Dave's blog

Sometimes things work in synergy with each other and become greater than the sum of their parts, at other times quite the opposite happens. I found this today when working out in the garden.

The garden in question is shared with our landlord who lives in the adjoining house. It is quite large and in recent years became a bit too much for its owners and as a consequence it is very over grown. This means Ellie and I have the uphill struggle of trying to renovate it.  We’ve rescued the veg bed and we’ve got some winter crops happily growing away alongside a few summer favourites like basil and tomatoes. Everything went in late as the plot was really overgrown when we moved in mid May and it took some time to get it cleared. Thankfully this year most of our food growing is on a separate site, so our garden really is just for fun rather than food.

I’ve got the compost heap started and as soon as there is a break in this blistering heat, we’re going to burn everything that can’t be composted or used as winter fuel such as brambles and hogweed roots.  The rest of the garden is now just a slog of pruning, hacking, weeding and eventually landscaping sowing and planting. It’s got to be low maintenance as we don’t know if we’re going to leave in 6 months, a year, two years or even ten years time. It’s a big job but I love doing this kind of thing, really getting stuck into a project. It’s a little like unearthing the lost gardens of Heligan as each time I cut something back a reminder of the past appears.

Where the lack of synergy in this garden comes is from my mix of professions. The gardener side of me is fine, he’s at home, after all he’s gardening. However, if I mix in the forager things begin to slow down each time I pull out and interesting root or herb, so I have to try and keep him quiet. Add this to a writer and this slows it down even further as I feel the need to document each new discovery. Add my environmentalist side as an extra layer and I have to question if my weeding will lead to a loss of habitat and if I should be doing it at all.

So take for example the common weed wood avens, or herb bennet or as it is known in latin geum urbanum. My gardener side sees it as a weed and rips it out, the forager wants to eat the roots as they act as a useful spice, the writer wants to document this and finally the environmentalist laments over the loss of seeds for over wintering animals. All these sides should work together but today they are only serving to slow me down!

A few months ago I wrote how I was living in some Kafkaesque world where everything was some kind of trial, something we have to endure, that life is clogged up with meaningless struggles that take us away from the true nature of being.
Now I think I’m just turning into Larry Bloody David the writer and star of Curb your enthusiasm -For those who haven’t seen it, ‘Curb’ as it’s often referred to follows someone who is constantly caught up in the tiny dramas of everyday life and is powerless to do anything else.

So, two months ago just before I moved, I told the phone company (The Phone Co-op) I was moving house, I did this by email as I was kept on hold for far too long to do it over the phone. On arrival to the new house I presumed the line was dead because it wasn’t switched on yet and I would just have to wait – as I said, I presumed this. After two weeks in a rare moment in front of my desk I check my emails at work – I find an email from the phone Co-op saying they’ve been trying to call me… …on my OLD landline number!

They tell me the line should work so I wander off to get a phone signal, I call them and tell them it doesn’t.

More time passes and I email the phone co-op again to tell them again the line is dead. Rather than send an engineer round they told me ‘I must be plugged into an old socket’ and I ‘should look for a working socket’. This was all by email as of course I had no landline phone and to make matters worse the granite cottage I now rent has no phone signal. I may as well have been using a carrier pigeon but as well I may as well have been talking to an alien.

Now after two months of borrowing internet contentions wherever I could just to keep up with work they’ve finally sent an engineer round. Then surprise, surprise, he found there was a fault with the line, by the end of the day it was fixed.

With no landline, no internet and no mobile signal I’ve been cut off from the world for ages – has it been blissful? Well at times yes, but mostly it’s just been frustrating.

Still, there are millions of blogs that talk about this kind of thing, so I won’t dwell on it, just wanted to explain my absence.

I really should write about foraging or growing food a bit more often on my blog. I made a decision not to a while ago, I may change that decision soon – I just never wanted to write a ‘the week I’ve been mostly eating…’ type blog.

