Someone sent me a message the other day saying – I’m watching Ricky Gervais’ Fame concert on T.V. and I’m cringing on your behalf. He’s talking about M.E. – Really? I’ve never seen it. I wonder if it’s on YouTube. I’m interested cos I was diagnosed with M.E. some years ago and you don’t hear that much about it in the media. And certainly not in high profile comedy shows. I doubt very much if it’s going to offend me. I did stand up comedy for 25 years. and whilst I wasn’t known for edgy or dark material I can certainly appreciate the stuff. I’ve got no problem with humour about illness and disability. In the right hands such comedy can be thrilling and liberating. So I YouTubed. But I’ll get back to that…

 Now, M.E. or CFS, or Superlurgy FC or whatever the current name is, is a complex illness which the NHS, rather unhelpfully, over-simplify by putting into three categories – Mild, Moderate and Severe. Mild being you sometimes feel crap but can still work, moderate being you feel really crap and can’t work and severe means you’re housebound, bedbound or in a wheelchair. Symptoms often fluctuate – hour by hour. You can category surf. Generally speaking I was Mild for 8 years and just got on with life. Then Moderate for about 3 years and had to stop working, and for the last 18 months, moderate, dipping into severe. I’ve never used a wheelchair, but I have been unable to stand and walk very well sometimes.There’s no specific cure but some get better, some don’t. Treatment is very hit and miss and there’s no blood-test to prove you have it so you can end up fighting, not just the illness but also the disbelief of Drs, the Dept for Work and Pensions, family, friends and everyone else in the world.Well that’s how it sometimes feels. And you can put the violins down. Because, as the saying goes, Violins never solved anything. There, a crap pun will purge any sympathy in a trice. Crap puns are the Imodium of sympathy. I have crap puns aplenty. Ergo, I get not much sympathy..

 The NHS prefer the term Chronic Fatigue Syndrome, which is a bit of a rubbish name because, as someone else once said, it’s like calling Diabetes, Chronic Thirst Syndrome. It’s just one symptom amongst many, and not always the worst symptom either. The word ‘fatigue’ doesn’t cover it. It’s not like any kind of tired you can properly explain. It’s like your battery has discharged. Kaput. Nada. But worse. You know in Zombie movies where someone gets bitten by a Zombie and they die but then they come back, a Zombie themselves?  Well that bit in between being bitten and coming back. It’s like that. Not dead but not alive. There you go, PZS,- Pre-Zombie Syndrome. Sorted. Put that in your diagnosis.

 You often wake up with what feels like the worst hangover you’ve ever hand and bad flu on top. But why stop there? You then take your little M.E. cart around the little M.E. shop and start adding stuff. Some horrendous nausea and stomach pain, I’ll have that. Ooh, and a load of nasty dizziness, yep have that as well. And some awful muscle aches and nerve pain, forgot that last week, lets get double. Great, that should do for today. Some folk have other symptoms, headaches, sore throats , swollen glands. I don’t have those, touchwood. Big wood. In fact, taking no chances, I’mma hug a tree.

 So this fine morning, I’ve felt better, I’ve felt worse. I walk my lad to the bus stop, eyeing up the trees for huggability factor and assess what the M.E. gods have in store today. I’m happy to report that the M.E gods are feeling fairly lenient just now and I do believe I will stay out and take some photos. It’s a beautiful sky, well, I say beautiful,, It looks a bit War Of The Worlds, actually. What with the contrails and mixed colours, it’s looks slashed and bruised. It looks hurt. If there is a god, he appears to be self-harming.(1-3)

 Then I head off to nearby Walpole Park. I’ve been coming to this park on and off for years and sort of rediscovered it this last Summer. As you approach,there’s a wall dedicated to those who died in the two World Wars. There’s an Historical House and Modern Art Gallery. There’s a garden dedicated those who sailed here from the Caribbean on the Windrush. It’s where they held until recently, Europe’s largest annual Free Jazz Festival. They still hold it but it now costs a quid. Say what you like about Ealing but does your Poundshop have a Jazz Festival? I like some Jazz, not all. If I were a Jazz musician, I’d call myself, Art Therapy. And there’s a heron, (4,5 ) who visits every year. In a bird jazz band, the heron would play sax…

Walpole Park also happens to be where I was when began the greatest, most amazing adventure of my life; when my phone rang and I heard – Mr Hurst? I think you’d better come to the hospital right now. You’re going to be a father sometime in the next few hours. It’s where I used to wheel the little un around every day in his buggy and where he’d cry every time we passed the gargoyle on the bench ( 6); where a fat lazy wasp once landed on his cover and crawled inside and I batted at it like a madman and realised from a distance it must’ve looked like I was beating a child in a pram.

 Today the Parklife is buzzing and the Parklight is turned on full. There’s a mother and baby step aerobics group making good use of a wall. The mother’s that is, not the babies. Don’t learn to step aerobic before you can walk; There’s some school kids doing what we used to call Quadrant Studies, where you chuck a sectioned frame on the ground and then examine and draw what’s in each bit. It’s supposed to be random but if you practice you can get a daisy, some dog poo and a fag packet. A prize every time.

 There’s a wishing well that has been allowed to fill up with black dirty rain water. I can’t remember the last time you could see the bottom. Today it also contains three men and it may be presumptuous of me to call them winos, but I doubt they are raiding the well in order to buy nappies and fruit. I watch them for a while, this rum trio. They fish, they pause, they count, they fish again. The bench gargoyle that my boy used to be scared of, watches over them. It’s like a forgotten Beckett play with three characters. Industrious, Ridiculous and Mad. (7,8)

 I myself gave up the booze and fags some years ago but I think Parklights would be a good name for a cigarette. I walk, and take photos, (9-14). I sit and smoke an imaginary Parklight, near a tree that looks in no mood for hugging.(15) It’s nice. But I’m starting to feel a bit rubbish too and will head home soon. I think back to the YouTube clip of Ricky Gervais on M.E. It’s a pretty poor effort really. Not much more than some sniggery finger pointing about ‘being too tired to go to work’ and another bit about people in Africa not getting M.E. It’s not offensive, just disappointing and off the mark. An opportunity missed.

 But here’s one for you. I called up the Chronic Fatigue Clinic the other day and said. I’m not going to be able make my appointment today, I’m not up to it. The consultant said, Oh, have you got flu? I said No, I’ve got Chronic Fatigue Syndrome.  And that, ladies and gentlemen, is a true story…


One thought on “Parklight

  1. brilliant blog, its spot on at the time of typing this i can only just manage to get my fingers top work as my joints are killing me!! im sitting up in bed annoyed as i had planned to get up and actually go to a friends for lunch.oh well maybe tomorrow!as usual the non believers will say im just lazy.x

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