Wednesday, 31 August 2011

Me and M.E.

Recently through twitter I have met some lovely people who have ME (CFS) I feel privileged to have been welcomed into their twitter lives. Its nice to not be alone, and its nice that twitter gives me the freedom to say how I am 'actually' feeling - its a sad truth that when most 'normal' people ask you how you are feeling they don't want an honest answer :(

I am lucky I am now able to work (have been since leaving uni in 2003) and that I work for an organisation that doesn't see disability as a problem. They have been very supportive especially as my ME flared up due to bereavement and the stress that followed for lots of various reasons - they operate flexible working which has let me change my hours to part time while I get back on my feet. 

For those who don't know what ME is:

Myalgic Encepalomyelis (M.E)
Other names:

In the UK
Chronic Fatigue Syndrome (CFS)
Post Viral Fatigue Syndrome (PVFS)

Chronic Epstein-Barr Virus (CEBV) or Syndrome
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

In the past it has also been called things such as Yuppie Flu.

Why all the different names – it is still classed as an emerging disease and there are still conflicts over its validity and cause – research is still on going. It generally falls into 2 categories with doctors:

  • those who believe that it does not exist or that it is psychological
  • those who acknowledge it
There have been lots of studies over the years and the disease has been categorised and confirmed as physiological and not psychological.

The cause – still unknown, research is on going.
A name – they might agree eventually, but generally they are waiting to find out the cause before a definitive name can be given.
A cure – maybe one day……

The most common and widely accepted names in use at the moment:


Diagnostic criteria - you must have severe chronic fatigue for at least 6 months, with no other medical condition identified as the cause and one or more of the following:

  • substantial impairment in short-term memory and concentration (can have other forms of cognitive dysfunction)
  • sore throat
  • tender lymph nodes
  • muscle pain
  • multi-joint pain without swelling or redness
  • headaches of a new type, pattern or severity
  • unrefreshing sleep
  • post exertional malaise lasting more than 24 hours
Other symptoms may include:

  • abdominal pain
  • alcohol intolerance
  • bloating
  • chest pain
  • chronic cough
  • diarrhoea
  • dizziness
  • dry eyes or mouth
  • earaches
  • irregular heartbeat
  • jaw pain
  • morning stiffness
  • nausea
  • night sweats
  • psychological problems (eg drepression, irritability, anxiety, panic attacks)
  • shortness of breath
  • skin sensations
  • tingling sensations 
In general symptoms are not improved by bed rest and maybe worsened by physical or mental activity.

It is generally diagnosed in women more than men and with onset generally being between mid teen to mid forties either after a virus or stress event. In terms of longevity it falls into one of 3 patterns:
  • those who make a full recovery within a couple of years
  • those who make a partial recovery and experience cycles of illness (remission/relapse). The severity of the cycles can vary and can sometimes be a case of learning to manage this and make adjustments to your life
  • those who get progressively worse and end up severely disabled (this is rare).
Mild: You are able to care for yourself, but may need days off work to rest

Moderate: You may have reduced mobility, and you symptoms can vary. You may also have disturbed sleep patterns, and sleep in the afternoon.

Severe: You are able to carry out minimal daily tasks, such as brushing your teeth, but occasionally you may need to use a wheelchair. You may also have difficultly concentrating.

Very Severe: You are unable to carry out any daily tasks for yourself and need bed rest for most of the day. Often in serve cases you may experience an intolerance to noise and become very sensitive to bright lights. 

Me and M.E.

I was diagnosed in 1998 (after repeated trips to the doctors, lots of blood test and eventually my Mum pleading with doctors that there was something wrong with me and she just wanted anwers) I was only 18. We think I got glandular fever (my symptoms started sometime during 1996/7), I can only narrow it down like this because of my experience during my A levels – I was exhausted and would fall asleep when ever I could – often waking up confused. I resorted to sleeping with the tv on so that I would have a point of reference when I woke up. 

Going from someone who is active and relatively healthy to someone who is profoundly tired with recurrent infections is a little bewildering and lonely, after refusing trips out or having to pull out at the last minute with no real reason means that eventually people lose interest in you and drift away (its certainly a test of who your true friends are). I struggled through my A levels, but once they had finished I pretty much crashed.

