LIPS Trials, 100 days and Work:

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As usual, I have to start my blog post with an apology for not having written more. It’s something I keep neglecting and something I strive to improve. If it’s any comfort, I keep forgetting to write my diary too, so when I finally get round to doing it, it takes me ages to do so. As a result, I have three main things I want to write about in this post: LIPS Trials, 100 days and Work.

Work:

Starting off with the least pleasant, but something that needs to be said none the less. As of 28th April 2014, I no longer work for the Police. After months of effort and constant communications between myself, my line manager, my Inspector and HR, the inevitable happened and I was retired on grounds of Ill health. It’s something I’ve expected for years now, but this still doesn’t make it any easier to accept.

It was decided towards the end of last year, that my time in the Control Room, where I had worked (health permitting) for the last 3 years, would be at an end. The reason for this was that my constant use of pain medication – needed to keep me out of bed – was clouding my memory and sometimes my judgement, potentially putting officers or members of the public at risk. I never saw (or heard) any of these deficiencies in myself, but I’m glad they were mentioned before anyone was harmed because of me.

The plan was to move me to somewhere closer to home (my daily commute was anywhere between 40 minutes to 90 minutes each way depending on time of day and traffic), and with less stress (which made the pain in my leg worse). Sadly, there is now very little for a civilian to do at my local police station. The closest station where something would have been available was about 30 minutes away (not for from the control room really). We asked the Force Medical Officer if this distance would be ok, but he refused (and as it turned out, longer term, the department I would have joined never moved to that station anyway).

So there you have it. Of course this upsets me, but I understand why it happened. So what is the next step? As you know, I’m learning to become a web developer and coder from home, so I hope to move into that field as and when I can, either freelance, or in a local company.

100 Days:

Whilst on the subject of coding, I have started a new series on Give it 100. If you’re not familiar with the website, it’s a social learning website where you commit to make a 10 second video everyday to show what you are doing/learning. There are many videos of people learning to do everything from learning to play the drums, to becoming a mum. I thought it would be a good motivation exercise to encourage me to continue to code every day. So far, as you can see, I have made several videos and received lots of good supporting comments.

LIPS Trial:

Finally, on to the most important aspect of this post.

If you are a regular follower or friend, you will know I suffer from a disease called Complex Regional Pain Syndrome or CRPS (AKA. Reflex Sympathetic Dystrophy or RSD). With the prospect of losing my job because of the illness, my wife thought it would be worth looking if there was any help available to sufferers. Fortunately, she stumbled across a part of the NHS website which had Clinical Trials running. One of them was for CRPS.

LIPS Trial, or  Low-dose Intravenous Immunoglobulin Treatment for Complex Regional Pain Syndrome, is run by the University of Liverpool, and the study is investigating whether Immunoglobulin (Ig) is an effective treatment for CRPS. There have been some promising first steps, and now this is a wider study to see if the drug is a worthy treatment of this retched disease.

After a bit of persuading, I applied to be on the trial. I was quickly contacted and motions were put in place to have me referred to the study. This week, I made my way to St Thomas’ Hospital in London for my first appointment.

There was much paperwork filing and an assessment by the consultant in charge of the London running of the study. The Consultant was very kind and helpful, explaining that CRPS is an immune disease and that Immunoglobulin is a regular treatment for immune diseases. They were very happy to have me onboard and went ahead taking blood samples to make sure that I was completely suitable and to get a baseline of my Ig levels.

The study has two infusions, which will be double-blind, meaning no one (not even the examiners) will know if I have the Ig or a placebo. After two infusions several weeks apart, the study is over. From the time I’m admitted on the course, I have to keep a pain diary. These will help the researchers define if my pain levels are better or not and if it was because of the Ig or not. After the two double-blind infusions, I’m allowed to ask for the Ig infusion up to twice. These second two infusions are completely my choice, and could help me decide if I was on the placebo, or the real thing. Once the infusions are finished, I continue to complete my diary for a while till the end of the study.

I’m greatly looking forward on taking part in this study, as I would love to see a treatment (or dare I say, cure?) for CRPS be available. Even if it doesn’t do anything for me (I’m at the limit of their diagnoses range, 5 years), I hope that it helps them find something out and help others. However, at the moment, there are only 11 people on the study (although that was unclear if they meant 11 in London, or in total). If you read this, and know someone who has CRPS diagnosed within the last 5 years, I urge them to take part to increase the sample size. Please, share this post and pass it on to anyone you know would be interested. Check out the trial website, which gives you more information and what the criteria is.

