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

Centre Parcs – The highs and the lows (and I’m not just talking about the rapids)

The wait between my first appointment with Dr. Azam and the next appointment with Dr. Dunn was agonizing, especially as Dr. Azam had suggested CIDP. Google here I come (never one to follow my own advice)! Having read about the symptoms, progression and treatment online, (it has to be said that Wikipedia’s constant use of the morbidity does nothing to inspire confidence) it seemed fairly clear that the good Doctor might be on to a winner. Some sites and blogs my partner and I read could frankly been written by myself.

After receiving my initial diagnosis of mild GBS my symptoms showed no sign of remaining consistent, but as Dr Smith (Neurophysiologist) suggested what I needed to rest and give my nerves a chance to recover. Fortunately I had already booked a week’s holiday off work, so perhaps this may be exactly what the Dr ordered! The week was to be spent in Longleat Centre Parcs, somewhere I had been previously (many moons ago, before everything became ridiculously expensive) and I was very excited to get back there for some wild water rapid action! My symptoms showed no signs of relaxing with me, and on the first day, despite being incredibly careful, my legs went from under me and I landed on slippery stones poolside, which took a chunk out of my knee for good measure. This fall really knocked my confidence and now I went from walking (hobbling) to positively crawling – I didn’t want to go down again. Any time I walked across anything remotely slippery made me feel uneasy and I almost expected myself to fall. Frustratingly, because of the progression of my symptoms I was now unable to catch myself from falling, and it was now more a case of “brace for impact” when going down.

I did however find that being in the water had a positive effect on my on-going balance issues. The support the water provided meant that I felt almost normal, and was incredibly content to bob up and down in the pool for hours. My partner remarked that I transformed into another person when in the pool. It also gave my legs the chance to have a workout, something that I had not been able to do for a long time. Although my confidence did take a knock early on, and I did fall quite a few more times, I really believed that the exercise I was getting was beneficial and over the next 5 days I continued to increase the amount that I was swimming and walking. I also seemed to be falling less and less. Maybe I was imagining it, but as the week drew to a close maybe my symptoms were becoming less too?
My symptoms however did return with a vengeance on the Sunday after our break (we arrived home Friday evening). I think having fun and really pushing myself whilst away caught up with me over the coming days and once again I was reduced to a shambles. I had tired myself out. Walking and balancing became very difficult again and any strength and grip that I thought I recovered quickly diminished. Lets just say I did a lot of laying down on the sofa Monday evening, after work. I didn’t make it to work on the Tuesday. The stairs in our house were also taking their toll, making me very tired after each trip up and down. On one particular occasion I slipped down the stairs and landed firmly on my coccyx, the words that left my mouth will not be repeated, but I had a sore bum for several days. These inconsistent symptoms were so frustrating! After speaking to my manager on the Monday afternoon, it seemed it was time to get a Dr’s opinion on whether I required a medical rest from work (even though I really didn’t want to)...

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