Tag Archives: Adilamumab

30 Years an Arthritic

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I haven’t been near this blog for a good long while – my bad (as the youngsters say these days).  A few of my colleagues and friends have also asked me why they hadn’t seen anything on my blog for a while – oh, the shame!

Then, just tonight, a friend of my wife, who now lives in Australia, IM’d her to ask if I’d ever found a paleo diet to be helpful.  Laura has had an amazing transformation to health and feeling awesome by cutting out wheat and sugar.  Of course, yes, I have had an amazing transformation too – and I’ve had a few ups and downs along the way.

And, I have reached a milestone of sorts.  I’ve now had arthritis for 60% of my life – 30 years.  This has made me reflect a bit on what this means and what the next phase of living with this challenging disease might be like.

It’s been a long story.  I had my 1st symptoms in August 1985.  I remember it very well because I had not long returned from an Interrail holiday around Europe with my mate Andy.  I would wake in the middle of the night, sweating, with an excruciatingly sore knee, wrist, shoulder, ankle – never the same joint twice.  I wouldn’t be able to move, the pain was searing and I could do nothing other than lie shivering in my own sweat until I drifted off to sleep again – which did happen eventually.  I woke up the next day feeling worn out but the pain in whatever joint was affected had completely disappeared.

The night sweats and sore joints continued to happen but were fairly random.  I went to see my GP.  He poo-pooed my complaints and brushed them aside, saying that there was no physical evidence to show that anything was wrong and it was probably ‘my age’.  He was a prick!  Even my Mum thought so.  And that wasn’t the only time I went to see the prick about the same thing.

I don’t dwell on whether proper investigation at that time may have given me a better outcome.  I prefer to look forward – most of the time.

Anyway, 2 years of random symptoms culminated in “The Bloody Nightmare” when I was 21.  This was likely triggered by stress.  I have learned recently that stress and anxiety contribute to health and wellbeing like nothing I could have ever imagined.

Anyway, back to The Bloody Nightmare.  When I was 21, I moved to London.  I was in a relationship.  We were staying with her parents.  Overnight, my whole life changed.  I was travelling up to 4 hours a day to and from work (nothing that I had ever experienced before).  The relationship wasn’t as rosy as I thought it was going to be.  Her father was ill with a chronic degenerative disease and, as I saw it, didn’t receive a great deal of support or sympathy from his wife.  Her parent’s relationship was frosty at best and sometimes explosive.  My girlfriend was suffocatingly jealous.  I had very little in the way of ‘a life’.  It was hell.

I left.

I had been diagnosed with rheumatoid arthritis 3 weeks prior to me packing my car with everything I had.  I drove off not knowing where I was going to stay.

Trauma City!  Through a friend of a friend I found somewhere to go.  But, within a couple of weeks my arthritis had flared and I couldn’t control my pain, I could hardly move, I couldn’t sleep, I stopped going to work, I lost weight.  Everything went to shit.  Stress.

Fast forward three months and I was being treated by Dr Terence Gibson and his team at Guy’s Hospital.  I’ll never forget him, he was a lovely man and we ended up on 1st name terms.  He got my disease under control.

Everything was awesome and I drifted into remission.  Aside from my left hip deteriorating, my symptoms were few and far between.  A massive flare up in 2005 rekindled my relationship with the NHS.  Lots of investigation, experimenting with different combinations of drugs and 2 years later, I had a treatment regime that worked.

But, I didn’t get better in the way I expected or wanted.  So, I tried paleo.

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This is a Facebook post from September 2011.  In fact, I am now a steady 69/70 kilos, that’s just where I levelled out.  I started at 87 kilos (13 stones and 10 pounds).  I can’t quite remember being that heavy or even believe that I was.

Paleo saved me.  There is no doubt that I would still be on a very heavy drug regime and still be feeling that something was missing, had I not changed my way of life.  I still take drugs, but at nowhere near the frequency that I used to.

But, it has been a challenge.  You just have to read back through the posts on the blog to get a sense of how much.  But I am still determined and I will never go back.  And, I really have never felt so well.

So, what of the future?  30 years is a long time to live with anything and it does have it’s consequences.  A lot (I would say, most) people with rheumatoid start to have symptoms in their late 30s/early 40s.  By the time most people have had this for 30 years, they’re likely into their 70s – and don’t forget that treatments for RA in 2015 are much more sophisticated that they were in the 80s.  This likely means that the inevitable damage to their bodies is better controlled.

I’m 49.  I’d like to think that I have another 35 years to go. That’s another 35 years of living with arthritis.  I am already finding that bits of me need corrected, so I have become cautious about the future, which is a new feeling for me and it doesn’t sit at all well.

Darrach

I’ve just had surgery on my left wrist.  This is a before and after picture of Darrach’s Procedure (this isn’t my x-ray, but it’s what my wrist will look like right now).

In the procedure, the head of the Ulna is removed to save the tendon that operates the pinkie, as it runs over it.

In rheumatoid arthritis, the ends of bones can get a bit rough and, if there’s a tendon in the way, it’s kind of like running a bit of twine over a saw blade.  So, it had to go.  In fact, not one to do stuff by halves, the surgery extended to removing lumps of chronically inflamed (and solid) tissue and freeing the tendons for all 4 fingers.

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So, I have another nice scar.  I also have a very comfortable splint, which makes the joint feel much more secure.  Honestly, I’m three weeks in and the thing still doesn’t feel like my own.

And it’s a bit sore.

And, if I move my wrist at all I can feel the end of the bone moving around – and that is very unpleasant.  But in a kind of good way!

And my drumming has had to take a back seat, which is a complete bummer as the band are very busy.  New band, I have moved on.

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And in the last year I took up the ukulele, which is absolutely the best fun instrument to play.  I was introduced to it by my muso friend, Leon, who is an awesome guitarist, mandolin player, pianist, etc, etc, etc.  He’s one of these guys who can get a tune out of anything – bastard!

Anyway, Leon and I frequent the local Open Mic Nights and have some fun singing and playing.  But, that has taken a back seat too.

But, I’ll be back.  Like the Terminator – or a bad smell.

And what about other bits of me that may need a ‘correction?’  Well, my surgeon is already looking at my right wrist and talking about doing the same.  My 3 dislocated toes could be corrected with surgery but I’ve resisted.  I have an issue with my neck, which may force surgery in the future, but I really hope not.  My right hand could be straightened by replacing the knuckle joints, but I really don’t fancy that right now.

I could just go into hospital for a couple of weeks, get them to do everything and come out a new man!  I’m joking, but, this is the consequence of having a chronic disease for 30 years.  Things get bad and need some specialist help.

Could my outcome have been different?  I never think about what my life could’ve been like if the prick had acted differently.  Would I be better?  Would it have been an easier ride?  Would I have needed these various surgeries?  Would my wife and family not have had to deal with me being ill and in hospital numerous times?

It’s pointless to think that way.  I am who I am because of my experience and I kind of like who I am.

The one thing I do think about is, “If only I had known about paleo years ago, before all this shit happened”.  As a 19 or 21 year old, I may have poo-pooed the idea (like the prick) but, I did try various, apparently amazing, diets which claimed to be cures.  I even ate raw liver for heaven’s sake!  So, I’d like to think that I would’ve been receptive and would have given it a try.

