Sweets, Swelling and Selfies

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.

Food1

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.

Being Paleo on Holiday…….

…..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!

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.