Thank you, and stay tuned, as my first infusion is set for 14th May, so I will keep you posted.

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Using a Fitbit in a wheelchair:

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Using a Fitbit in a wheelchair

So many to chose from, all with good and bad points.

Being in a wheelchair, exercise isn’t as easy as ‘popping’ to the gym and using the treadmill, or going for a morning run. Because the lives of wheelchair users are more sedentary than the average office worker, who at least walk to the car/toilet/lunch, we have to make a bit more of an effort at it. Or so I thought.

Motivation to track my steps:

In an effort to help my wife in her battle in losing weight, I decided to get us an activity tracker for Christmas. I spent two weeks looking into the different types of devices on the market which included the Fitbit family of devices (Fitbit One, Fitbit Flex, Fitbit Force), the Jawbone Up, and the Withings Pulse.  Each device had advantages and disadvantages. My thoughts of the best suitable trackers for me was:

  • A wrist mounted devices so that I’m less likely to lose it.
  • Be able to track my sleep, steps and calories burnt.
  • Connect with the other fitness apps I use.
  • The ability to connect to my phone to sync data and view stats.

In all my research, I couldn’t find any blog post, article or even forum post on all the fitness forums about the use of an activity tracker, like the ones mentioned above, in a wheelchair. The whole ‘raison d’ étre’ for an activity tracker is to track steps, which obviously not something I do a lot of. I can just about hobble around the flat on a good day, but anything beyond my front door is achieved using a wheelchair or mobility scooter. I sent Fitbit, Jawbone and Withings an email asking if it was any use in me buying a device being that I would be in a wheelchair most of the time. Only Fitbit had the decency to reply. Although written from a heavily marketing point of view, they did say that although the device is designed to be to track steps, it would give a reasonable measure of activity, allowing for a slightly larger margin of error than for walking. They reassured me that they were trying their best to make it as compatible with wheelchair users and would work on getting the margin of error down to a more acceptable level. I’d like to think this series of posts will help and maybe encourage other wheelchair or disabled readers to buy a tracker to stay fit and healthy.

Final decision:

After many hours reading all the reviews, comparisons and walk-through, I decided that as this was going to be a present for both me and my wife, I had to ask for her advice, despite ‘ruining’ the surprise.

We both decided that if we were going to get one, we ought to get the same one for compatibility. There wouldn’t be much point in me getting a different device as we wouldn’t be able to link up and compare stats. Lorna looked through all the devices I suggested, and we decided to get the Fitbit Flex tracker.

Why?

I can almost hear people making comments saying something like “Why don’t you use [xyz] app which will track your steps, and [xyz] to track your sleep?” or “Wouldn’t a pedometer be cheaper?”. Here is my answer to those comments.

The point of using a wristband format and not a clip on at the waist device is simple: I’m very forgetful, and sooner or later, it would end up in the wash. There are plenty of posts on the internet about people who have forgotten to take off their tracker from their trousers/bra/shirt, and it ends up in the wash. 7 times out of 10, the device is unusable, and they need to buy a new one. Pedometers are no more reliable than the wristband. Most cheap ones can be given a shake, and they add ten steps. Plus, when in the wheelchair, pushing myself along, the pedometer or clip on tracker is less likely to pick up the movement, where as being attached to my arm which is pushing the wheels to get around, it records the activity.

With regards to using phone based apps to track my sleep and steps, I’ve tried them. The step based apps usually do ok, as long as the device is in my pocket. But often, when I’m sitting round at home, it’s on the table, or on the sofa or (more often than not) being charged. Something attached to my wrist is always there, just like my watch.
The phone based sleep tracking apps are usually unsatisfactory because they rely on you having the phone placed on the mattress, and it records the vibration and noise. The problem is, I often move round in my sleep, and will knock the phone off the mattress, therefore rendering the stats null. Furthermore, it means that the phone has to be on and charging all night, which makes it hotter and it’s not recommended to have it under the pillow, which would secure it.

Stay tuned…

This is only the first of many posts to do with the Fitbit use in a wheelchair. I urge you, should you come across this in months to come without a recent update, to send me a message or comment asking for an update, and I will do so ASAP.

Next up: My thoughts on the Fitbit dashboard and phone apps

Photo Challenge for CRPS/RSD Awareness – Days 4 & 5:

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I delayed my photo’s of days four and five of the CRPS/RSD awareness Photo Challenge because I had a problem.

Day 4: A picture of your favourite quote.
Day 5: A picture of what brings you hope.

