Nothing about us, without us...

Is the clarion call of the disability movement for a long time, and its as relevant today as it was in the 60's & 70's... The core of this is having the "us" to stand up and be the one to be "about"... That's about being advocates, which is what this blog is about...

I've been "commissioned" to put down what I think this is all about, so these are my thoughts, what I try and explain in a day or over the course of week to people who've volunteered for the privilege...

It's also critically important for the congenital heart community, especially those of us who are adults. Yeah, us, the other 18's the ones who pick who we vote for, sleep with and should be control of our own lives and the things that affect us.

(And I'm a very strong advocate for independent living, so everyone who wants to have a safe expression of their own identity should be allowed to do so... and when its the big questions then their input should be facilitated neutrally and without bias - and that's a hell of a skill)

So, if we're going to be involved some of us will be singled out as advocates, either because we've volunteered to fulfill a role, because we're seen to be an "expert" or (and this does happen) because we're the only one of X (in our case GUCHs) that someone can get in touch with...

The dictionary says:

ad·vo·cate (dv-kt)

tr.v. ad·vo·cat·ed, ad·vo·cat·ing, ad·vo·cates

To speak, plead, or argue in favor of. See Synonyms at support.

n. (-kt, -kt)

1. One that argues for a cause; a supporter or defender: an advocate of civil rights.

2. One that pleads in anothers behalf; an intercessor: advocates for abused children and spouses.

3. A lawyer.

I'm going to focus on argues for a cause, because that's the role I most often find myself and hence is the most comfortable in speaking about.

Lesson 1 - speak about your cause from your perspective

You can't live in someone elses head, you don't know what they're really thinking, even if they say they agree with you...

You have to say what life is like for you, and use that as counterpoint to others...

For example, I've been interviewed by walking magazines and have been honest; I enjoy walking and yes although I've been to the top of the biggest hills I have days when I have to turn back, and I have friends for who those big hills will only be a dream... Only use their name if they're happy for you to, and never ever forget you're normally talking to someone after a story...

Lesson 2 - Be Honest

Don't make out you're healthier, or less healthy, than you are.

Linked to above you can only speak from your experience, so I can only say what worries me about the possible need for future surgery, how my work & condition interact, how my diabetes and my heart interact...

Lesson 3 - Remember when you are

I'm almost 40, my surgery was a lot of years ago... Progress has happened, new techniques, better anesthetic, better post-op etc etc Schools have changed... Always be aware what happened to you might not happen to others... but that in the absence of anything else you're the best example of X that the person has right now.

Lesson 4 - Research

Some will come from books, but most will come from talking to others like you... I say talking, I mean listening, and learning... What is an ICD, which Docs would the like to see again... What are their hopes and fears (not forgetting you can't speak for them, but this adds to your counterpoint)... An extreme example, I will never know what its like to be a female GUCH whose been told she shouldn't have children, but I have listened and I have read and although I can never do that justice I can tell others that this is a real issue, and that people in this situation need support and this is the sort of thing that some have said they helped...

which nicely leads me to

Lesson 5 - If you don't know, you don't know

Just admit it... If someone asks me a medically question, then the straight answer is I'm not a doctor, ask them... No I don't know what sort of valve you should have, but I do know where others who've had valve replacements chat online, who know the ups and downs of their type and will normally be happy to share with you.

Lesson 6 - Be you

If you're an artist, draw or paint, if you're a poet write a stanza, if you're into running or walking, run or walk... You are MORE THAN A HEART CONDITION!!!! Live your life, its the only one you're going to get...

Lesson 7 - Just say no

If you don't want to, or think you're not the right person for a topic... Just say no. No need to explain, no need to apologise... You are human, remember that, and you can walk away.

Lesson 8 - Do what you're good at

If you work best looking at detail, try and do that. If you're good at presenting, try and do that. If you're good at creative stuff, try and do that... You won't always get the choice, but start with what you're good at.

Lesson 9 - Have fun

You're an advocate, a spokesperson for your "kind" that doesn't make you a pompous ass... Do have fun, you don't have to be business all the time.

Lesson 10 - Grow a thick skin

Because you are you, because you can only speak from your perspective, some people in your community will not like what you say. Sorry, it happens. And just occasionally you might have to say you're upset or you're angry... To remind people that you're you...

