My Story: by Louise

 

I was born 14th March 1980 to my proud parents Mary and Graham at Freedom Fields Hospital Plymouth.  I weighed in at 8Ibs 6oz.

Life started a little rocky, but against all odds I survived, I was a happy child growing up and did all the normal childlike things.  I went to a local playgroup.

 

When starting school I was able to read and write my own name, I was one of the "bright" children. I was popular and had a lot of friends.

 

On the evening of 21st October 1989 I went to bed as a perfectly "normal" child.  I awoke at 2:30am calling for mum because I had been vomiting and had a severe headache.

Mum thought I had a viral infection because of my raised temperature.  After a period of time I lapsed into a coma.

 

Mum and Dad contacted all the medical services and I was rushed to Hospital, where my blood pressure was found to be catastrophically high.  No reflexes were found.

 

I was transferred from Freedom Fields Hospital to Derriford Hospital as they had the CT scanning equipment. This revealed a "Pineal Tumour", which was approximately the size of a 10p coin.  This blockage had caused gross Hydrocephalus.

 

I was operated on immediately and a shunt was inserted to drain the fluid and relieve the pressure on my brain. The pressure was enormous and I was not expected to survive.  I stopped breathing while on the operating table.

 

I was in the ICU (intensive Care Unit) for two weeks on a life support system - with no hope given of survival. Large areas of brain damage began to show up on scans and my pupils did not react to light. This was a disturbing time for my family.

 

I was transferred back to the children's ward at Freedom Fields where, after three weeks, I began to speak. I had all the symptoms of a massive stroke including blindness, paralysis and loss of short-term memory.

 

My behaviour was uninhibited, aggressive and irrational.  I behaved inappropriately and spoke very slowly - thinking about what words I wanted to use. I was very frightened and resentful.

 

After a few weeks my reflexes returned followed by my vision, I could move but my mobility was un coordinated. When I went back to school my friends did not understand me and the changes.  II only had one friend. The rest of my friends disappeared.

 

Over the years I have continued to improve, however, I have residual problems which are:

 

  • Inappropriate behaviour (on occasions)

  • Poor balance/coordination

  • Tire easily

  • Headaches

  • Difficulty in processing infomation/multi-tasking

  • Unable to cope with stress and panics easily

 

I have a ventricular-peritoneal shunt in my head and in 2008 my pineal tumour has become active again.

 

Headway Plymouth has supported me and my family since 1998. I had to wait until I was an adult to receive these services.

 

Since attending headway I now:

 

  • Live independently

  • Continue with further education, I have completed NVQ level 2 &3 in customer services

  • Receive regular counselling sessions

  • have I.T. skills & digital photography

  • have Administration skills

  • have basic cooking skills

 

I feel Headway Plymouth gives me a sense of "belonging" and the support and services that I want. Headway Plymouth has more understanding and is sensitive of my problems and support me with looking at (and dealing with) difficult situations that arise daily in my life

 

From a Carer's Point of View

 

One moment everything was "normal". There was the excitement of going on holiday the next day.  All the preparation was going well.  We were looking forward to a nice easy few weeks. And then it happened. BANG! Everything changes in an instant.  My husband was rushed to hospital in a coma.

 

I went from excitement to despair, fear of the unknown, and frightened.  I was in an alien place, people rushing, machines beeping and the person I love motionless. There was no-one to talk too.  Everyone doing something but me.  I felt useless - out of control and all I did was try not to cry and keep a brave face.

 

What's going to happen to him? What's going to happen to me?  Survival or the unthinkable?  What will I do? What if?  Silly things popping into my head.  Did I lock the door? I started to panic, trying to breath slowly, but all that was going through my head was "what if... how am i going to manage... what are they doing to my husband"? Why can't I see him? Why won't they tell me? Where is everyone? I can't sit still - I feel as if I'm going mad.

 

And then finally someone tells you what's happened.  You accept what is said at that time, but I wasn't really able to take it in.  I felt I was really on my own. At lest I was able to see my husband.  He looked the same, but I was not prepared for all the equipment.  This was very frightening, but I thought everything will be alright - he will be back to normal soon.

 

I felt angry. How dare he cause such problems and now be peacefully asleep.  I still thought he would be OK and that life would resume as before.  How wrong I was.

 

Trying to carry on a normal life was very difficult because family and friends were concerned and asking questions that I could not answer, I wanted answers but there was never anyone to talk too.  He was being cared for but what about me? Visiting the hospital after a period of time, I found tiredness and resentment crept in, because there was no response from him.

 

Time's going on and there are no clear signs of him getting back to normal.  And then he's discharged home.  I had no help, no discharge package, no social worker, no information on any changes there would be to him, or even how much damage he had suffered. He looked OK and he walked OK, but there was something not right.

 

Back home, at last.  I thought life was back on track and it'll be just a matter of time before he would be going back to work.  Once again, how wrong I was. My husband felt there was nothing wrong with him.  As far as he was concerned he had not changed - nothing wrong with his memory, balance, behaviour.  Ha! Ha!

 

For me it was constant frustration.  I wanted to scream. I didn't understand what had happened.  My whole world was upside down in a split second. I lost my patience with him and myself.  Who can help me? Things were going downhill fast.  Why, when he has been discharged from the hospital, is he not back to normal?

 

Financial difficulties were now setting in.  I found I was overloaded with paperwork, telephone calls, finding the money to pay bills, coping with my husband's anger and frustration and I found that I was running on adrenaline.  How much more can I take. It was time to visit my GP again my husband was the priority. Now it's more medication to face.

 

Thankfully it was my brother-in-law that told me that we may be entitled to some benefits.  More paper work to complete and what a mine field! I really could have done with some help.

 

By chance, in a local shop, I was able to make contact with an off duty social worker who advised me to make an official contact for an appointment. Things started to improve for me, from getting some equipment, a financial review, and most importantly Headway Plymouth - which has changed both our lives completely.  They have become OUR life-line. I value the counselling - as it has helped me to understand the enormity of the loss we have had.  That I am important too.  I am now able to cope and make appropriate changes to my life after brain injury.

 

Life is still difficult and has numerous challenges, but I no longer feel alone or isolated. There are no answers.  Nothing prepares you for the future or the challenges of living with someone with a brain injury.  

 

Everyone's experience is different and unique.

Call us on: 01752 550559