Other news – we’ve been to the hospital again (much less of a drama this time transport wise) it seems Ellie’s every growing bump is going to be a boy!!!!
I’m over the moon. I would have been happy either way but somehow the first one being a boy is really exciting.

23/03/11

Right, I’m sure this is getting a bit boring for anyone who was looking for a gardening blog but, for the time being, I’m afraid writing this is helping me so you’re going to have to deal with it!  I had thought that I might split this blog in two, one Minimal Change Related and the other back to bits of comedy and idle thoughts, that way my Mum could read one and Newton Abbott woman with all the cats (see Fat Feet posted 5^th March) could read the other.

Anyway, for now I have one blog so, to begin with I was wrong about the meds coming down, I’m still on 60mg of prednisolone, I will be for at least a month. I’ve been looking up the side effects and I seem to be very lucky, some people are really struck down by the drug.  The worst thing I seem to get is insomnia but I’m used to that anyway. I do feel like I am taking something, I feel different but it’s not necessarily bad.  If anything it is making me feel quite positive.  I could do without the emotional side of things, I feel a bit weepy at times, not sad but I did have a little cry whilst watching Miss Potter, the film about the life of Beatrix Potter.  I’m not usually that kind of person, I can be sentimental yes, but not THAT sentimental.

The other side effect is my voice seems to have changed, it gets quite croaky and soft, getting worse by the evening.  I looked it up and about 0.17% of people on Pred (I’m in with the Nephrology lingo now)  can suffer from dysphonia (or altered voice) as a side effect.   So let’s put this into perspective, 2 to 7 children in every 100000 get minimal change and 10-15% of cases are adults so that works out at 1 in 500000 or 1 in half a million.  So if I’ve worked this out right, which I might not of done, one in 850 000 000 or one in every 85 million (or is it 850 million?) get MCN/MCD and dysphonia.  That means there is a good chance I’m the only person ever to have had these symptoms as an adult in the UK – if not I’d love to hear from you (if nothing more than to prove both the stats and/or my maths are way out).

Now I could think ‘why me?’ in a bad way but, instead the scientist in me thinks it’s absolutely fascinating and now the question ‘why me?’ takes on a whole new scope.  MCD is by and large idiopathic, meaning they have no idea what causes it.  In simple terms my immune system back fired and started to turn on my kidneys rather than the causative agent (if that’s the right word?) – possibly a virus or bacteria.  Now what that agent was is a mystery, it could be the cold I had at Christmas or it could even be as a result of me keeping bees.  I did wear my bee suit not long before all this happened – I dressed up in it to cheer Ellie up doing a ‘What are you doing Dave?’ sketch from 2001 Space Odyssey.  She didn’t really laugh that much so I guess it wasn’t worth it.   Now, bee venom is known to hang around for a while so although I wasn’t stung recently the suit would still hold traces of it.  It could be that the bee venom was the trigger for my immune system to backfire and start attacking itself.

I don’t want this to put anyone off bee-keeping, it is very, very, rare to get MCD and even rarer for it to be caused by bees, you actually have more chance of winning the lottery AND being struck by lightning.  However, for me I think it has put me off looking after bees for good. The nephrologist I spoke with yesterday said it could be a precaution to stop bee-keeping, I can’t help thinking he’s right.  It’s funny I got a fairly abusive message from a vegan about bee-keeping.  I thought it was a shame she felt that way as not only am I long term vegetarian and occasional vegan but the methods I practice (sorry, practiced now) aren’t for honey production but for the welfare of the bees. We only had a small amount of honey each last year, about two jars each for 15 people from 5 hives.  The rest we left for the bees as their food for the winter.  Without beekeepers there would be no honey bees, without honey bees there would be no food. My conscience is clear for the bee keeping but I am aware that others may not see it that way. A rather superstitious side of me occasionally thinks I may have been hexed by an angry vegan (if you’re reading this, it worked, can you reverse the hex please!).  Still, I know that has no basis in rationality and I try to think this isn’t from someone else’s ill will.

