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.

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.

Friday the 13th: scary day or just another friday?

I was already about half way through Friday 13th Part 4 when I read a post on social media mentioning that it is Friday 13th November today. I should probably pay a little more attention to the calendar!



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

So, where to superstitions come from? I would have to say that for me, there are some that probably come about through common sense. I'm not daft enough to walk - or in my case roll my wheelchair - under a ladder when someone is working on it. It might fall on me, or if someone is using it I may get splatted with paint or a piece of guttering fall on my head. However I still think it is more likely that someone working up a ladder is going to get hurt than someone walking underneath one.


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?

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.

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

 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.

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.

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.

"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.

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.

Photography, dodgy hair cuts, strange fashions and family

Me and my dad circa 1975, Saundersfoot.

I have just been looking through some old photographs that I scanned and saved onto the computer several years ago. I hadn't realised that I had transferred them over to my laptop too, so it was rather a nice surprise to find them sitting in a file waiting for me to open it up. Isn't it strange looking back and seeing your parents looking so young? This is a photograph of me and my dad at Saundersfoot beach, I would guess at 1975 judging by my age. For the record I have no plans to terrify the public and copy the clothing from the photograph. I promise that you are all safe.

As a social history addict, I adore looking at old photographs, particularly of family. I was lucky enough to have borrowed all my Gran's photo albums and to have scanned quite a lot of them in. Some of the photographs that I like the best are from the early 1900s up to the late 1930s, predominantly of my Gran and her family. It's wonderful to see the change in the way that we take and pose for photographs over the last hundred years. For instance, the photograph to the left is my Grandad and his mom in 1917, while the one below that is my Gran (standing on the chair), her three sisters and their nanny. I'm not sure of the date of this one, but my Gran was born 1919, so I would guess at early 1920s. My Great Grandmother passed away from uterine cancer when my Gran was still quite young, after spending time in an asylum. I am unsure of the reason that she had been committed, and sometimes wonder if it was due to post-natal depression or some similar condition.

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.

The photograph immediately to the left shows my Great Grandmother, Jessie, and her grandchildren - from left to right they are Pam, Georgina (Bunt), my dad Pete and Christopher. I love the differences in how the photographs are taken; everything is so much more casual. Shutter speeds, films, heck everything to do with photography has improved by around 1950 when this was taken. But still, if you look at this in comparison to the photo of me and my dad, clothing is still much more formal and covering much more - and, is my uncle Chris wearing a tie while paddling in the sea? I am finding that a little on the weird side.

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...

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!

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.

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.

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.

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!

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.

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:

• 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. 

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.

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.

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! 

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.

Dead Rising: Watchtower, movie review.

I have been doing online competitions since the beginning of the year and it is proving to be an entertaining hobby. I have won quite a variety of things, ranging from DVD's to vouchers for a holiday cottage. The latest prize to drop onto the doormat (also a prize) was a DVD of 'Dead Rising: Watchtower'. I'm going to give you early warning that I am about to discuss the contents of the film and the storyline.

Based on the video game series this movie was far more entertaining than I was expecting it to be. Set some ten years after the initial outbreak survivors of zombie bites receive a medicine called 'zombrex' which keeps them from changing into one of the living dead with a taste for human flesh. When a zombie outbreak occurs, a twelve-mile wall is erected around the town to prevent the spread. Healthy people are directed to a particular location within the town, where the large number of bite survivors from previous outbreaks are given their preventative medication.

The sarcastic journalist hero from the earlier games, Frank West, makes an appearance in this film as an expert guest on a news show that is covering the outbreak. He manages to frustrate and anger the news-reporter within moments of first opening his mouth, as he insists that the residents trapped within the walls are all going to die. 

Inside the walls journalist duo of camera woman Jordan and reporter Chase are after a scoop that will make them famous, or at least Chase is. The duo become separated as the preventative medication fails to work and those who should be safe, have a sudden desire for human flesh. Jordan makes it out, Chase is trapped inside with two women who seem to have a far better grasp of the realities of zombie fighting than the reporter does.