At my worse I was pretty much bed bound – I would have just about enough energy to get up in the morning and get dressed but then I would need sleep (sometimes the getting dressed bit was optional but it helped me to feel more human if I could struggle into clothes or at the very least a bra and knickers under clean jammies. I became a bit obsessed with jammies and bed linen, my bed was pretty much my world for a while). I had recurrent throat infections and was in so much pain that I could not bear people to be within my physical space let alone touch me. My headaches grew more frequent and my tolerance for noise got worse. 

I became intolerant to alcohol and different types of drugs (I now carry an epi-pen just in case - you never know when my body will decide to attack medication). Walking became painful and then there was the dizzy spells (I even manage to get dizzy when I am just lying in bed). And the most embarrassing form of cognitive dysfunction for me was (and still is) getting words muddled, the correct word is there in my brain but my mouth will either come out with something completely different or struggle to come up with anything at all. Sometime I slur my words and walk into things because my balance has decided to have an off day. Memory as well – I have to write down appointments and dates to remember, I struggle to remember events and things that have happened and yet random facts seem to stick and my ability to learn is fine – I just make notes and remember things by repetition. I suffered from depression, and anxiety with occasional panic attacks thrown in to make it interesting.

But I think the worst experience of being ill was the benefits system - I was on income support, then I got the disabled allowance. I was turned down for Living Disability Allowance (basically because I could do a small amount of things for myself they didn't seem to take into account the phyiscal cost to me) but then my world was turned upside down when I was made to to the All Work Test (or whatever they called it back then) basically they stopped everything and said I was fine to work - it seemed to be based on the fact that I could sit in a chair and answer a phone - not if I could remember the message or the fact that if I spent a day doing that then I would need a month in bed. Sure I would go out occasionally for shopping trips with my Mum or friends (I was a teenager) and yes I would look 'normal' like anyone else but what they didn't see was what happened when I got home behind closed doors. The pain, the tears, the despair all for those few hours of pretending to be 'normal'.

Anyway with the help of the wonderful benefit advisor's at my local council (who could see how ill I was) we took the decision to a tribunal and lost - the reason they said I was lying and basically in collusion with my doctor to fraudulently obtain benefits. As you can imagine I became very depressed and go figure I went back to claiming income support signed off with depression - with no problem at all. At the time the benefits system did not understand ME and I doubt that its improved. 

Gradually I started to be able to do more things and learnt to listen my body (a difficult lesson to learn and one that I still struggle with. I still get it wrong and pay for it) – the best way I have found of explain it is like a battery that you have to charge up and you have to find the balance of activities that don’t make it run out but help to keep it charged (pacing and switching), so for example if I want to spend a day at the beach I know that I cant arrange or do anything for the evening and following day and then have to take it ‘easy’ for a couple more days.

I decided that I needed to do something that would give me a better chance for independence in the future and went to Uni - again I was lucky and found a Uni that was very supportive. The course was modular and I was even able to change half of my degree towards the end of my first year as I wasn't coping with the large lectures. I wasn't able live in halls or take part in the normal uni experience freshers, the students and the Balls. But I think having a chronic illness has given me 'life experience'.

Since Uni I have been lucky to find jobs - short term contracts at first and then finally in 2008 a permanent contract :)

Where I am now:
I fall into the pattern of cycles it is unlikely that I will never fully recover (generally it is considered that if you are going to make a full recovery you will do so within the first 2 years), I have had to make adjustments to life to be able to cope.
I have to be careful that I don’t over extend myself. I still experience pain (especially if I have over done it) and suffer from a lot of headaches (I function on painkillers that would put most people to sleep). My immune system is rubbish and attacks the things that it shouldn’t (medication is its favourite and I have a long list of allergies) and parties with things that it should attack (I can correctly diagnose myself with most infections I go through phases of throat infections, stomach infections, chest infection and sinusitis), it takes me longer to get over everything and I often have to take antibiotics. I get tired and notice things more when I am tired such as the word confusion (its amazing how much energy it takes to hide it sometimes). I still have problems with my memory (the date of my wedding (and my husbands birthday) is on my wedding band – so that’s something I cant forget). I still suffer from depression and anxiety and the odd panic attack. Stress and bad infections tend to set me back, the severity of a set back depends on how quickly I recognise and admit it and learn those lessons of listening to my body again.

