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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.

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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Hands, Knees and Woops, My Shoulder!

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Well, it’s a week since my (mini) flare up, following some less than Paleo food while on holiday.  Am I any better?  Mostly.  My hands are still a bit of a problem, though, and I have been rather silly again!

I was at a funeral last Monday offering some support to a friend who had lost her Mum. Although very sad, we had some fun looking through a library of old photographs and recalling some good times everyone had spent together.  Coffee, tea, a wee snifter and some food.

I had my daft hat on again.  Now, Paleo as I am, I do love a good sausage roll.  Oooooh, sausage rolls!  The ones on offer were particularly nice.

I had 3…………..followed by a sandwich…….

……and 2 cakes.

People who know me will be either shaking their heads or snorting loudly right now.  In my defence, I would say that I’m the same as everyone else, a wheat addict.  Having wheat addiction means that when you have wheat, you must have more wheat and more wheat and more wheat.  That’s why I couldn’t have just one sausage roll, couldn’t stay away from bread and then had to have a cake or two.

Wheat is the only major component of our food that has an addictive effect.  I’ve said before that wheat (pastry, bread, cakes – just what I’d been eating) releases endorphins.  This isn’t strictly true.  Endorphins are produced by the brain – but gluten exorphins are produced by the ingestion of wheat.  Similar effect on the brain, different route.  No other food does this and that’s why it’s addictive like no other food.

That’s why you can’t just have one piece of that ‘moreish’ bread.  You say, “moreish,” I say “addictive.”

If I was an alcoholic, my long-term recovery would depend on me cutting out alcohol completely for the rest of my life.  With wheat, I need to treat myself like the addict I am and stay away from it completely.  The reason?  Well……..

…….the reaction to my loss of control was nothing short of spectacular!  Now, I should have shown a little more intelligence after my experience with holiday food, but let’s treat this as another experiment, for science’s sake.  That’s my excuse anyway!

By the time I drove home (just half an hour) my hands, knees and my right shoulder, which hasn’t been a problem for well over a year, were indescribably painful.  Especially my shoulder.  I was genuinely shocked by this.

I had overdosed!

I went through almost 2 years of dealing with a seriously painful right shoulder, which was a big problem at gigs, caused some vascular damage and disrupted everything in my life, most of all my sleep and my ability to give my kids a ‘carry.’  There is a unique joy to be had from lifting your children into your arms and really giving them a cuddle.  I found doing that really difficult.

My shoulder had been OK for about the last year – getting better around the time I changed my diet.  Coincidence?  I think not.

Since Monday evening, I have been back to my usual diet and I’m almost back to my normal self.  I have been really amazed how quickly, with a clean diet, I have been able to reverse the horrible effects of a diet with wheat in it.

My hands are almost back to normal, my knees are good, my feet are fine, I don’t have a sore ankle any more and my right shoulder has settled, just as quickly as it flared up!

I can do this now.  Holding my hands together like this is almost impossible when my fingers swell up.  I couldn’t do this a week ago.

And I know now, categorically, that it is wheat. I’ve had a moment of clarity!  I’m not coeliac, but I know enough to know that one can have an intolerance to wheat and have a different autoimmune response.  Me – rheumatoid arthritis. Other folks – eczema, psoriasis, IBS, etc, etc.  Try a wheat free diet for a month (and I mean a REAL wheat free diet) and let me know how you feel?

One highlight of the week was seeing Muse in concert at the SECC in Glasgow.  Here’s a picture I ‘tried’ to take.  Great show, great lights, superb visuals.

I do love Muse.  They remind me a lot of Queen, in that they can do anything, covering R&B, Rock n’ Roll, Progressive Rock and big Orchestral pieces, even really weird shit (like ‘Unsustainable’ from their new album and the show’s opening song) and completely get away with it.

Their sound is big and complex but the engineers did an amazing job, it was clear and dynamic.  Really interesting to see the sound guys using a big old school analogue mixing desk with lots of outboard signal processing – rather than the ‘all on board’ big digital desks that are more common these days.

Woops, sorry, just dropped into Geeksville for a minute there!

Anyway, they were a real joy to watch and listen to.  Every time Dom slammed the kick drum, it hit me in the stomach.  Gorgeous!  As a drummer, I love watching great drummers do their stuff and Dom Howard is a great drummer.  There he is, look, drumming away and being great!

I did have one worry, though, with sore feet, a dodgy ankle and grumbling sciatica (yup, I have that too – people with a chronic disease don’t have JUST the disease, remember) I was thinking our standing tickets maybe weren’t such a great idea.  But then, the whole show was standing, so that was that.

So Scott, just shut up and watch the show!  I needn’t have worried.  In my recovering state, I was grand and I even managed a small mosh when they did Plug In Baby.  Well, you can’t not!

My only issue at the end of the gig was a slight tightness in my right knee – otherwise fine.

So, my resolve has deepened and a wheat free diet it is for me and I heartily recommend you follow one too.  Oh, and if you get a chance to see Muse on tour, grab it.

Awesome!

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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.

Spectacularly Missing The Point, Twice!

