Gardens And Cake Part One: A Big Disappointment

I haven't posted here much lately (if you're reading this and you haven't realised, I'm now blogging occasionally about my new garden here and more frequently about my 50th year celebrations here instead), but I wanted to update a post I made three years ago about six of the best gardens to get cake. My first choice then was Ryton organic gardens near Coventry.

We hadn't visited for a while, so a couple of weeks ago, when we were passing en route back to the Cotswolds from Yorkshire, we stopped with the intention of stretching our legs with a walk round the gardens and then having tea and cake.

The first thing which struck us was that the lovely big shop, which used to sell all manner of organic and general gardening products, had gone. There was a small welcome desk, a small stand with cards and one or two other bits and pieces for sale, and a huge empty space. We found this very sad.



Our second thought was that the gardens themselves had seen better days - several areas were in the process of being revamped, some looked as though Garden Organic was in need of volunteers to do the weeding, and in others there was just a lot of bare earth. It wasn't a weekday out of season, when we might have expected changes to be underway; it was a Sunday afternoon in mid-July, so this was all a bit disappointing.

I don't want to give the impression that Ryton is no longer worth a visit. Many of the gardens are still interesting, ...



educational, ...



and attractive.



But don't go there expecting cake. The lovely little cafe which was adjacent to the big shop, and which served the best organic cakes in the country, has closed along with the shop. Instead there is a large licensed restaurant which can be accessed from the car park as well as from the garden. We went in hoping that in the middle of a Sunday afternoon there would be a wide choice of tea and cake available, and a peaceful atmosphere in which to consume it.



There wasn't. The first thing which hit us here was the noise: it was more like a packed and rowdy pub than a cosy tea-room. Even with my ear defenders on it was distressing for me; R, without noise sensitivity and without ear defenders, found it deafening, and was unable to hear me speak. The second thing which struck us was the almost total lack of cake. There was one cake stand, which contained two limp sausage rolls and a couple of iced buns, of the type you might find in any supermarket. The woman serving behind the counter seemed surprised that we had expected anything else, and really not that interested in helping us. We went outside to confer, as we couldn't hear ourselves think inside, and decided to go on and get our tea elsewhere.

We were deeply disappointed, not just because we'd hoped for cake for ourselves that day, but because we've supported Garden Organic for many years and we believe in organic principles. This means growing organically for the sake of wildlife and the environment, but it also means growing delicious food which will improve human health and well-being. And having a restaurant which instead of living up to Garden Organic's former high standards, is more akin to a motorway service station, is not a good advert for them or for organic growing generally.

We won't be visiting again, unless we hear that things have changed again for the better. We really hope they do.


I decided to split this post in two as the other part is about a different garden: this will follow as soon as I have time to write it!

The Meaning Of Dysautonomia

People sometimes wonder why ME sufferers can have such different symptoms from each other, or why the illness can fluctuate so much, so that one day someone with ME can seem quite well, but another day they can be unable to move. Sometimes people who don't know much about ME think this must mean that ME is all in the imagination, or that those diagnosed as having ME actually have a range of other illnesses and that there is no such thing as ME.

The truth is that ME is a physical illness which causes something called dysautonomia. The brain of someone with ME doesn't communicate with their body properly and as a result any or all of the things the body is supposed to do automatically - the autonomic nervous system (ANS) - can malfunction. The ANS includes the immune system, digestion, circulation, hormones, and respiratory system, among other things. Dysautonomia means, basically, that the ANS does not work properly, that any system of the body - all the things a healthy person takes for granted because they never have to think about them - can go wrong at any time.

This is one reason why ME causes such a wide range of symptoms, why different people with ME have different symptoms from each other, and why one person with ME may have different symptoms from day to day.

You may meet a person with ME who is able to walk, converse, and even hold down a job, because (in addition to the PENE and cognitive dysfunction which characterise all cases of ME) they have only mild symptoms of dysautonomia, such as headaches, sore throats, and a few food intolerances. Please do not assume that these people do not really have ME because they are not ill enough, or that because they don't seem very ill it must mean ME is only a minor illness.

Alternately, you may hear of a person with ME whose dysautonomia means that they cannot sit up in bed, cannot speak, cannot chew or swallow food, and have serious cardiovascular and breathing problems. Please do not assume - just because not everyone with ME is effected in this way - that these symptoms are not real, or that these people have something "more serious" and not ME at all.

A couple of years ago I saw an ANS specialist and had tests which proved that my ME is a physical illness with physical symptoms. The results showed that for me, dysautonomia currently means that the signals from my brain to my senses are 20x too loud (which is why I can't cope with noise or with chemical smells); that when I lie down my blood pressure drops too low so I struggle to sit up again; that my breathing is too shallow; and that my immune system is so over-active it has started to attack itself (which is why I have type 1 diabetes and am at risk of other auto-immune diseases). I say this is what dysautonomia currently means for me, because in a few weeks' or months' or years' time, my ANS may be malfunctioning in completely different ways.

