Prizes and plans

We have all seen competitions advertised either online or in newspapers and a variety of other formats, but I think that many of us assume that we will never win anything and so we don't bother filling in our details. I have entered competitions on and off over the years but aside from the odd prize here and there have never had much luck.

Just after the beginning of December I decided to join a few online compers communities; places where dedicated compers share details of competitions they have seen (and probably entered). I also decided that as I am very limited mobility-wise I would stick to entering online competitions, must via social media. Since then I have spent an hour or two a day entering competitions, not every day I have to admit.

As a result I have won a number of prizes - none of them alone are worth more than £100, but together they add up to a retail price well in excess of £500. I have won at least one prize a week since I began and, although they aren't worth a lot, it has been great fun. The prize that my husband is most pleased about me winning is an AutoGlym car valeting/detailing kit; the first job he ever had involved valeting and detailing cars and it is something that he enjoys doing. I think my favourite has been the £50 Debenhams gift card, which came with a bathrobe and bath towel, although I am sorely tempted to try the artisan G&T gift set. I have never tried gin however and I'm not sure my meds would appreciate the alcohol.

This morning we were lucky to hear someone hammering at the downstairs door, which leads up the stairs to the flats. That door is rarely locked during the daytime due to people coming and going who don't have a key - such as the delivery man. Unlike some, he did realise that the flats are actually up the stairs and chose to walk up and hammer at our door instead. It turned out to be a prize from the advent calendar competitions I had entered in December containing several make-up items such as blush, eye-shadow and nail varnish (it wasn't what I had been told to expect, but I'm certainly not complaining!)

That was the last of the prizes from December, leaving just two from last month that I am still awaiting the arrival of: a football and a bathroom goodies set. Hopefully they will be with me soon - mostly because Pete wants the football!

I have decided that I am going to carry on comping, as well as writing, drawing and having a go at painting which is something I haven't done since my Art GCSE many moons ago. Oh, I also want to learn how to sew using the machine. My hands are too shaky to sew by hand (which is going to make drawing & painting very interesting). The writing and comping are both things that I do via talk to type software on the computer; something that can also become quite entertaining given my speech issues.

Multi-faith rally: Birmingham fights back against prejudice

Not too long back a US TV host from Fox News made some pretty startling claims about England's Second City, Birmingham. As someone who lives less than fifteen miles from the city in question, the prejudiced claims took me by surprise. Had they been on a less serious and controversial subject, I may well have laughed at the ignorance of other cultures displayed by the man in question.

Birmingham has responded to that and the other recent international faith-based incident - the Charlie Hebdo shooting - with a multi-faith rally which included speakers from six of the city's major faith groups; Muslim, Jewish, Christianity, Hindu, Seikh and Buddhism. Having been to the city many times over the course of my life I thought that maybe I would share some information about the city from my own point of view.

I have been a wheelchair user for a number of years now and have to admit that unless you are planning on driving somewhere, then travel in Britain can be quite annoying for the less mobile. However if you either phone ahead or talk to the ticket office then train stations will make sure that someone will sort out ramps to get on and off the trains. Lifts are available on all Birmingham's train stations for disabled visitors, with plenty of escalators and stairs also available.

As you may already know, Birmingham has some award-winning modern architecture as well as more traditional architecture. The new library shown in this image is next to the recently renovated Rep theatre, which has been home to some fantastic shows. Within easy walking distance is Symphony Hall, where I had my own graduation ceremony, as well as several other halls where some exciting events have taken place in recent history (aside from my graduation, that is).

If traditional architecture is more your thing then you may want to investigate the Art Gallery and Museum, which is located close to the City Hall and the infamous 'floozy in the jacuzzi' as she is known locally. Well, she is nekkid and sitting in a great pool of water!

There have been a lot of changes to the Birmingham of my youth, which was far less pleasant than it is now. Once of those casualties was the old rag market, which has been replaced with a modern version that is lovely to have a wander around. If shopping is your preference, you could do a lot worse than visiting the rag market, located within walking distance of that other widely talked-about piece of modern architecture, Selfridges.

Although it is physically impossible for me because of the medical conditions I have, Birmingham City centre isn't too bad to get around for wheelchair users who are otherwise fit. If you do have a mobility impairment and cannot self-propel over great distances I would recommend either making sure that you have someone fit to push you, or hiring an electric wheelchair or electric mobility scooter. However you choose to get around Birmingham, it is definitely worth a visit.

Not-New Year's Resolutions

I have a tendency to flit from hobby to hobby, largely because I have the attention span of a flea - not that I know how long a flea's attention span is, I must look that one up at some point. I become semi-skilled at something then boredom sets in and off I go. Anyone else do that?

