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| Paul |
Paul caught H.S.E at the age of 38 years in December 1999. We live in Lincolnshire in the United Kingdom.
If you knew Paul, you wouldn't believe that such a fit and energetic man who had a zest for life would ever conceive getting an illness like this. He was never ill. He didn't even get a cold, if he did; his answer was always to 'push it' not let it take over. Paul's job was a high risk one, but he always had a healthy fear. He was an 'Aerial Rigger' and would not think anything of climbing up a Mast over 1000 ft to put up a microwave dish or antenna. You had to be fit just to survive the climb! Me, I hate heights, I can't even stand on a footstool without feeling a little wobbly.
The week leading up to his illness, Paul left to go to London to attend a conference for the week. He left early on the Monday morning on 29th Nov ‘99, as he had to pick up a colleague on the way. By Tuesday night he had complained to me on the phone that his ankles had swollen up and he could hardly walk. I told him to go to the hospital, but being a man - being Paul he just shrugged it off and said he'd wait until he got home on the Friday. When he arrived home on the Friday afternoon I asked to see his ankles but the swelling had gone down, so we didn't really think anymore about it, although I was going to take him to see the doctor the next day. We went to bed.
The next morning he woke up early being sick. At the time there was a sickness bug going around the village, my sister-in-law had it. So naturally I thought he had caught it. He didn't go the Doctors that day, he was too ill - believe it or not! He stayed in bed all day, rising only once to come and see the Christmas decorations that my son and I were putting up. He didn't look too clever and went straight back to bed. By about 8.00p.m I put my son to bed and went to check on Paul, as I had been doing all day and he was fast asleep. By 10.00p.m I decided to go to bed, but to sleep in the other room across the landing (with the door open). I said goodnight to Paul and he replied with a garbled message " Don't worry about me, I'll send you a text message". I just looked at him a bit puzzled and said "What"? I told him he was just talking nonsense and to go to sleep he would feel better tomorrow.
Unfortunately, for Paul, tomorrow never came. I was woken (almost as if someone had pulled me up in bed). I heard the most horrific sound coming from the bedroom. It was 3.00 in the early hours of Sunday morning. Paul was trying to breath, but was already unconscious. The rest of what went on that night was so fast. Somehow, I managed to shout to my son to get up and put on all the lights and open all the curtains. While I was doing this, I was already on the phone to the Ambulance. They asked me to turn him on his side, but he was a dead weight, so I had to call my son who was only 10 years old at the time to come and help me. The last thing I wanted for my son was to see his dad, (the one man he always looked up to in life) in this state. He helped me and I got him out of the room as quickly as possible. I told him he had an important job, and that was to keep a watch for the ambulance, which he did so well and I am so proud of him. He really was a very brave boy that night.
By the time the ambulance arrived Paul was in a coma and in a desperate state. They rushed him to the nearest hospital, which is over 30 miles away. They took him into I.C.U. and put him on life support. I was told to gather all the family as he wasn't expected to last more than a few hours, but they had the diagnosis wrong. They decided that he might have a better chance in Sheffield Hospital. So they put him in the Air-ambulance. His family was told to go there. I was told to go and see my son and prepare him for the worst. (If you have ever had to do this to a child, you will know the pain never goes away). It still hurts now as I write this.
Luckily, the doctors were more on the ball. They had already put him on Acyclovir plus five other Anti-bacterial drugs, just to cover all the options. They did the MRI scan three times. He had his Lumbar Puncture to rule out meningitis, plus all the other tests that are so vital to get to the right diagnosis. Luckily for Paul they did. He was in a coma for 3 1/2 weeks. They decided to try and bring him round, but then again we had to be prepared for the worst. They had no idea how much brain damage had been caused. So again we were all on tender hooks.
About 4 1/2 weeks later he was slowly weaned off life support. He couldn't speak or write or walk. He understood what people were saying and he knew who all the family was luckily. He had intensive speech therapy, and physio. He still had to be fed through a tube down his nose (which he hated and kept trying to pull out) he said it was painful. He also had to learn everything all over again. He was like a newborn baby, but with the knowledge of what he had to do. It must have been so awful for him. It was terrible for me watching.
Christmas day arrived and my son and I went to spend the day with him. It was very hard. He still couldn't really communicate. We didn't really feel in the Christmas spirit (who would). The staff was great; they gave my son some presents and whisked him away to share their chocolates. The staff was wonderful. They knew we hadn't eaten, so the sister on the ward arranged for us to have an N.H.S. meal (hey, I wasn't about to complain) it was such a kind gesture and much better than starving. She told us not to come back into the ward for an hour, as she had a treat for us. So we waited in a ward and watched the TV. Then she came and got us. To be honest I was a bit worried. But I needn't have been. As soon as we walked onto the ward Paul let out an enormous sound. He shouted my son's name "JAMIE". It was wonderful. My son turned to me and said it was the best Christmas present he could ever have wished for, trying to fight the tears back. I couldn't speak. The staff had been secretly training him to surprise us. It was just the best. Although I think they made a huge mistake because --Boy, we weren't ready for the Paul that emerged after that, neither were they!
He was loud and he wouldn't stop singing. His speech was all slurred, he couldn't write but that didn't stop him. The staff threatened to put him on side ward if he didn't shut up!!
A few days later he was taken off life support completely and put in a ward down the corridor. They felt he had improved enough to be taken to another ward a few floors below. It was horrendous. He wasn't happy at all. I had to go in search of nurses and eventually found them all gathered in a small room down the other end of the corridor. A patient in the room had fallen out of bed and there was no one about. Paul was getting severe headaches, but they weren't treating him. How could the same hospital give a 1st class service a few floors up and such a second rate one on this floor? He was even threatening suicide, saying he would wheel himself through the windows. (I couldn't believe it, as if we hadn't been through enough). We were still 11 floors up with huge glass windows. I wasn't about to leave anything to chance. Eventually after 6 weeks in hospital he came home.
I was not prepared in the least for the amount of care and support he would need. Unfortunately, not all of us are blessed with a support network. Family and friends scatter like seeds in the wind. People always stop you in the street and ask how things are going, but they don't really want to know the truth. I learnt that very fast and would always say "everything's fine". But I don't have to you - they are usually far from that.
After exhaustive phone calls and a lot of help from our community nurse (she was brilliant) we eventually were put in touch with the Physio's and neuropsychologists etc that were much needed for Paul's recovery.
It is over 2 years now since he was diagnosed and he has come an awful long way.
He is about to be set loose in the kitchen - fire brigade has been alerted!
If this illness has taught me anything as a carer, a mother, a wife - it is - stay strong and have a sense of humour, because if there is anything you need - it is one of those. Otherwise with all his depression - it would be too easy to get caught in the whirlwind, and I am needed here to keep him safe. Plus my son needs me; bless him.
Unfortunately (or fortunately), this is such a rare disease. But for us doing the caring, trying to find some one who can relate to you is also rare, and the feelings that you have such as- Am I going insane? Is this normal? Well, whatever normal was, it will never be again, but you will find another level, one that is comfortable for you. But there is no substitute for having some one else to talk to; it might just make all the difference.
Please feel free to contact us, whenever you feel you are going mad - which may be often, or if you can relate to this story in any way. We would love to hear from you. Take care.
There is a light at the end of the tunnel.
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Mande & Paul
Lincolnshire, UK
Posted: May 26, 2002 |
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