Biography of Mike and Mary

Mary and I have been married 40 years having met a year earlier and fallen instantly in love. Yes, the full fairy-tale. We have three children, Sandy, Chris and Adam. Sandy who is married to Christian lives in the USA, Chris and Adam.

Mary and I are the embodiment of north meets south, with Mary from the north. We met when Mary worked at Stoke Mandeville hospital, where I was volunteering at the time.

We have lived in various places Steeple Claydon, Stoke Mandeville, a few weeks travelling in Israel, Simpson Cross (Wales), Bristol, Nailsea, Hartlepool, Hatch Beauchamp, Creech St Michael, Wellington and now Hartlepool again.

Our garden at Creech St Michael

The first signs of illness were in Bristol, but it was in Nailsea that it took hold more fully. Hartlepool is where I first needed a wheelchair. See the blog The unexpected emergency, from our time in Hartlepool. Creech St Michael is where I was first limited to a hospital bed and had carers for the first time, but I was still able to weight bear for transfers sometimes. A number of my blogs are from here, the first being Hello World.

It was also Creech St Michael where a miraculous healing happened, and I was able to walk for two and a half years this carried on until part way through our time in Wellington. Two years into our time in Wellington I was no longer able to weight bear or walk and needed a hoist for the first time. To understand something about this look at my blogs “You can do it again.” And “How can it be OK?

The Nailsea years

Our arrival in Nailsea in 1992 didn’t start well. After an exhausting day moving, with the help of my brother and brother in law, I awoke with a head splitting, sick, eyes blinding, face numbing, migraine. It wasn’t a headache. Our eight-year-old daughter, Sandy was with me, while my wife and two younger sons Chris and Adam, aged six and two were staying with my mum. Having seen that I was totally incapacitated by migraine, Sandy was making her breakfast and a drink for me.

2 Worcester Gardens, Nailsea, 28 April 1995

Worcester Gardens

When I pack a microwave, I use any spare clothes to hold the glass plate safely within the microwave. Not knowing about my clever packing skills, Sandy opened the door saw the clothes in this odd place and pulled them out. I heard the crash of glass from my bedroom and it mobilised me, slowly and painfully. Not an auspicious start, trying to clear broken glass from the kitchen floor, whilst in agony, trying not to be sick. But things got better.

Our first night as a family in this new house was an eye opener. Or should I say ear opener. We’d moved from a busy, noisy street in Bristol and here we were on a quiet road in Nailsea. Mary and I sat down after the children were in bed. After a moment of silence, we thought we’d gone deaf. Then we heard a cow moo. We’d never before or since lived anywhere as quiet, it was lovely. The house itself was not as lovely, it had been neglected and we decided we would only stay there for six months. We actually stayed thirteen and a half years.

We’d moved to Nailsea because of the schools and because our two sons had severe Asthma which meant we needed to move from the polluted air of the city. Selling our house in Bristol we rented a house next to one we planned to buy once the price dropped. This was when house prices were dropping, but faster in Bristol than Nailsea. But our plans didn’t work out. Due to a combination of events we ended up continuing to rent the house in Worcester Gardens.

Nailsea was an amazing place to live and still a place we look back to fondly. The first thing that struck us was how friendly it was. The health visitor recommended to Mary a neighbour across the road who would give her a lift to the school on cold wet days. This was needed because our lads had such severe asthma the cold air would trigger an attack and I used our only car to commute into Bristol for work. Our actual neighbours were amazing too, being so friendly and welcoming.

Safe is a word we always associated with Nailsea, it’s a place where we were happy to allow our kids to play out in the streets or at the local green. After the hothouse schools at Henleaze, our children really thrived at the Nailsea infant and junior and latterly the comprehensive school. The more relaxed and yet solid education suited all of them and they learnt effectively. The infant and junior schools were also very good at dealing with asthma.

We’d never lived anywhere, especially such a small town, with so many large churches. Not just large, but joyful, encouraging, full of life, supportive and helpful churches. As Christians we got to know many folks in the churches of Nailsea.

The fly in the ointment for me is that even before we moved to Nailsea, I had unknowingly been ill. In Bristol I’d been doing work on our house and towards the end of doing that I found my normal high energy levels dropping. Pain increased and I started to really struggle to function. Some days at work I literally couldn’t move for a few minutes and I felt sick and ill. Obviously, I saw the GP, he ran some basic blood tests and for some reason fitness tests, I was told I was unfit and needed to exercise more. In 1993 there was one blood test result that had a yellow highlight from the path lab, my red blood cells were enlarged, more on that later. So, on doctors’ advice I exercised, I started walking a mile each lunchtime and I bought an exercise bike and spent half an hour each night on it. A month later I went back to the GP, he re ran the fitness test and my fitness level had decreased. This was the first thing that pointed to a possible diagnosis. Muscles that are made worse by exercise is a symptom of ME. Normal muscles improve over time with exercise. My GP at the time didn’t believe in ME so he didn’t diagnose that.

Muscle fatigue and tiredness were not my main problems. I had pain, so severe that I could have happily ended it all, had I not had a family to live for. There were parts of my body that lost sensation, like they’d been anaesthetised and then came back a week or so later and another area lost sensation. My legs, my arms, my hands and my face competed with each other to see which could last longest without feeling. I had balance issues, my legs didn’t always obey me and there were other neurological symptoms. I repeatedly visited my GP at the time, who will remain nameless. Each time he ran blood tests there were yellow highlights on my red blood cell result. I now know these are megaloblastic red blood cells.