Well, 4 years after giving it a try, I still believe it’s the right way to nourish yourself and the best way to a healthy life.  I haven’t reclaimed the same feeling I had when, after 3 months of being strictly paleo, I stepped away from my drugs.  But, in the last couple of years, I have had a few challenges, which I may or may not talk about!

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But, here I am.  Feeling guilty that I haven’t written anything for over a year.  Feeling humbled that people have asked why I haven’t been writing and that they want to hear more.  Feeling good about sitting in front of my PC at 1:40am getting this stuff down after a friend gave me a nudge (albeit without her knowing).

Feeling that I do have something to say and that, maybe, I could make a difference, even if it was just to one person – it would be worth it.  Feeling renewed and determined to keep writing.  Feeling like I should go to bed but I need to sort out the cat litter tray – bugger!

Feeling slightly embarrassed by the naff picture (I tried and tried but I just looked daft).

Be determined.  Be paleo.  Live healthy.

Sweets, Swelling and Selfies

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This post was going to be called “Man Boobs No More”, but I changed my mind at the last minute.  I will, however, come on to my man boobs later.

Er……oops, that could be read a number of ways!  What I mean is, I will refer to the subject of my man boobs a bit later on.

I’ve been feeling a wee bit guilty about not writing.  I do love writing my blog and I was VERY surprised to find that my last post was in May last year.  Last year, 2013!  I would say, in my defence, that life has been awfully busy in the last 8 months or so.

So, what has happened?

Well, first of all I left one band and joined 2 others.  This meant getting down to quite a punishing rehearsal schedule and, in total, I had to learn around 50 new songs and be gig ready pretty quickly.  In the last 8 months, I’ve been in more random rehearsal spaces and done more music stuff than I can shake a stick at.

RehearsalSpaceMontage

Practise

Mad, brilliant fun but completely knackering.

It has also meant a lot of practise on my wee electronic kit at home, which is supposed to be the quietest way to get some practise in.  I still manage to disturb everyone in the house, though!

Then we had our summer family holiday in France, which was awesome.  I’ll get to that in a moment.

Then after months of delays, we were finally granted permission to extend the house.  We appointed a builder and the work started.  This introduced a load more distractions in the 10 weeks that followed.  The build was finished on the 20th of December, so Christmas brought new bedrooms for the kids, BUT, it still isn’t completely furnished or decorated and there is still some internal work to do (which is my job) so I have a few more distractions.

With all this going on, could I have found a couple of hours to write some stuff for my blog?  Yes, of course I could but I kept putting it off.

Then, this week, I received a reminder that my blog was due for renewal.  So I logged on and found a message from a fellow arthritic dated July 2013.  I hadn’t seen it.  Now, I make a point of replying to everyone who gets in touch via the blog, so I felt really bad that I had failed this time – and that it was from so long ago.

Closing her message, Sue wrote, “Please do keep posting.  Your blogs are incredibly helpful and inspiring.”  I suddenly remembered why I started this thing in the first place and felt quite humbled, so thank you Sue for giving me a wake up call.  And thanks also to Jono (my wife’s cousin’s husband) for telling Sue about my blog.

Right.  The last time I blogged I had reached the point of no return and had felt the need to take my medication.  This has happened twice since then and I seem to have settled into taking the drugs every 3 months.  I still haven’t had the courage to sit through one of these ‘mini flare ups’ and see if my joints settle down.  I get a bit scared.

I know that, at some point, I will have to try powering through these tough times but life just gets in the way.  There is always family stuff to do, my job, a rehearsal, a gig, stuff to do around the house and a whole bunch of other stuff that demands attention and action.

Lots of stuff!

And, let’s not lie about it, it’s bloody painful.  I lose all the strength in my limbs, I have no power in my hands, even to the point of struggling with cuff links and not being able to turn down my shirt collar.  I have trouble with stairs and my ankles and feet are sometimes too painful to carry my weight.  Enough really is enough when you have to ask your daughter to help you get dressed.  So, I give in, inject, and within days I’m feeling better.  Whether I would feel better anyway without taking the drugs is something I’m just going to have to think about trying – but I really am a bit of a scaredy-cat.

But, I could be helping myself a bit more.  Since France, I’ve been in and out of eating clean and I have the results to show for it – this is the Sweets and Swelling bit.

I know that eating wheat is bad for me.  I have an immediate reaction to it and it’s not pleasant.  Everyone should read a book called Wheat Belly – everyone!  Anyway, at a very nice restaurant in the tiny French village of St Avit Senieur, I ordered a pudding which was lovely but made with flour.  The kids told me off.  My wife shot me a disapproving look.  I knew what I was doing.  I had a leaky gut for a couple of days after that.  I stay away from wheat.

Processed sugar also has a very bad affect on me and I’m finding more and more that the longer I stay away from processed stuff, the more extreme the reaction when it gets into my diet.  I don’t have much willpower.  My colleagues at work will tell you, if there are ever sweets on our desks and I have one, you can kiss goodbye to the rest because I’ll have the lot.  I fall off the wagon now and then.

SportsMixWhen this happens, I’ll drop into Sainsbury’s or Tesco on the way home and pick up a bag of Sports Mix – they’re my favourite.  Give me 10 minutes and they’ll all be gone.

I’m just a sucker for them.

In the last few days, my wife has been at a networking event for people from her industry.  There were bowls of sweets on the tables and, because her friends and colleagues know we have 3 kids, she kept being given sweets to bring home for them.  We ended up with tons and tons of sweets and they were all like this, just processed sugar on a stick.

SweetsFor me, that’s a red rag to a bull and I ate quite a lot.  The result, crippling, painful swollen fingers and eczema.

Sugar really is nasty stuff.  Here are the results of my lack of willpower.  A beautifully swollen pinky joint and the nastiest eczema breakout I’ve had in ages.  If I stay clean, the condition of my skin is amazing.  If I don’t, this happens.

Finger and Hand

So, that was today, Thursday 6th February.  Give it a few days and my joints and skin will be back to normal.  Sugar really is poison and we should all stay away from it.

So, I’ve covered Sweets and Swelling.  What about Selfies?  Back to France.

Our holiday in France was amazing for so many different reasons.  We had a beautiful villa with a private pool, the weather was superb, the people were lovely, the little bastide towns were gorgeous, the countryside was beautiful and we discovered that the Dordogne is one of the most fabulous parts of the world.

I did what I always do.  Completely in love with the place, I was in a fantasy, talking about buying a farmhouse, selling up and retiring there and I slowed the car at every ‘for sale’ sign we passed.  All nonsense, of course, but great to let one’s imagination wander.

The food was a big surprise.  I found that I had a huge choice.  Ordering in restaurants was easy.  I did make a few poor choices, but I knew what I was doing and anyway, the kids let me know about it so I was shamed mercilessly.  For the most part, I was able to eat like a horse!  When in France……

Anyway, here are some of the things we ate.  Lots of meat, lots of veg, lots of fruit, just what paleo man would eat.