It really makes you think how random the pattern of life is, if I follow the chain of events back this all started back in June 2009 in a country lane in the Cotswolds (I think I may lose a few people at this point, but thanks for reading so much so far and for the rest of you still reading bear with me this does make sense eventually).

So, it all started when Ellie and I foraged a bumper crop of cherries (I blogged about it at the time http://dave.selfsufficientish.com/blogs/2009/07/living-for-free/) that led us to the idea that there was real abundance without the need for money. From this we decided to see if we could live without cash for as long as we could, without having to change our lifestyle too drastically.

We did pay rent, bills and travel but everything from food and clothes to entertainment and books we had to find without dipping into our wallets.  The experiment lasted six weeks and although I was living in Bristol at the time it ended in Totnes bookshop when I bought a copy of Phil Chandlers the Barefoot Beekeeper.  I though the book had to hold some significance as it marked the first purchase I made in over six weeks.

That September I enrolled on a Sustainable Horticulture course being run at Schumacher College by Cornwall’s Duchy College (the same course I now teach on).  After speaking to a long term volunteer at the college we decided it might be a good idea to do something about the plight of the bees. The next day I brought Phil’s book into college to see if anyone was up for keeping bees.  It was a near unanimous yes and we quickly formed a bee keeping group.  We built two top bar hives and by another twist of fate one of the students knew Phil, the author of the book and, he agreed to come in and teach us all about bee keeping.

At the same time nearby Buckfast Abby were scaling down their operation and offering out hives and bees, free to a good home.   So almost by magic we built up an apiary of around five hives which included the famous Buckfast Bee.

Now, over the winter one of the hives got very weak, it looked like it was been attacked by hornets and a lot of the honey was being robbed by neighbouring healthy bees, so we had no choice but to feed it sugar solution and hope for the best. During this feeding my suit got dive bombed by bees,  they stung the suit like mad, spreading their venom all over it.  The rest of the story you know – I put on the suit for a joke, my body reacted to the bee venom attacking my kidneys, my feet swell up from excess protein leaking from my kidneys, I’m diagnosed with Minimal Change Disease (still failing to see the irony in that name).

It is funny really as the bee keeping part of the story started in Totnes bookshop and so did my new book (this is thankfully a much shorter story).  I went to the book launch of a book called Local Food by Tamzin Pinkerton and Rob Hopkins at the book shop.  I met Rob and Tamzin briefly and asked them what it was like to work for Green Books, they said it was great. A while later I contacted Green Books, they said they’d love to have me on their (Green) Books then come that spring Grow Your Food For Free was commissioned.  I’m due to have the proofs of the book today; I’m waiting in for the postman as I type. It’s no doubt why I’ve written so much, a distraction from the excitement, I can’t wait to see it.  I’ve seen the odd page or two but not enough to get an idea of it.  Ellie has seen it as she’s been into the offices and she loves it, that’s a very encouraging sign as she’s illustrated it and she is the most hypercritical person when it comes to her own work.

So for anyone reading, the book is being launched at the fateful Totnes bookshop in May, date unconfirmed as yet but around release date of 12^th May.  I can’t help wondering what strange path it might lead me on, it is unlikely that I’ll get a 1 in half a million kidney complaint again but as it all started in Totnes bookshop, I am prepared for anything.

Ha, the proof came just as I was about to post this blog. They look good, they look really good…..

Life has settled into a new kind of normal. My kidneys are functioning again and I now go to the doctors twice a week to get my warferin levels checked.  I’ve got a hospital appointment to check everything is totally hunky dory tomorrow but it’s so far so good.

I’m still tired and not sleeping at night but as for side effects off the steroids I seem to be having remarkably few. My voice has changed, its croaky, weak and perhaps even a little higher but that seems to come and go throughout the day, getting worse in the evening.  I hope it goes, I like my voice, wouldn’t want to lose that!