He called them, “Bully beef red blood cells, a sign of how healthy you are.”

He reckoned that was why the lab highlighted it. I now know it is a sign of pernicious anaemia, he should have known that. But these first sign of pernicious anaemia he totally ignored. There were several other anomalies in my blood test results:

My GP said this,

“In someone who was ill they would be significant, but in a healthy man like you we can ignore them.”

Yes, I found that unbelievable as well. I was repeatedly visiting him because I was ill. He didn’t really see me as ill even though I had lots of symptoms and anomalies in my blood test results. I struggled on working for two years with no answers having to take bigger and bigger chunks of time off work.

One day I was driving up the motorway. I entered it at Clevedon heading uphill towards Bristol. Being early morning, it was quiet, and I was on the inside lane. As I entered the motorway my hands fell off the steering wheel and my feet slipped from the pedals, my body went limp and I slumped forward with my eyes closing. I was not asleep, but frighteningly awake. I really thought I would die. As I was going uphill the car slowed with no acceleration applied, due to the motorway camber it drifted onto the hard shoulder and wedged against the kerb, stalling to a halt. After about half an hour or so, it felt an eternity I came around from what I now call my first collapse. (see other blogs for more details on these) Drove very slowly to the next exit and home. I went to bed and called the GP. He said I was just suffering from exhaustion and overwork and gave me a week off work.

I needed to know what was really wrong. I didn’t know at that time I could have just changed GP’s. So, I paid to see a private doctor. He was the one who diagnosed ME and said only time and rest would cure it. It was a poor diagnosis because it stopped them looking for the other problems, leading to another six years of untreated pernicious anaemia after it had already been untreated for a few years. As the diagnosis of ME gave an open-ended return date for work, my employer fired me because I was ill.

Over the next few years I was mainly limited to the house. I could occasionally get out, on a good day. But I found that my legs, became more and more disobedient as time went on, as if I was drunk. It was only recently that a neurosurgeon explained to me that my inability to walk was caused by the permanent neurological damage, resulting from the pernicious anaemia (central neuropathy) and that there was probably another overarching neurological condition that has been missed so far.

Between 1994 and 2000 Mary not only had our children, but me to look after. There were times when she had to leave them to sort themselves out downstairs, while she comforted me as I lay in bed. I mentioned before about pain. Mary sitting with me gently stroking my head and praying was the greatest comfort. Other times I was lying on the sofa feeling retched while the kids played around me. These were difficult times.

Mike Ill sleeping Children playing Feb 1995 no2

There were times of great joy too in those years. Kindness from friends and neighbours. Generous gifts of money that enabled us to buy food, a car given to us just when our previous one failed its MOT. Help from the churches. One-time Trendlewood Church took Mary and the children on a camping holiday, while our neighbour kept an eye on me, sorting my meals. At the campsite there was a swimming pool, too deep for Mary, as she is only short. The kids wanted to slide into it down a shute. So, the pastor stood in my place like a surrogate dad and caught each of them as they slid into the pool.

Mary found respite in an art group with two friends. The three of them met together for years. Mary also got an allotment near our house. It became her oasis from the stresses of illness at home and a place I could occasionally walk to and sit in enjoying the beauty.

In 1999 I’d finally had enough of my GP telling me I was fine, and nothing could be done. I insisted I see a neurologist. Whom I saw early 2000 and he diagnosed pernicious anaemia. After it was treated, I had a respite in my health. Let me explain for the non-medical. Any form of anaemia causes the body to be starved of oxygen. My body had been slowly starved of a full supply of oxygen since about 1990, when I first had symptoms. Hence the damage to my central nervous system.

From 2001 to 2005 I worked part time for the City Church Bristol as an Evangelist. We set up weekly at Nailsea Market giving out free tea, coffee and biscuits or telling people about the Alpha course.

Market 23rd April no.4

During that time, we also formed a Church plant called Link Church that met for a time at the Town Hall building, where the Baptist Church now meet.

Link Church (11)

One time we put on a fun weekend with the help of a large group of teenagers. It was called The Noise and we held it at Scotch Horn sports fields, August Bank Holiday weekend 2002.

Puppet show

In those years I also joined our children in a couple of productions of Nailsea musicals, my favourite being ‘Lest We Forget’. I love singing, acting, not so much. I am not saying I am any good, I just enjoy it.

It wasn’t that I was totally well in those years. But think of it this way, you’ve been suffering from reduced oxygen for years and suddenly your oxygen levels are returned to normal. It’s amazing, your energy levels increase, headaches decrease, and sickness gets less. Its like going from being on the floor to a couple feet above it, where normal is the ceiling. Its only once you have experienced it for a while that you realise the remaining limitations. What you may have realised about my character, by the fact I carried on working for a few years when I was first ill, is that I push hard and don’t give up easily. I am a fighter and not a quitter. So even once I realised, I was still ill, I carried on doing things. It was after I realised that I was still ill, that I started part time work for the church and joined Nailsea musicals. There is a foolish part of my character that thinks ‘if I push myself really hard, I will be able to overcome this.’ Of course, the actual result was a complete collapse again in 2005. I stopped everything and not surprisingly, having stopped and rested for a few months I felt better. So much better that when I was offered an opportunity to go and work in Hartlepool, part time, I took it. But that’s another story. One you will find in my other blogs.

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Author: Mike Nevin

I decided to write about the funny side of being cared for. I am a full time wheelchair user with daily carers. It's my experiences with my carers that inspired this blog.

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