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...

9 September 2013

Starting treatment – They hear me rattlin’ they hatin’

The evening after seeing Dr Dunn I visited the pharmacy to collect my prescription. The pharmacist looked at me and my partner in horror when she saw how much I would be taking. She actually proceeded to warn me that this quantity of the immuno-suppressive drugs would seriously lower my immune system. That was the point. 

13 a day and 14 on a Monday. Lucky me!

Appointment with Dr Dunn

I was now getting to be a walking map of the LGI, and come appointment day I intended on getting to the waiting room with plenty of time to spare, on the off chance that I was going to get in and be seen early. My symptoms however had decided against this and prior to leaving for the hospital I suffered one of the worst falls since being ill. My legs were getting progressively weaker, steps were proving near impossible and I was finding being a strong righty meant I was dragging my right foot and taking the brunt of the fall on my left. Cuts and bruises were aplenty. This fall culminated in re-opening on old scab on my left knee as well as adding a new one with a bruise to match, and leaving my confidence quite shaken. 

Scans, scans and more Scans

Since seeing Dr. Azam I had received a series of appointment letters telling me that I needed to attend the hospital for scans to check for anything which wasn’t picked up on the physical examinations. I needed a full abdominal scan as well as a cardiac echo ultrasound to make sure everything (else) was working ok under the surface.

7 August 2013

GBS / CIDP and related support groups. Salvation in Facebook.

On becoming ill it was very apparent that there wasn’t a great deal out there in terms of support groups for Guillian-Barre and CIDP sufferers. It was useful to actually Google the illness  (now that I knew what I was looking for), but the amount of coverage the illness receive was quite scanty (nervous term there).

Citizens Advice Bureau.

A few days after my meeting with Debbie Jackson and Occupational Health my partner and I booked in to the local drop in centre of Pudsey’s CAB. Again looking for some advice on my options, and who I needed to speak to. I was still unprepared to accept that my illness now meant that I was physically disabled (although my body bore the bruises, cuts and scrapes showing that my mobility issues were now becoming a more dangerous adventure).

Occupational Health and other adventures...

On the advice of Debbie Jackson I booked an appointment to see Occupational Health. Apparently there isn’t anything that can’t be organised from Robin Lane Surgery. I wasn’t sure what to expect from this chap, and sadly after my first (and only) encounter, it wasn’t a great deal.