What do you do when you've tried all the recommended actions by the experts in sleep and you're still awake - and getting more irritable by the second - hours after going to bed?
There are all sorts of suggestions out there from drinking warm milk to getting up and doing something different for ten minutes. Both of those are out for me. Milk tends to make my IBS symptoms flare up, while getting up and moving around is out for obvious reasons.
Tonight I opted to stay in the riser chair again. My husband has a bad cold which, when mixed with asthma, does not make for an easy night's sleep for him. I figured it was my turn to look after him and the best thing I could give him was some peace for the night.
The chair is easily as comfortable as the bed, as it is piled in pillows and blankets. Sleep, however, is choosing to evade me. I'd chase the bugger down and kick it's arse if that was possible. It isn't, so I've made do with reading, catching up with online gossip, listening to music with the hope of falling asleep. I also tried listening to an audiobook with the hopes of falling asleep. It's almost 7am and I am still awake. Tired, a wee bit irritable, but still awake.
I've read dozens of blog posts and advice columns telling me to lie in a certain direction and relax before bed-time. Been there, done that and it still isn't helping! Right now I would give a less favoured body part to be able to sleep, so if anyone out in planet blog has any unusual suggestions that I may not have tried before, please contact me.
Friday, 12 January 2018
Saturday, 13 May 2017
Insomnia and riser chairs
Once again I have had another night without sleep; it shows.
I promise you that I did try to smile, it just didn't quite work out as my mouth refused to co-operate.
As those who know me well can guess from this photograph, I was not able to make the trek the thirty feet or so from the living room to the bed room. Despite the amazing riser chair that a friend of my mom's kindly gave me for free, my body refused to co-operate with the planned long-distance hike. I have spent the night playing with the chair control going from almost horizontal to almost vertical. While this was great fun, it didn't really accomplish much other than make me giggle.
Yes, I have a lot of medical issues that have a big impact on my life, but here is one thing that can kick your butt whether you are healthy or, like me, have conditions such as fibromyalgia, ME/CFS, Lupus etc: Insomnia. Okay, yes, it is going to have a far worse impact on someone like me who already has severe fatigue to deal with, but it isn't pleasant for anyone.
It is difficult to get accurate figures on just how widespread insomnia is, though a recent survey by Dreams found that almost one third of the over 15,000 respondents said that they never woke feeling refreshed. Almost two thirds felt that they weren't getting enough sleep. That is a heck of a lot of people waking up feeling tired.
There are things that various sleep researchers over the years have suggested, for example:
In the here and now, I just hope that you managed to get a decent night's sleep and are ready to have a good Sunday. I am going to head back to Duolingo and see if I can mess up some more German phrases because my talk to type programme doesn't understand how to spell some of the more interesting words. Have fun - and for my fellow insomniacs, I wish you a good day with people who understand you are feeling tetchy and know not to do anything likely to incur your wrath.
I promise you that I did try to smile, it just didn't quite work out as my mouth refused to co-operate.
As those who know me well can guess from this photograph, I was not able to make the trek the thirty feet or so from the living room to the bed room. Despite the amazing riser chair that a friend of my mom's kindly gave me for free, my body refused to co-operate with the planned long-distance hike. I have spent the night playing with the chair control going from almost horizontal to almost vertical. While this was great fun, it didn't really accomplish much other than make me giggle.
Yes, I have a lot of medical issues that have a big impact on my life, but here is one thing that can kick your butt whether you are healthy or, like me, have conditions such as fibromyalgia, ME/CFS, Lupus etc: Insomnia. Okay, yes, it is going to have a far worse impact on someone like me who already has severe fatigue to deal with, but it isn't pleasant for anyone.
It is difficult to get accurate figures on just how widespread insomnia is, though a recent survey by Dreams found that almost one third of the over 15,000 respondents said that they never woke feeling refreshed. Almost two thirds felt that they weren't getting enough sleep. That is a heck of a lot of people waking up feeling tired.
There are things that various sleep researchers over the years have suggested, for example:
- Keep the bedroom for sleeping and sex - remove the tv and keep the computer out of the room.
- Do something relaxing prior to sleep - so that means no horror movies likely to haunt your dreams, folks.
- Lights are best kept off as your body responds to the dark by producing melatonin to stimulate the pineal gland and send you off to night-night land.
- Don't eat or drink anything stimulating for several hours prior to bed - that means caffeine is out for all those coffee lovers out there.
In the here and now, I just hope that you managed to get a decent night's sleep and are ready to have a good Sunday. I am going to head back to Duolingo and see if I can mess up some more German phrases because my talk to type programme doesn't understand how to spell some of the more interesting words. Have fun - and for my fellow insomniacs, I wish you a good day with people who understand you are feeling tetchy and know not to do anything likely to incur your wrath.
Monday, 14 November 2016
Ancestors, invasions and conquest of nations
With everything that has been going on in recent months and
all the anger that has been stirred up against different cultures, it got me
thinking about the history of this little island we call Britain. Specifically,
I've been thinking about all the "white America" and "proper
British" comments that I've been seeing all over the internet. Now, I'm
fortunate in that my friends and my husband do not think that way; the people
that I love are almost all very inclusive in the way they view the world. There
are, of course, those who are not and because I love them for many other
reasons and don't want to lose them from my life, I try not to argue too much
with them. Sometimes that is damn hard!
What I wanted to point out is that if land can belong to
anyone - and I'm not convinced that any species "owns" land - then
clearly America could be said to truly belong to the indigenous people who
remain. If you look at things a little differently and say that length of inhabitancy
means that a culture or race owns land then the African-American population has
a pretty good claim. I know, I know, people are going to jump in and say that Caucasians
were on that land mass now known as the USA first, as they were the ones in
charge of slavery (yes, I am aware that African tribes participated in
capturing and selling people from other tribes to European slave traders). Yes,
you're right, there were some Caucasians there before Africans taken as slaves
arrived. However if you take the mean date of arrival of ancestors of
African-Americans and Caucasian Americans, then African-Americans have been
there longer. Before people start jumping up and down and saying that their
ancestor arrived very early on, I want to just reiterate that I did say the
"mean date of arrival of...ancestors" not the date of arrival of one
particular individual's ancestors.