My brother came down to visit on Friday and I spent longer out of the house than I had done since this started (bar the trip to hospital).  Like most families, we don’t always get on, but I’m glad to say this time we had no problems with each other and he actually did me the world of good. It was nice to show him some plants he hadn’t come across and reminded me a bit of old times when Andy was still learning about foraging.  I built on the extra energy I seemed to find that day the following day and I’m slowly trying to push myself back to the energy levels I had before.

I had great hopes and dreams about writing a novel or at least getting ahead with articles but to be honest I’ve done very little.  I found twitter and already I think I should ban myself from it, I think it’s probably healthier to smoke than to go on that thing! It’s just banal little statements mixed in with something interesting, real addiction stuff, small reward after a long wait.  I think I may have upset Alys Fowler by asking if her Mum’s cake was a foundation block to her polytunnel.  It seemed funny to me at the time but I’m cringing a little now, I mean I don’t know her, it’s a bit rude.

God, I’d much rather be well and outside than stuck inside twittering, it’s like temping again but without the pay – the worst of both worlds.  I’m getting a little better at chess at least and as for the novel I have written an outline.  I’ve also done a little meditation which has been really quite interesting, this might sound strange but at one point I felt what it was like to be a single bacteria cell. It was fleeting but, I shut off every sense and felt what it must be like to only exist, to not have to think, just to sense a food source and move towards it – hard to explain but it was quite a moment.  It was no doubt drug side effects that enhanced the meditation but it was a very interesting thing to go through.

The next step is lower the dose of steroids from a Euphoric 60mg to a ratty and irritable 5mg. I’m not looking forward to that!

March 13th 2011

Freedom is a very vague term. We believe ourselves to be free but we are always under the rule of someone or something else. Currently I am a slave to my health; I’m very weak following my recent kidney troubles and have to sleep a couple of times a day. I am managing two short walks but under doctor’s orders I can’t pick up heavy objects, I can bend too much – in short I can’t garden, despite it being one of the busiest times of the year!! I am a slave to my own ill health.
To add an extra spanner into the works during one of these said short walks today we bumped into our landlady who let us know they wanted to sell the house from underneath us. So once again lack of freedom is apparent as everything is so insecure – home, health, I don’t know about work but I’m not on a permanent contract so who knows what could happen there – a gardener who can’t garden isn’t all that employable!
Ellie and I have lived in three places together since we’ve moved to Totnes, the first was a winter let which we had to move from in the spring. That took us to the only place available a cramped, damp maisonette run by a mean-spirited landlady who would blame us for anything that went wrong. To make matters worse the flat below was occupied by man slowly drinking himself to death and a family next door who, although they were very friendly, argued constantly. It was in these conditions I wrote the bulk of ‘Grow your food for free’.
I feel like a pawn at present, wandering from one bit of bad luck to another. Still, things could be worse, especially if you see what’s going on in Japan at the moment, at least…
…well I won’t finish that sentence, I might just be tempting fate.
Even in my line of work things could be far worse consider Mr John Claudius Loudon. Born in 1783 he started his career as a landscape gardener, being responsible for, amongst other things the introduction of the London plane to the streets of our capital. He started writing at the age of 20 and continued right until his death 40 years later.
For working under adverse circumstances Mr Loudon is truly an inspiration. At the age of twenty he suffered from rheumatism so badly he became disabled from it for two years ending up with a left arm that had become contracted and knee that had fused together. It was in these circumstances he produced a number of works including the 1000 page Encyclopaedia of gardening.
Things seemed fine for a while until he reached the age of 37 (nearly my age now) where his rheumatism returned and on seeking a remedy in the form of the baths of Brighton he broke his right arm which was never fully reunited. Even with his broken arm, which must have meant he was in tremendous pain, he carried on working on re-works of the Encyclopaedia and created the Encyclopaedia of Agriculture in 1825.
In that same year surgeons came round his house to remove the arm only to find him working in the garden, he informed them he would continue to do so once they had removed it. I find this quite astonishing in its own right but also bear in mind that at this point he also had lost the use of his thumb and two fingers in his left hand! A year after this happened he released the first ever periodical devoted to horticulture ‘Gardener’s Magazine’.
He continued to write releasing (as far as I can work out) eleven more books (all weighty Victorian tomes, mainly Encyclopaedias) and five more magazines not to mention working on countless other titles as a contributor.
He was also a father to a daughter, Agnes and tragically left behind a devoted wife, Jane Loudon . Jane, despite starting off as a science fiction writer, way before the coin was termed, continued to write about horticulture after her husband’s death publishing one last tome of his he dictated to her right up until his dying day.
With Mr Loudon in mind I can’t I sit here and moan about overcoming dyslexia to write. The physical pain he must have gone through on a daily basis makes the pain I get in my left wrist, following its break and dislocation a few years ago, pail into insignificance. Even my present condition is nothing, to what Mr Loudon overcame. So, if you have ever been inspired by a gardening book, magazine or blog or wondered where it all began then look no further than John Claudius Loudon the hardest working garden writer that ever lived.

