Bradley Simmonds’ really bad party

There were some bizarre stipulations before this story was allowed to proceed.

First, the interviewee, the main man, might be lying down while Sun Media fired questions at him. The second was the room might have to be darkened. The 'nap room” it's called. And then the clincher.


Bradley Simmonds in 'the nap room”. Photo: Daniel Hines.

'Can I please ask you and the photographer to refrain from wearing any strong-smelling aftershave or perfume?”

It would be easy to pre-judge the man and the situation. But Bradley Simmons just shrugs. 'That's why they call it the most under-diagnosed and most misunderstood medical condition.”

Chronic fatigue syndrome – myalgic encephalomyelitis or CFS/ME – is when the smallest of tasks becomes inexplicably and disproportionately exhausting.

And that maybe an over-simplification of a tragically debilitating, mind-messing and life-wrecking condition. And there's no pill for it. 'Yes, I am having a party, but just not a good one.”

As it happens we don't need the nap room. The reporter is ‘au naturel', the curtains are drawn open and Bradley is sprawled on a bean bag, chipper and having a three-out-of-10 day.

'Three-out-of-10 is one of my better days. My brain is fully functioning.” He has hit zero.

To understand where Bradley's at today, we have to understand where he was yesterday.

At 37, Bradley was successful. The former bank employee co-owned two golf shops, one in Blenheim and the other in Nelson. He played off a nine handicap and could drive a ball the best part of 300 metres. 'I loved golf. And I was lucky that my hobby became my career.”

Now it's all gone. The illness that robbed him of normality also robbed him of his business. The shops had to be sold. 'CFS/ME – I couldn't continue. So sad. So sad.”

Today he couldn't even swing a club. 'I could try but things would turn south pretty quickly. 'Just one hole and my heart would be pounding, screaming for a rest.”

He's looks tired and sadly resigned at the thought.

Two years ago he enjoyed a drink. 'I was a normal Kiwi bloke. Not now. It makes you feel so sick. It's brutal!” There would also be KFC, McDonalds and pizza. 'Now it's gluten-free Weet-Bix and rice milk and the odd salted potato chip as a treat.” CFS delivers truckloads of unwelcome food intolerances.

Bradley used to be in good nick, sporty, athletic. 'There was golf every day.” And he's tall at 190.5cm. Today he's scrawny, skeletal, just 67kg. His clothes hang off him. 'I'm too thin, certainly.” The other 15kg that once filled out those jeans have gone.

He's very conscious of the image CFS/ME has fashioned for him. The hair is long and untamed – 1970s hippy student long – and not by choice. Smell and sound sensitivity are his worst enemies.

'The last time I went to the hairdresser I had a terrible migraine for four hours afterwards. 'Perhaps it was her perfume or the product they used.” The ‘no cologne' proviso for this interview becomes clear.

A splash of the reporter's Lagerfeld could have sent this man's body into full stress panic-mode, an allergic reaction. 'You always think something bad is going to happen.”

These are some of the reasons this 37-year-old businessman was forced to come scuttling home to Tauranga and Mum and Dad. 'They wanted their son back and I wanted my life back.” And he needed care.

Two years ago Bradley got a virus. 'Really nasty, sweats and a bad sinus infection. Flu-like symptoms.” Then there were the chronic tension headaches and sinus pressure. 'They couldn't figure what was wrong. I kept going back to the doctors because I had a lot of other symptoms – ears popping, light sensitivity, chills.”

'Multi-systemic breakdown,” says Kira Follas, a field officer and counsellor for ME-CFS Support BOP. She understands Bradley's hell. She's been there herself. And today she's riding shotgun for Bradley, ensuring he is comfortable and safe, even for a chat with a local community newspaper. 'His body is just scrambling around to create optimal conditions to get into a healing state.”

Bradley went to an ENT – short for ears, nose and throat – specialist who gave him steroid spray, which in turn gave him something called ‘allergic shiners', or black eyes, brought on by blood pooling as a result of nasal and sinus congestion.

It was an allergy clinic that nailed it. 'I had been hard out on the internet self-diagnosing. He asked me what I thought I had and I said: ‘Candida, some sort of immune irregularity or CFS'.”