And for someone else with ME, dysautonomia may mean something else entirely.

The Holly Bears A Berry ...

I'm hoping that, time and brain fog allowing, I'll be able to resume blogging (mostly on my garden blog, but sometimes here too) in the new year ...

The Big Card Sale

I'm copying this across, with some slight alterations, from my A Garden Full Of Dodos blog, because I know there are some people following The Clockwork Dodo who don't follow there, so apologies if you see it twice.

I haven't managed to blog for the last couple of months, due to a combination of brain fog, general poor health which meant I wasn't able to garden much so had little to blog about, intermittent internet, and the need to do other things on those occasions when my brain and computer were both functional - such as organising a much-needed week's holiday on Exmoor. I'll try to post something about that here at a later date.


A selection of birthday and blank cards.

On the plus side, I have had plenty of time for my other hobby of card-making, which doesn't use up much energy and only requires a working brain at the design stage. This has been very useful, as I hadn't had much time to make cards since moving to the Cotswolds - in case you haven't read the side-bar of this blog, I sell cards to friends to raise money for ME research.


A selection of birthday and blank cards for children.

I now have a lot of new card materials and a lot of new design ideas - the only problem is that I haven't really got enough storage boxes to fit a lot of new cards! So I have decided to have a big sale to sell off some of my old stock in order to make room for the new ones.


A selection of Christmas cards.

I'm selling cards in packs of 7 birthday or blank cards, or 8 Christmas or other occasion cards. Cards will be selected at random from stock available, but as long as stock levels allow, I can take one or two requests for particular cards to be included (or not included) in a pack. Packs will cost £10, with £5 from each pack going to Invest in ME: the other £5 will cover my costs. UK P&P is free for packs (and for any other cards ordered at the same time). I'm sorry I can't send cards outside the UK, as the postage costs would be too high.


A selection of cards for other occasions.

To see the rest of the cards which might be included in the packs (the ones in the photos above are just a selection, as the captions say), and find out how to order, please visit my Cards4ME blog and scroll down to the two Big Sale posts.

Hopefully I will be back to blogging about my new garden again soon - you can find posts about this on A Garden Full Of Dodos, which is now my main gardening blog.

You Know You Have ME When ...

I started a thread on a forum 1 for people with ME, entitled "You know you have ME when ....". You may be able to imagine the sort of thing I was expecting:

You know you have ME when ...

... you have more pairs of slippers in your wardrobe than you have pairs of shoes.

... the receptionist at the doctors' surgery greets you by your first name.

... you say "shop till you drop" and you mean it literally.

Very soon, though, I noticed that nearly all of the posts were to do, not with the many physical aspects of ME, but with what is known as "brain fog".

You know you have ME when ...

... you convincingly persuade everyone to look for the red file in the hall cupboard when you really mean the blue box in the shed.

... you post your mail to yourself instead of to the recipient.

... you put your dirty clothes in the bin and your rubbish in the laundry basket.

... you get your sentences mixed up and ask someone to turn the light on because you're thirsty.

... you keep dialing the wrong number and when you finally get it right and the person answers you have to hang up because you can't remember why you are ringing them.

Sound familiar? Of course, this is the sort of thing which happens as you get older, isn't it? How about these?

You know you have ME when ...

... someone asks you do you want tea or coffee and you can't figure it out (even though you hate coffee).

... you try to use the TV remote to reduce the volume of traffic noise coming from the open window.

... you take your porridge out of the microwave to stir it, but put it back in the cupboard, and it takes you 2 days to work out what's happened to it.

... you wake up and look at the clock, and you have no idea whether it's am or pm.

... you go to make toast and coffee, put a spoonful of spread in your coffee cup instead of on your toast, and then can't work out what to do with your hands to make it right.

... you try to open the front door by pointing the car key at it and pressing the open button.

Still think this is normal? How about these?

You know you have ME when ...

... you go into your third hospital appointment of the day and the phlebotomist asks your name - and you can't remember what it is.

... you try to say something and no words come out.

... it takes you over a year to write a blog post about ME awareness. 2

... you dress up for visitors and don't notice until well after your visitors have left that your dress is on inside out.

... you spend five minutes trying to work out which is your left hand and which is your right one - and then realise later that you got it wrong!

... your partner walks towards you in the supermarket and you think "who is that and why do they look familiar?"