It isn't just America that has a mixed history and one that
includes invasion and destruction of the oldest cultures to be living on the
land. Britain has been invaded and conquered more times than people realise. I
suspect that many people know about the Roman invasion, settlement or conquest,
but forget about the rest. Off the top of my head - and sticking to the past
two millennia only - I can think of the Romans, the Jutes, Angles, Saxons,
numerous Viking raids and settlements, the Normans, Danish invasion, numerous
Irish raids on coastal towns and the French invasion of 1797. There are
undoubtedly more and in all honesty I haven't slept for a couple of days at
this point so I don't have sufficient brains to dig through all my academic
books to give dates and facts relating to specific incidents.
My point really is that I don't understand what people mean
when they say that they are "pure British (or English, Welsh,
Scottish)". We've been invaded far too many times for any such thing to
exist, even if it did mean something. Do people mean that their ancestors have
been here for a couple of hundred years, or longer? I wonder if those people
realise that all sorts of people with all tones of skin colour have been living
on this land for hundreds of years too - and like in America's case, maybe even
longer than their own ancestors. I remember reading a section of one of my
course books, during my history degree, where it was mentioned that Queen
Elizabeth I had complained about the number of black people living in London.
She died in 1603; large scale trans-Atlantic slave trade began in 1509 with the
Portuguese, though strictly speaking slavery was not allowed on British shores despite existing
throughout the Empire. There also exists the strong possibility that sailors of
various racial backgrounds where already living in Britain prior to that. Just
how long do the angry people think someone's ancestors have to be living
somewhere before the modern day descendant is "British" or "American"?
There was mass immigration in Britain in the 1960s and that did cause a lot of
anger at the time, but come on people, it's hardly the first time that large
groups of new people have come to live on these shores. Even from then, we are
now several generations down the line.
I saw a wonderful little video clip the other day where a
group of people who were proud of their heritage - nothing wrong with that -
but also had a little prejudice towards some other culture, took a DNA test
that traced their ancestry. One that I found particularly poignant was a
Kurdish woman finding out that not only did she have some Iraqi ancestors, but
that there was actually a cousin of hers in the room who was Iraqi. The shocked
expressions on the faces of those who took part and the wonderful mix of
ancestors in the DNA was really touching to watch. If I had the money, it is
something that I would definitely do and would encourage anyone to give it a
go.
Wednesday, 25 November 2015
Interesting appointment
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.
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.
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.
 |
| 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.
Sunday, 20 September 2015
"Does it count if you exercise one leg?"
I know that this is perhaps one of the strangest questions I have ever asked, but it is what came out of my mouth this morning. There is a reasonable explanation for asking this question, so just bare with me a little. Among my health issues I have Hypermobility syndrome, which sounds more fun than it is. It always conjures up images of people folding themselves into tiny boxes or bending into strange shapes; fun stuff that you might see in a modern day circus.
The vast majority of people who have hypermobility are unlikely to have any adverse side effects. Then there are those whose joints have a tendency to dislocate. I fall in the middle; I do have hip and shoulder subluxation on the left hand side, but it isn't something that happens all the time. This week, just to piss me off, both joints tried to make a break for freedom. They failed, but that doesn't mean I'm not in a lot of pain.
You have probably seen people with hypermobility syndrome on television or among your friends, maybe you have it. Many people can go through life without ever having a diagnosis because they never have cause to visit a physiotherapist or to say to their doctor "Hey, look how far back I can bend my fingers/knees/elbow etc". By the way, if you talk to your doctor like that I am going to worry about you a little.
The one part of my body that I definitely do not have hypermobility in is my elbows. Wrists, fingers, knees, hips, ankles, toes (yes, weird) and my lower spine all have hypermobility and bend in strange ways. I am more conscious of it now that I am hitting my 40s than I was in my 20s; back then I would have joints in strange positions without realising I had, until someone commented. Well, I say commented, it was often more like a half-yell followed by "Oh, God, why is your thumb on the back of your hand like that? That's gross" (thanks for that, thinks I). When I say on the back of my hand, I don't mean that my thumb is growing out of the back of my hand (that would be weird), what I mean is this (photo).
I did used to bend my thumb further around the back of my hand without realising I had, but like I said, I try to be more careful these days so have only moved it a little. Even so, I still get told off when I inadvertently do that. It's far less entertaining and exciting than someone standing on their own head (I wonder if they worry about foot odor when they do that?)
Anyway, while I was lying in bed in the early hours I had the great idea of at least exercising one leg by doing leg raises. Okay, yes, if I was a healthy person it may be classed as cheating to use a resistance band to assist a little, but I'm not a healthy person and I need the extra help. I could only do this using my right leg and could not hold the resistance band with my left hand because of my shoulder so, again, just used my right hand. I did sets of side and front leg lifts and did a little triceps work on my right arm, no resistance other than gravity.
I took my time and did the movement very slowly, which adds to the exercise, and also spaced things out. It may not sound an awful lot to many people and back before the pain conditions crept up on me I would have thought the same. Nowadays though, trust me when I say that even that small amount of exercise caused an increase in pain that made me feel quite sick for a while. Despite that I am pleased that I did it. I miss being able to weight train, which I always loved, but something is always better than nothing.
The vast majority of people who have hypermobility are unlikely to have any adverse side effects. Then there are those whose joints have a tendency to dislocate. I fall in the middle; I do have hip and shoulder subluxation on the left hand side, but it isn't something that happens all the time. This week, just to piss me off, both joints tried to make a break for freedom. They failed, but that doesn't mean I'm not in a lot of pain. You have probably seen people with hypermobility syndrome on television or among your friends, maybe you have it. Many people can go through life without ever having a diagnosis because they never have cause to visit a physiotherapist or to say to their doctor "Hey, look how far back I can bend my fingers/knees/elbow etc". By the way, if you talk to your doctor like that I am going to worry about you a little.
The one part of my body that I definitely do not have hypermobility in is my elbows. Wrists, fingers, knees, hips, ankles, toes (yes, weird) and my lower spine all have hypermobility and bend in strange ways. I am more conscious of it now that I am hitting my 40s than I was in my 20s; back then I would have joints in strange positions without realising I had, until someone commented. Well, I say commented, it was often more like a half-yell followed by "Oh, God, why is your thumb on the back of your hand like that? That's gross" (thanks for that, thinks I). When I say on the back of my hand, I don't mean that my thumb is growing out of the back of my hand (that would be weird), what I mean is this (photo).I did used to bend my thumb further around the back of my hand without realising I had, but like I said, I try to be more careful these days so have only moved it a little. Even so, I still get told off when I inadvertently do that. It's far less entertaining and exciting than someone standing on their own head (I wonder if they worry about foot odor when they do that?)