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We ate a lot of food – everyone did.  But, it was all good stuff.  We had a large cooked breakfast every morning, we drank LOADS of the local wine and ate a big lunch and dinner.  The entire holiday was really just hopping from one eatery to another, but, I have never felt so good and I actually came home 2.2 kilos lighter than I was before the holiday.

When does that ever happen?  People who lose weight on holiday normally have a dose of the squits or some other tummy troubles.  I caught myself in the mirror having a shave one morning and I thought to myself, “Blimey, you don’t look too bad”.  Following in my eldest daughter’s footsteps, I reached for my phone a took a selfie.

Selfie1With Twitter and Instagram at her fingertips, Catherine is definitely one of the selfie generation and we’re always trying to give her good advice, trying to keep her safe and generally giving her a hard time about it.  So, here’s me not taking my own advice, with clothes and without.  

selfie2I think I look OK for a 47 year old chronic arthritic who takes little to no exercise.  This is all diet, nothing else.

Which brings me to my man boobs.  3 years ago, I was growing a pair.  Now they’ve gone.  I’ve done nothing except change what I eat.  Aside from a few misguided lapses of willpower, I have kept my diet as clean as I can and I’m now at a steady 73 kilos, just perfect for my height.  My BMI is smack bang in the middle of normal.

3 years ago, my BMI put me in the overweight category.  Not now.  Even better, I know that I can control my arthritis with food.  I know what works and what doesn’t.  I’ve moved on from constantly experimenting – I don’t feel I have to do that any more.  I just have to do better and stay clean.  Maybe I can still be free from the drugs completely.

Maybe.

The Log Is The Blog 2

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The Return of Humira

Well, I have had to take my meds.

A couple of months ago, I had a pretty rough time.  After the euphoria of seeing my consultant, playing mind games with her registrar and officially coming off my medication, I was feeling amazing, confident, bouncy, full of myself and ready for a drug free ‘rest of my life’.  The reality, however, is that I’m not cured.

Bugger!

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My daily log tells the story.  From the start of February, things started to take a dive and I was feeling more unwell every day.

Unlike me, I started to worry.  I tried to be patient and give it another day, and another, and another.  But, it just wasn’t happening.

In the early hours of Thursday 14th February, after being unable to sleep, I hobbled out to the garage (where I keep the fridge for my drugs – there’s food in there too, I don’t just have a ‘drug fridge’) and injected.  This was a big thing for me.

I’ve said before that I’m lucky, in that Humira establishes itself readily, so I was quickly feeling better – as the following days in my log show.

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I was, however, quite disheartened because I had been clean.

But, really thinking about it, while I had been very clean with the food I was eating, I hadn’t stopped drinking.  Well, I can’t resist a gin and tonic or six now and then!  Who can?  Well, I suppose lots of people can, but I do have a constant battle with my willpower – constant.

The news of my demise was greatly exaggerated – by me.  It did elicit some interesting opinions from my family, though.  My wife said, “Did you really think that you were cured?”

This took time to sink in.  My wife has been my greatest support.  She was the one who handed me the book ‘The Paleo Solution’ and said, “You’ll never read it”.  She has been hugely encouraging and is the steadying force when I’m feeling down or reaching for the bread.  She has stopped me from giving in lots of times.  She is a formidable woman. Intelligent, tenacious, splendid, sharp, clever, quick, funny, brilliant and gorgeous.  I am her biggest fan.

But, really.  Honesty at this level.  It took me by surprise.  And it made me think.  Did I REALLY think that I’d be cured?  To be honest, yes.

No.

Yes.

Truth is, I don’t know.  There was a small part of me really hoped that I’d be well and truly off the drugs.  I was disappointed.

Then, I was having a chat with my eldest daughter.  She said the same thing!  “Dad, did you really think that you’d be cured?”  She said this with a kind of ‘Dhuh, stoopid!’ look on her face.  She’s a teenager after all.

So, a bit of deja vu and a reality check from the women in my life.

In the space of a few days my family had brought me back to earth and made me wonder if I really would/could/should come off the medication.  It took me a week or two to get over this, which surprised me.  I’m pretty upbeat, positive and optimistic most of the time and this set me back.  I couldn’t get it off my mind.  This was not a comfortable space for me to be in.

It’s a big cliché but being positive is essential for life with a chronic condition – or even without one.  Life in general can be a bit shit.  I have often been in lots of pain or constant discomfort.  I’ve had painful operations and spent months recuperating.  I’ve had wound infections, been catheterised more than once, had a feckin’ big needle stuck in my groin to aspirate fluid from my hip and had all sorts of other tubes of varying sizes thrust into bits of me.

Everything I’ve been through has been an experience and I have tried to treat everything as just that – an experience.  I do think that attitude has a lot to do with wellbeing.

So, after my reality check my positivity has returned.  Hurrah!  Since taking my drugs at the beginning of February, I have felt the need to inject again – two weeks ago.  But, the difference is that I have accepted that I MAY, that’s MAY, have to have a helping hand now and then.

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I’m not giving up.  I’ve gone ten and a half to eleven weeks between my last three injections and I’ve been feeling pretty good.

The experience leading up to the 29th April (my last injection) was nowhere near as severe as the build up to the 13th February, as you can see from this excerpt of my log.  The difference this time is I have only taken Humira – I’ve left the Methotrexate out of the equation for now, just to see what happens.

This is all still an experiment and I’m still learning what I can tolerate and what I can’t.  It’s all about the choices I make.  As my wife keeps saying, “Is having a drink now and then something you’re not prepared to give up?  You know it’s not Paleo.  You need to make a choice.”

She’s right of course.  Just like Neo in The Matrix Reloaded, it’s all about choice.

And making good ones.

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I Could Eat A Horse!

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And I have eaten horse.  Not because I have unwittingly bought it in a processed ready-meal, but because I chose to.

I was in France, I was 20, ready to try anything and I had horse filet, medium.  My memory is rather hazy (I can remember eating crocodile, emu and kangaroo in Australia rather more clearly) but I think horse was quite good.

Finding horse-meat in processed food in the UK should come as no surprise.  I am amazed by the reaction, to be honest.  The food industry is out of control, fuelled by greedy retailers looking for cheaper product and higher profits.

For me, trying to manage an autoimmune disease with diet, food has become a very important part of my life.  I place a very high value on good food made with good ingredients and I spend a little bit more time than I used to sourcing quality ingredients, meal planning, re-using left overs, recycling bones and pretty much squeezing every bit of goodness from the food we buy.

Breakfast

For example, here’s what I had for breakfast a couple of days ago.  These are pork meatballs, cold, left over from the night before, with a boiled egg and some of my gorgeous homemade mayonnaise.

A couple of years ago, they would have gone in the bin.  But, why throw away perfectly good food – and, what’s wrong with having something like this for breakfast – absolutely nothing!  We are conditioned by the clever and greedy people who call themselves the food industry to eat cereals and toast 1st thing in the morning.  Of course, that’s what Paleolithic man would be eating – Cheerios and bread?

Why?  Because we’re told it’s good for us.  But really, why?  Because it’s what we all start the day with along with a cup of tea – it’s the convention.  But really really, why?  Because it’s abundant and sustainable, that’s good isn’t it.  But really really really, why?  Because we tell you to and because it makes us money.