I've no idea if they are in the correct order, but they are in my order. In an ideal world every cause would have a collection of advocates from the broad spectrum of the cause... But not every cause does, so my plea is to be the best that you can be... accept the knocks, grow the thick skin... Because someone has to speak up, and you're the best person to do it!

TTFN

Paul

Reflections...

This would've been the last night of the coast 2 coast, so a suitable point to review what I did, what went well and what didn't go well...

I did, 83 miles & 16,000ft of ascent, that is a damn good weeks walking in most people's books. I did it with a full camping load, and I enjoyed it.

Apart from the "Orton incident" navigation was spot on, timings were there or there abouts, food & water worked and worked well. The gear worked, the tent is cracking, the camping mat comfy and warm and there wasn't a walker out there who had dry boots.

I got a collection of 3 blisters, all on 1 foot my left. If it had just been the heel one (the most spectacular) and the one on the toe then I'd have been very tempted to carry on. However, the one of the pad made walking very difficult and when loaded almost impossible. Never had one there again, and despite someone suggesting they're indicative of wearing stilettos I still have no idea how it got there.

Am I disappointed I'm not still out there? Yes.

This was a walk over 6 months in the planning and training for, 6 months that got beaten by blisters. However, everything else worked, my legs were fine despite the mileage and weight, my back held up well and there's no reason why without those blisters I wouldn't be finishing.

Did I raise awareness? Well, there's a bunch of walkers who know all about us, some asked intelligent questions... One asked if I was carrying a defibrillator... I chose to view that as a joke... It was at the end of a long, hard day....

So what next? 12th June is the Liverpool Tunnel 10k, based on how my foot is doing today I'll be on the starting line (well at the back of the starting pack), I'm not going to get as much training is as I hoped, but hey ho, this is the kick off for the training for the next biggie - the Liverpool Marathon.

So, I'm disappointed I'm not still out there, happy with what I achieved, and ready to get my ass in gear for the next challenge

TTFN

Paul

C2C - Maps and Numbers

The post based on my walking journal will come in a couple of days... However for the number and map fiends out there!

Oh, and some of the problem with my foot seems to be linked to the footbed, it seems to have swollen in the wet (Days 1 - 5 inc) and rucked up slightly at the back and the surface material's come loose where the pad of my left foot would've been hitting it. Slender margins, but enough to wreck a walk...

TTFN

Paul




Day 1 St Bees to Ennerdale Water

Day 2 - Ennerdale Water to Borrowdale


Day 3 - Borrowdale to Grasmere


Day 4 - Grasmere to Patterdale

Day 5 - Patterdale to Shap


Day 6 - Shap to Kirkby Stephen

The totals:

	Miles	Ft ascent	km	m ascent	Calories
Day 1	19	3,790	31	1,155	3,546
Day 2	8	2,010	13	606	1,532
Day 3	8	2,000	12	609	1,500
Day 4	9	2,193	13	668	1,718
Day 5	15	3,732	24	1,137	3,039
Day 6	23	2,415	35	736	4,148
Totals	83	16,140	127	4,911	15,483

Nope, I'm not going to change...

There's been a bit of a debate on Facebook... that's debate as in "debate".

Basically, a GUCH has suggested that me putting up my adventures may make other GUCHs who aren't as healthy as me feel bad. And that in some way I'm letting them down by not admitting my frailties...

The debate is here, and as you'll see I got angry at the suggestion I never say how hard things are... http://www.facebook.com/permalink.php?story_fbid=10150256757410960&id=634670959&notif_t=feed_comment

I've been told this before, and I rejected it then and I reject it now.

I enjoy what I do, as I've said this blog will be honest and those who've read most of the posts will have seen the runs that didn't go to plan, shared in my successes (both on my feet and in other areas) and seen the days when all I've wanted to do is curl up in a ball and cry and wish my friends were alive, healthy and well.

If I was just a running/climbing/sporty GUCH and only posted about that then I might feel some doubt about it, but I also work hard to make sure all of those affected by CHD get the lives they deserve... My work with GUCH PA and Children's Heart Federation, my more generic work on disability issues in the workplace all underpin what I do for fun!