Anyway, while I was lying in bed in the early hours I had the great idea of at least exercising one leg by doing leg raises. Okay, yes, if I was a healthy person it may be classed as cheating to use a resistance band to assist a little, but I'm not a healthy person and I need the extra help. I could only do this using my right leg and could not hold the resistance band with my left hand because of my shoulder so, again, just used my right hand. I did sets of side and front leg lifts and did a little triceps work on my right arm, no resistance other than gravity.
I took my time and did the movement very slowly, which adds to the exercise, and also spaced things out. It may not sound an awful lot to many people and back before the pain conditions crept up on me I would have thought the same. Nowadays though, trust me when I say that even that small amount of exercise caused an increase in pain that made me feel quite sick for a while. Despite that I am pleased that I did it. I miss being able to weight train, which I always loved, but something is always better than nothing.
Saturday, 12 September 2015
Is this the world's strangest motivation to exercise?
This is going to sound a little odd, so bare with me, I promise I will explain myself. As anyone who has known me for a while can testify, I am terrified of spiders. I don't mean that I shriek like a baby and squash the poor little arachnid, I mean I scream loud enough to wake the dead. Since I am fairly certain that none of us want zombies walking the earth, I would like to request that all spiders remain outside and do not enter my home.
Unfortunately at 4:00 am this morning, one particular spider decided that it did not want to stick with this restriction. My husband and I were sitting in the living room on the sofa, as lying down was - and is - causing quite a lot of pain around my rib cage. I glanced down at the floor, impersonated a boiling kettle and attempted to exit the room vertically, via the ceiling. It would appear that although me shoving the pouffe across the floor as I attempted to move my legs did cause the invader to pause momentarily, but it soon resumed the attack.
I promise that I am not exaggerating; it was the size of the palm of my hand. I am including the legs in that size estimation as, to me, they are the worst part of the spider. There is a strong possibility that the spiders do have a 'terrify her to death' contract out on me. There have been times in the past when it should not have been possible for any spider to confront me, but... Some eighteen years ago I was walking across a car park in West Bromwich with my mom after checking out a wedding dress shop - in the days before I got my wheels.The rain was torrential; I mean it was so strong that it was bouncing a good three inches off the floor when it hit. We were around a third of the way across the car park when something made me look down; a huge spider was sitting on the car park, in this terrible rain, giving me the evil eye. It is no exaggeration to say that I was both petrified and astounded to see this hairy-legged critter there.
Believe it or not, I am actually a lot better than I used to be. I once missed college because I couldn't get up the stairs to get showered or dressed, I have called friends round to dispose of them and once refused to sleep in my bedroom for several weeks because my dad had squashed a spider on the ceiling. To be fair that had left a spider-gut stain that I just couldn't cope with. I slept in one of the spare bedrooms until dad had disinfected and re-painted the ceiling. Yes, I am full-on phobic rather than a wee bit unnerved by them.
Yet there is something I am more afraid of than spiders; daddy long-legs (crane flies). Those things have lead to some far more dramatic room exits than the spiders. I once ran out of a meeting with senior managers at the DWP, back when I worked there, because a crane fly was dangly-legging its way round the room. Someone did eventually take pity and remove it, but not before everyone had laughed themselves silly.
Oddly this does have something to do with exercise and mobility. As you have probably guessed, it is a little difficult to scream like a siren and run out of the room when you can barely move. Add to that, I am certainly not sitting in my wheelchair all day, as my butt tends to go numb after a while. So, seeing that huge, monstrous beastie has given me motivation to carry on with my physio exercises in the hope that mobility will improve somewhat.
I am continuing to be very careful about what I do and making sure that I don't go overboard with the physio. I will be honest and confess that I haven't yet started my yoga as I can't find the DVD. Yes, I know, bit of a lame excuse really as there are, no doubt, hundreds of low impact yoga videos on the internet. I do want to be careful though, hence the desire to stick with the DVD that JJ - the physio at my GP practice - recommended.
I hope that you are getting on with whatever challenges have cropped up in your life lately - and more than that - I hope that you are coping better with your fears than I am with my arachnophobia.
Unfortunately at 4:00 am this morning, one particular spider decided that it did not want to stick with this restriction. My husband and I were sitting in the living room on the sofa, as lying down was - and is - causing quite a lot of pain around my rib cage. I glanced down at the floor, impersonated a boiling kettle and attempted to exit the room vertically, via the ceiling. It would appear that although me shoving the pouffe across the floor as I attempted to move my legs did cause the invader to pause momentarily, but it soon resumed the attack.
I promise that I am not exaggerating; it was the size of the palm of my hand. I am including the legs in that size estimation as, to me, they are the worst part of the spider. There is a strong possibility that the spiders do have a 'terrify her to death' contract out on me. There have been times in the past when it should not have been possible for any spider to confront me, but... Some eighteen years ago I was walking across a car park in West Bromwich with my mom after checking out a wedding dress shop - in the days before I got my wheels.The rain was torrential; I mean it was so strong that it was bouncing a good three inches off the floor when it hit. We were around a third of the way across the car park when something made me look down; a huge spider was sitting on the car park, in this terrible rain, giving me the evil eye. It is no exaggeration to say that I was both petrified and astounded to see this hairy-legged critter there.
Believe it or not, I am actually a lot better than I used to be. I once missed college because I couldn't get up the stairs to get showered or dressed, I have called friends round to dispose of them and once refused to sleep in my bedroom for several weeks because my dad had squashed a spider on the ceiling. To be fair that had left a spider-gut stain that I just couldn't cope with. I slept in one of the spare bedrooms until dad had disinfected and re-painted the ceiling. Yes, I am full-on phobic rather than a wee bit unnerved by them.
Yet there is something I am more afraid of than spiders; daddy long-legs (crane flies). Those things have lead to some far more dramatic room exits than the spiders. I once ran out of a meeting with senior managers at the DWP, back when I worked there, because a crane fly was dangly-legging its way round the room. Someone did eventually take pity and remove it, but not before everyone had laughed themselves silly.