I didn’t have anything that fitted into this criteria at first thought. I really don’t have a favourite quote relating to CRPS/RSD. I have one about writing I made up (One word written is better than a thousand planned) but not for CRPS. As I was trying to rack my brain, I suddenly remembered a song I had taken great comfort in. For a time, I was convinced it should be the anthem for anyone with Chronic Pain. It’s a song by Michael Bublé called “Hold On”. Bellow you will find a YouTube video of him singing it.

I personally feel that Michael Bublé is a very talented singer. The reason I like the song so much, and why I’m choosing it as my “quote of hope” is because of the lyrics. There are some which I find very relevant to people with Chronic Pain such as:

[…] maybe all the plans we made might not work out
But I have no doubt even though it’s hard to see
I’ve got faith in us, I believe in you and me […]

and:

[…] There’s so many dreams that we have given up
Take a look at all we’ve got
And with this kind of love what we’ve got here is enough […]

It’s true that with Chronic Pain, and CRPS/RSD in particular, the plans we once made may no longer be possible. For example, I had always planned on becoming a Police Officer in the UK. It was my goal straight from leaving school. In the September after leaving school, I went for an interview with London’s Metropolitan Police. I failed (badly), but using the feedback they gave me, worked hard to gain life experience so that I would be ready for the next interview. I got as far as becoming a Police Community Support Officer which is not a sworn officer, but have many powers such as giving out tickets, collecting evidence, taking details of crimes etc. They don’t have powers of arrest (other than citizen powers of arrest).

Once I contracted CRPS, and it slowly spread up my leg and the pain got worse and worse, I couldn’t walk a beat anymore. I could no longer pursue my dream of becoming a Police Officer. I was fortunate that my Police force was very understanding and have allowed me to continue my job as a desk based worker in a different department.

The other reason I like this song is because the chorus tells the listener to hold on and not give up hope. This is where day five’s place comes in with the following picture:

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This is a picture of my two boys (on either end), my wife (on the left), my parents-in-law (on the back row) and my wife’s cousin (in the middle). Like I’ve already said in day two, my wife has had to become my carer and has done so without being asked or coerced. She is always there for me to “hold on” to. So are my children.

I may not be able to get rid of this terrible disease, but thanks to the support of my wife and children, it won’t be so hard.

CRPS/RSD Photo Challenge – day 3: Share a Photo of ways you cope with pain

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Yesterday, I was asked to show you a picture of ways I cope with CRPS/RSD pain. This photo, shows you the majority of ways I deal with my pain. I must confess, however, I take a lead from one of my friends who is also a sufferer and taking this challenge on the facebook group. My apologies to you Lynsey, but I guess we both have similar ways of coping.

Laptop (top left)

The laptop signifies my writing and coding which help me to escape my pain. I have so far written two manuscripts which I edit in slow time . I’m also learning to code HTML and Java. It is my hope when I have finished this, I will turn into a freelancing business from home, thereby no longer having to stress myself out getting to work. I mainly write fantasy, which also helps in my escapism.

Buddhism (top right)

I was raised a Christian, but found that Buddhism spoke more to me than the teachings of the bible. It has helped me see this disease as nothing more than Karma and not luck, melovolance or anything else. I have also come to see my suffering as a good thing. This may sound strange, but in my view, if I have this disease, then that’s one less person who has to deal with it. Maybe this is somewhat foolish thinking (as I doubt that Karma takes into account the amount of disease to spread round, but it makes me feel a little happier).

Batman (middle right)

I have been a Batman fan since I was a young boy, collecting stickers to enter in a book. I have only recently rekindled my love for the capped crusader, and have been watching videos and films, reading comics and books and playing games and role play on Batman, which I find very escapist and soothing.

Kindle (and/or other books)

Any other kind of reading, whether it be general fiction, HTML or Coding books or self help books, I find very relaxing. Ever since I finished a book cover to cover for the first time at the age of 14, I’ve been hooked on reading. My favourite fiction author is Lee Child. I just love the character of Reacher (no, not the Tom Cruise version).

Tablets (mid centre)

The tablets quite clearly are my most regular coping technique as I take 11 ½ tablets a day spread over three occasions (and trust me, that’s low compared to some of my friends). I don’t appreciate the constant side effects that all these drugs give me, but I’d be worse off without them.

Earl Grey Tea (mid centre)

Earl Grey tea is my go to for relaxation tea. My other is Green Tea. I originally started drinking Earl Grey because it was Captain Jean Luke Picard’s drink in Star Trek: The Next Generation, which was one of my favourite programs as a kid. I find the smell instantly soothing as he often would have it as a refreshment when contemplating a difficult situation, or giving council to one of his officers.