When the New Year started and everyone started talking about New Year's resolutions I pretty much ignored it. I never stick to it, so why make myself feel bad? Now, however, I think that it may be time to set a resolution or two;

1. I am going to make sure that I spend a little time each week writing
2. I am going to continue to sketch
3. I am going to find something that interests me every week and photograph it.
4. I am going to continue to enter competitions - sorry folks!

Yes, there are a lot of other things that I need to do, but if I start out with things that I actually like I think that I stand a far better chance of doing them.

Get off your arse and do it.

I took part in the NaNoWriMo (National Novel Writing Month) writing initiative back in November last year. The idea is to challenge yourself to get your novel down on, I was going to say paper, but more likely the computer nowadays with the aim of achieving 50,000 words or more. Unfortunately I didn't manage to achieve that the last time that NaNoWriMo happened because my health conditions decided to kick in on overdrive. Rather than getting my novel done via my talk-to-type software I was flat on my back in bed - most likely snoring (yes, women snore too, I admit it - though not me, obviously...)

NaNoWriMo is a fantastic idea because it gives us the kick in the butt that many of us need, but just because it is over it doesn't mean that we should rest on our laurels. I am starting to feel a little better than I have done for the past few months so it's time to get writing again. And I would like to encourage you all to do whatever it is that you have been putting off whether that is writing a novel, getting a new job or dancing naked in the rain...

The truth about pain

Here is the thing about pain, the truth; once you reach a certain level of pain, or have a particular type of pain, no amount of medication or happy, positive thinking is going to take it away. You will, to some degree, have to learn how to live with and manage your pain. Oh, you'll undoubtedly get all sorts of platitudes from people who - through no fault of their own - cannot possibly understand what you are going through. Often the people who are trying to comfort you and tell you that it is all going to be okay, that the medication will solve everything, have experienced nothing more painful than the occasional headache. How can we possibly expect them to understand just what constant, unending, nerve-searing pain can do to a person?

What you are going to have to do, as someone living with a pain condition, is try not to explode too many times. Much as you may want to just shove everyone out the door and scream "Leave me alone!" I'm here to tell you that that just ain't healthy. Been there, done that and have a whole room full of tee-shirts (I wish! I could sell them and make some much-needed cash). I have absolutely no doubt in my mind that I will tell people to just leave me alone at some point in the future, but I am trying to be a lot more polite about it.

How on earth do you describe pain to someone who hasn't experienced long-term pain? It is like trying to explain blue to someone who has never been able to see. Yeah, okay, you can come up with comparisons "Blue is like a warm summer's sky" but that doesn't really explain the true nature of blue, does it?

Likewise I can say that one particular element of pain has made my skin so sensitive to touch that it is like my clothes are made out of sandpaper, or that I permanently feel as though I have the flu. Those descriptions may help a little if someone has tried rubbing their arm with sandpaper or if they have had flu, but... You see where I am going, right? It can give an idea but doesn't get across the constant wearing down that comes with constant pain.

That said - I still think that we should talk to people and try to explain as much as possible. We all know that pain is invisible, it is one of those conditions that is ignored and ridiculed: "It's only pain, why are you making so much fuss?" "Drama Queen!" and so on. If we want people to better understand pain, then we need to talk about it and the impact it has on our lives.

Pain = millions of lost working days = isolated people

Pain conditions are hard enough for those living with them to understand, let alone those fortunate enough to neither have a pain condition themselves nor to be living with someone who has one. Government statistics from 2013 show that approximately 15 million people in England alone are living with a long-term health condition. Many of those people will be experiencing pain of some description; in fact, several years ago the British Pain Society estimated that 10 million people across Britain were living with pain. If we choose to look at that purely from a financial point of view this means that millions of working days each year in Britain are lost due to pain. That alone should be cause enough for pain to be openly discussed, yet it remains one of the most taboo health issues around.




There are a huge variety of reasons that someone may be suffering from pain, ranging from an acute form such as a sprain or broken bone which will be fully healed in a matter of weeks through to chronic forms which may remain for the rest of a person's life. People may experience regular flare-ups of pain every four to six weeks due to painful periods, for example, or have neuropathic pain which is present all the time. It is individual and will vary person to person, even where the cause is the same. The only real way of knowing just how someone's life is impacted by pain is to talk to them about it. Yet here in Britain we tend to shy away from actually discussing such matters. Oh, we will casually ask if someone is alright, but what most people really want to hear in response is "I'm fine, how are you?" There is often some rather obvious discomfort if a person living with a pain condition answers truthfully and begins to enthusiastically discuss their pain.




Possibly because we have so many wonderful medical treatments around now - thank goodness - it is often assumed that pain can be completely controlled by medication. People can be forgiven for believing that someone living with pain is guilty of exaggeration, because surely with all the medication available nowadays, pain can be controlled?