Oddly this does have something to do with exercise and mobility. As you have probably guessed, it is a little difficult to scream like a siren and run out of the room when you can barely move. Add to that, I am certainly not sitting in my wheelchair all day, as my butt tends to go numb after a while. So, seeing that huge, monstrous beastie has given me motivation to carry on with my physio exercises in the hope that mobility will improve somewhat.
I am continuing to be very careful about what I do and making sure that I don't go overboard with the physio. I will be honest and confess that I haven't yet started my yoga as I can't find the DVD. Yes, I know, bit of a lame excuse really as there are, no doubt, hundreds of low impact yoga videos on the internet. I do want to be careful though, hence the desire to stick with the DVD that JJ - the physio at my GP practice - recommended.
I hope that you are getting on with whatever challenges have cropped up in your life lately - and more than that - I hope that you are coping better with your fears than I am with my arachnophobia.
Monday, 7 September 2015
Photography, dodgy hair cuts, strange fashions and family
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| Me and my dad circa 1975, Saundersfoot. |
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If you compare these with the photographs below, I am sure you'll agree that there is a huge difference in the way that people pose for the camera. Part of that is going to be down to changes in technology. The cameras used to take these two photographs in 1917 and early 1920s would have had much slower shutters speeds to achieve the same quality of photograph, in comparison with today. It looks as though my gran had moved a little here, as her face is slightly blurred and she does look as though she's getting bored. I think another big thing is the change in the way we dress. Both these photos are not only much more posed, but clothes seem more formal - particularly if you look at the photographs below.
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| Bunt, Pam, Gran, Dad, Chris - I think at Dudley Zoo. |
I know that the earlier photos have been taken in a formal photographers studio while the one from the 1950s and mine from 1975 are outdoors and much more casual, but even so all of the photographs are, to some degree posed. The photographer has had to choose when to take the photo, from what angle, who and what to include, as well as all the decisions involved in shutter speed, aperture, focus and so on. In truth, there isn't any such thing as a completely natural photograph, because even if the subject is unaware of the camera, the photographer is making all those decisions and creating the image that they want you to see.
Personally, I'm just glad that fashion has changed and become more casual, even if it has included some dodgy mom hair-cuts when it came time for school photographs, as evidenced by the photo of me and my brother, below. Yes, that is me in a dress - not something you're likely to see repeated all that often. I would say that I was around 3 in that photograph, with my brother, Simon, still under one year old. Thank you for tolerating my fascination with photography and social history. Believe me, I love to see everybody's photographs on social media - even selfies - though I do admit that I am less keen on photographs where people are trying to imitate ducks...
Sunday, 6 September 2015
Evil puppeteers jerking me around
Seeing the dawn from the wrong side once again, I am reaching the point where I just don't quite know how to get my body working well enough to sleep when I am supposed to. As a life-long insomniac I have tried just about every trick in the book, from drinking warm milk and avoiding television or the internet for an hour before bed, to listening to hypnosis tapes designed to help people sleep.
Unusually for me it isn't the pain that has been keeping me awake. It is the muscular jerking that is putting paid to nice relaxing sleep and pleasant dreams - if you can count being a kick-ass, sword wielding zombie killer in your dreams as pleasant. The muscular jerking first raised its ugly head a couple of years ago, just very occasionally at first, then increasing more and more.
It is kind of hard to describe to anyone who hasn't experienced something similar, but I am going to try. Does it make sense if I say that it feels like an electric shock suddenly shooting down from my elbow, zipping down my arm, through my hand and into my fingers? It hits my hand like a hammer, jerking my hand up and open or slamming it down onto the bed or the keyboard that I can't use. Things have started to be thrown across the room not by a poltergeist but by the evil puppeteer who is controlling my movements.
My GP did say to me that muscular jerking is rare with gabapentin, that it is more usual for it to stop as a result of the medication. I appear to have gone with my usual trick of doing the opposite - something a little childish that I normally relish!
As the medication change hasn't done the trick, I am going to try something else. I am going to try a combination of using a TENS machine on my arms to see if that helps and - not at the same time - I am going to try using light weights and just doing some bicep curls and maybe a little triceps work. I am going to be sensible and try not to get competitive with myself. I need to try something, but also go about this intelligently. If anyone sees me putting anything online anywhere that makes it looks like I am being an idiot about things, please deal me a verbal slap to get me back under control!
Unusually for me it isn't the pain that has been keeping me awake. It is the muscular jerking that is putting paid to nice relaxing sleep and pleasant dreams - if you can count being a kick-ass, sword wielding zombie killer in your dreams as pleasant. The muscular jerking first raised its ugly head a couple of years ago, just very occasionally at first, then increasing more and more.
It is kind of hard to describe to anyone who hasn't experienced something similar, but I am going to try. Does it make sense if I say that it feels like an electric shock suddenly shooting down from my elbow, zipping down my arm, through my hand and into my fingers? It hits my hand like a hammer, jerking my hand up and open or slamming it down onto the bed or the keyboard that I can't use. Things have started to be thrown across the room not by a poltergeist but by the evil puppeteer who is controlling my movements.
My GP did say to me that muscular jerking is rare with gabapentin, that it is more usual for it to stop as a result of the medication. I appear to have gone with my usual trick of doing the opposite - something a little childish that I normally relish!
As the medication change hasn't done the trick, I am going to try something else. I am going to try a combination of using a TENS machine on my arms to see if that helps and - not at the same time - I am going to try using light weights and just doing some bicep curls and maybe a little triceps work. I am going to be sensible and try not to get competitive with myself. I need to try something, but also go about this intelligently. If anyone sees me putting anything online anywhere that makes it looks like I am being an idiot about things, please deal me a verbal slap to get me back under control!
Saturday, 29 August 2015
Does anyone else get competitive with themselves?
A serious question; does anyone else get competitive with themselves? I mean stupidly so, to the point where you actually put yourself into a negative situation in some way. I do. I am honest enough to admit that. I do get competitive with other people, although I don't tell them, but it is when I get competitive with myself that I end up getting in trouble. What can I say? I am my father's daughter and I have his competitive nature.
That was okay, to a degree, when I was healthy. I used to enjoy weight-training and bought myself a multi-gym when I was 16; it was great fun and I really enjoyed the competitiveness. The fact that I could see progress in the amount of weight I was using and the number of sets, as well as definition. Yes, I know, looking at me now it's hard to believe, but I did have pretty good biceps, triceps, quads and calves in particular. Leg work was always my favourite.
