create some guided meditation tracks, which I intend to record during 2019. The reason for this is because I’ve listened to a lot these last few years, and many talk about "imagine the feeling going to the ends of your fingers, your toes" etc which I personally find upsetting.
“My eyes were opened after my amputations. I went to West Midlands Rehabilitation Centre in Selly Oak for my prosthetics and was astounded by the number of patients there. There were many people with missing limbs such as arms, hands, feet, legs, some had all missing. And I thought I’d had it bad!
“But my experience of listening to meditations has made me realise that disabled and limbless people need a different approach, which is what I intend to deliver. I will let you know when these are done because I feel that many amputees will benefit from them!”