I had an interesting week last week, following my visit to the GP a couple of weeks ago. He referred me back to Neurology because the hypersensitivity and muscular jerking have become worse over the past year or two. Although there is some jerking on the left, it is much worse on the right, which is where the hypersensitivity seems to be confined to.
Last time I saw the Neurologist was a couple of years ago, when I had MRI scans and was referred to a Speech Therapist. As nothing significant showed up in any of the tests that were done, things were left there, which is exactly what should have happened. There were two relatively minor things that showed up tests. The first was elevated levels on the ESR test. This is a non-specific indicator of inflammation, that has been consistently high for the past eleven years at least. It is a lot lower than it was back then, which I count as a good thing. The second was a minor blip in the right-hand cerebral cortex. Nothing particularly significant at all. I have had blips show up in CT and/or MRI scans in the past that have later vanished. I did get to see what my brain looks like on an MRI scan though, something which I found fascinating.
Given that things have gotten worse, the neurologist wants to double-check things and see whether there is anything obvious going on. I was meant to have an MRI scan on Monday, but due to a voice-stealing cold I wasn't well enough to go, so have an appointment on Friday instead. He also mentioned nerve conductivity tests on all limbs, which I am not keen on as a lot of the time even the lightest touch on my skin is painful. He's suggested a couple of other tests and asked me if I wanted to try some physio, but was cautious because of my pain levels.
I figure that I am confident enough to tell a physio if they try to push too hard, so I told my neurologist that I was gobby enough to deal with an over-enthusiastic physio and that I would try anything that may help. With any luck the next twelve months will see an improvement.
Wednesday 25 November 2015
Sunday 15 November 2015
Let's put the focus where it should be
There have been terrorist attacks in the West Bank, Somalia, Israel, Egypt, Lebanon, Iraq, Chad, Cameroon, Italy and France so far this month.
In the first 12 days of November there were 84 people killed in some form of terrorist attacks around the world. On the 13th November a further 150 people were killed in Mount Hebron, Baghdad and Paris. A further 704 people were injured across a total of 21 - yes 21 (!) - attacks in the first thirteen days of this month. Those figures do not include the perpetrators in those heinous events, because I don't think that they are where the focus should be.
I grew up during the era of the IRA's campaign of terror. Born some ten months before the awful Birmingham pub bombs which exploded on 21st November 1974, I grew up less than twenty miles away. The fact that there were often reports involving IRA activity on the news meant that I and most of my friends grew up with a rather blase attitude towards the ongoing threat. I don't mean that we were any less disgusted or angry at the punishment beatings, kidnappings, bombs, murders and intimidation that the IRA routinely dished out both on mainland Britain and in Northern Ireland. What I mean is that it was simply a fact of life; you cannot go through life in a heightened state of fear, our bodies and minds don't do that when something is there all the time.
One thing that I still feel angry about is that there always seemed to be so much focus on the perpetrators and so little on the victims. How many people from my generation and older can actually remember the name of even one victim? Sure, there were a few well known victims, such as Lord Mountbatten, but on the whole the victims names are often left forgotten while media publishes article after article on the perpetrators.
Two of the many names that I made a point to remember are Johnathan Ball, aged 3 years, and 12 year old Tim Parry. They were murdered by use of a bomb, which exploded outside a Boots store in Warrington on 20th March 1993.
I started work at a government agency on 12th April 1993, which is one of the reasons I remember the Warrington bombing so well. The first few years of my time with the agency I worked at we had more than a few bomb alerts. We would end up spending hours at a time outside the building while we waited for a bomb disposal squad to arrive and conduct a controlled explosion. Yes, we all got blase about the bomb evacuations too.
Among all the anger and focus on the perpetrators that happens in news media and social media, people often forget about the victims and their families. There are numerous families in England and Northern Ireland who have never seen justice for the beating, kidnap & disappearance, injury or murder of their relatives. Some have been waiting over 40 years now, only to see their relatives names forgotten. I imagine that families across the world find themselves in the same position as they wait for someone in to help them. I hope that some day they will find answers and gain peace.
With that in mind, I would like to ask a favour. Rather than getting involved in arguments over all the right-wing hate that I know is already spreading over the internet following Paris, can I ask that you make a particular effort to remember the name of one of the victims from one of the attacks? I think that it is important to remember the innocent victims in all the violence and anger that is happening across the globe.