Between zombies, bike gangs, a government willing to deploy the most extreme of tactics in order to contain the zombie outbreak and - worst of all from my point of view - a clown zombie (argh!) Chase, Crystal and Maggie have a hard task just trying to stay alive, let alone making it out of the town. Meanwhile, Jordan is having her adventures as she tries to prove that she is not infected, after witnessing FEZA and the police shooting those fleeing the zombies as they approached the gate to freedom. Just who is the bad guy and will she make it out alive? Good questions and not something I am going to answer. Instead I will leave you to watch the film and find out for yourselves.

What I particularly like about this movie is that the zombies act like zombies, not some warped CGI version crawling along the ceiling. The action moves along at a good pace with plenty of dark humour included; at times you don't quite know whether to laugh or cringe and this combination works well. It isn't an all-out rom-com-zom movie like Shaun of the Dead, as Simon Pegg put it, but it is still entertaining.

If, like me, you enjoy a good zombie movie, then this one is worth a watch. It isn't the best zombie movie you are going to come across - for me Romero remains the best - but it is a decent film with interesting characters and a pretty good plot line. I would definitely recommend it.

Back, medicated and choosing to smile

First thing: I'm sorry about vanishing again. I want to explain why, but I don't want to sound as though I an whining. I promise you that I am not.

My health decided that it was about time I was reminded just how bad the pain was when I first became ill. I actually have several chronic pain conditions, one or two of which flare up every now and again but usually stay around mid-range. My worst condition(s), fibromyalgia and pain amplification syndrome, hover high up on the pain chart. All conditions decided to hit me at once with their worst efforts. I am very grateful that I have much better medication now than I did eleven years ago when the fibromyalgia decided to first make its presence felt. It was the worst pain I have felt for a long time, it did hit that 10 on my personal pain-scale. I am still embarrassed that I cried over it.

I will say that I am also very embarrassed about having to phone up my husband and ask him to come home to give me a pain relief injection while he was visiting his mom and taking her food shopping. It is also something that I am very grateful he asked to be taught how to give the injections, as the very busy emergency G.P. service takes several hours before a doctor attends. That is several hours where I am in agony and my husband gets to witness me in agony. Not pleasant for either of us. I swear like a navvy at the best of times, you really don't want to hear my language when I am in that much pain!

During the several hours it takes to get an out-of-hours doctor to visit we first have to telephone to request the visit; at that point the caller is questioned about why we need the service. They almost always ask to speak to me; not an easy task as I have some speech problems and I'm usually struggling not to scream with pain at that point. The calls and questions usually take place over one to two hours, sometimes longer. After the initial call from us, we then receive a call back from a nurse, who asks the same questions again. Finally we receive a call from the doctor who not only asks the same questions for a third time, but also told me - the last time I used the service - that I had called too often (two to three times a year) and they would no longer attend. He told me that I would have to go to the hospital in future.

While I appreciate that they are extremely busy and it must be frustrating for them that they had to attend my home more than once a year, I am bed-bound a great deal of the time. If I wasn't then I would have attended the walk-in out of hours clinic located near to/at the hospital and wouldn't have telephoned them in the first place. If I cannot stand up, then it is pretty much impossible for me to get out of bed, get dressed, walk down the stairs, to the car and so on. I felt very stuck and very angry when they first told me this. I was especially angry that the doctor who attended was not well versed in giving injections. This was something I discussed with the NHS and several doctors and nurses that I know and I am aware of the reason behind a number of out-of-hours doctors being poor at giving injections. It is also one of the reasons that I am very grateful that my husband was taught how to give IM injections.

It is frustrating for medical professionals not to be able to cure their patients. It is a damn site more frustrating to be the patient that cannot be cured. How you handle things though, is your choice. Our emotions are affected by body chemistry, circumstance, our life and life-style, but I strongly believe that there is an element of choice in there. I choose not to be a miserable, moaning and angry individual over my health. What would be the point? The person I am most going to upset if I react and behave like that is me. I can think of no good reason why I would want to make myself miserable and angry. We all have bad days, and we are allowed to. Forgive yourself for those bad days and keep moving forward with a  smile. One day we are all going to be able to kick our health issues - or other life issues - up the arse and throw them in the bin. I'm looking forward to that day and saving an evil cackle followed by a big smile for the occasion!