Who says that we have to conform to a convention?  A convention designed to make the food industry money?  I’ll tell you who, the bloomin’ food industry, that’s who!

It’s all about money.  Money and greed.  What the food industry is NOT about is delivering good, wholesome, nourishing, responsibly sourced food.  Our processed food is full of chemicals to make it taste better, to keep it on the shelf longer, loaded with salt, bulked up with sugar, ground up bones, eyeballs, testicles, glands, anuses, maybe even feces, dyed to make it look nice and shoved full of all manner of other detritus that would likely make us barf, if we knew about it.

You really have to wonder what goes into a really cheap ready-meal and the thing that we are slowly discovering is, actually, no-one does know.

System

Retailers, especially those in the UK, are maybe waking up to this.  They, along with manufacturers, have created a perverse system, fuelled by greed and it works a bit like this.

This constant pushing down of margins puts people out of business, makes people scared.  We’ve seen this recently with price-fixing of milk, where powerful retailers drove businesses to breaking point, just to make a bit of money.

The horse-meat saga is no different, with retailers and manufacturers creating a system where meat products move around the world, as people try to source it at the cheapest prices.  Sight of the supply chain is lost, no-one really knows where it comes from and no-one really cares.

As the system pushes further and further away from fully understanding where the process starts and what it looks like end to end, criminal activity can, and probably does, creep in and goes unnoticed.  Or, the system turns a blind eye to it because greedy people don’t really care about things like that.

I am reminded of a line from Aliens, when Ripley has found Carter Burke out to be a nasty, greedy piece of work, willing to sacrifice the lives of Ripley and Newt just to make a bit of money and she says (of the aliens who want to use them as hosts for alien babies), “I don’t know which species is worse.  You don’t see them fucking each other over for a Goddamned percentage”.

Too true.  Humans will be the death of the human race.

This system has become too complicated and corrupt.  The supply chain isn’t a chain any more, it’s a web and no-one has a clue what’s going on.  I wouldn’t be surprised if there was cat, dog, rat and other unexpected things in the food some of us choose to buy.

There have been many studies warning that the human race is going to grow so big that, within 60 years, we won’t be able to produce enough food to feed the planet.  We’ll end up having to rethink what we eat.  Insects will become a primary source of protein.  I suspect we’re already there, we just don’t know it!

I’m a Systems Thinker.  If you’re not sure what that is look up Vanguard Consulting and check out some of the brilliant work these people do.  One of my favourite people is the head of this organisation, a man called John Seddon.

I learned Systems Thinking from him and I had the privilege of working with a few of his people about 10 years ago.  The experience changed my life, my perspective and the track of my career.  Part of my job is process consultancy and they key thing to understand in any system or process is what happens end to end.

John says, “It’s the system, stupid!” meaning that when strange behaviours happen, it’s the system that the people work within that drives it.  As a systems thinker, none of the horse-meat saga surprises me.  The behaviour of the people supplying each part of the process, trying to make a bit of money and constantly being squeezed is driven by fear, greed, constant pressure to deliver for less – in other words, the system created by the people at the head.

And at the head are the retailers.  People will try to blame all the other parts of the system but it’s those who have made the system that carry the blame.  They have lost lost sight of what’s important, put money before everything else, turned a blind eye and, ultimately, stopped caring for their customers – if they ever did in the first place.

This is one very good reason why I don’t buy processed food and I source my meat from local suppliers.  I understand my supply chain very well.  I buy from a butcher. The butcher is a partner in a farm.  The beef, pork, chicken comes from the farm, via an abattoir to the butcher.  Simple.  The beef is grass-fed, the pork is pastured and the chicken properly free range – and the difference in taste is unbelievable!

ChickensTake today (Sunday 3rd March) I’m cooking two chickens.  Free range, not that expensive – in fact, Tesco and Sainsbury are more pricey – and they are just different to anything else I’ve cooked.

When you pick them up, they’re soft, pliable, they flop in your hands, you can tell they’re more tender just by lifting them up.  I was quite excited explaining this to my wife.

They are beautiful things.  When I think about the last chicken we bought from a well-known retail giant, it was solid, heavy, probably full of water, likely finished on a grain diet to make it fat and just not that nice.

The taste is different too.  I have NEVER tasted anything like the chickens we buy now and my wife, who is the resident ‘chicken-picker-downer’ and really didn’t like handling the stuff, loves carving them and stripping the carcass once we’ve finished eating – she says the meat is like butter, beautiful, tender and juicy.

But that’s not the end of the chicken – no.  We make it last.  We eat one with roasted vegetables, then we have lots of meat left over.

Chicken

This will probably make two more meals, likely a curry and maybe something else, if we can keep our hands off – it’s just so lovely!

I’ll use some for the girls’ lunches and it’ll provide snacks if we’re feeling peckish.

Then there are the bones.  We waste nothing at all and we make a big batch of stock every week.

Stock

I can use a lot of stock (or broth) in a week because I’m always cooking casseroles, curries, soups and the stock we make is really tasty.  In fact, it’s so tasty I’ve started to drink it.

Really, drinking stock isn’t as mental as you think. I remember my Mum giving me an Oxo cube dissolved in boiling water as a wee boy – this is no different, just way tastier!

There’s a lot to be said for drinking bone broth and I have been reading this courtesy of my neighbour, who is also paleo, a systems thinker and a big fan of John Seddon – we’re always swapping notes!

ChickenFatThen there’s all the lovely juice that comes from a chicken.  I cool it down, skim off the fat and freeze the jelly to make gravy.

Our roasted veg is always done in the fat from the previous week’s chicken.  It makes the veg taste amazing!

You might think that all of this takes time. it’s too difficult, we all have busy lives, blah de blah!  No, it’s not difficult or time-consuming.

It’s cost-effective and it makes our food go further.  We can eek out 3 great family meals from two chickens, snacks and lunches for the kids, stock for soups, casseroles and curries, lovely light and pure fat for roasting veg and the base for gravy.  My family has never eaten so well or had such tasty food.

The key thing is, know what you’re buying.  Understand where it comes from, support your butcher, have a chat with him, find out about his supply chain, buy local, use it well.

Above all, though, just enjoy some really lovely grub!

Oh, and by the way, horse-meat is just meat.  The beef market is so expensive for manufacturers that, of course, people are going to look for other sources to bulk out their supplies and make some money.  Why does this surprise anyone?  It might actually be good for you, so say the BBC!

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The Log Is The Blog

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In my last post, I shared the story of the latest visit to my rheumatologist, just after the New Year.  I’m officially off the drugs now, but slightly nervous about not having that crutch to lean on now and again.

So, I decided to keep a daily log of what’s going on with my body and how I feel about it all.  I imagined that I would be able to show a history of wellness of which I could be rightfully proud.  I really didn’t expect my notes to be as surprising as they have been…..

…..or lead me in another direction.  Intrigued?  Read on…..

Here is an excerpt of the first few weeks.  There is much more to the spreadsheet than this, with frank notes about how I feel, what I’ve been drinking and eating, etc, so this is just a small piece.

