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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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.

Why Bread Really Isn’t Good For You……

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…..and yoghurt too!

“Bloated, inflamed, stiff joints and a bit sore” is how I’d describe myself today.  Oh, so your diet isn’t working after all then, Scott ya big liar?  Actually, yes it still is – if I had stuck to it!

The family had some excellent fun on Saturday visiting my sister’s place – it’s always a houseful, loads of kids, a lot of noise but great craic when the family is together.  One big draw is the food.  My sister and her husband are great cooks and Indian cuisine is their forte.

This time, though, we were being treated to something a bit different – tandoori chicken and homemade nan cooked in their new wood burning tandoor oven.  This thing is a beastly, massive, heavy thing that sits about 4 feet high and can get up to 500°C.   When I stuck my hand in it – well, you have to really – it was a mere 320°C.

Why on Earth would anyone stick their hand in this?  Well, one has to get the dough into it somehow and I hadn’t had a shot.  After losing most of the hair on my right arm, I had a good few nans cooking beautifully inside the tandoor, as you can see….

Now – and this is where I put my stupid hat on – you can’t go through all of this without trying the stuff you’ve had a hand in cooking.  So I did.  3 actually.  AND some raita (yoghurt based condiment in case you didn’t know – I didn’t know what it was called until I looked it up just there).

So there’s me, paleo, clean, eating primally, feeling great and stuffing my face with the kind of food I know is very bad.  My wife did warn me – several times!  Even the youngest of my children drew an audible sharp breath when she saw what I was eating.  “I’ll be alright,” I said, “You just pay attention to your own food!”  There was no alcohol involved, this was my sober decision.

And now I feel like crap!

I was very busy all day Sunday too.  My band were having a technical rehearsal as we have a new mixing desk – always a good idea to spend some time getting to know the equipment (especially important stuff like the mixer) before getting to a gig and realising you can’t work it!  Anyway, it took about 5 hours to do everything and we ended up playing quite a lot.

This is when I noticed I wasn’t feeling so good.  I was a bit lethargic, a little sweaty after very little effort, slightly out of breath  and my right arm was getting quite sore.  My right elbow is my barometer.  If that’s sore, I’m generally under par.  It was sore.  I was way under par and not in a good golfy sort of way.

My skin was itchy too.  That’s what the slightest sniff of dairy does to me.  By the time I returned home from the rehearsal, I was completely knackered, feeling bloated, etc, everything I said right at the start.  Why?  Because I ate shit that’s no good!

Wheat inflames the gut.  People generally don’t notice this – but loads of people complain about feeling bloated after eating bread.  And it feeds your pleasure centre, releasing endorphins and making you want more.  Ever found a really nice loaf, french stick or speciality bread that you simply MUST HAVE MORE OF?  That’s what wheat does.  All we do is keep our guts inflamed.  Makes us fat too, but that’s another story!

In people like me, predisposed to autoimmune problems, an inflamed gut can trigger the autoimmune response.  Rheumatoid arthritis in my case.  So, cut out the crap food and reverse the disease – that’s the plan anyway.

Or it would be if I stuck to it – which I generally do, to be fair!

Dairy, on the other hand, is just simply perverse!  I have a memory from about age 5 when I thought, “It’s very odd that we drink another animal’s milk.”  Surely – this is me back to the present day now – we are designed to drink our mother’s milk up to a certain age and then never have milk again.  After all, our paleolothic ancesters didn’t milk cows and they lived during the time when the modern human genome was fixed.

We’re the only animal on the planet that does this AND we’re not genetically designed to take milk – no-one can argue that our genetic makeup has caught up since we started farming and milking livestock between seven and ten thousand years ago (depending what you read).  It’s a good source of protein, though, and it’s sustainable and available!  But, anyone who cuts out dairy for any length of time and goes back to it will have a bad reaction – end of.  Why would that happen if it’s so good for you.  The slightest sniff of dairy gives me a sore head and makes me want to have a wee barfamundo!

All of this nonsense that we call ‘healthy food’ is just making us sick.  Coeliac Disease, Lactose Intolerance, Vitiligo, Eczema, Rheumatoid Arthritis.  None of these would exist if we ate what we were designed to AND can you imagine what that would do for our crumbling healthcare system?

Well, my healthcare system is going to benefit from me.  My treatment costs upwards of £12,000 each year.  If I’m drug free and well, the NHS would save that money and I’d be WELL into the bargain!  Just by eating the right stuff.

So, no more wheat, dairy or anything else that’s not natural.  I will be drug free by the end of the year.