So, in my last blog (Fat feet) I mentioned a little what I’ve been through recently and promised to write some more. It wasn’t an easy decision to publish this but I thought it might help anyone who either is going through or, knows someone going through anything similar. So here are some extracts from the diary I kept in my long three days in hospital. Any thing in bold has been added later and there are some gaps where I decided to remove really dark or overly personal stuff (believe me, you’d thank me for the omissions).

7th March 2011

I’ve been weighing up for the last hour if I’d rather be in prison or where I am right now. At least in prison you are surrounded by healthy people – here the only common bond is we all have damaged kidneys.
It is still a little surreal, how did I end up here? This time last week I was preparing for a week’s work. My book was done, for once I had time on my hands and I had time to do what I wanted. Now I have time but I’m filing it rather than living it. I can’t shake the thought at the back of my mind that these are the last days of my life. Perhaps I’m being a hypochondriac but I am REALLY worried.

8th March

I’ve just had one of the speedy checks by a doctor. He prodded me and gave me a lot of information at once. It appears this could be some kind of immune response to a cold or similar, my body has decided to plot against me!!
I’m finding this whole experience quite dehumanising – I can’t even pee without telling anyone. The food is vile, I mean really, really vile. The white bread toast for breakfast is soft and cold, vegetables come in cubes and it is hard to tell what they are. Today I was presented with a vegetable ‘pie’ which tasted like no food I’ve ever come across before. The guy opposite joked you can only tell it is food if your fork goes in or not. At least it is a common bond on this ward – a mutual dislike for the food.
Some hours later…
It looks like things can change from one page to the next (in this diary). I don’t want to jump to conclusions but it looks like I might be able to go home tomorrow!!

A little later

I had a very kindly doctor tell me in a very calm voice that he was going to remove a piece of my kidney. Put that scenario anywhere else and it would be nothing less than macabre,
‘Hello, I’m going to cut a bit of you out, you could die from the procedure can you sign this form to say that’s okay?’

More time passes…

The guy opposite has just been asked if he has any potential donors, I heard someone say early he was reaching ‘end stage’ not sure what that means but it doesn’t sound good. So this might be bad but at least it is not as bad as that.

Added later – The biopsy takes place, a student nurse who I’ve been getting on quite well with assists the kindly, intense doctor with the procedure. He talks me all the way through it, I enter a world of Zen like calm as it happens, I try and be somewhere else, its warm, I’m on a beach, I can hear the sound of the sea. My meditation is perhaps a little too effective, I start to drool a little and the doctor seems a little perturbed by my lack of enthusiasm and tells me as much. He asks if I want him to carry on telling me what he is doing, ‘Well, you don’t have to’ I answer.
Later we thank each other for making the procedure easy; it is a very unusual moment to share with someone.
The student nurse later tells me with some enthusiasm that, the needle was Massive, and you should have seen the thing he put down it to cut into your kidney. I tell her she should work on her bedside manner a little.
I have to lie perfectly still for 8 hours to prevent risk of bleeding to death (hence adding this later). Ellie comes to see me, we rest our heads on each other as I am unable to embrace her. We cry a little, she leaves and a Devon farm proclaims as she goes, ‘You’re the lucky one, A nice blonde…’ he stumbles across his words deciding to change what he is saying at the last minute, ‘You’ve got the best carer in here!’.
I can’t help but agree with him.