Log Excerpt

The first surprise was when I last took my drugs.  I really didn’t think it was as long ago as the end of November.  I hadn’t looked back and worked it out until now – I’m into my 10th week, which isn’t too shabby.  In the last 18 months, the longest I’ve gone without medication has been, I think, 7 weeks.

I say ‘I think’ because I’ve never kept a log before – stupid boy!  Please say “stupid boy” to yourself in the tone of Capt. Mainwaring.  The exact detail of how long (if it isn’t 7 weeks) is lost in my misty memory of the last 18 months, so I’m putting a positive slant on this.  I’ve had to remind myself to stay positive because I haven’t been feeling quite right, which brings me to my 2nd raised eyebrow.

Log persistent

As you can see, my fingers have been giving me a little trouble.  It’s unusual for them to be this bad for this long and it has messed with my head a bit.

When I reflect, they’ve just been a bit swollen and a little sore and nothing too bad.  I suppose, when you look at the log, I scored the pain low for a reason.  They have been showing a slow improvement from 1 or 2 to <1 and 0+ over the last couple of weeks.

Yes, I even had to make up a 0+ rating as the swelling was there, but only just and the pain more like a discomfort.  I’m at odds with myself about whether 0+ is the same as <1, but that’s just the statistician in me being pedantic.  Pedantic, moi?

Anyway, I made it through a band rehearsal with no trouble and no after affects, so I think I’m just used to feeling well and could be overreacting a bit.  It is still messing with my head, though, and I’m not usually a worrier.  When I realised I’d gone 9 weeks, I started to think I might be pushing it a bit.  My thoughts have drifted towards the store of drugs that I still have in the house………….but, no, I’m hanging in.

The next thing that surprised me was my morning stiffness.

Now, if you’ve just taken a mouthful of tea, try to swallow it.  OK, regained your composure?  Good.

Log Morning

Anyone with rheumatoid will tell you that a night lying still can make your whole body as stiff as a board.  Mornings can be very slow and very painful – I’ve been there and it’s truly awful.

Doctors always ask about pain first thing in the morning and how long it lasts, so it’s an important factor in assessing how well someone is.

I’ve had hardly any at all, except a couple of times when my joints have twinged and given me a little bother, but not much to speak of.  There have also been a few times during the day when random aches and pains have appeared, but also bearable and not that bad.

My mornings have surprised me, given the terrible sleep I have and this is the biggest revelation from keeping the log – sleep!  Sleep is so important and I’m just crap at it.

Actually, that’s not true.  When it happens, it’s great.  I’m just crap at making it happen.

Over the last – I dunno how long – I have drifted into the habit of not going to bed.  My wife and I have busy lives with work, kids, band and all the stuff you have to do to make it all hang together, so when it comes to settling down of an evening, we’re tired.  My wife knows when she’s tired and toddles off to bed.  I always say, “I’ll just watch the end of this and I’ll be up later.”

This is where it all goes to hell.  Within about 10 minutes, sometimes more, I’m asleep sitting on the couch.  Sometimes I’ll find my way into a lying position and wake up at 3 or 4am.  Then I’m up!  I may make it upstairs, I may not.  At 4am our cats (we have 2) are quite active – they know I’m up and they make noises to be let out.  So, I end up doing stuff and I have been known to cook a whole meal before everyone is up in the morning.

Log Sleep

All this activity, when I should be in the deepest part of my sleep cycle, just keeps me awake.  I can and do drift back to sleep, but then my sleep cycle starts over again and, by the time I should be getting up (about 7am) I’m being dragged from deep sleep again.  This is just rubbish sleep!

If I lie on the couch, I get a sore neck and I’ve developed a painful right shoulder from having my head in a poor sleeping position.

None of this is good.  We should sleep for roughly one-third of the day.  On average, I’m sleeping for about one-quarter of my days, sometimes less.

There is compelling evidence showing that poor sleep causes systemic inflammation.  For me, a rheumatoid arthritic, that’s really bad.  Just Google ‘lack of sleep and inflammation’ and you’ll see what I’m on about.

Now I admit, I have played on the “Oh, I don’t get much sleep” thing and said, “Oh, ya, you know, I don’t need much sleep, right” as if I’m some kind of brilliant cool dude, but that’s just stupid.  I’ve been stupid.  It’s something I really have to change, which means a new routine.

Right now, it is Sunday the 3rd of February at 10:27pm GMT.  I have given myself a curfew, “Don’t be downstairs beyond 11pm.”  But, tonight, I still have some other stuff to do AND there are 2 episodes of the new Top Gear series to catch up on – this is my dilemma, see!

I’m still fighting with myself – just about different stuff now!  I’ve only stuck to the curfew twice in the last two weeks and I’m going to fail miserably again tonight.

Yes, I know, I’m stupid.  But, stupid or not with my sleep, I have been as clean as a whistle when it comes to food.  I am giving myself the best chance I can to get off the drugs for good and I’m remaining stoic – I just have to do the same with my other routines.

So, without further ado, night, night.

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Is Remission Possible…..

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…..and is it within my grasp?

A couple of weeks ago, I popped off to see my consultant rheumatologist.  It was my annual visit and I had a very interesting time.  I’ll tell you about that in a minute.

When I saw her at the end of 2011, I was four months into eating paleo, nearly at the end of installing a new kitchen, dropping weight, feeling great, gaining muscle, feeling strong and reducing the drugs.  When I explained what I was up to, instead of giving me the standard medic’s sceptical response, she was very happy for me to continue.  In fact, she arranged a few extra tests to make sure there was nothing else going on.

Her parting shot was, “Don’t lose any more weight!” I didn’t.

One of the extra tests was a coeliac screen.  There is clinical evidence linking rheumatoid arthritis with coeliac disease, which just shows that gut health plays a part in autoimmune conditions.  My coeliac screen was inconclusive, which was kind of annoying.

Anyway, I didn’t need to see her again for a year.  So throughout 2012, I continued to eat as well as my willpower would let me, started writing about it, didn’t take the drugs as often as I was supposed to and experimented with bringing some food groups back into my diet.

After much experimentation (some of which is documented in previous posts) I can now say with confidence that anything with a sniff of wheat brings my symptoms back and they come back very quickly.  Now, I know I’m not coeliac, but my gut really doesn’t like wheat and shit really does go down.  Here’s a good example.

Since Christmas and our magnificent paleo dinner, I have been feeling pretty groovy and quite awesome.  Last week, I was out for a lunchtime curry with colleagues and had some pakora and, yes, it was in batter.  A little rice (not too much) with my bhuna and by the time I got back to the office I was feeling sluggish, tired, my hands were a little sore and the pain in my right elbow was coming back.

That’s the power of food.  Amazing.  Since then, I have had a persistent and very annoying problem with the index finger on my right hand – for the last nine days its been swollen and mildly painful and it doesn’t appear to be going away any time soon!  I’m tracking all of this in my log.

Oh, my log, yes I’ll tell you all about that in a minute too!

So, back to food.  Along with wheat, I also know that dairy doesn’t agree with me – a little more difficult to put my finger precisely on what’s happening but I just can’t stomach it any more!  I was beginning to think that dairy was making my skin bad, but not now.

