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...

7 August 2013

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).

Arriving at the offices (an old church near the Worlds End pub) I filled out the necessary forms and took a seat. It was obvious that there was going to be a wait, but was it going to be worth it this time?  Short answer, no.

After waiting more than 2 and a half hours we were called through to a side office were I asked a series of quite serious financial questions. I was asked “have I visited the CAB website?” and was the given print outs from the website (which had been lifted from various other websites). I then asked about the best way to go about claiming for disability benefit as I had no experience of what to expect. There was an offer by them to fill out the form (I did hope that my partner and I articulated ourselves in such a way that it made clear we were both able to fill out forms, despite how incredibly repetitive they are), which we politely declined. I was then advised that the best people to speak to would be the bank (The not-so-helpful bank) which I had already done, and there wasn’t anything else that could be done by the CAB. The sinking feeling returned and I left thinking that if anything was going to get done, it was going to have to be done on my own.

Hilariously, 3 days after meeting with the CAB I received a feedback letter, asking to rate the advice I had received. “What bloody advice!” It went in the recycling along the other “helpful” printouts.

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