9th March

Following being seen by more doctors…

They say a little knowledge is a bad thing, the only thing I can remember about ACE inhibitors (which I’ve been told may well be prescribed) is they are for AIDS or heart conditions, I must look them up (I had an internet phone with me). Well, it appears they can also be used to treat renal conditions, this being a kidney problem that kind of figures.

And some more doctors see me…

I’m holding back tears today, my prognosis isn’t all that good so far. I could need a year on Steroids, a fucking year!!! Fat, moody, loss of hair, a year of morphing into Shaun Ryder! One phrase keeps going over and over in my head “I’m a young man, this doesn’t happen to people my age”, I’m surrounded by people 40 years my senior with similar problems.

Yet more advice, no diagnosis yet, only speculation…

I’ve been told I’d be in here until Saturday, Frank (a gentlemanly elderly David Bowie look alike in the bed opposite and to the right) tells me ‘No-one leaves at the weekend, it will be Monday’. It is now Wednesday, what am I supposed to do?
Thank god I’ve got this pad, I can’t seem to concentrate on books or magazines. The TV is awful (and expensive), I know why I got rid of it at home, there’s nothing worse than waiting an hour for something to come on by just flicking channels.
Frank compares the ordeal he is currently going trough as similar to Kafka’s trial. I have to admit to not having read the book, Frank tells me it is the story of someone who is put on trial but has no idea what he has done or who is accusing him. He tells me the story highlights the petty bureaucracy we all have to go through, so much so that life becomes dictated by it and it leaves little time for anything else. He (Frank) has been here for over three weeks and he is constantly told he doesn’t quite fit all the criteria to go home.
What’s more, like me, he has been told some many conflicting things, he has no idea what to believe. I’ve been prodded, poked, bits cut out of me, weighed, my blood pressure and temperature taken god knows how many times and I can’t even piss without it being measured. The fluids out has reached such extremes I threw up this morning after another of many blood samples being taken, the nurse picked it up and said ‘I’m going to have to weigh that’ – Jesus Christ, do they want to know how many ml of tears I cry? Should I go out with glasses with handy tear catching attachments!? And the result of all these humiliating tests? We might be able to let you know in a ‘while’, a while is anything from an hour to (in Franks case) three weeks.

A ‘while’ later.

Ha, ha!!! So on this pendulum that swings from certain death to mild complaint I’ve hit somewhere in the middle. It looks like it might just be a month of steroids. The early prognosis is something called ‘Minimum change’. The kindly doctor who put the foot long needle in my back informed me in his slightly intense but very well meaning way, that if he HAD to choose from any kidney disease it would be this one. It seems ironic it is called ‘Minimum change’ swelling up like the Michelin man and taking steroids for a month is not what I’d call a minimal change. I feel a lot more positive than when I was shivering on the toilet floor this morning convinced my liver had given up.
So today’s caveat of this prognosis, If I choose to accept it is…
…this is still an early stage of the prognosis.
And my starter for ten
I have to respond to the treatment.
So perhaps I’m still a bit fucked up but it looks like I don’t need a new kidney and I’m not as fucked up as I could be.
What has caused it no-one seems to know.

I’m back home now as I write this, I’m a little shell shocked to say the least. I’m sleeping a lot and just trying to come to terms with the fact that I have an illness that will either go away or keep coming back. The doctor says I can only ever be in remission but the internet says otherwise, who to believe?