Gaming (bottom left)

As I already said, I find gaming another great escape from my pain. Inside the world of gaming, I can explore deep and mysterious caves in Skyrim, or zoom round the streets of San Francisco in Driver or, better yet, jump off rooftops and swoop in on criminals and solve clues as The Worlds Best Detective (Batman). I think what I enjoy most is that in all these games, I’m not walking round Gotham with a stick or looking to see if the cave is accessibility friendly. I can walk again, without pain or sticks.

Walking Sticks (bottom)

Having just cursed them, my walking sticks are another coping mechanism. They are quite literally a crutch. If it were not for my sticks or my wheelchair, I would not be able to get round the flat. My leg often gives way, and the sticks help me to keep stabilised.

If it were not for all these things, along with the support of my family (mentioned in my previous post) my pist-CRPS/RSD life would be unbearable.

CRPS/RSD Photo Challenge – day 2: who you spend your time with and why

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My Family

A Day In My Life Photo Challenge for 30 days of #CRPS / #RSD awareness.

Day 2  – Who You Spend Your Time With and Why.

My family:

They have been forever supportive.

My wife (top left) has taken on the responsibility of being my carer in between running the household, looking after the boys and going to work.

My boys (top right) have never stopped being understanding of my limitations and often been happy to do nothing with me all day.

My parents (bottom right) have often been a home away from home and an attentive ear at the end of a Skype line.

My in-laws (bottom left) have funded many things including 8 years of childcare, mortgages, bank payments and so many food shops I can’t count.

Therebidnt room in the photography to include the rest of my family (aunt, uncle, cousins, brothers) or my other two families: my work family and my online family.

Had it not been for my work family, I wouldn’t have been able (or willing) to push myself so hard to try and support them in work as they supported me in being forever understanding of my limitations, sick days and off days when I really ought to have stayed in bed but didn’t. They have always been patient with my lengthy periods of sick and numerous (and often bizarre) adaptations I asked of them. I can’t thank them enough and will be devastated to leave them.

My online family are all my friends on Facebook and Twitter, many of whom I’ve never met in person. Many of my fellow CRPS sufferers have always been there to vent and rant at or a cyber shoulder to cry on. They have always made sure I was OK both physically and mentally and have been there to lift my spirits when needed.

If it wasn’t for all these amazing people taking time out of their lives to support me, I would not be here today (literally).
Thank you all, from the bottom of my back-to-front heart.

Writing deamons

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I’ve lacked, of late.

Not in life, but in my writing. I can’t actually remember the last time I looked at either of my manuscripts and worked on them. Since I finished NaNoWriMo in November 2012, I have made very little progress on either of my stories.

I’ve written, but only as an escape from writing, if that makes sense. I’ve been writing short stories, news articles and blog posts, but my two Works In Progress (WIP) haven’t moved forward since I left them in the metaphorical drawer after finishing them.
I’ve also being doing other stuff, such as getting back to work, learning to code and setting up my freelance business – although in truth, even that’s slowed to a crawl at the moment.

Sure, I’ve tried to set myself timetables to write/work to, but when it comes to it, I struggle to actually pick up the laptop and do it. Or I’ll start, and fall asleep at my laptop for hours and end up wasting the day. I couldn’t figure out why I am in this “I’ll do it tomorrow” phase.

Then I started to listen to podcasts again (stay with me). I started to look for podcasts on coding, although there were few, but also picking up old ones like Mur Lafferty‘s I Should Be Writing podcast. She had also taken a break recently from podcasting to help her finish her book and because of family crises. In the batch of most recent podcasts (296-300), she referred to many of the same problems that I had, which helped me see why I couldn’t progress: fear and self-doubt.

It didn’t occur to me to start with, but the reason I’ve not been progressing with my WIP, is because I’m afraid. I’m afraid that when I finish it, people will read it and they will just laugh at me. There is almost an element of “who are you to say you’re an author?” in there too. This could be why I’ve dreamt about all the school bullies for the last couple of months. They are my tormentors, who would stop at nothing to mock me just for trying to do something or trying better myself.

In her podcast, Mur talks about a lot of the same issues she’s been having. She’s been suffering with similar negative thoughts which have made her feel “meh, what’s the point?” She went on further to describe another feeling I didn’t realise I had, which was that negative critique inside me that was saying:

“You call this original? Anyone can see that X=A! It’s so obvious from the first page, that everyone will get it and they won’t bother to read past page two and they’ll all call you a looser. Why should they read what you have to offer?”