So when I had a Wii back in 2007, coinciding with an improvement in my health conditions, I did the same as I always had. I got competitive with myself. The game records all your stats so you know how much you are doing each day and whether you have improved. I started off quite sensibly doing five minutes of yoga a day. Now that may not sound a lot to a healthy person, but believe me when you have health conditions with pain and fatigue as two of the main symptoms, it is an awful lot.
My competitive problem reared its head a couple of weeks down the line, when I started to increase the amount I was doing. Now that is something that pacing suggests, that you gradually increase the amount you are doing. The key word in that sentence is 'gradually'. I got carried away. At one point I was up to an hour a day yoga and cardio. I didn't go beyond that, but even though that was spread out through the day in five or ten minute sessions, it was far, far too much for someone whose fibromyalgia and M.E. are as severe as mine.
The result was that I crashed. I ended up being stuck in bed not for days, or weeks, but for months, with only brief periods of being able to get out of bed. This was particularly frustrating because I had started studying with the Open University again in February 2007. Even with that, despite taking the exam at home, I attempted to type it. I almost passed out while I was doing the final essay because I was in so much pain. The sweat was pouring off me and my invigilator was all for calling a doctor out. I called time on the final essay, leaving it part done - another frustration - and that was the point when I crashed.
I can't even say that I learned my lesson, because I didn't. I started volunteering as a tutor with the Expert Patient Programme course in 2008. Rather than doing the requested two courses a year, I did back to back courses. Okay, yes, it is only two and a half hours a week. But for me, that was (and is) a lot. By the time I finished the session I was in so much pain and so fatigued that I would spend the following six days stuck in bed before I got up and repeated my mistakes. I volunteered for every training course, award event and promotion event that I could. You would I would learn at some point, but no, I didn't.
.
The reason I am telling you all this is because by being honest I am hoping that I can learn from my past mistakes and begin to gradually improve. I am not expecting miracles, I am simply going to take baby-steps and be thankful for any small improvement that I may have. I have spent most of the last year in bed and my hope is to improve enough so that I will be able to to out of bed every day. That is my first goal and I am not going to get too competitive with myself. If anyone suspects that I am getting too competitive, please feel free to tell me off!
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| Me and my dad |
That was okay, to a degree, when I was healthy. I used to enjoy weight-training and bought myself a multi-gym when I was 16; it was great fun and I really enjoyed the competitiveness. The fact that I could see progress in the amount of weight I was using and the number of sets, as well as definition. Yes, I know, looking at me now it's hard to believe, but I did have pretty good biceps, triceps, quads and calves in particular. Leg work was always my favourite.
So when I had a Wii back in 2007, coinciding with an improvement in my health conditions, I did the same as I always had. I got competitive with myself. The game records all your stats so you know how much you are doing each day and whether you have improved. I started off quite sensibly doing five minutes of yoga a day. Now that may not sound a lot to a healthy person, but believe me when you have health conditions with pain and fatigue as two of the main symptoms, it is an awful lot.
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| The best I had been for over three years; I managed a boat ride and sitting on the beach. |
My competitive problem reared its head a couple of weeks down the line, when I started to increase the amount I was doing. Now that is something that pacing suggests, that you gradually increase the amount you are doing. The key word in that sentence is 'gradually'. I got carried away. At one point I was up to an hour a day yoga and cardio. I didn't go beyond that, but even though that was spread out through the day in five or ten minute sessions, it was far, far too much for someone whose fibromyalgia and M.E. are as severe as mine.
The result was that I crashed. I ended up being stuck in bed not for days, or weeks, but for months, with only brief periods of being able to get out of bed. This was particularly frustrating because I had started studying with the Open University again in February 2007. Even with that, despite taking the exam at home, I attempted to type it. I almost passed out while I was doing the final essay because I was in so much pain. The sweat was pouring off me and my invigilator was all for calling a doctor out. I called time on the final essay, leaving it part done - another frustration - and that was the point when I crashed.
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| My graduation in November 2013 |
I can't even say that I learned my lesson, because I didn't. I started volunteering as a tutor with the Expert Patient Programme course in 2008. Rather than doing the requested two courses a year, I did back to back courses. Okay, yes, it is only two and a half hours a week. But for me, that was (and is) a lot. By the time I finished the session I was in so much pain and so fatigued that I would spend the following six days stuck in bed before I got up and repeated my mistakes. I volunteered for every training course, award event and promotion event that I could. You would I would learn at some point, but no, I didn't.
.
 |
| The Mayor of Dudley, with myself & Ann Tee, there as representatives of the EPP volunteer tutors |
The reason I am telling you all this is because by being honest I am hoping that I can learn from my past mistakes and begin to gradually improve. I am not expecting miracles, I am simply going to take baby-steps and be thankful for any small improvement that I may have. I have spent most of the last year in bed and my hope is to improve enough so that I will be able to to out of bed every day. That is my first goal and I am not going to get too competitive with myself. If anyone suspects that I am getting too competitive, please feel free to tell me off!
Wednesday, 26 August 2015
A seriously sweet win!
Comping is a wonderful hobby; like any other hobby there are times when it is more fun and times when you just get bored and maybe stop doing it for a few weeks. I had a couple of weeks last month where I didn't enter any competitions at all and a couple more weeks where I entered a few here and there.
I often think that it doesn't matter whether the win is large or small, it can be just as exciting to receive that winning email (known as WEM in the comping world), social media message or good old-fashioned letter. Today I have received two prizes that I won a week or two back, the first bought a smile to my face when I opened it:
I won these courtesy of New Magazine and Maoam via New Magazine's twitter page. Have to say that the bag was opened for testing purposes *cough* not long after the had been unpacked.
The other prize I received today was strip spot-lights, which are going in the hallway to brighten it up as we don't have windows there. I will take a photograph of them once they are up so that I can properly thank the sponsors. I do think it is important to thank companies for running competitions. Although we all know that they run competitions for the express purpose of promoting their products, they don't have to promote them in this particular way; I think that thanking them for doing so is a great way to let them know that we appreciate it and that it is working as a way to get new people looking at their products.