In the first 12 days of November there were 84 people killed in some form of terrorist attacks around the world. On the 13th November a further 150 people were killed in Mount Hebron, Baghdad and Paris. A further 704 people were injured across a total of 21 - yes 21 (!) - attacks in the first thirteen days of this month. Those figures do not include the perpetrators in those heinous events, because I don't think that they are where the focus should be.
I grew up during the era of the IRA's campaign of terror. Born some ten months before the awful Birmingham pub bombs which exploded on 21st November 1974, I grew up less than twenty miles away. The fact that there were often reports involving IRA activity on the news meant that I and most of my friends grew up with a rather blase attitude towards the ongoing threat. I don't mean that we were any less disgusted or angry at the punishment beatings, kidnappings, bombs, murders and intimidation that the IRA routinely dished out both on mainland Britain and in Northern Ireland. What I mean is that it was simply a fact of life; you cannot go through life in a heightened state of fear, our bodies and minds don't do that when something is there all the time.
One thing that I still feel angry about is that there always seemed to be so much focus on the perpetrators and so little on the victims. How many people from my generation and older can actually remember the name of even one victim? Sure, there were a few well known victims, such as Lord Mountbatten, but on the whole the victims names are often left forgotten while media publishes article after article on the perpetrators.
Two of the many names that I made a point to remember are Johnathan Ball, aged 3 years, and 12 year old Tim Parry. They were murdered by use of a bomb, which exploded outside a Boots store in Warrington on 20th March 1993.
I started work at a government agency on 12th April 1993, which is one of the reasons I remember the Warrington bombing so well. The first few years of my time with the agency I worked at we had more than a few bomb alerts. We would end up spending hours at a time outside the building while we waited for a bomb disposal squad to arrive and conduct a controlled explosion. Yes, we all got blase about the bomb evacuations too.
Among all the anger and focus on the perpetrators that happens in news media and social media, people often forget about the victims and their families. There are numerous families in England and Northern Ireland who have never seen justice for the beating, kidnap & disappearance, injury or murder of their relatives. Some have been waiting over 40 years now, only to see their relatives names forgotten. I imagine that families across the world find themselves in the same position as they wait for someone in to help them. I hope that some day they will find answers and gain peace.
With that in mind, I would like to ask a favour. Rather than getting involved in arguments over all the right-wing hate that I know is already spreading over the internet following Paris, can I ask that you make a particular effort to remember the name of one of the victims from one of the attacks? I think that it is important to remember the innocent victims in all the violence and anger that is happening across the globe.
Friday 13 November 2015
Friday the 13th: scary day or just another friday?
Seeing that got me thinking about superstitions, where we have them from and why we get them so stuck in our brains and lives. There are those common to particular cultures, such as it being bad luck to walk under ladders and - when I was growing up - black cats were lucky. Apparently we have now taken on the American version and they are considered unlucky. I like the version I grew up with better.But many of us also have own little rituals and superstitions that are particular to us. For instance, I have a gold pentacle that was bought specifically for my wedding day. I wear it whenever I leave the house and if, when I get where I am going, I can't park I have a habit of whispering a little chant over it and touching it to my lips. I have never once failed to find a parking space after doing that, so it has become more and more embedded in my mind. I am at the point where I feel mildly uncomfortable if I ever forget to put it on.
The power of belief can have a powerful effect on us. Maybe if we truly believe that something is going to happen, such as believing that Friday 13th is going to be unlucky, that terrible things are going to happen to us all day, then that is what we get. I am not talking about huge dramatic things such as cars exploding and zombies walking the earth, but those little niggling things that drive us to distraction. How irritated are you going to be by the end of the day if you discover mistakes in every document you type after you have printed it out, or worse, after you have posted it out? Or if you keep tripping over things, bumping your elbow? And the more that happens, the more annoyed you will get and the more often things will go wrong.
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| www.thesafetybloke.com |
A lot of cultural superstitions are often handed down to us through history and, while they seem silly to us now, it is surprising just how many of us still pay attention to them. How many of you could break a mirror and not so much as think that you may be about to receive seven years bad luck?
Wednesday 11 November 2015
The death of Motley Crue
It has been an interesting week or two. When I returned to home after respite I was wiped out for a while; I spent almost all my time either sleeping or trying to find a position to either sit or lie in that didn't make me want to scream in pain. Then the pain decided to jump to another level altogether. Just to be really annoying, it jumped on the night I went to see Motley Crue and Alice Cooper at the Genting Arena, Birmingham.
