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 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.

9 year old astrophysics

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Joe (9): looking at my cup with the periodic table on it.
“We’ll soon run out of helium, won’t we? Will we then have to take it off the periodic table?”

“Well, no. We may run out of it on earth, but helium still exists in space. In fact, our sun and every star creates helium which makes it shine.”

*pause*

“Is that why the sun rises every morning?”

*legend status: 100%*

More Writing, More Coding, More… Everything:

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'FF More' photo (c) 2011, FontFont - license: http://creativecommons.org/licenses/by/2.0/

I’ve been lacking a lot lately. Not just at home, but in work, in hobbies and in life. I have my reasons, namely going back to work on a gruelling schedule (for me), good and bad days with CRPS (more on that in another post), and just general laziness. I have found I’m quite capable of sitting in front of TV all day without doing anything. “Nothing new there!” my family would say, but it’s really bugging me. I don’t like waking up in the morning with plans to do XYZ and ending up doing ABC or, even worse, nothing.

Previous attempts:

I have tried not to be stuck in neutral and doing nothing all day, despite my brain screaming at me to do something. I’ve tried to use to-do systems like Get Things Done (GTD) as well as many programs which swear to banish inactivity, but these systems and programs all rely on one thing: Discipline.

Many years ago, when I was about to finish School, my father had a frank discussion with me in which he felt I wouldn’t do well at University, but would gladly support my choice of going or not. When I asked why he didn’t think I would do well, he said that it was totally different from school, in that it was all self-discipline. No one would tell me to go to my room and do my homework, it would be off my own back. Looking back, I can’t thank him enough for giving me that advice, as I do think I would have been too ‘busy’ doing other things (basically excuses to keep me from going to class or doing work) to actually do any university work.

Now, the same problems have resurfaced. As you may remember, last year alone, I wrote two 50,000 word novels. I haven’t looked at them since. Why? Partly because I was letting them simmer, so that when I came back to them, they would be fresh and errors would leap off the page. Every good book, blog or advice about writing tells you to take a break from a long stint of writing, not to go straight into the editing. That doesn’t mean I leave it for a year!

The (hopeful) solution:

I have therefore decided that starting September 2nd, I will start a whole new regime of discipline which should mean more writing, more coding and more time with my family. This involves a whole new filing system, new to-do system and new work ethic.

On my new shift at work I work 4 days out of 9 (call it 5/10 for simplicity). That means that 50% of my time should be taken up with work, and 50% should be taken up with home.

If I split home into four unequal parts, I should take 5% for resting (from work), 15% for family time (which means time with the boys, doing ‘daddy’ things), 10% for coding, 10% for writing and 10% for reading/learning/chores/more resting/anything else. I think this is a pretty good way of splitting my home time with my work time, without compromising my health or any part of my life.

I also intend on using a new routine for my down days (days when I’m not at work) to use my spare time more effectively. As of now, I’ve been having breakfast in front of the TV, watching my favourite show (whatever my favourite show happens to be at that time) and, when I get bored, either moving on to the next thing on my list or, more likely, the next program I can find that grabs my attention. The majority of time I spend coding or writing is usually round bed time, when I seem to have the most energy (ironically) and not fall asleep at the keyboard the minute I open up the laptop.

From now on, I intend on using a more rigorous routine which will allow for a more timetabled schedule throughout the day. I haven’t ironed out the plan, but at the moment, that looks something like:

  • Eating breakfast whilst reading latest articles/blogs etc
  • By 9am, start with writing (blog posts, freelance articles, novels), using the Pomodoro technique of time management to work in 25 minute blocks till lunch
  • Lunch (I don’t tend to have lunch on my own at home), reading any new articles/catching up on twitter/emails/phone calls.
  • By 1pm, start work again, this time on coding (at the moment, still learning), still using the Pomodoro technique till the boys come home.
  • Spend time with the boys, engage with them, play with them etc.
  • Spend time with Lorna once she comes home, making her tea/coffee and letting her recover from work (she lets me do the same when I work, so it’s only fair).
  • Bed, at a reasonable hour, not 3am (which is often the case at the moment).

Why the ‘Family Time’ Block?

I have been asked, or can imagine it being asked, why I need to divide time to spend with the boys/wife, surely this is an obvious part of being a family man? Yes, of course it’s an obvious part of being a parent and husband, but I have to admit, I’ve been dropping the ball lately on that, not spending time with the boys when here, or being on the compute all night instead of spending time with Lorna. It’s not because I’m being antisocial or because I don’t want to spend time with my family, it’s because I’m generally playing catch up to all my other commitments. Being a part-time worker, part-time freelancer, I have a great gift of time (the 5/10 days) to spend on my hobby/business of freelancing. Most starting freelancers don’t have that luxury. I now need to use this time effectively. Doing so will mean I’m not furiously trying to type up an article whilst looking after the boys, or half-heartedly trying to learn HTML whilst ‘spending time’ with Lorna.

Seeing as this post has gone on longer than I’d planned, I will outline what tools I intend on helping me to carry out this feat of remodelling behaviour. This will be released tomorrow, so don’t forget to come back and read the follow-up.

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.

It appears that they’ll let ANYONE be a published author!

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This is normally the exclamation made when I see they’ve let yet another 19 year old footballer write their autobiography. I’m sure they sell well to the fans, but let’s face it, what has a 19 year old done that is worthy of writing a full biography? Worse is when they write one on someone who lasted six months in the Big Brother house without going nuts. It really does appear that those who ‘haven’t done anything’ can easily get a book deal, where as a real author spends his life flogging his magnum opus only to be thrown in the junk pile.