I will.

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.

Drumming, Dodgy Digits and Doctors

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Living with arthritis isn’t always much fun.  Being a drummer with active rheumatoid arthritis can be a bit of a challenge!

Well, I’m calling myself a drummer as if that’s all I do – it’s not.  I work full-time, I’m married with 3 kids, mortgage, cars and pretty much everything a 40 something guy with a young family has.  I play in a covers/party band, I sing backing vocals, I do sound and I carry a lot of gear!  If I could make drumming pay, I’d do it full-time.  That was always my dream as a teenager.

Arthritis, however, really cocked up any chance I had of making it as a pro, but it’s not been impossible to continue playing (and keep improving too) it’s just been difficult!

I’ve played drums since I was 11.  I started playing side drum with the Boys Brigade and quickly became their lead and solo side drummer in the bugle marching band.  That was a great introduction but rock drumming was where it was at for me!  I credit Stewart Copeland and Phil Collins as the people who really taught me how to play.  I spent months with my small kit, in the front room of my parent’s house, playing along to The Police and early Genesis, learning technique and making a bloody noise!

Then my Dad converted the attic and put me in it.

I joined my first real band when I was 14 and played my first gig when I was 15.  Education took a backseat and the dream of making it big took over!  I joined more bands, did studio sessions and just had a blast for the next 4 years.

When I was 19, the middle finger on my left hand swelled up quite unexpectedly.  I thought it was the result of trapping my hand in the bonnet of a car I’d been working on, but I didn’t remember it being sore when it happened.  I started to wake in the night with an elbow, knee, wrist or shoulder in excruciating pain and sweating like crazy.  I’d fall back to sleep eventually and wake in the morning with nothing wrong.  My GP was less than helpful.

Over the next 18 months, these nocturnal episodes happened occasionally, I didn’t really think much of them and visits to the doctor became pointless.  Then, 3 months after my 21st birthday and after I moved to London to work, painful joints started to disturb my sleep almost every night.  This became so bad that I tried not to sleep.  During one of these fitful nights, I had a vivid dream that I still remember.  In the dream a doctor told me that I had rheumatoid arthritis.  Three weeks later, a blood test confirmed it.

A confirmed diagnosis opened the flood gates, as if it gave me permission to be unwell and 2 months later, I had become very ill.  My weight had dropped to seven and a half stone, I was in an isolation room on the orthopaedic ward in Lewisham Hospital and was suspected of having AIDS.  This was 1987, little was known about HIV, medical staff were paranoid, the doctors couldn’t believe that just arthritis had made me this ill, all of my used bedding was incinerated, people gave me a very wide berth!  I KNEW I had little to worry about but the blood test to check their diagnosis took 8 days and, with plenty of time on my hands to think about people and stuff, I went a bit mental!  When my doctor turned up to whisper the result of the test – negative – I fell apart.  I had wound myself up to the point of being convinced (and scared) that I was going to die.

That was my darkest hour.  There have been many dark times since but none as intense as that time.

The whole experience was defining.  I found myself.  My wife doesn’t really believe in this sort of spiritual thing but does admit that she’s never had that kind of epiphany.  In a moment, I understood who I was, what my place in the world is, how I fitted and that I would never allow myself to be defined by my disease.

I have been comfortable in my own skin since that moment.  I can deal with what I have, I push myself to be active, to do more, improve more, be great at some things or at least good at most things.  I fill my life with stuff that stretches me and I will never give up!

People have often said to me that I’m so positive about how I deal with my arthritis.  That’s mostly true (how else would you deal with a chronic illness if it wasn’t with a gargantuan amount of positivity:  if you don’t laugh you’d cry, etc, etc) but it’s not completely true.  I have had loads of crappy times, ‘why me’ times, depressing times, I’ve been scared at times and I’ve given my family a lot to worry about!

Like the 4 operations I’ve had on my left hip, the serious flare up I had in 2005 around the time my twin girls were born and I was barely able to help my wife with all that work, the meltdown I had in my consultant’s room when I felt I couldn’t take any more, the horrid, pus squirting, necrotising infection I had in my wound after my last hip operation, which could have been extremely serious (and needed even more surgery) and the times I’ve had to spend in hospital and away from work.

My goal in the last 7 years (yes, they’re 7 now and my oldest is 11) has been to get back to the state I was in before 2005, when I was in remission.  I do feel that I’m only just getting better now and I believe that it’s mostly down to what I eat!

I’ll tell you more in a mo.