LIPS Trials, 100 days and Work:

Standard

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.

Advertisements

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

Standard

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:

Image

 

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

Standard

image

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

Standard
image

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.

A Day In My Life Photo Challenge for 30 Days of CRPS/RSD Awareness

Standard

Day 1 – Introduce yourself:

My name is Dominic Ross, I’m 29 and have #CRPS/#RSD in my left leg for four years this Christmas.
I’m married to Lorna Ross and we both have two boys, Joe (9) and Ashley (4). You can follow me on Twitter as @youngdad33 or follow my blog at http://www.fightingeveryday.wordpress.com

For the month of November, I will be posting daily photos to raise awareness of CRPS/RSD. There is a big group dedicated to this on Facebook which is open to join under the same name as the post title.

If you don’t know what CRPS or RSD is (it has two names because there are two types and the USA uses RSD whilst Europe uses CRPS), feel free to ask me any questions via the comments field or follow this link to the Wikipedia page which will explain it.

If you know anyone in the medical or caring profession, I would ask that you pass this on to them, as many people (including general practisioners and nurses) have never heard of CRPS.
If you are a fellow fighter/sufferer, feel free to follow me on twitter were I am very active chatting on a daily basis with other fellow sufferers. A good support network is essential to dealing with this curse.

image

A Day In My Life Photo Challenge for 30 Days of CRPS/RSD Awareness

Standard

Day 1 – Introduce yourself:

My name is Dominic Ross, I’m 29 and have #CRPS/#RSD in my left leg for four years this Christmas.
I’m married to Lorna Ross and we both have two boys, Joe (9) and Ashley (4). You can follow me on Twitter as @youngdad33 or follow my blog at http://www.fightingeveryday.wordpress.com

For the month of November, I will be posting daily photos to raise awareness of CRPS/RSD. There is a big group dedicated to this on Facebook which is open to join under the same name as the post title.

If you don’t know what CRPS or RSD is (it has two names because there are two types and the USA uses RSD whilst Europe uses CRPS), feel free to ask me any questions via the comments field or follow this link to the Wikipedia page which will explain it.

If you know anyone in the medical or caring profession, I would ask that you pass this on to them, as many people (including general practisioners and nurses) have never heard of CRPS.
If you are a fellow fighter/sufferer, feel free to follow me on twitter were I am very active chatting on a daily basis with other fellow sufferers. A good support network is essential to dealing with this curse.

Update and the future

Standard

To say it has been a busy and emotional couple of months would be underestimating it. It was five to one in the morning when I started writing this. I was tired and in pain and my brain wouldn’t shut up about all the great ideas I have in my head.

Writing:
Unsurprisingly, the majority of my ideas in my head are about writing. I’ve been very lapse recently on the writing front. Actually, that’s a bit unfair. I’ve been writing plenty, but none of it is to do with my novels (yes, plural). On the upside, it has all been to do with my freelancing business which, although I’m not getting paid for any of it (I guess you could say I’ve been putting the free into freelancing too literally), is giving me great experience which is almost as good as money. When I come to tout my services out there and bidding for jobs, I’ll not only have the last year’s experience behind me, but the massive catalogue of samples to refer people to, not to mention some previous employers only too happy to give a reference. I was very lucky to be chosen to report on the games of the British Baseball Federation’s Single – A league. Single-A is the lowest grade of league for adult baseball. It combines my passion for baseball with my passion for writing. My second freelance job is writing reviews for the PocketDroid website. We have been upping our game a bit recently, being sent items to review.
My creative writing hasn’t been totally laying to rest, however. Thanks to the ever helpful and relentlessly supportive people at the Basildon Writers Group, I have managed to pen a couple of good short stories, which have now been entered into a competition for the Fiction Desk’s ghost story competition. I should hear in the next couple of months how I got on with that.

Work:
In my last post, I said I was a week away from returning to work. That has gone well, but it has been far from easy. Previously, when I’ve returned to work, I always felt that the recuperation shifts (several weeks of working shorter hours and slowly building them up) were a waste of time. This time,  I have found it much more difficult to keep up. Even working part-time hours of one day on, one day off has been challenging. It is clearly getting to the point where going to work won’t be a possibility, and that is something I’m not sure I could handle. Being the stubborn chap that I am, I won’t give up so quietly, but I have partially accepted there will be a time when I will have to consider myself retired.
I recently saw the Force Medical Officer (a Doctor who works for my employer) who suggested outright that if I don’t work from home, there will be a time when my employer will have no choice but to let me go. I am very grateful that it hasn’t happened already, and couldn’t ask for a more understanding employer, But I also accept that they have a business to run, and need people they can rely on, not ghosts on their staff sheets. As a result, the FMO says that if he can’t get work to give me a home job (which would be monotonous beyond belief) then he would have little option left than to medically retire me on grounds of disability. He says at least that way, I will have less problems with benefits (if I’ve been medically retired from a job, they’ll find it harder to MAKE me get a new one. I’m sure they’ll try, but it would be harder for them).

Disability/CRPS:

My CRPS hasn’t been pulling any punches recently, which is mainly why I was off work for so long. After the disaster that was my Disability Living Allowance tribunal last year, we re-applied on a brand new case. We made it clear that I was vulnerable to falls, dizzy spells, tiring quickly, extreme pain and needed help just to get up from the toilet most of the time. Yet they still wanted more evidence, so they wrote off to my doctors and consultants. If that wasn’t enough, they sent an independent Dr round to assess me.
For our first meeting, I was meant to see him. Unfortunately, I didn’t get the appointment letter till a week after the appointment was due. Then, a couple of weeks ago, I got a phone call from a foreign man saying he needed to speak to me. I very nearly put the phone down thinking it was a spam call, but it was the independent Dr who said he was due to come see me today. Advanced warning would have been nice! I was having a bad pain day and had the beginnings of a migraine coming on, so figured I would look like crap and told him to come along. It turns out they had been sending all the letters to a flat upstairs which has been empty for several months. Still, the assessment went as well as it could, I think, and now have to play the waiting game to see what the final ‘decision Maker’, a person who reads all the documents, doctors reports and application forms, has no medical training what so ever and is told to stamp the letter with approved or denied. It will be interesting to see what they decide…