I often think that it doesn't matter whether the win is large or small, it can be just as exciting to receive that winning email (known as WEM in the comping world), social media message or good old-fashioned letter. Today I have received two prizes that I won a week or two back, the first bought a smile to my face when I opened it:
I won these courtesy of New Magazine and Maoam via New Magazine's twitter page. Have to say that the bag was opened for testing purposes *cough* not long after the had been unpacked.
The other prize I received today was strip spot-lights, which are going in the hallway to brighten it up as we don't have windows there. I will take a photograph of them once they are up so that I can properly thank the sponsors. I do think it is important to thank companies for running competitions. Although we all know that they run competitions for the express purpose of promoting their products, they don't have to promote them in this particular way; I think that thanking them for doing so is a great way to let them know that we appreciate it and that it is working as a way to get new people looking at their products.
Monday, 24 August 2015
Mobility, exercise and pacing.
I have been thinking about what type of exercise is best for me given my mobility issues. So far I have narrowed the list down to Yoga and Tai Chi. Both would be difficult and some movements would be well beyond my ability, but I think that both would be beneficial. I've popped in a link to the NHS website about these forms of exercise. You know as well as I do that there are a million and one websites out there and different websites will suit different people
Past experience has taught me that I have a tendency to not listen to my body and try to do too much. I compete with myself and push myself to the point where my health ends up suffering. What I want to do this time is to try a little common sense and get my husband involved as I guarantee that he will stop me going too far.
As, more often than not, I am too ill to manage to get out of bed, let alone the flat, I am going to have to make some adjustments. I think the best way of doing this is going to be by using pacing. Most of my friends who are living with chronic health conditions will know at least a little about pacing. For those who don't, this is how it was explained to me:
Once you have the average, you've got your guideline. That is what you should aim to stick to, at least for the first week. The point of pacing is to try and help you manage a long-term condition and to improve your current abilities. Once you have your guidelines and tested them out to make sure that they work even on your worst days, then you can start to build them up. It is up to you how you choose to do that, whether it's a minute at a time or ten minutes. What I would say is don't try to build up too quickly and make sure that you include rest and relaxation into your day. That's something I have done in the past and regretted it.
This is a really basic description and before you try pacing, I would suggest talking to your medical practitioner team, whether that is your GP, your consultant or your physio. Pacing really can make a positive difference if you do it correctly. From my point of view the most important thing is making sure you include sufficient rest and relaxation. The reason I think it is particularly important is because I have failed to do that on more than one occasion and ended up making myself worse than when I started. That is a very real risk with M.E. as well as fibromyalgia, Lupus, CRPS and a number of other chronic health conditions.
So my first task over the next fortnight is to establish my baselines and find a decent Yoga or Tai Chi game for the Wii or XBox or a DVD. In the past my baselines have been as low as a minute. It doesn't matter where I start out, it's the fact that I do that counts.
Past experience has taught me that I have a tendency to not listen to my body and try to do too much. I compete with myself and push myself to the point where my health ends up suffering. What I want to do this time is to try a little common sense and get my husband involved as I guarantee that he will stop me going too far.
As, more often than not, I am too ill to manage to get out of bed, let alone the flat, I am going to have to make some adjustments. I think the best way of doing this is going to be by using pacing. Most of my friends who are living with chronic health conditions will know at least a little about pacing. For those who don't, this is how it was explained to me:
- Open up a spreadsheet (or paper record) for each 'activity' that you do, such as walking, standing, sitting, lying down, showering etc.
- Aim to keep records for at least a week, longer if possible. Make sure that you have included both your best and your worst days; this is important in establishing a true & correct baseline. You should record how long you can do each activity for, making sure that you stop before it becomes uncomfortable.
- Once you have your record, you should add each individual task's times up then divide by the number of times you performed that task in order to get an average.
- When you have the average, you will need to halve that figure. That is your guideline.
Once you have the average, you've got your guideline. That is what you should aim to stick to, at least for the first week. The point of pacing is to try and help you manage a long-term condition and to improve your current abilities. Once you have your guidelines and tested them out to make sure that they work even on your worst days, then you can start to build them up. It is up to you how you choose to do that, whether it's a minute at a time or ten minutes. What I would say is don't try to build up too quickly and make sure that you include rest and relaxation into your day. That's something I have done in the past and regretted it.
This is a really basic description and before you try pacing, I would suggest talking to your medical practitioner team, whether that is your GP, your consultant or your physio. Pacing really can make a positive difference if you do it correctly. From my point of view the most important thing is making sure you include sufficient rest and relaxation. The reason I think it is particularly important is because I have failed to do that on more than one occasion and ended up making myself worse than when I started. That is a very real risk with M.E. as well as fibromyalgia, Lupus, CRPS and a number of other chronic health conditions.
So my first task over the next fortnight is to establish my baselines and find a decent Yoga or Tai Chi game for the Wii or XBox or a DVD. In the past my baselines have been as low as a minute. It doesn't matter where I start out, it's the fact that I do that counts.
Saturday, 22 August 2015
Weather plus a cold equals fibro hell and a postponed trip
I was supposed to have travelled to Wales last week for a fortnight's respite. Unfortunately my immune system decided against that and instead decided that a cold would be a really fun thing to have. I would rather have had my trip to Wales. Still, I do believe that things happen for a reason and in this case perhaps the reason was that it has barely stopped raining all week, according to my mom, who has been about 15 miles away from where I go, since Wednesday.
Because I wasn't in Wales I could, in theory, have gone to Weight Watchers on Wednesday instead. I say 'in theory' because what happened was that I slept all day. As you may already know, one of the primary symptoms of fibromyalgia is fatigue. The cold has made things worse; I haven't had the strength or energy to wash my hair, meaning it feels disgusting. Greasy hair is my pet hate, so the very first thing I am going to do the moment I have enough energy is to wash my hair.
My hair, currently blue, is one of my 'things'. We all have things that we insist has to be okay before we leave the house and for me, it is my hair. That tells you straight away that I haven't been out of the flat all week. The main reason for this (apart from my hair!) is that I don't have the energy to get down the stairs let alone back up them.
However, as I've said before, just because I have struggled to get out of bed, even with assistance, it doesn't mean that I can't do movement of some description. This week, movement has consisted of very gently using my resistance band to help raise each leg off the bed in repetitions of five. I am then repeating that later in the day. I am using a combination of thigh, stomach and arm muscles to do that. Believe me that while I am aware that doesn't sound like a lot - and for most people it wouldn't me - but for me, it is. Energy-wise even just that amount of movement feels as though someone has stuck a needle in me and sucked all the energy out. My muscles are drained like flat batteries!