Warrant officers and power companies

I don't know about you guys, but it's definitely unusual to be awakened by the sound of someone hammering on a door and yelling "Warrant Officer - Scottish Power. Open up!" repeatedly. No, not our front door, thank goodness. It was the flat downstairs, but because it has been so muggy at night we have kept windows open in the hope that some stray breeze will find it's way in.

Rather, I should say that we have kept the windows on the vent opening because I am afraid of giant eight-legged beasties finding their way in during the night and eating me alive. Since my husband is not keen on moths, I have tried to say that keeping the windows like that is for his benefit. He pointed out that, unlike me, he tends to hit his fear with a newspaper, which makes them go away - it also makes them flat, but that's besides the point (apparently). I scream and make him catch my fears in a glass; unless that particular fear happens to be a crane fly - a daddy long-legs - in which case, please flatten and dispose as appropriate. Just don't bring it by me. Yes, yes, of course I believe that you are all a) braver than me and b) kinder to things that scare the shit out of you...

Anyway, just at the point the warrant officer appeared to be considering making his own way into the flat, our neighbour finally opened up, or rather his adult son did. As our neighbour works around 60 hours a week at an American Diner he tells me he co-owns in Bilston, he had left home around 6 a.m. leaving his son to deal with the visitors. Once a warrant has been issued  - in this case for non-payment of fuel bill - then the officer assigned by the fuel companies has a right to enter the premises, under British legislation.

Because of the circumstances the engineers who had attended detached/removed the existing metres while the warrant officer looked on. A lot of questions were asked by our neighbour, quite sensibly, and prior to leaving the premises a new pre-paid metre was fitted. I must admit I did think that there was a small flaw in this system as my neighbour was told that he will need to phone a specific number to request a pre-payment card, which will be posted out. Once it arrives he then needs to insert it into the metre in order to 'marry' the two up. He can then start putting money on the card.

My first thought was that they were not going to have any light downstairs. My second thought was that the flat owner was not going to be happy at the pre-payment metre being installed, as the neighbours downstairs are tenants. I did then hear it explained that the metre had £20 already on it to tide them over until the card arrives.

Hearing all this downstairs did get me thinking; in order to reach this stage, the power company will have tried numerous contacts both via post and telephone. There will have also been a court hearing, that you will have been notified of and have a right to attend. The Citizens Advice Bureau (CAB) has current information on what to do if you find yourself in circumstances where you cannot pay your bill. The reality is that power supply companies do not want to cut off their customers. They would much rather an agreement was worked out for you to pay what you owe in affordable monthly amounts. One part of this could be that the power company insists that you have a pre-payment metre installed in order to prevent any future build up of debt. While this does mean that you will be able to keep on top of payments, as you probably know from various television reports, fees for power delivered through a pre-payment metre can be higher.

If you do find yourself in this situation and are struggling to deal with the power company yourself, please seek advice from the CAB or a similar service.

A lovely way to treat disabled customers.

A few of you may have noticed that I am a little hot under the collar today. No, scratch that, I think fuming is probably a much more accurate description. Some of you are in groups that I have already put comments on, but for the rest of you, I will explain below:

Yesterday was weekly shopping day, including taking along my 85 year old mother in law. Because of budget we do not particularly want to drive the ten miles to her home, then nine miles back this way to a local market only to have to repeat the same journey again. We always used to shop at Wolverhampton market, but because of mobility issues we have not been able to do that of late. Instead we thought we would use the Lidl that is local to my mother in law; the Finchfield, Wolverhampton branch.

Not any more. Yesterday involved the usual parking in a disabled bay, popping the blue badge on the dash and heading into the store. Now you all know that I am not capable of so much as getting out of bed most days, but now and then - increasingly rare, I admit - I can manage to leave the flat for an hour or two. Come the time to exit the store and get back in the car and there was a ticket on the car saying that it was incorrectly parked in a disabled bay. On inspection, the blue badge was no longer on the dash, but now on the floor - still visible and still showing the correct side of the badge as it is in a holder. I am not entirely sure how that happened, I can only think that someone bumped into the car quite heavily and it slipped off the dash, where it started out. There are no marks on the car, so it wasn't another vehicle, it must have been a pedestrian.