Brain fog is one of the most difficult things for people without ME to understand. Often R, who has lived with me - and my ME - for over 20 years, sees me making a huge effort to do something physical, and says "I could do that for you, just tell me what you need me to do". He still hasn't quite taken in the fact that, hard as it may be for me to (for instance) move a heavy bag of compost, or prune off a branch above my head, it's a hundred times harder for me to describe what I want done, when my brain just isn't functioning properly and the words refuse to come.

When I try to tell other people about brain fog they usually say something along the lines of "oh, I forget words - we all do that as we get older". This shows they really haven't understood at all. Brain fog's not forgetfulness, any more than post-exertional neuro-immune exhaustion is tiredness. Think about it like this:

Stroke causes word displacement; motor neurone disease causes slurred speech; dyslexia causes all the words on a page to swim together and become unreadable; alzheimers causes memory loss, to the extent that friends and family are no longer recognisable. The brain fog which comes with ME can cause all of these and more.

The thing that confuses people is that with ME the symptoms come and go, so that some days a person with ME will seem perfectly coherent, able to write or to converse intelligibly. This is deceptive: it gives the impression that there is nothing wrong, or that they are just a bit forgetful, when in fact they have a serious disability. The effects can be funny sometimes, of course, but they can also have devastating consequences. Imagine, for instance, going into hospital for urgent treatment and being unable to communicate with the consultant because you can't speak coherently - or can't get any words out at all.

Brain fog is a disability issue. While it's not exclusive to ME, it is not an experience most people share, and it should never be treated as such. Would you say to someone with MND or Alzheimers "oh, I get that too"? No, of course you wouldn't - so please, don't say it to someone with ME. Say "bad day?" or "would it help if you wrote it down?" or "shall I come back later?". Laugh if they are laughing. But remember, brain fog is part of their illness, and for many people with ME it's a major symptom which can effect everything they do, from the smallest household tasks, to their relationships with family and friends, to their ability to access appropriate medical care. 3


1 Thanks to the other members of Christians With ME for allowing me to share some of their posts here.

2 This was going to be my ME Awareness post for 2014, but I'm still dealing with the aftermath of having moved house last year. Physically my health hasn't been too bad, although there's a very long to-do list we're gradually working through. My brain, however, has really struggled to recover from all the paperwork and emails which were necessary for the move. I still have about 1400 unread emails in my inbox and about 1000 unread blog posts in my akregator, unless I write something down the instant I think of it I have forgotten it within seconds, I'm having trouble understanding any TV or books I haven't seen/read before, and I've more than once given my new GP completely inaccurate information because she asked a question I wasn't expecting and I had not only forgotten the answer, I was unaware that there was an answer I'd forgotten.

3 Anyone reading this who has ME and has severe brain fog might find some of these communication cards helpful - I especially love this one.

Nailing My Colours To The Mast

Well, actually I'm not quite doing that, because I'm not saying for which party I used my (postal) vote, nor am I asking you to vote for a particular party, or trying to start any political debates. I just wanted to share this with you:



Sooner or later, everyone has to face some sort of illness - if not their own, then that of a family member or a close friend. If it hasn't happened to you yet, then don't think it never will. When it happens, unless you are fabulously wealthy and can afford to pay for entirely private medical care, you will need the NHS.

Without the NHS, my mother would most probably have died of cancer - this year marks five years since her operation, and she's just been told that she no longer needs to go back to hospital for annual check-ups.

Without the NHS I would most definitely not have survived diabetes ketoacidosis - this year it's four years since I was admitted to A and E and diagnosed with type 1 diabetes. Without the NHS I would not have access to the insulin and needles I now need to survive from day to day. The privatisation of the NHS could quite literally be my death sentence.

So, while I'm not asking you to vote for a particular party, I am asking you to think very carefully about the NHS before you vote. Do you agree with the Conservatives that it should be taken apart and the various pieces sold to the highest bidder, or do you want more funding to be put into it so that it can keep saving lives? Do you want it to be run by companies like Group 4 and ATOS, or do you want it to be run by doctors and nurses? Do you want the cheapest treatment available, or do you want the best treatment available?

Please, use your vote to ensure the NHS is not destroyed, for the sake of everyone you know who is ill now or who will be ill, and ultimately for your own sake too, because one day it could be you.

Bluebells Bazaar

I've received a couple of emails from Green Island Gardens in Colchester, about the Bluebells Bazaar they are holding over the weekend of May 16-17, in aid of the National Gardens Scheme. Apparently there will be stalls selling local arts and crafts, entertainment for the family, and refreshments (as well as bluebells in the garden!). There are details on their website here, and you can buy tickets in advance.

Colchester is a bit far for us to go now that we have moved to the Cotswolds, and in any case I can't go to events aimed at families as they are too noisy for me. But if you are, or can be, in the area that weekend, the NGS is a good cause, and I do thoroughly recommend the garden. You can read my post about it here.