About me section

Hi, my name is Paul, I’m 26 and I have CIDP (Chronic Inflammatory Demylinating Polyneuropathy). This blog will try to document my symptoms, progression and treatment from start to finish, along with my frequent encounters with the NHS in both West Yorkshire and south Wales. This blog is an attempt to keep you and more importantly me entertained on this ongoing, ruddy bumpy, uncomfortable and often frustrating journey.

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This is me. Mid way through the Yorkshire 3 peaks in July 2012. 13 miles down, 13 more to go! (Not at all demoralised)

I can honestly say, my feet have never ached so much in my entire life! But from this I hope you can tell I was just like everyone else; reasonably fit, happy, quite outdoorsy and a keen angler (A link to my other blog Paul on Coarse Fishing can be found here). Now, I’m considerably less fit, still happy (with a few moody bouts), generally house bound (unless I break the Zimmer out) and it’s been well over a year since I’ve wet a line. If you’ve read this far you’re probably either aware of what CIDP is or are thinking “what on earth is this guy on about?” If either of those are the case, you’re committed, and I’m about to begin the story from the beginning...

22 July 2013

Meeting with Debbie

It was time for me to make another appointment with Robin Lane Surgery. Prise aside, I never take time off work. If I’m ill, I’m ill, nothing that a Lemsip won’t sort. And if that fails there’s always solphadol! The prospect of taking an extended period of time off to get well never occurred to me, as I was prepared to soldier on.

As I’d been recently diagnosed, as entered the nurse practioner’s room quite prepared for a pep talk and to be on my way. This wasn’t the case; Debbie Jackson is quite possible one of the best and most understanding people I have ever met and what I thought was going to be a 10 minutes conversation turned into a 30 minutes detailed breakdown of everything I had been told (medically) as well as a whole bunch of things that I hadn’t even considered. It was here that it was really hammered home about the significance of my recent diagnosis, and how long it was going to take me to get back to normal. Guillian-Barre is quite rare and take involves a long recovery period, CIDP is more chronic and even more rare, and can last for years! Especially if not properly/successfully treated, caught in time or diagnosed, so it was important that I “take things easy”, as I was unfortunately in this for the long haul.
First order of business was arranging time off, that was followed by an appointment to see occupational health regarding any return to work and “reasonable adjustments”. Followed by a potential appointment to see a neurophysiotherapist (then maybe hydrotherapy), followed by a scheduled meeting with the Citizens Advice Bureau. Also a potential referral from the GP to the hospital for appliances (to assist me with my foot drop), there was A LOT to think about. What struck me was the genuine sincerity offered by Debbie. She was incredibly helpful and supportive to both me and my partner whilst we remained up in Leeds, and acted as another great ambassador for Robin Lane Surgery. She also re-iterated that time off to rest up was imperative and gave me a ream of paperwork to read through to help me with some difficult decisions that I had to make.

It was time to swallow my pride and have a word with work. To my surprise work were quite compliant with my need to rest, I imagine hobbling around the office I did pose a slight Health and Safety risk. So, after a long and horribly thorough hand over meeting, I was finally and officially off work (this will take some getting use too), the question remains, for how long?

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