My husband returned to the store and spoke with the assistant manager, Michael, whose reaction told him that this is not exactly the first incident they have had. He apologised, took a photocopy of both the ticket and the blue badge, then said that although he was unable to deal with it, the store manager would sort it out tomorrow (today in other words) and give us a telephone call. Well, yes, we did get a telephone call, but it was to say that he couldn't do anything and to call customer services. However he then said that if they couldn't sort it out to call him back. I must admit that did not make sense to me, because if he had already said he wasn't responsible and wouldn't/couldn't do anything, what would be the point in calling him back? He was also very reluctant to give his name and the store direct phone number.

I then telephoned customer services and spoke to Danny, who appeared very confused by the idea of fine tickets being issued on Lidl car-parks. He went away, a couple of times, and eventually came back to ask me to send them a photocopy of both my blue badge and the fine-ticket. After advising him that the assistant manager had already taken copies - and signed one for us confirming he had done so - Danny stated that they would contact the store and the matter would be investigated. He confirmed that I would hear something within ten working days.

It does not help that this same fine-issuer (£90!!!) turns tail whenever he receives a verbal response from an able-bodied driver who chooses to park outside the bays, blocking access etc. To me, that appears to be a case of picking on more vulnerable customers to make up the numbers.

I have been told that there is no legislation that forces me to pay this fine, as the incident took place on a private car park. I will research this myself to double-check it, but in the mean-time, I will not be paying a penny. I am more than happy to appear in a court though, in my wheelchair, or appear via Skype from bed if I am unable to move.

Had the store manager been just a little more enthusiastic and a little less reluctant to give even his name, I may not be quite so angry. As it is, I am fuming. I admit it. I am, however, also very concerned at the behaviour of the fine-warden on the car-park and would warn disabled drivers in particular to perhaps think twice about visiting Lidl, especially in Wolverhampton, Finchfield.

E-book or printed, that is the question...

We all know that technology has altered the way that we live, communicate and understand the world around us. One of the biggest innovations in the world of books has been the advent of e-books. No longer do people have to carry around huge bags full of books that weigh heavily on the back as we struggle to haul them about. Now we can carry hundreds of books on one small tablet.

If we choose to, that is.

Many readers prefer to remain with the world of printed novels and I'm sure that none of us would deny that there is something special about picking up a beautifully bound new book. The feel, the weight, the smell and even the sound as you open it up for the very first time... It all adds up to something truly special. And yes, I know, spoken like a true book-worm!

But however special a printed novel is, even I have to admit that there are a few problems. The biggest for me, is storage. I have around eight hundred novels on my kindle at the moment, along with five audiobooks; most of those books are novels that I do not own printed copies of. While I am sure that the elite in our society would not have a problem finding space for an additional eight hundred novels, I definitely would.

Living in a two bedroom flat, there is not the room to house an additional eight hundred books so in that way my kindle has been invaluable in allowing me to read novels I would not have been able to, otherwise. I do, of course, use my local library quite extensively - as we all should if we want to keep the Government from removing them from our locale. But I can't suddenly change my mind in the middle of the night and read a library book that is not already in my possession.

Having the kindle means that I can flick to a different novel with a couple of presses of the keyboard. For me, there is also the additional benefit that the light weight and size of the kindle means that it is less painful to hold. I can only read printed novels on rare occasions now, even with my book stand, as not only are they painful to hold, my eyesight can vary while I am reading. It is much easier to alter the size of the text on an electronic book; something that is impossible on a printed novel.

So, yes, I am a fan of e-books and I do believe that they have a place. However I still love - and always will - printed novels. I have a number of limited edition signed books that mean a lot to me simply because they are beautiful items that deserve a place in my home.

Oh - plus in all honesty I really wouldn't like to troll through an e-book version of some of my academic text books. I have just glanced to my right and my copy of The Oxford Classical Dictionary, third edition revised (Hornblower and Spawforth) looking back at me. I paled slightly at the thought of an e-book version of that.