Mur says that this feeling comes from the fact that you know all the story, because it came from your mind. Give it to someone chapter by chapter, however, and they may not work out the plot twists and surprises. To them, it will be a thrilling read. Imagine if Dan Brown had looked at his manuscript for The Da Vinci Code and said “well of course the [this person] is the teacher, it’s so obvious from the moment they [blank]!” The world would have been short one great novel (well, I think it is. If you haven’t read it yet, do. Or watch the film, that’s pretty good too).

I would liken it to turning whilst driving. So many people fail to use their turn signal/indicators because to them, it’s obvious they’re going to pull out into that lane, why should they need to announce it to the world? Sadly, we’re not all mind readers, which is why we slam on the brakes, lean on the horn and make all kinds of hand gestures at you when you pull out right in front of me without indicating.

So what will I learn from this? Well, my inner critique may think that my WIP’s are obvious, flawed and worthless, but I’ll never know unless I finish editing them and get some alpha readers, go through a second edit, show it to some beta readers and then – who knows – pass it on to an agent. Because ultimately,

One word written is worth one million imagined.

I’ll keep you all updated. Besides, I have a reputation to live up to now:

News Article about my writing

 

To a Real Life Hero

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Today is a very special day for several reasons.

  • It’s six days till I return to work
  • It’s Joe’s Ninth birthday, and
  • It’s Lorna and my Eighth wedding anniversary

I mention all this because on this day, I want to pay special tribute, publicly, to a real life hero of mine.
If you know me, you’ll know that I love comic book heroes, in particular Batman for his unwavering pursuit of justice and doing the right thing, even if it’s wrong whilst all along respecting the sanctity of life. My favourite comic publishers, DC Comics (home of Batman, Superman and Green Lantern to name a few) are currently running a competition to find real heroes. The premiss is that you nominate your own hero by posting a short video stating why you think your champion should win. People vote, and the video with the most votes wins. I was going to enter until I read that the competition was only open to US citizens (not for the prizes, but to show my deep appreciation for my hero) . So instead, I thought I would show my appreciation like this.

Whilst my hero doesn’t stalk rooftops in a cape and cowl, or smash their fist into people’s face till they gets what they want, they do stand up for freedom, independence and justice. “Who is this wonderous paragon?”, you may ask. It is quite simply my beautiful wife, Lorna.

Since I become disabled with CRPS, Lorna has taken up the slack I have gradually let slip more and more in all areas in our family. She runs this unit as best she can with three dependants begging for her attention. She does all the housework (don’t let her fool you into believing she loves it), the shopping, the cleaning, the mending, the cooking, the bathing, the first aid, the refereeing between her two boys and me, the money management and the moral supporting whilst holding down a day job and making it look like she does nothing. There are times that I have to remember that she is running this family, not me, as I often think I am.

Some will say that all the above is ‘her job’ as wife and mother which, while not the description I would use, maybe true, but what she does on top of all this is care for me and Ashley. Although our little three-year old is growing and slowly becoming more and more independent, I am going the other way. Lorna has had to lift me off the toilet when my legs have decided to give up, out of the bath or off the floor when I have fainted and made sure I have a never-ending supply of tablets to control my CRPS. She has phoned me on a daily basis to make sure I am ok and to keep me company, she has been a shoulder to cry on and a voice of reason in my (many) darker moments. She has even paid through the nose (along with thousands of pounds from her parents) to make sure that my life is as comfortable as possible. We have bought an ever-increasing amount of mobility aids from walking sticks (singular, then plural), walking frames, wheelchairs, mobility scooter, perching stools, bath boards, softer clothes, comfier chairs and beds, numerous smaller aids and two cars big and soft enough to allow me to have a more comfortable life.

Not only has she done all this without uttering a single word of complaint, but she has done it all whilst battling her own health problems. Even when she has felt low, ill and just wanted to curl up in bed, she has made sure that both the boys and I were comfortable and content first. She has continued to be a mother, wife, lover, listener, confidante, carer, driver, Physio, butler, maid and cook.

These list of accomplishments and gushing praise pales in comparison to what Lorna has done for me, and I know I will, sadly, never be able to thank her or repay her enough for what she has done. So let me say now, publicly, with readers as my witnesses, that I love my wife, and declare her my ultimate real life hero.

Thank you Lorna, from the bottom of my heart. You have done for me more than you can imagine and I can only hope that your reward will be countless, if not in this life, then the next, and many more after.