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.
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.
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.
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.