Twitter and facebook competitions

Everyone has different things that they enjoy, whether that is an energetic hobby like cycling or a slightly more easy-going habit of reading everything in sight. Most people will know by now that I am disabled due to chronic pain conditions, which feels a lot worse than it sounds, meaning that I am unable to participate in any of the more physical hobbies that I used to love; weight training, hiking and swimming have gone the way of the Dodo for me. So instead I have been annoying the hell out of all my friends by comping.

Many of the competitions that I enter are online via social media such as facebook or twitter. One of the things that I have noticed is that when people first begin entering competitions via these sites they don't always enter correctly. This, of course, means that it is impossible for them to win. So I thought I would post a quick guide to entering social media competitions.

For facebook competitions you must enter using the original post that has been put online by the competition sponsor or the site providing the prize. Many people make the easy-to-do mistake of simply sharing the post that appears on their friends timeline. Unfortunately as this is simply your friends shared post, this means that you aren't entered into the competition or giveaway. What you need to do is:

• Click on your friend's shared post to bring up the original - or go to the sponsor's facebook page and look for the original competition post.
• Make sure that you read the instructions carefully - most will simply ask you to like their facebook page, the post and to share. Technically facebook doesn't allow sharing to be part of competition requirements, but many sites put it anyway. I err on the side of caution and share.
• If the instructions say to comment with a particular phrase or ask you a question - make sure that you do so. Check carefully, because I've messed up more than once with this!

For twitter competitions, once again you must make sure that you re-tweet the original post and not the your friend's re-tweet or you will not be entered.

• Again, your options are to either click on the re-tweet until it flicks up a pop-up of the original post, or simply go to the sponsor's twitter profile page and find the original.
• Make sure that you read the instructions carefully - I can't emphasise this enough.
• If it asks you to re-tweet, simply click on the button on the post that looks like two arrows forming a square.
• You may be asked to reply with a message/answer to a question as well as the re-tweet. Make sure that you do so with any hashtag key words or correct answers that they sponsor asks for - and make sure that you use their @address!

And that is pretty much it. The biggest problem that I have seen is people inadvertently replying on a shared post rather than the original. You will find that a lot of the time people do go out of their way to explain this, so if you are unsure about anything to do with entering competitions - just ask a comper!

I am evil. Possibly.

I rather suspect that around about now two very unfortunate telephone cold-callers are equating me with the demonic. At least, I rather hope that they are. Like almost everyone I know, I cannot stand it when I busy doing something only to be interrupted by someone trying to sell me something. Can anyone explain to me why they start off by asking me how I am today, then leaving a pause for me to answer? I have tried experimenting with different answers and no matter what I say, I almost always receive an answer of "Good."

When the phone went for the second time in five minutes I answered, heard the standard (scripted) opening and responded with "No, I am in absolute agony and have been for the last eleven years." I said this is happy tones just to see whether the person on the other end was listening or too busy reading the script to really do so. The reply came; "Good." Really? It's good that I've spent over a decade in pain? Hmm, that's a little insulting and makes it unlikely that I will be contacting your company, should I ever need the product you have just described to me.

I know. I know it is cruel and I know that if I were able to, I would take any job going, including telephone cold-calling, if it put food on the table and paid the bills. But please, come one, at least listen to the person you are calling! It may improve your chances of making a sale.

As to the first phone call, well, yes I was mean there too. I am having a bad week and while I shouldn't take it out on strangers who annoy me by making unwanted telephone calls to my number, it is one of the only forms of entertainment I have at times. The first guy was trying to flog me solar panels through the Government scheme which essentially makes sure that any excess electricity generated goes to the grid and the Government have the money it generates. Plus you still have to pay for night-time electricity. He didn't get far enough to explain that to me because I am genuinely in a lot of pain today. I asked him to put it in writing, to which he replied they don't do that. So I bought up the Equality Act and reasonable adjustments, as I figured sending the details to my home via a leaflet or - better still - sending an email fall under that. He got off the phone very quickly at that point. I wonder if I will receive anything...

How does everyone else deal with telephone sales calls?

How to deal with me; a guide to a mad woman with chronic health issues.