It’s sugar!

Jeez, stuff with a lot of sugar in it brings my psoriasis back with a vengeance!  I have some patches on my forehead, on the back of my head under the hairline, on my lower back and on the backs of my hands.  Sugary foods and sweets just make it flare like a beacon and, unfortunately, alcohol too – and it’s very unpleasant, itchy, sore, unsightly and, what’s more, my wife can always tell when I’ve been up to no good!

So, even after all this time, I still have this going on…..

BrainFight

I have been constantly battling with myself.  As they say, you only cheat yourself and it’s been a slow realisation that I just can’t have some types of food, not even just a little bit.

So, I’m being clean, cutting down on what I drink and staying away from the stuff that makes me unwell.

I am really out to prove a point because I am now completely off the drugs – officially!

This is what happened when I saw my consultant.  When I was called into her room, she was elsewhere so I saw her Senior Registrar.  He didn’t know my story so I had to summarise the events of the last 16 months in a couple of minutes.

Now, for someone who has a reputation for talking at length about just about anything, is left to the end of the meeting to give an update (so that everyone else around the table has a chance) and who is the butt of many a joke about brevity at work, home, everywhere else, this was no small feat.  My colleagues won’t believe that I actually managed to do it.

But I did.  I got quickly to the part about only taking the drugs every 6 or 7 weeks and I wanted to know what I should do now.

Incredulous, flummoxed, he made a noise like a horse snorting and said that it was very unusual for someone to come off strong anti-arthritis drugs so quickly, or to only take them at 6 week intervals and that he didn’t quite know what advice to give me.  He said, “In fact, I’ve never heard of anything like this.”  That disappointed me a little.

When you consider that there is a wealth of information and credible evidence kicking about the place, readily accessible to anyone who might be interested, you might think that the docs would have a look too.  I wonder how much doctors really are interested…..

…..when the drug companies are paying the bills.

Anyway, that’s a completely different tangent and I’m trying to be brief.  He went off, shaking his head, to speak to his boss.  They came back, asked a few more questions, listened, then asked the most important one.  “What’s your ultimate goal, Scott?”

Well, I hesitated.  This was the crucial question.  The one I’ve been asking myself for the last year and a half – almost.  Did I feel that, with little flare up after little flare up, I could really achieve my goal?  Was I prepared to put my mouth where my money was?  Could I maintain the willpower, stop fighting with my brain and actually stick to something?

My wife’s words echoed – look how far you’ve come!  She’s right . I got a little emotional and said, “I want to stop taking the drugs.”  My consultant said, “OK, go for it.”  But added, “Let’s see you in 3 months and assess how you’re doing.  My clinic is very full, but we’ll squeeze you in.”  I wanted to say, “Why is your clinic so full?  Your patients should be on a paleo diet.  You could save money, time, effort, etc!” but that’s a conversation for another time.

I couldn’t have said anything anyway because, for the second time, I was in tears in my consultant’s room.  This time, though, for a much better reason.

So, that’s that.  For the time being, I am drug free and feeling a little scared.  I do think I was using the drugs like a crutch – there if things weren’t going well, there if I just thought I should have them, when I felt guilty that I hadn’t taken them in a while.  I must say it feels a little weird.

But I have my log.  Yes, I can now tell you all about my log!

I thought I should have some evidence of how I feel physically so that, after 3 months is up, I can take it to my consultant and be able to have the above conversation!  I have a spreadsheet (no surprise there – I have a spreadsheet for most things) and I am recording, daily, how I feel in the morning, how things feel during the day and (really important) how I slept.

So far, I’ve had to record far too much in my log because of my dodgy index finger, which is annoying in so many ways!  But, it will give me a brief history of how it feels to be completely drug free, no matter what happens in the next 3 months.

Am I even more determined?  Damn right!

Brain vs Brawn image provided by Yau Hoong Tan and is on the Flikr photo feed at this address: http://www.flickr.com/photos/tangyauhoong/4474921735/

90% of heart bypass patients……

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…… revert back to their old ways within 2 years.

That was the interesting, if alarming, statistic I learned recently.  It’s been an interesting time all round since I last wrote.  Until this morning, my health had been pretty stable, I’ve been feeling pretty good, my knees, feet and elbows were all excellent and I was walking with confidence!  A result of my medication?  Maybe, but the drug will have left my system by now as it has quite a short half life, so I was feeling pretty cool.

The band had a gig – another wedding.  Here’s me waiting to rock the party.

It was a strange set up.  Usually, we try to be in when the room is being prepared, get the gear ready, check the sound so we don’t have to interrupt the proceedings by turning up with a van full of boxes!

This time, it was quite a small room and the wedding party were using the whole space.  We had a 45 minute window to get in and ready to rock while the room was being prepared for the evening celebrations.

So, we set up as much as we could under a gazebo in the car park.  It was dark, cold, damp and not very pleasant.  By the time we got inside, my hands were like ice and we were all a bit grumpy.  Especially my bass player – a wee hug, though, and he was OK.

Anyway, all that aside, we were up and running almost within the time, it was another fab gig and loads of fun, as usual.  My hands were still a bit dodgy but everything was working pretty well.  We kept the dance floor filled and our clients were very happy.

Then, at the end of last week, I was at a seminar/forum/event thingy with the ‘process folk’ from across my company.  I work in Business Change and my employers are very keen to build a community of connected change professionals in the organisation.

OK, now, before you start yawning, I’d just like to say that I think it’s a good thing and it works.  My colleagues work all across the company and you can go for months without seeing people in your team.  So, every three months, we get to see each other ‘en masse’ at a forum.  I like these things, I’ve presented some of my work at one, it’s good.  So there!

This time, we had a couple of guest speakers and the guy who had my attention (totally) was Craig Smith from Flint Consulting.  Now, this wasn’t just because he had a really funky presentation (I do want some of that, though, I do!) but because he was a very engaging speaker too.

He started his talk with the above statistic and related it to how a lot of change programmes in companies fail.  Due to the fact that people go back to their old ways, the stuff that’s comfortable, easy, the path of least resistence, etc, etc.  I have experienced this kind of thing in my workplace first hand and I couldn’t help relating it to what I’m trying to do right now.

My wife said that I’m trying to undo 46 years of habit.  She’s right and I suppose that’s what it must also be like for heart patients.  Now, you would think that, faced with death, people with a dodgy heart would take note and put being alive before anything else.  It just goes to show how complacent we can be and how comfortable old habits are, even if the risks are great.

If I was complacent, my path of least resistence would be to start injecting my meds again, start eating rubbish again, start not getting better again and be quite happy to pass this off with a, “Well, it would never have worked anyway” or a, “All these bad things’ll never happen to me” kind of throw away remark.  So, Craig’s talk struck a chord with me on a personal level.

To succeed, I have to be stubborn, stoic, relentless, learn from my failures, drop my complacency and never give up – just how you would lead an organisation into making a change for the better.

For example, this morning (Wednesday 21st November) I woke up with a very painful swelling!  Oooh er, missus!  Not what you might be thinking, my right wrist had swollen up overnight.  This does happen, although, it hasn’t for ages.  To be honest, my wrist had been grumbling for a couple of days, but this morning was dreadful.  I couldn’t move my wrist or my hand.