Now, much as I love live music, my health issues make it very difficult for me to actually see any. Looking at my old tickets, it appears that it has been four years since I last saw a live gig. Because I know that I am going to have after effects of a night out, I tend to make sure that it is a band that features in my top few. Alice Cooper has always been among my favourite musicians.
In fact, it was was a far better gig than the previous couple of times that I had seen him. Over the past twenty-five years I have seen Alice Cooper on numerous occasions, with a variety of musicians on stage and although he is always good this gig was one of the best I have been to.
I want to say that the staff at the Genting Arena are really well trained in dealing with customers with additional needs. The wheelchair section overlooks the standing area and, as you can see from the photos, has a great view of the stage. My photos were nowhere near as good as they were last time I went to a gig, but I had fun making memories of what was a fantastic night.
Motley Crue, on their last ever tour, were more amazing than ever. They have been fantastic every time I have seen them, but this time, wow. The energy in the arena was incredible and both Nikki Sixx (bass) and Vince Neil (vocals) seemed to be bouncing around like teenagers. Mick Mars (guitar) is not only a great guitarist, but a man that I admire for the way he deals with his own health issues. Having been diagnosed with ankylosing spondylitis as a teenager, an inflammatory form of arthritis, his spine has gradually seized and along with scoliosis, has further reduced his mobility. Despite the pain that he must have been in, he gave a great performance. As someone with health issues of my own, I know that our health does not define who we are and what we do with our lives, but it does affect our choices. For me, seeing someone with chronic pain performing in one of the most successful bands of their generation - and a generation or two after - is both fantastic and important. It reiterates that just because we have health conditions, we are still able to make the choices to live our lives our way.
There is never going to be a drum solo quite like Tommy Lee's drum-coaster. That was a seriously amazing spectacle; a drum solo where the drummer moves along a 'coaster and the drum platform spins upside down... I mean, I've seen some dramatic drum solos from Tommy Lee before, but this time it was something that is I cannot imagine anyone ever topping.
All in all, I really couldn't have imagined a better last gig from a band that has been around for such a large part of my life. It was emotional at the end of the gig; that final realisation that this was the last time that I would see a band who have always been so fantastic.
 |
| Alice Cooper |
Now, much as I love live music, my health issues make it very difficult for me to actually see any. Looking at my old tickets, it appears that it has been four years since I last saw a live gig. Because I know that I am going to have after effects of a night out, I tend to make sure that it is a band that features in my top few. Alice Cooper has always been among my favourite musicians.
In fact, it was was a far better gig than the previous couple of times that I had seen him. Over the past twenty-five years I have seen Alice Cooper on numerous occasions, with a variety of musicians on stage and although he is always good this gig was one of the best I have been to.
 |
| Alice Cooper's band |
I want to say that the staff at the Genting Arena are really well trained in dealing with customers with additional needs. The wheelchair section overlooks the standing area and, as you can see from the photos, has a great view of the stage. My photos were nowhere near as good as they were last time I went to a gig, but I had fun making memories of what was a fantastic night.
 |
| Nikki Sixx |
 |
| Tommy Lee's drum-coaster |
 |
| Tommy Lee and Vince Neil |
There is never going to be a drum solo quite like Tommy Lee's drum-coaster. That was a seriously amazing spectacle; a drum solo where the drummer moves along a 'coaster and the drum platform spins upside down... I mean, I've seen some dramatic drum solos from Tommy Lee before, but this time it was something that is I cannot imagine anyone ever topping.
All in all, I really couldn't have imagined a better last gig from a band that has been around for such a large part of my life. It was emotional at the end of the gig; that final realisation that this was the last time that I would see a band who have always been so fantastic.
Sunday 8 November 2015
Back again!
I confess to having been a bad blogger and vanishing for a few weeks. There is a reason for that, which I did intend to mention before I went but once more managed to forget. We finally made it to our place of respite, which is a farm owned by people I've known since I was a baby. We were there for a little longer than intended, partly because I had a slight dip in health while we were there and needed a couple of pain-relief injections.
We took delivery of our brand new Motability car shortly before we left, which made the drive down interesting. It is a Vauxhall Mokka Turbo SE which, despite some of the reviews I have seen, is actually a lovely car to drive. It has much better road grip than our previous car and because it is a turbo, it pulls away faster too. The reason that we picked the Mokka was because we got much more for our money in terms of features. There is individual climate control for passenger and driver sides of the car, with heated seats and lumbar support on both sides too.
