Maria’s Story

I hope by writing my story, it may help other people who have themselves experienced a similar life threatening condition or help them support a family member or loved one.

 It’ll be seven years in March since I was admitted to hospital by ambulance. I’d gone to bed feeling unwell with flu like symptoms. I was later found unconscious and deteriorated rapidly, going into a coma and developing respiratory failure.

 I was admitted to Intensive Therapy Unit (ITU). I was on a life support machine and was fitted with a tracheotomy to allow me to breathe. Doctor’s didn’t know what was wrong with me. There had been a number of problems about the diagnosis. I had lumbar punctures and MRI scans, I remained in a coma for 2 months. It wasn’t known if I’d survive.

When I woke I was very lost, confused and disorientated in my surroundings. I slipped in and out of consciousness. I was hallucinating. There was no movement. I was lying there trapped in my own body. I was terrified and wanted to scream. I couldn’t even open my mouth. I was lying there trapped in my own body, my mind spiralling. I was paralysed from head to toe. This was the worst time of my life. I felt it was massive battle to survive. Unable to communicate, feeling very emotional and mentally unable to cope with the situation, terrified I’d remain in the same state.

For the weeks that followed I only had my thoughts to occupy me. I desperately tried to alert people that I was awake. I’d follow them with my eyes. As time passed, I learned to blink once for yes and twice for no. It was amazing to be able to communicate after so long. My progress continued, 2 fingers on my left hand moved.  I was transferred to the High Dependency Unit and Ward 40.There was damage to my nerve cells and my muscles had deteriorated. I was started on a 6 week anti-biotic treatment. I was told there was a presentation of Listeria in the brain stem. I became very depressed and was on the verge of tears every time anyone spoke to me.

I had no function in my lower limbs and weakness in my upper limbs. My mental state got slightly better when the tracheotomy tube was removed. I was now able to talk to my family. I was hoisted out of bed into the wheelchair and taken to the physiotherapy department. I had no control of my body and needed support, my balance was very poor. I was extremely disabled. As time went on I was put on the tilt table and put on the waiting list to continue my rehabilitation therapy at Maidencraig.

The illness had eroded my confidence and I was finding it hard to deal with the situation. I thought I’d never get home again and that I’d be hospitalised forever. I was down when family and visitors went away and I wished I could go home with them but that was impossible.

As I improved I was transferred to Maidencraig Rehabilitation Unit. This is where I learned about my diagnosis. It appeared to be encephalitis, this added to my emotional problems, as I’d never heard of it. It’s a condition where an infection attacks the brain, making it swell, causing brain damage or triggering a coma.

I was getting physiotherapy and the hydrotherapy pool. I continued to make small gains, small though they were and work on my legs to try and straighten them. I found the therapy sessions valuable and beneficial. Eventually I could move my upper limbs and I wanted to continue and do more for myself. I wanted to know how far I could improve.

In October my hopes of having a free life were knocked back. I was told that I wouldn’t be expected to walk again or even stand unaided in the near future. I was devastated at this news. I felt I couldn’t cope anymore and wanted to give up. With the support and persuasion of my family and realising how I had improved so far, I became more determined to improve further. I just kept it up and persevered with will and hope. I thought of my family and continued to make small gains. I made it a long-term goal to be able to stand. To help with my development I got the use of a standing frame. I needed to use this every day to prevent stiffening and to practice sitting, standing and my balance. I learned how to do car transfers on my occupational therapy sessions. When I managed this I could go home at weekends in the car and gradually managed an overnight stay. At home a bed had to be organised for me in the living room because my bedroom was upstairs. I was told a couple of weeks before that I might get home for Christmas. I was discharged on the 13th December. As one doctor said to me “This was going to be a marathon not a sprint!”

My rehabilitation continued at home and I needed a carer to help me wash and dress. I got the standing frame home with me temporarily to try and sit to stand and persevered with this. As time went on I made a great deal of progress. The physiotherapist came in one day with a Zimmer frame. I took a couple of steps at first until I was getting more confident and this gave me a bit more freedom. I then went on to a tripod, a 3-wheeled frame. I managed to get about the house a lot more. This led to short walks and I was able to go out and about using at first two then just one walking stick.

It was hard but I came through it and proved the doctors wrong, relearning how to do everything. I’ve regained the use of my limbs and can now walk unaided. I continued to exercise daily and gradually built up my muscles. The illness has left me blind in my right eye but I’ve got my life back. Going through something like this teaches you what really is important in your life. Whether you’re happy or sad, make the best of it. Live life to the full. I am eternally grateful to all the caring people who have helped me so much through my illness.

I attend Momentum twice weekly and this has made me feel I have a more positive outlook to my future.

Maria McRobbie

2nd March