Here it is as of midnight, 21/11/12.  Compared to my left side, you can see that the right wrist is still swollen (although eased off enough to allow me to type) a bit red and it has an arthritic ‘heat’ about it.  Anyone who suffers with rheumatoid will tell you that when it’s active, joints can feel like they’re burning.  I can move my fingers now, although they’re pretty crunchy!

Anyway, back to earlier today.  I had to delay going into work because I couldn’t do anything.  Shaving was almost impossible, brushing my teeth was almost impossible, putting my cufflinks in was almost impossible, shoe laces – bloody hell, they were a nightmare and putting on a tie, that was COMPLETELY IMPOSSIBLE!  Today was the first day I’d gone to work without a tie.

Now, I could’ve jumped the gun, thought that the diet isn’t working well enough and reached for the syringe.  I nearly did.  BUT, that would be allowing complacency to rule my head and I would be merrily careering down the road to failure.

I think I’m better than that – I think we all are.  I’m not completely cured, but I have come a long way so why start doubting now?  I could easily go backwards, put back the weight that I’ve lost and resign myself to injecting medication every week and maybe not feel so good while posing a risk to me and costing the NHS a small fortune.  I don’t think I should settle for that and I don’t think anyone else should either.

That’s why I am happy to tell anyone with anything autoimmune to try changing their diet before doing anything else – and be stubborn with yourself because you owe it to yourself!

So, on that note, I am taking my diet a step further by following an Autoimmume Protocol for the next 30 days.  Really, it’s just the diet I follow just now but cutting out tomatos, eggs (both of which have become staples in my diet) bell peppers and spices.  All of these things have been shown to affect people with autoimmune problems.  It should be interesting.

I’ll leave you with a quote from Thomas Edison, which I found quite interesting.  He said, “The doctor of the future will give no medicine, but will interest his patients in the care of the human frame, in a proper diet, and in the cause and prevention of disease.”

Hmmm, haven’t had that experience yet!

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This Week, I Have Been Mostly Wearing……..

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……..a grumpy face.

I have been particularly grumpy, actually.  Annoyingly, people have noticed and it’s not good when people start pointing this stuff out to you.  Now, I could put this down to my age.  I’m 46, rushing headlong into the long dark tea-time of middle age, but happy-go-lucky with it and not usually a grumpy old bastard!

Well, I have been this week.  My wife, my kids, my workmates have all had to put up with “Scott, the Grump Who Stole The Mood.”

It’s not been a great week.  After feeling quite pleased with myself in my last update, things just didn’t get back to normal.  I was waiting for my hands to recover and they didn’t.  In fact, everything just went a bit mental, sprinted quickly downhill and I really felt like a creaky old arthritic.

It’s very difficult to put into words what being a creaky old arthritic feels like.  The only way I can describe it is like being a really old car, that someone does their best to take care of but it still doesn’t perform quite in the way you expect, it limps along and you never quite know when it’ll break down – and when it does, it always gets going again but it’s just a bit ropy.  Like a bad Top Gear challenge.

Anyway, my creaky old arthriticness left me with shock, upset, disbelief, upset, anger, upset, tears, introspection, upset, swearing – oh, the swearing!  Now, I know what you’re saying.  This is all being a bit melodramatic and one should really get a grip of oneself.

Maybe you’re right.  I was, however, reminded of the dreadful flare up I had a few years ago that started with sore feet (which I ignored).  I put the feet down to lack of sleep, a bit of stress and worry associated with having two little 34 week premature babies in hospital, trying to see as much of them as I could and still do my job (saving my paternity leave for them coming home, see).

Last week, I had sore feet.  Also, my fingers weren’t settling, my right wrist was immobile, washing my hair in the shower was suddenly the most difficult and painful thing to do (not to mention towelling – I would have killed for a man-sized tumble dryer) and my knees were behaving like the unruly 7-year-old girls my tiny babies have turned into.  And my knees – jeez my knees!

Knees.  They’re funny things.  The most awkward of human joints.  Not so much a joint as a very ill-conceived mashing of unmatched bone ends and Forth Road Bridge suspension.  Doomed to failure!

When my arthritis has been bad, I’ve been able to feel the ends of my bones, especially the tops of my tibiae – it’s a particular pain that’s somewhere between an itch and being stuck with a needle.  I suddenly had that pain again and it began to worry me a bit.

Time to take action and I reached for the medication.  I had to.  I honestly felt like I had failed and last Sunday was a rotten day – in my head anyway!  By the end of the day, the drug was kicking in and I was beginning to feel much better.  I’m lucky, Adilamumab works so well that I can go for ages without it and it’ll re-establish within hours.

This doesn’t, however, make me feel better emotionally.  I haven’t been as clean as I could or should have been.  I have given in to temptation in the last few weeks and paid for it.  Maybe, I’ve reached the limit of what I’m able to do without the drugs?

My wife, who is my greatest source of encouragement and support, put it very well.  She’s pretty clever, my missus.  “You’re trying to undo 46 years of habit, Scott,” she said.  “Look at what you’ve achieved?  In the last 14 months you’ve gone from being on weekly injections and not feeling great to maybe taking them once every 6 or 7 weeks and feeling brilliant!”

She’s right and I think I’m probably being hard on myself.  She’s right about the habit thing too.  You know, I LIKE bread, I LOVE naan bread with a curry, I ADORE cakes, I’d KILL for a stodgy pudding with whipped cream and chocolate sprinkles.  Custard, ice cream, crisps, sweets, loads of beer and Pickled Onion Monster Munch!

I am finding this quite a challenge and it’s a battle with myself and myself only.  Eating Paleo is easy, having the will to put all the other crap aside is the difficult bit.  I’ve always been impetuous, quick out of the blocks to try anything, do daft stuff and I’ve never thought of myself as having much in the way of willpower.  I like that side of my character, though, it’s who I am.  In the last few days, I have been questioning whether I am capable of sticking to what I am trying to do.

Maybe it is melodrama and I should just get a grip, because I know what it’s feels like to feel great and this is important.  This is about being well, feeling great, making the rest of my life good instead of descending into ever more ill health.  I feel great when I eat clean and I have to hang on to that.

Best get on with it then!

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Being Paleo on Holiday…….

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…..is all about making choices, some better than others!

Now, I don’t want anyone to feel sorry for me, because I’ve been on holiday for a week in the sun, but during that time I’ve been trying to dodge the various ways wheat has been presented to me.  I haven’t always succeeded, I’ve been a bit stupid and I’ve suffered the consequences.

We love going to Mallorca in the school October break.  The big draws for me and my wife are not having to go to work (yeah, really), clean, organise the children’s social lives and cook.  For the kids, it’s the sun, the beach, swimming in the sea, ice cream and going to restaurants (a big treat).  Eating out is one of life’s greatest pleasures and the various restaurants in Puerto de Pollenca are fabulous.  As someone trying to reduce or remove his symptoms of rheumatoid arthritis with diet, I can avoid dairy easily.  Trying not to have wheat, on the other hand, has been a bit more difficult than I thought because it’s everywhere!