Although many people refer to Motability cars as being "free", this is not true. People who have a certain level of mobility problems are entitled to claim the mobility component of Disability Living Allowance. Let me be clear; this is not a benefit. It is an allowance that helps to contribute towards the additional costs that disabled people incur due to their disability. The good thing about this Allowance is that it allows many disabled people to work, in some capacity. This, of course, means that not only do they then pay taxes, they are likely to spend much more money in various businesses, thus contributing to the economy at a much higher level. Without that allowance, this would not be possible.
For people like me, unfortunately I am not able to work, due to the severity of my health issues. I have, in the past, volunteered in various capacities. My car played an essential role in this. What happens is I pay the entire of the mobility component of my DLA to the charity Motability. In return, I lease a car from them via a local supplier. In my case I also had to pay a small 'up-front' fee of £99 towards my car.
Luckily for me, the almost £60 a week that I pay to Motability includes full breakdown and tyre cover. Believe it or not, with only 650 miles on the clock, we had a blow-out. I wasn't in the car at the time (thank goodness!) as my husband had popped out to a nearby town to pick some food up. It was around 8pm when he called me to let me know what had happened. Thankfully he had been able to control the car and pull into the side of the lane; three guys from a nearby farm had come out to help him.
Here is my big problem with modern car manufacturers; where is the spare wheel? Why is it taken out prior to sale? This meant that rather than the 5 minutes it would have taken my husband to change the tyre, he had to wait for a tow-truck to come out, pick the car up and bring him back to the farm. Because it was night-time and they didn't have a tyre immediately available, the tow-truck then returned the next morning and drove my husband almost 30 miles to the nearest stockist. Yes, I did say 30 miles for a tyre! Had that garage not had any, it would have been a drive of over 65 miles each way.
Anyway, after that had passed, we stay an additional couple of days to de-stress me so that I would be okay with the drive back. That didn't work, unfortunately. It has taken me over a week to recover enough to get back being able to talk-type on the computer.
I hope you've all had a happy and healthy few weeks. It is good to be back! The only thing I really miss while there is that there is no internet access.
We took delivery of our brand new Motability car shortly before we left, which made the drive down interesting. It is a Vauxhall Mokka Turbo SE which, despite some of the reviews I have seen, is actually a lovely car to drive. It has much better road grip than our previous car and because it is a turbo, it pulls away faster too. The reason that we picked the Mokka was because we got much more for our money in terms of features. There is individual climate control for passenger and driver sides of the car, with heated seats and lumbar support on both sides too.
Although many people refer to Motability cars as being "free", this is not true. People who have a certain level of mobility problems are entitled to claim the mobility component of Disability Living Allowance. Let me be clear; this is not a benefit. It is an allowance that helps to contribute towards the additional costs that disabled people incur due to their disability. The good thing about this Allowance is that it allows many disabled people to work, in some capacity. This, of course, means that not only do they then pay taxes, they are likely to spend much more money in various businesses, thus contributing to the economy at a much higher level. Without that allowance, this would not be possible.
For people like me, unfortunately I am not able to work, due to the severity of my health issues. I have, in the past, volunteered in various capacities. My car played an essential role in this. What happens is I pay the entire of the mobility component of my DLA to the charity Motability. In return, I lease a car from them via a local supplier. In my case I also had to pay a small 'up-front' fee of £99 towards my car.
Luckily for me, the almost £60 a week that I pay to Motability includes full breakdown and tyre cover. Believe it or not, with only 650 miles on the clock, we had a blow-out. I wasn't in the car at the time (thank goodness!) as my husband had popped out to a nearby town to pick some food up. It was around 8pm when he called me to let me know what had happened. Thankfully he had been able to control the car and pull into the side of the lane; three guys from a nearby farm had come out to help him.
Here is my big problem with modern car manufacturers; where is the spare wheel? Why is it taken out prior to sale? This meant that rather than the 5 minutes it would have taken my husband to change the tyre, he had to wait for a tow-truck to come out, pick the car up and bring him back to the farm. Because it was night-time and they didn't have a tyre immediately available, the tow-truck then returned the next morning and drove my husband almost 30 miles to the nearest stockist. Yes, I did say 30 miles for a tyre! Had that garage not had any, it would have been a drive of over 65 miles each way.
Anyway, after that had passed, we stay an additional couple of days to de-stress me so that I would be okay with the drive back. That didn't work, unfortunately. It has taken me over a week to recover enough to get back being able to talk-type on the computer.
I hope you've all had a happy and healthy few weeks. It is good to be back! The only thing I really miss while there is that there is no internet access.
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