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...

24 June 2013

Google is the Enemy!

What I would advise anyone who is currently in “limbo land” – awaiting diagnosis and finding out the cause of their symptoms, is to stay well clear of Googling your symptoms. We all do it. Unfortunately neurological disorders of all shapes and sizes manifest with my symptoms, which can cause (if you’re like me) a considerable amount of emotional upheaval.  

I have diagnosed myself with almost every neurological disorder currently discovered (well not all, but most of them) including MS and Motor Neurone Disease (also called ALS). I was a walking catastrophe. The more I was reading about these diseases (more specifically ALS) the more I began to panic. I also started manifesting physical symptoms that I had read about. I have become increasingly aware and surprised at the way our bodies can physically manifest symptoms that you worry (or obsess) about. For example, I know this sounds odd, but just think about how much saliva you produce. Does it seem like a lot?... Now it will!
This was the very definition of “A Vicious Circle” and before long I had been reduced to sleepless nights, palpitations and a considerable worsening of my already progressive symptoms. I am not proud to say that on more than one occasion I woke up in the middle of the night and although incredibly panicked, I was ready to accept that I had some horrific disease. Googling is so common place, I was searching in every spare 5 minutes I had, reading horror stories and convincing myself that I was frankly circling the plug hole.
I must repeat DO NOT GOOGLE SYMPTOMS. The internet is an awesome tool, but you can definitely have too much of a good thing.

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