So, that is as much as I have been up to this week, apart from entering competitions on the internet which, unfortunately for me, doesn't count as exercise. I hope that it has been a better week for you this week, despite the weather.
Because I wasn't in Wales I could, in theory, have gone to Weight Watchers on Wednesday instead. I say 'in theory' because what happened was that I slept all day. As you may already know, one of the primary symptoms of fibromyalgia is fatigue. The cold has made things worse; I haven't had the strength or energy to wash my hair, meaning it feels disgusting. Greasy hair is my pet hate, so the very first thing I am going to do the moment I have enough energy is to wash my hair.
My hair, currently blue, is one of my 'things'. We all have things that we insist has to be okay before we leave the house and for me, it is my hair. That tells you straight away that I haven't been out of the flat all week. The main reason for this (apart from my hair!) is that I don't have the energy to get down the stairs let alone back up them.
However, as I've said before, just because I have struggled to get out of bed, even with assistance, it doesn't mean that I can't do movement of some description. This week, movement has consisted of very gently using my resistance band to help raise each leg off the bed in repetitions of five. I am then repeating that later in the day. I am using a combination of thigh, stomach and arm muscles to do that. Believe me that while I am aware that doesn't sound like a lot - and for most people it wouldn't me - but for me, it is. Energy-wise even just that amount of movement feels as though someone has stuck a needle in me and sucked all the energy out. My muscles are drained like flat batteries!
So, that is as much as I have been up to this week, apart from entering competitions on the internet which, unfortunately for me, doesn't count as exercise. I hope that it has been a better week for you this week, despite the weather.
Monday, 17 August 2015
Health and hope of improvement
I know that this often sounds a little strange to people, but I promise you I am telling the truth; my health improves quite a lot when I am particular environments. At home my various medical conditions mean that I spend a great deal of the time in pain or experiencing extreme fatigue. I also have sensitivities that mean bright light, loud noises, repetitive noises and noises of particular pitches, certain scents or chemicals result in physical pain. The scents and chemicals part also mean that my skin starts of with a burning sensation, then goes red and will either blister or swell.
I go away to Wales, where I am out in the countryside and away from many of those triggers and I find that far from being forced to spend 80% of my time bed-bound, which is what happens at home, I can be in the living room looking out over the fields. There is a very good chance that I will be able to sit outside, still with dark glasses on, but I won't end up having to spend the next week recuperating just for sitting outside. I may even be able to go to the beach; several of the beaches in Pembrokshire have beach-wheelchairs, which have enormous tyres so that they don't sink in the sand.
One thing that I know I thought when I first became ill was that I didn't realise just how difficult things are for people with disabilities in this country. A lot of businesses just don't think about accessibility because the person in charge often doesn't have a disability themselves, or immediate relatives with disabilities. Current legislation does require them to ensure that their business is accessible to ever member of the public, if indeed it is a business that deals with the public. Reasonable adjustment is what it is known as in the legislation.
Now obviously a 12th century castle isn't going to have lifts inside and it would be difficult to do so; asking them to do so would not be a reasonable adjustment. The shops down in Kingswinford with large steps up into the shop should all, however, have a portable ramp so that wheelchair users can access the shop. The only place I have seen that has gone one step further and altered the entrance so that there is a built-in ramp is the Tenovus charity shop.
Pembrokeshire, which is where I go for my particular brand of respite, has worked hard over the past few years to ensure that all parts of the county are accessible to everyone. Even the coastal path, which is around 185 miles in total, has been made as accessible as possible. Not that I can self-propel anyway, but it is nice to hear that one county is taking its responsibilities to all of its residents and visitors seriously.
I go away to Wales, where I am out in the countryside and away from many of those triggers and I find that far from being forced to spend 80% of my time bed-bound, which is what happens at home, I can be in the living room looking out over the fields. There is a very good chance that I will be able to sit outside, still with dark glasses on, but I won't end up having to spend the next week recuperating just for sitting outside. I may even be able to go to the beach; several of the beaches in Pembrokshire have beach-wheelchairs, which have enormous tyres so that they don't sink in the sand.
One thing that I know I thought when I first became ill was that I didn't realise just how difficult things are for people with disabilities in this country. A lot of businesses just don't think about accessibility because the person in charge often doesn't have a disability themselves, or immediate relatives with disabilities. Current legislation does require them to ensure that their business is accessible to ever member of the public, if indeed it is a business that deals with the public. Reasonable adjustment is what it is known as in the legislation.
Now obviously a 12th century castle isn't going to have lifts inside and it would be difficult to do so; asking them to do so would not be a reasonable adjustment. The shops down in Kingswinford with large steps up into the shop should all, however, have a portable ramp so that wheelchair users can access the shop. The only place I have seen that has gone one step further and altered the entrance so that there is a built-in ramp is the Tenovus charity shop.
Pembrokeshire, which is where I go for my particular brand of respite, has worked hard over the past few years to ensure that all parts of the county are accessible to everyone. Even the coastal path, which is around 185 miles in total, has been made as accessible as possible. Not that I can self-propel anyway, but it is nice to hear that one county is taking its responsibilities to all of its residents and visitors seriously.
Friday, 14 August 2015
The rewards of comping
It's funny how even the smallest prize can bring a smile to your face when you win. This week has felt really stressful, purely because some small things have cropped up. However this week I have had four winning notifications. The largest of these was an email from litecraft today to let me know I had won their 'Great British Bake-off' inspired competition. The prize was any one of four lights that I got to choose.
I also had a notification from La Redoute that I had won an Abrams and Chronicle book, plus a message from New! Magazine that I have won a packet of Maoam Rhubarb pinballs. Those will be heading straight for my stomach once they arrive. But that doesn't cover all of my wins for this week; I have also won a couple of books and keyrings that I am looking forward to receiving.
Comping is an excellent hobby and can be great fun. There an awful lot of very friendly people out there who are willing to help people new to the hobby understand what they need to do to enter and how to avoid the pitfalls. One of the biggest things has to be people not reading instructions properly and so they end up not entering the competition. That, of course, means that they never win. Since that works the same in exams - people not reading the question properly and so not achieving high grades - I'm just going to go with thinking that it gives me a better chance of winning!
