30 Years an Arthritic

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.

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