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

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).

There is a UK GBS/CIDP website, but looking at the forums the activity and foot fall is very limited. My initial thoughts were ones of frustration and disappointment. Who was I going to talk to about my symptoms? Was I “textbook” case, was I something more “special”? Fortunately with the expansion of social media salvation came in the for of Facebook (Something I never thought I would say). The same support group Facebook page was a hive of activity, and people were actually talking about… everything. Symptoms, opinions, treatments, options, views and many things in between. I quickly posted about condition and had a plethora of replies. They ranged from support and questions to general advice from people who are also walking down this uncomfortable path.

It was then that I decided to write a blog about my experiences, progression and treatment, to try and document what I was going through and the ups and down I have faced in the hope that someone in my position will read it and think “This is exactly what I’m going through too”, instead of going through the rollercoaster of internet self diagnosis’s which I endured.  One thing is for certain, the Facebook support group was a great help and helped ease a lot of questions I had whirring around in my head, and I will continue to be and active member of the group for many years to come.

1 comment:

  1. Greetings. I included your blog and or video in my website. It's a list of first-person accounts of people who are battling GPS and its variants.