Category Archives: Just the Blog

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.