It feels like it has been months since I've been well enough to tolerate a couple of hours out of bed and out of the flat; I know, asking for both is just greedy, right? I'm feeling like being greedy and demanding that my body go along with it, but apparently it has decided to rebel at this suggestion and stick two fingers up at what my mind would like to do. I think that it has been the beginning of October that I last felt even vaguely human. Since then pain levels decided that it would be fun to just shoot through the roof, my speech therapist vanished off the face of the earth and I still haven't had the nerve test that I was told I was supposed to have two years ago.

Just to make things extra fun my little finger decided that the two top sections no longer wanted to be friends with the bottom section and attempted to part ways. Well, they did temporarily part ways until I gave them a sound scolding and manoeuvred things back to their correct position. Pete bandaged my little finger and ring finger together to make sure that I didn't knock it in the night and cause more damage. It has decided to remain reconciled, thank goodness. However my shoulder blade appears to have thought it seemed like a good plan and is painful enough that it is stealing my breath at the moment. Hopefully the bout of rather extreme language will have persuaded it that attempting to do anything untoward and cause me more pain is going to result in either an emergency GP visit or a hospital trip - both of which I hate with a fiery passion. I am choosing to assume that my body and mind agree on that one.

I think that it is incredibly difficult to understand just how tiring and wearing chronic pain can be. I also suspect that because I have a habit of assuming other people are as honest - and blunt - as I have a habit of being, when they ask how I am, they want the truth. I tend to tell the truth; I am not moaning, I find that tedious, I just have a habit of being brutally honest, then I get confused when people react in ways that don't quite fit with my expectations. So, here is a quick guide to me:

• If you ask how I am, I will be honest. It isn't a complaint and I don't expect you to do anything about it. That's what doctors are for.
• If I cancel plans at the last minute - which I often have to - it isn't because I don't want to chat over Skype or have you come and visit. It is because I am in enough pain that I feel like vomiting, even with my vast quantities of medication. I just don't like to tell you that, because most people are a) grossed out and b) don't know how to react.
• I don't want or need you to be sympathetic. I really don't want or need you to pat me on the head or patronise me. All I expect is for people to listen to an answer that they asked for - otherwise, please don't ask. I am quite happy for you to be as honest as I will be. If you want to say "Fucking hell, that blows big-time" then I'm good with that. Or if you want to say "That's shitty and I'm depressed, can we talk about something else?" then again, that's fine. You're being honest with me and I like that. It means I know where I stand.
• I am entitled to have days where I sulk. Pain is bad enough if you break, or dislocate, a limb. It may give you an idea if I say that my finger parting ways with itself may have prompted lots of swearing, then pain level was nowhere near the top end I have on a daily basis.
• Along with the pain I have chronic fatigue. That does not mean I am tired, so please don't tell me that you're tired too because you didn't sleep well. That just pisses me off. I would give my right arm to just be exhausted.
• I get different types of pain and different types of fatigue; the fatigue can be like utter exhaustion where there just isn't enough energy left in my body to lift my hand up a couple of inches. Or it can feel like lactic acid burning through my muscles, in combination with utter lack of any ability to move at all. I can also be mentally fatigued and have no ability to think, speak, or know my own name.
• Pain can be deep muscular and tendons - sort of feels like my bones and muscles are swollen and fighting each other. That is the one I hate the most. Then there is a surface pain like extreme skin sensitivity where even a bed sheet can be so painful I feel like vomiting. There are times that passes over into feeling as though I am about to black out.
• That pain and fatigue is there all the time. If 10 is the worst pain you can imagine, then my average is an 8. However since October it has mostly been 10.

I did say that I have a tendency towards honesty and bluntness, but I have tried to behave a little there.

Fibro also has a lot of other symptoms that people may not be aware of such as sensitivity towards heat, light, sound, smells. I have all of those and to a degree always have - although they did get a lot worse with the fibro. If I have a problem with a scent, whether it be fabric conditioner (almost always) or perfume, I am not being rude. I am being ill. I am sorry if me having to leave or going white and sick upsets people, it is not intentional. It is just part and parcel of that wicked little beast named fibro.

So, that's me talked out for the day. What's up with everyone else in the world?