All joking aside though, on this occasion I am extremely proud to say that my Eight year old son has been chosen to have his poem, “Neverland Poem” published in the Young Writers anthology titled The Power of Poetry.

It appears that this piece, which started off as a school assignment, was sent off by his school to be entered into the competition to be published. We had no idea this had happened till we received a letter today asking us to sign the permission slip.

The book is due to be published in June and we get to buy a copy. A free copy will be sent to his school to be kept in their library, and copies will be sent to any library left open after the budget cuts.

I am very proud Joe has accomplished this, as writing is not his strong point. We usually face a fight whenever we have to do hand writing for homework. Hopefully, this will encourage him to continue writing, and maybe not so much fuss when he has to complete hand writing.

Why there is no “Try harder” anymore

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Several things today have given me a mini realisation, and I thought I’d share it here.

The first was this morning, trying to get my boys ready to go to school/playgroup. I was trying to get my 3 year old, Ashley, ready by putting his shoes on. In an effort to get himself sufficient, I was asking him to get them on. He just sat in front of the TV, moaning that he couldn’t. The fact that he was still watching the TV and hadn’t undone the velcro strap appears to have escaped him.
I turned the TV off in an effort to get his attention fully focused on the task of getting his shoes on. He didn’t like that, but tough. I asked him to look at what he was doing and encouraged him to undo the strap. Even that was a chore, but he managed. I continued to coax him into doing it all himself, but his temper got the best of him and in a hissy fit, he kicked his shoe off.
*sigh* Back to square one.
We eventually managed to get the first shoe on. Then I asked him to do the next shoe. “I can’t!” was the simple answer. Again, the fact he hadn’t tried and had just got his first shoe on seemed to escape him. After some more, gentle, coaxing, the second shoe was on. With a sigh of relief from both my Father in Law and I, we tried the coat next. Again, another task, but apparently easier than the shoes.

What I had failed to see here was that he was tired (from getting up in the night), not a morning person, and wanting things done for him. There was also something else that escaped my attention till now.

Later that morning, I was speaking to my niece on Facebook messenger. She has been going through some very tough times health wise recently, but has the kind of soul who is more concerned about others and therefore was catching up with me. We chatted about the difficulties she’d been having recently and how she felt she was letting people down by not trying hard enough. By this point, I had moved into the bedroom and was thinking about getting dressed. When I saw this comment, I immediately started, like any good uncle, to disagree and say she wasn’t letting anyone down till she quit.

And that’s when it hit me:

There I was, still sitting in my pyjama’s, working up the courage to put clothes on. This is a battle I face everyday. Sometimes, I’ll stay in pyjama’s because the thought of taking them off then putting clothes back on is too much to bear. This isn’t simply a matter of trying harder, it’s a matter of deciding if I want to live with the pain after I have got dressed, or save my energy to do the washing up, like my wife asked. To someone without CRPS/RSD, this sounds silly. But I know this will resonate with my friends who read this. And this is why disabled are often labelled as lazy. It’s a matter of context. It’s like standing at the bottom of a sheer cliff with the other person is at the top. To the second person, there is no cliff, they are standing next to you.

So how does this relate back to my niece? Well, the fact that she is trying to get better, rather than just letting it take over her life, is a massive step. Bigger than people take for granted. They say that admitting you have a problem (what ever that may be), is often the first step towards recovery. This is true, but what the don’t say is that the hardest step is to actually try and change. To many, getting dressed is a task that takes minutes (once they know what they want to wear, of course). For me, it’s a task that can take anywhere between ten to twenty minutes, depending on my pain and energy levels, even with my wife’s help. Even when energy is high and pain is low (AKA a good day), by the time I’ve finished, the levels have often swapped, and I need to rest to face doing anything else. It’s not a ‘simple’ matter of trying harder to get dressed, but real battle between keeping these levels in optimum balance. The same is true for my Niece. It’s not a ‘simple’ matter of trying harder to get better, because trying is the hardest thing. Same with Ashley; I need to remember that, for him, putting on his shoes is difficult. It’s not a case of simply trying harder, it’s a genuine struggle for him to co-ordinate his hands and do it without becoming frustrated and giving up. We need to remind ourselves that everything we accomplish, when the trying is too daunting, is a massive tick in the win column.

The same is true for people who don’t have a disability or fighting health issues. For example, I love writing, but often don’t feel up to it (mainly due to CRPS, but equally due to laziness). So when I make the effort to open my laptop and start tapping away at my keys, that’s a massive win. Going for a jog is good for you, we all know that. But when you look outside and see it tip down with rain/snow or blowing a gale, it’s much easier to turn over and stay in the nice warm bed. Actually getting up, strapping on your running shoes and going out for a run is a massive win.

So remember, the fact that you’ve started to climb that cliff, rather than turn around in defeat, is something to be proud of, and something the person at the top of the cliff won’t be able to see till you explain it to them. They still may not be able to see the cliff, but they’ll understand why you’re so daunted about climbing it. There is no try harder, because the hardest thing is trying.

Just for the record, I asked my Niece if I could write this and was given the green light. So I dedicate this to all climbers, and especially to my Niece, Rebecca Ross. May you keep climbing sweetie, and race you to the top!