The sad truth of the matter is that many pain patients continue to suffer awful and debilitating levels of pain, some of which remains a mystery to doctors. For people like me who have a combination of several different pain conditions and take a variety of medication, the pain remains a very frustrating symptom.


So why is talking about pain such a taboo?


In all honesty that is a question that I cannot answer without a serious amount of research. I suspect though that there is an element of embarrassment there, a feeling of not knowing whether or not people are 'supposed' to ask personal questions about an individual's pain and perhaps plain discomfort at seeing someone else in pain. Certainly I know that my mom hates to see me in pain, as does my husband who is my full-time carer. His way of dealing with it is to be as proactive as possible by doing things such as learning to administer IM injections of pain reliever for those times when the pain become really unbearable, which has definitely made a big difference.


I would like to talk to someone else though; not just about the pain and how it impacts on my life, but also just about the world as a whole. That would be pretty spiffy actually, if someone came to visit me and just chatted.


Does anyone have any other ideas why pain is such a taboo discussion topic?

Summer and winter

For the past ten years I have been living with numerous symptoms related to chronic illness. I suppose that although getting a diagnosis was - and is - important to me, it is the symptoms that really count. Those are what decide what I can and cannot do. I was diagnosed with fibromyalgia in 2006, though not all my symptoms stem from that or fit into the medical model for that condition. Also listed on my diagnosis list are endometriosis, migraine, pain amplification syndrome, asthma and neurological issues including numbness, tingling and cognitive and speech impairment. Yeah, I know, I sound rotten to the core!

Pain amplification or centralised sensitivity are fairly common in fibromyalgia; I found quite an interesting article on it here pain amplification. Basically for me there are times when even my clothing feels like a sander being moved over my skin, a touch on the arm can feel like a punch. Pain is probably the biggest symptom that I have, but surprisingly it isn't the one that I find most difficult to manage. There are things I can do to limit or manage my pain, such as wearing certain types of clothing or adjusting my (very limited) activity levels.

The symptom I struggle with most is fatigue. There are hundreds, thousands, of articles and pages of information on the subject of fatigue. For me it isn't just exhaustion but also muscular fatigue - I feel as though I have just finished running a marathon with lactic acid surging through my muscles, when in reality I have perhaps done as little as turn over in bed. It isn't always just that, obviously because it is a variable condition sometimes I am a little better and can maybe make it out of bed and into the living room (thank goodness everything is on one level!) There are some rare occasions when I actually make it out of the flat, although that is mostly when I have medical appointments.

Yet last summer I found that when we had a couple of weeks away in Wales I was able to be out of bed almost every day and sit in one position for longer periods of time. I still couldn't walk more than a few metres even with both elbow crutches, but being out of bed that often, that's a big deal for me. Anyway I deteriorated rapidly when I came home again and had a really very bad, very painful winter where I seemed to need injections of additional pain relief on a more regular basis; something I had been trying to avoid. I had a pretty rough time of it and was feeling incredibly fed up come Spring.

We decided that it would be interesting to perhaps spend a little longer in Wales and see whether there was an improvement over a longer period of time than a couple of weeks. I wasn't well enough to go to Wales until the latter half of the year. However when I did go I found that I improved again. Once more I was able to sit for longer periods of time and was able to be out of bed most days. My asthma was far less significant, though I still found that I had quite bad reactions to things as silly-seeming as the smell of clothes washing products, spending a good fortnight having to use the inhaler far more frequently again.

My improvement this time wasn't as much as last time, though that could just be because I've deteriorated further again. I didn't have asthma this time last year, yet this year I have reacted to so many things. The improvement that I did have did last however and I felt much, much better just being able to breathe fresh air.

Back here and I once again deteriorated significantly. In an ideal world I would move to Wales and at least have a little bit of a better quality of life. Although I feel like I have worked hard at trying not to let medical conditions rule my life over the past decade, the reality is that things are getting worse. I have achieved a lot - two degrees, both 2:1, a diploma and graduate level certificate, as well as volunteering (though I haven't been able to do that for around 2 years now). I would love to do a Masters in Children's Literature that I have seen, as I achieved a distinction in that particular module of my latest degree, however just completing that final module was a serious struggle. My tutor kept contacting the University on my behalf trying to find more support for me and more alternative ways of allowing me to study but by the end of the module I was in serious trouble. It was a huge relief in many ways to reach the end of studying.

Right now I don't have anything to focus on, which is something that I think I need. On the other hand I have deteriorated so much that I just don't think I can manage anything else. It is going to be interesting to see how I am over the coming winter and whether I remain at my current state or whether I get worse still. I am crossing my fingers that I stay where I am. I suspect that getting any worse is going to start to impact my mental health as well as my physical health.