I’m writing this on the flight home.  At the moment, I am nursing a swollen index finger on my right hand, a sore right wrist, the bursa on my left wrist is a bit painful, I have swollen and sore feet, a painful right ankle and my right elbow (the barometer) is playing up.

Sounds like I’ve had a great holiday, eh?  Well, I have.  I’ve learned a few things as well, which is excellent!

I’m also playing at a party tonight.  We have a dash up the A1 from Newcastle, drop the wife and kids, then it’s off to the gig.  My band mates have come to my rescue (thank you Marky Mark) and have all of my gear, so I just have to pitch up.  With the state of my joints right now, tonight should be interesting and I’m a little worried!

But I’ve been here before.  I had a vicious flare up 7 years ago when I stopped responding to treatment and spent 2 years in and out of consulting rooms and trying different drugs to find something that worked.  I was a difficult case, resistant to some of the commonly used drugs.  I lost weight, I found walking difficult, I had constant, severe pain in most of my joints, I had trouble sleeping, my family, friends and work colleagues all looked at me with worried expressions as they could see I was in trouble.

I’m a drummer in a band playing at people’s parties – important events.  There’s a code, you don’t let people down.  It’s the ‘show must go on’ thing.  I continued to play throughout this flare up, only having to cancel one gig and only then because I was an inpatient receiving some much-needed bed rest.  I found drumming quite liberating, but I was exhausted after every gig and completely unable to tear down my gear.  My band mates, again, came to my rescue.

My consultants (I had 2 by this point) eventually found a combination of three drugs that worked a treat, but they gave me crippling indigestion so that was just no good.  Methotrexate was next, worked a bit but worked better when delivered by subcutaneous injection.  Anti TNF drugs came next.  Etanercept didn’t work but Adilamumab (Humira) did.  Within 4 hours of my first injection, I felt a noticeable benefit.

So that was me.  Self medicating with Methotrexate and Humira injections every month.  Over the course of the next 12 months, the dose of Methotrexate increased as did the frequency of both drugs, to once a week.  There they stayed until September 2011, when I started to think differently about what I was eating and I have been experimenting since.

So, what of this recent week of experimenting with food?

I love fish.  Eating in a place by the sea means that there’s always fresh fish on the menu.  But it’s not as simple as just grilling a fish, as we will find out.  Here are my good choices…

…and here are my bad choices…

…and here are the consequences…

 

As well as the above, I have sore feet, which is really poor show.  I hate having sore feet.  Standing and walking on sore feet is just crap, as anyone with sore feet will tell you.

Why?  Wheat is the thing that kills me and my feet.  I can stand (no pun intended) a little bit of dairy, but not much.  Wheat, on the other hand, is little more than poison.  Harsh, you think?  Wheat is the core of our system of nutrition, it is grown all over the world, it makes ‘our daily bread,’ it’s a major component of processed food and it’s in more things than you realise.  It is, quite literally, everywhere.

Wheat makes us fat, it contributes to the growth in obesity and diabetes, it inflames our guts, it hurts our organs, it makes approximately 40% of the human race ill in some way.  Yet we are encouraged to eat, eat and eat more whole grains!  We are killing ourselves slowly and, in people like me who have autoimmune problems, it is the thing that makes the difference between being well and being very ill.

Now, you probably think I’m completely mental.  I’m currently reading a very interesting book about the effects of wheat.  And, I have been experimenting with food for over a year now.  I know what makes my symptoms flare and it’s all things wheat.

Well, I’m off to be clean for a month.  I’m not going to spend that time in a bath – I’m going to do what I should have done this last week, make some good choices, which will cleanse my gut and make me well again!  I’ll keep you up to date with where these choices lead.

The wheat story hasn’t gone away, though, it’ll run and run.

Got To Get Off The Meth!

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My wife sent me this link recently.

http://robbwolf.com/2012/04/23/battling-rheumatoid-arthritis-paleo-diet/

A very interesting read from someone who is using paleo to deal with arthritis. Interesting for me as the story of her journey (there you go, I’ve used that word) was similar to mine. I recognised some of the things I’ve been through and I like Robb Wolf – it was his book that started me thinking differently about what I eat. Try it – The Paleo Solution. It has changed my life!

What pissed me off a wee bit was the way she made Methotrexate look really bad, dangerous, toxic, scary and generally so awful that it’ll kill you! This is all a bit of scare mongering, really, and I don’t think it’s all that clever or creative to just copy the information card that comes with the stuff. Have some bloomin’ imagination!

Most people on Methotrexate don’t have any issues at all – like me. Patients are monitored so closely that, if anyone does have a reaction, they’re off it before you can say “cancer inducing Anti-TNF therapy is much worse.”

I’m on both. I am supposed to give myself an injection of 25mg Methotrexate and one of 40mg Adilamumab (Anti-TNF bad stuff) every week. The latter is the drug I really want to stop taking. Why? Anti-TNF drugs are brilliant, they work and Adilamumab really works for me BUT they’re new, they’ve not been around long enough for anyone to really understand the effects of long term use. There have been some reports of melanoma in patients taking Anti-TNF. That’s why. My surgeon, the guy that looks after my dodgy hip, calls it poison and I am inclined to agree with him.

Now, I said earlier that I’m supposed to be taking my drugs once a week. Well, I have lapsed a bit. Since the end of April 2012, I’ve injected four times. Pretty much once every five weeks. The last one was a disaster – I’ll tell you why in a minute!

My diet is working. There is no doubt. It’s been a year since I started. I’ve not always been strict with myself and I have suffered for those times. I’ve lost weight, gained muscle, inflammation is slowly disappearing, I feel strong, I have stamina. I feel much better than I have done in years. I don’t suffer from my annual post winter chest infection and the amount of time I spend away from work due to health problems has fallen sharply.

So, what was the disaster? I had gone for 6 weeks without an injection. Some days my feet were sore so I’d say, “I’ll inject this weekend.” Then my feet would get better and I wouldn’t. Then my fingers would feel bad for a couple of days and I’d say, “I’ll inject this weekend.” Then my fingers would get better and I wouldn’t do it.

My band were playing a gig two weekends ago. It was one of those gigs where we wanted to do well, put on a good show, people may be there who want to book us again. I had sore wrists and my feet were a bit painful (nothing too bad) and I hadn’t been that strict with my diet. Dick!

So, 2 days before the gig I took my injections. Big mistake. I should have just let my body recover naturally as it had done countless times before. What happened was a horrible reaction to the poison (my surgeon would be proud) that I was pumping into myself. I had stomach cramps, cold sweats and only just made it through the gig. I had a day off work on the Monday because I felt so bad.

Oh, the irony! No drugs, feel great! Have drugs, feel like pish! I think my system is so clean that any form of artificial anything gives me an extreme reaction. Now, I’ll probably have to test this out again soon – not looking forward to that but, in the interests of science, “I’ll roll up my sleeve” (Renton, Trainspotting).

So, is my wife right? Do I need to “get off the meth?” Oh yes indeed and, more so, off the Anti-TNF and I’d like to have that done by the end of the year.

This stuff is poison after all.