But it very hard to make a blog about a meeting interesting, or explain how you've read a 100 page document and maybe made 3 changes that will help us all...

Which brings me back to the simple fact that I enjoy what I do, and sharing it with my friends, if friends don't like that then they are are liberty to unfriend me, or not follow me on twitter.

TTFN

Paul

ps my blisters are slowly healing, the big one on the heel burst last night in a messy way...

Coast 2 Coast - the kit list

With 2 weeks to go, I've just spent a couple of days pottering around the shops looking for those little bits and bobs that'll make my life a little less uncomfortable (yes that written correctly)... Kit lists are one of those things that can gnarly between walkers, do you include water, do you include food... For the purposes of telling you lot what I'm going to be carrying I'll include both...

Feet -

1 pair of Hi-Tec Cascadia's - thank you Hi Tec!!! Over 50 miles walked in a variety of conditions and they feel comfy & supportive

3 pairs of Bridgedale midweight socks - 1 on, 1 drying and 1 spare

Legwear -

2 x salomon trail shorts - my new favourite legwear
1 x walking trousers - probably my paramo's, but if the long range weather looks iffy then a pair of lightweight softshell montane's

Tops -

3 x walking t-shirts (same rotation as the socks)
1 x lightweight shirt

Headwear -

1 x North Face flight series baseball cap
1 x apex running glasses

Waterproofs -

Paramo Fuera jacket & Trousers - not fully waterproof but they've not been beaten by the Peak District!!!

Thermal layers -

Paramo Torres Gilet & Sleeves - Just in case, and to snuggle into.

Accommodation -

Terra Nova Laser Competition & footprint
Pacfic Outdoor Ether
Berghaus sleeping bag
Sea & Summit thermo liner (in case of cold nights)

Cooking gear -

1 x Go Gear titanium stove
1 x titanium pan set
1 x titanium plate
1 x titanium spork
1 x plastic spork

Sea to Summit portable kitchen - Thanks John!!! If I end up at a campsite early and there's a shop I'll create from fresh!

Food & Drink -

I'm going to carry a few days supplies and restock as I go, but to start they'll be some powerbar energy bars & brevita biscuits for breakfast & snacking, noodles, and some dehydrated chilli.

A selection of tea & coffee (liberated from the office) and milk tubes (liberated from a well known supermarket cafe)

3l water in a Osprey Hydro pack - topped up whenever I can

Personal Gear -

Sea to Summit towel
Dry soap leaves
Biodegradable soap
Toothbrush & toothpaste
Personal medication
Pain killers
Imodium
Travel sized savlon & sudocrem
Travel Trowel, loo roll and alcohol hand cleanser
North Face Mules - slippers for my tent and pottering around campsites.
First Aid kit
Leatherman Fuse multitool
Duck tape
Silva compass

Rucksack -

Osprey Kesterl 48l

Walking Poles -

Black Diamond - cracking poles, some people use them to ski on!

Lighting -

Alpkit Gamma - head torch
Alpkit bulb - tent torch

Tech -
(its me what did you expect)

1 x Kindle - loaded with books
1 x Phillips Ariaz MP3 player - loaded
1 x HTC Desire - in a waterproof case, with ViewRanger app & the Coast 2 Coast route loaded on it. This will have all of it's smartphone abilities turned off unless its attached to a plug.
1 x Samsung Solid Immersion - the brick kharzi of phones, on a different network
1 x Casio Protrek Watch - inc compass, altimeter & barometer
2 x veho pebble backup batteries & cables
1 x USB charging plug
1 x Panasonic Lumix camera

Between the tech I'll be trying to tweet when I reach key stages, but signal will make this erratic.

Guides and Maps -
Cicerone Guide - has OS mapping
Trailblazer guide - thanks John! This has the best info sections I've found and good detailed hand drawn maps
Harvey's strip maps - 1 for each half
All in an outdoors design map bag.

Bags -
a selection of dry bags to keep everything in

That sounds a lot, but it'll keep me going for a couple of weeks, and when fully loaded comes in at 13kg, which compared with my loads of past walks it quite light.

Right, I'm trying work out how to pack this lot... actually its seeing if there's another way of packing it... again

TTFN

Paul