And the clinician said: 'Yes, I think its CFS.” There was a sense of relief. 'If you know what you are dealing with, you know what to do.”

'I had just felt sick the whole time. I woke up every morning feeling like I had been on a bender when I hadn't. Yes, hungover with a really bad cold.”

And even though he was resting and doing all the right things, it didn't matter. He felt crap.

Bradley changed his diet. 'I only eat rice, vegetables, eggs and meat now.” And his gluten-free Weet-Bix and rice milk.

Tiredness was never a bad thing for Bradley. Being sporty he enjoyed being physically tired and needing sleep. But this tiredness is something disturbingly different.

'I describe it as my legs feeling dead. You are lying on your bed, you are feeling bad and so heavy that you need to lie down even further if you can sense that, but you can't.” And being wired means you don't sleep.

He wanted to clarify tiredness because this illness is much more than tiredness. 'I met a bloke who wished he had CFS/ME. He envisioned feeling tired, staying home and watching TV all day and getting over it.”

But it's not like that. 'You may be exhausted but you can't sleep because you are wired up. 'It's not a case of sleeping and recharging.”

There were times Bradley couldn't shower and he couldn't walk down half a dozen stairs for his meals. 'They had to be delivered to my couch.” Even now, as he talks to The Weekend Sun, Bradley is feeling 'a bit weak and shaky”. Kira can see Simmonds is weakening. 'I can see his legs shaking.”

But there is resolve here. And Bradley hasn't finished his story

The people who have recovered, he says, have done it by calming their nervous system – through the likes of 'mindfulness techniques, brain re-wiring, meditation and supplements”. Kira is taking Bradley down that path now. It's a slow walk. 'But I am a dreamer, a glass half full, and I want to be 50 per cent better by the end of July. Is that ambitious? Maybe.”

Did CFS/ME ever take Bradley to dangerous places, to the brink? 'No, it didn't. Because I always knew people do recover.” And he has advice. 'Keep going back to the doctors until you get answers. If not, go to another doctor. Keep chasing until you know what's wrong.”

And stay away from the internet. 'It's so dangerous. You will think you have something that is going to kill you. It really messes with your brain at a time it doesn't need messing with.”

It's a measure of this man that as he wrestles with his own demons, he's batting for others being beaten around by CFS/ME.

He's started a Givealittle account to help fund a support programme in New Zealand. There's close to $1000 in there already. And soon the ‘1970s hippy student' will be scalped to bring in some added cash. To help, go to: https://givealittle.co.nz/cause/merecovery

If you have concerns about CFS/ME, see:www.counsellingtauranga.co.nz

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3 comments

CFS remedied

Posted on 27-05-2016 13:36 | By freedomkiwis

Please pass on to the young man that my husband also HAD debilitating CFS/ME for 15 yrs. He burnt out at work and had to leave and things just went down hill from there. Today he is cured/in remission whatever you want to call it. It was miraculous. And how may you ask.... http://www.empowertherapies.co.nz/the-lightning-process We have our lives back. My husband did this program in 2014 and is still fantastic today.


WOW!!!

Posted on 27-05-2016 14:18 | By Angel74

congrats to you freedom kiwis you fought the battle and came out winners lets hope Bradley and all other CFS/ME suffers try what your husband did and have the same results....


Different strokes

Posted on 15-06-2016 16:40 | By Jenny

Glad when I hear of people gaining recovery from ME/CFS. My 12 year old had a series of sore throats/antibiotics ending in ME/CFS. Our Drs have not been the investigative types so we sought an ENT Specialist, who suggested symptoms were akin to ME/CFS....oh boy...here we are four years later with a girl who just turned 17, hasn't been able to attend school since she was 12. Four NCEA credits in Maths only. Life changed for us all, Mom left job to care for her, we've explored Dr Ros Vallings seminars on ME/CFS, changes to diet, DHB services, but our girl's still sick, like Brad. Hoping she will find the energy to grab hold of Empower Therapies and try that 3 day Auckland Lightning Process where, apart from the $1300 cost, a proactive mindset's required for acceptance to that course. High five to parents of other CFS kids. JennyA


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