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Oh for the love of goodness!  I just read this article on the BBC News website:

http://www.bbc.co.uk/news/health-19785006

In it, James Gallagher, the BBC’s Health and Science Reporter, says that scientists have genetically modified a cow so it produces milk that reduces allergic reactions. Flamin’ Eck!  He goes on to say that the poor thing was born without a tail. Really!  Then, as the beast hadn’t yet became pregnant, they pumped it full of hormones to kick-start milk production. Eeeeh Gads!

At this point, I was disgusted and interested all at once.

Now, I’m no fan of dairy.  I stopped eating/drinking dairy products a year ago.  Since then, I have dabbled and experimented with bringing dairy back into my diet.  If I do have any, it gives me a sore head and I break out in various itchy rashes.  I am now even less of a fan.

Cows make milk for the same reason as humans make milk – to feed their babies.  As a race, we understand that human breast milk is absolutely the best thing for our children and we have Government sponsored and charitable/voluntary organisations to help, encourage and support new Mums in doing the right thing.  Respek!  We do, however, treat new Mum cows with no respect at all.

Calves are taken away from their Mums after about 3 days, they’re fed milk substitutes and are either slaughtered for veal or allowed to develop into adults.  Mum cows are then milked intensively for about 10 months and then inseminated all over again (they have 2 months off to let their udders recover).  Sounds nice, eh?  This is highly unpleasant, especially when the bond between a cow and her calf is very strong and will last until the calf reaches adulthood.  A bit like us, then.

This intensive milking has some nasty side effects too, other than making the poor cow go a bit mad! Lameness, mastitis among other horrible things.  While we treat mastitis in humans, we just kill the cows.  Nice human people!

Right. I’m in danger of ranting, back to the BBC.  They go on to say………..

Cows milk contains beta-lactoglobulin.  Human milk doesn’t.  Beta-lactoblobulin causes an allergic reaction ergo Lactose Intolerance.  Hmmm, doesn’t that tell us something?  The researchers have said, “It’s not surprising that it constitutes a major milk allergen.”

Now, isn’t this just missing the point?  It’s only an allergen because it’s not designed for humans, it’s for cows.  Would we feel just as comfy drinking a hippo’s milk, a domestic cat’s milk, a dog’s milk?  Of course not!  Those animals make milk for their own babies, don’t they and, anyway, that would be disgusting!

We have already genetically modified our bovine friends to produce LOADS AND LOADS of milk satisfying our voracious need for sustenance.  So, we’ve done it once, we can do it again, tail or no tail!  That’s humanity for you – superior, arrogant and doing stuff just because we can and missing the point to boot.

Missing the Point 2.  I’ve had a busy week.  Well, the truth is, I gave myself a busy week!

My band were playing at a wedding on Saturday.  Weddings are hard work.  At a party, club or pub, we’d normally start at about 9/9:30, play for 1hr 15mins, have a break, play for another 1hr 15mins.  At a wedding, start times are typically earlier, clients want certain songs learned and played, bands have to mindful of the demographic and build the set around that.  The reality is, you have to play for longer, need more songs up your sleeve and you need to pay attention to the crowd and change the set list on the fly.

That meant dusting off quite a few songs we haven’t performed in a long time and adding a few more that we hadn’t done at all.  So, we rehearsed a bit more than we would normally in the week leading up to it.  I also made a new riser deck.

What’s a riser?  It’s a wee platform that gets the drums off the floor so I’m at eye level with my muso chums.  It also makes the band look much more professional.  It has nothing at all to do with being a show-off and being seen, you understand.  Nothing!

I have a riser deck already, but it was too big for this gig so I needed one that was small, fitted around a smaller kit and could be set up in a corner.  Now, as my wife pointed out, I didn’t really NEED to build one, especially as the bath panel is still at the top of the stairs and there’s other shit to do in the house.  She’s right, of course!  But it is BRILLIANT being on a riser (thanks Ringo) and I really WANTED one for this gig.  I had from the Monday to the Thursday to make it – pressure was on!

I did myself in.  What with work, cooking, ferrying the kids to various places, 2 band rehearsals and just getting through life, I really didn’t have time to do this.  By Wednesday, I had sore hands, my right elbow was playing up, my knees and feet were sore, getting through a 3 hour gig on Saturday was looking shaky and, worst of all, I had pissed off my wife!  Thoughts of injecting myself with my drugs crossed my mind – and not just for the arthritis!

I reminded myself that I was missing the point of what I’m trying to do.  I want to be drug free and prove that you really are what you eat!  So I didn’t.  By Friday (gig setup day) I was feeling OK.  By Saturday evening, I still had a sore elbow but nothing nearly as bad as Wednesday and I was feeling good.

We played, in total, for 3 hours and 20 minutes on Saturday night.  I have never played for so long – this is Bruce Springsteen territory – or been so bloody knackered!

Did I last the pace?  Absolutely!  AND I had more to spare.

Did I suffer the following day?  Not at all, I felt brand new.  Nothing hurt and I was up early and back at the hotel to tear down the gear.  I have chronic rheumatoid arthritis, I’m thinking this isn’t too shabby.

I have been feeling a bit off colour since, though, but I think it’s just because I’ve not caught up with my sleep.  I still haven’t resorted to injections and I’m determined not to miss the point again!

Nuff said.

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.