I also had a notification from La Redoute that I had won an Abrams and Chronicle book, plus a message from New! Magazine that I have won a packet of Maoam Rhubarb pinballs. Those will be heading straight for my stomach once they arrive. But that doesn't cover all of my wins for this week; I have also won a couple of books and keyrings that I am looking forward to receiving.
Comping is an excellent hobby and can be great fun. There an awful lot of very friendly people out there who are willing to help people new to the hobby understand what they need to do to enter and how to avoid the pitfalls. One of the biggest things has to be people not reading instructions properly and so they end up not entering the competition. That, of course, means that they never win. Since that works the same in exams - people not reading the question properly and so not achieving high grades - I'm just going to go with thinking that it gives me a better chance of winning!
Thursday, 13 August 2015
Mobility issues, exercise and weight
I was finally well enough to return to Weight Watchers last night at the Our Lady of Lourdes Catholic Church in Kingswinford. The meeting I go to is run by a lovely lady who understands the problems I face as a wheelchair user whose medical conditions result in extreme levels of fatigue and high levels of medication. Jane has given me some really useful suggestions over time and although she works for Weight Watchers, her focus has never solely been about losing weight. She has, for as long as I've been going there (quite a while), also focused on health, the benefits of eating healthily and exercising.
A few months back I switched medication and this has had the effect of making me feel even more fatigued than usual. By fatigue I don't mean tired; fatigue is something different and far more extreme than being tired is. For me fatigue is present in my muscles, making it difficult at times to so much as raise my arms a few inches. This often feels very similar to lactic acid, sort of burning and as though someone has sucked all the energy out. In addition, I get very mentally fatigued and can't think; this presents as the well-known by fibromites, brain-fog. You'll be lucky to get a word you recognise out of me at times!
Still, that doesn't mean that I can't eat healthily and do a little exercise, in my own way. Or does it? Well, yes and no. There are times when I struggle to swallow most types of food. At these times I can only manage small amounts of either soup or very soft foods, such as mashed potato. Although I often feel nauseous at these times, I rarely vomit. That does mean that at times I struggle to eat the right nutrients; given that I have fibromyalgia it is particularly important that I get those nutrients.
The lack of mobility, which includes that I am often bed-bound, does mean that exercise is difficult. It doesn't mean that it is impossible. Exercise takes all forms and can be tailored to suit just about everyone. For my brother, a bike-ride could be his exercise, for my husband - before he was injured - a long-distance training run, a couple of hundred sit-ups and the same in press-ups was not unheard of. In my case, there are days when - from my position lying down - raising my hands a few inches off the bed and repeating this a set number of times may be all I can manage for that day. Still, it is movement and movement is something that we should all be aiming for. I know that some people with mobility issues find that their caregiver worries about them exercising, so I would like to include a link to this article, as I think it makes some very good and useful points.
Of course, the lack of mobility does mean that I am perhaps more prone to weight gain than I was back in my able-bodied days. I can't deny that recently tic-tacs have formed a big part of my diet (appalling, I know); this has been because my medication leads to excessively dry-mouth and sucking a small sweet helps to relieve that. I do need to find an alternative that isn't quite so full of refined sugars. Eating the right foods is becoming more and more important as my health continues to deteriorate and I get older. I'm into my 40s now and I don't want to continue gaining weight. I want to be heading in the opposite direction and aiming for a healthier weight. Let's face it, if my backside gets much bigger I'm going to get wedged in my wheelchair!
At the moment one of my big inspirations is someone I grew up, who I knew from the age of two. She has lost four and a half stone, and is looking amazing. I am not going to put any pictures of her up, as I don't have her permission, but I am sending her the link to this to let her know that I am so proud of her and that she has inspired me. I wish her luck on the rest of her journey and will hopefully see her at Motley Crue's gig in Birmingham later this year.
A few months back I switched medication and this has had the effect of making me feel even more fatigued than usual. By fatigue I don't mean tired; fatigue is something different and far more extreme than being tired is. For me fatigue is present in my muscles, making it difficult at times to so much as raise my arms a few inches. This often feels very similar to lactic acid, sort of burning and as though someone has sucked all the energy out. In addition, I get very mentally fatigued and can't think; this presents as the well-known by fibromites, brain-fog. You'll be lucky to get a word you recognise out of me at times!
Still, that doesn't mean that I can't eat healthily and do a little exercise, in my own way. Or does it? Well, yes and no. There are times when I struggle to swallow most types of food. At these times I can only manage small amounts of either soup or very soft foods, such as mashed potato. Although I often feel nauseous at these times, I rarely vomit. That does mean that at times I struggle to eat the right nutrients; given that I have fibromyalgia it is particularly important that I get those nutrients.
The lack of mobility, which includes that I am often bed-bound, does mean that exercise is difficult. It doesn't mean that it is impossible. Exercise takes all forms and can be tailored to suit just about everyone. For my brother, a bike-ride could be his exercise, for my husband - before he was injured - a long-distance training run, a couple of hundred sit-ups and the same in press-ups was not unheard of. In my case, there are days when - from my position lying down - raising my hands a few inches off the bed and repeating this a set number of times may be all I can manage for that day. Still, it is movement and movement is something that we should all be aiming for. I know that some people with mobility issues find that their caregiver worries about them exercising, so I would like to include a link to this article, as I think it makes some very good and useful points.
Of course, the lack of mobility does mean that I am perhaps more prone to weight gain than I was back in my able-bodied days. I can't deny that recently tic-tacs have formed a big part of my diet (appalling, I know); this has been because my medication leads to excessively dry-mouth and sucking a small sweet helps to relieve that. I do need to find an alternative that isn't quite so full of refined sugars. Eating the right foods is becoming more and more important as my health continues to deteriorate and I get older. I'm into my 40s now and I don't want to continue gaining weight. I want to be heading in the opposite direction and aiming for a healthier weight. Let's face it, if my backside gets much bigger I'm going to get wedged in my wheelchair!
At the moment one of my big inspirations is someone I grew up, who I knew from the age of two. She has lost four and a half stone, and is looking amazing. I am not going to put any pictures of her up, as I don't have her permission, but I am sending her the link to this to let her know that I am so proud of her and that she has inspired me. I wish her luck on the rest of her journey and will hopefully see her at Motley Crue's gig in Birmingham later this year.
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