Putting it into context of the severity descriptions:
I was severe/very severe and moved to severe/moderate then onto moderate/mild
Where I am now – Mild with periods of moderate

M.E is not the only thing that I have (other things may have developed because of the M.E or were just there waiting to be discovered), but having M.E has made it harder for me to get properly diagnosed with other things as all to often symptoms can just be attrubuted to M.E, but I am lucky and have a very good and supportive doctor (the only aspect of moving that I dont like is finding another supportive doctor).

There is lots of information on the internet – just Google (net doctor / patient / NHS)

Thank you for taking the time to read and to understand me and M.E a bit better

Photo A Day - Day 12

Today's challenge was something beginning with B.

Well as Mouse and I are in the process of packing up to move it had to be boxes:

The contents of most of the boxes....

erm that would be books and we have't packed them all yet :)

Tuesday, 30 August 2011

Photo A Day - Day 11

A Cloud Formation 

Well its a bit grey out so no real defined clouds

Moody Sky
So I pointed up, snapped and tweaked - hope you like it. 

Monday, 29 August 2011

Photo A Day - Day 10

Day 10 - Anything fluffy but not living

There's a Mouse in the house
I made blue mouse a while ago - he has vintage fabric for ears, his tail is up-cycled ribbon and his eye is a pom pom.

The poor little mouse only has one eye as Ferdinand 'found' him when he was a puppy and well I think you can guess the rest.

Sunday, 28 August 2011

Photo A Day - Day 9

Today was anything Yellow

I struggled with this one - when I think of yellow I think of daffodils but at this time of year I wasn't going to find any of those.

Then there is the next obvious choice of a Banana - ugh NO they make me throw up so why would I want to photograph one?

I remembered that some squares that I have been knitting for a blankie are yellow - but too pale so didn't really photograph well. I was just about to give up on the day when I noticed the Cat Cuddle Cushions that I finished yesterday and oooh yes one is indeed yellow :)

These cuddle cushions came to life after a doodle and will be featured in the launch of my esty shop.....

Getting closer

Saturday, 27 August 2011

Photo A Day - Day 8

Today is must have a 'triangle' in it

Spot the triangles :)

This is my Pentacle I have warn it for many years and sometimes think about getting a new one but never do - this one is tuned to me and gives me comfort.

When I was younger I would rarely take it off but now I have learnt to be content to not wear it - making way for other lovely necklaces and sometimes I just find it too uncomfortable to have anything around my neck (probably some strange M.E. thing).

I do have another Pentacle that I do wear permanently - its the closure for the labret in my lip.

As a symbol it can represent many different things, but for me its a protective talisman and a symbol of my faith.

Friday, 26 August 2011

Photo A Day - Day 7

Today's photo challenge was to draw something and then photograph it....

Well I sew I don't draw (my husband is the artist ), but here is my effort I hope you like it:

Flower Sprite
Well that's one week of photos done and I am looking forwards to starting the next week. I am really enjoying the challenges thinking of my interpretation of the days theme and seeing everyone else's interpretations. 

I have decided to take this opportunity for everyone to meet my cameras (yes sorry I do have more than one).

Ok so I lust over a DSLR and almost brought one a few years ago to replace the camera I broke while on holiday and because I was threatening to do my own wedding photography (I like being behind the camera not in front of it - I didn't need to actually be in the wedding photos!....Right?.....Well yes we did hire a photographer I am in photos, some are good others well I have issues and... No not going to mini rant).

Well instead of DSLR I got a new bridge camera - it is referred to as my BIG camera

I love this camera, its super macro, its 18x zoom and it feels ooooh so nice to hold.

Next is my pocket camera - this is my newest addition - I wanted some that was less.... well...erm...flashy 

Now me and this camera are not yet friends - we're just getting to know each other. I sometimes think that they tried to make it a little too cleaver I have tried it in auto mode and the results were frankly rubbish, now when I take it out of auto mode and use its optimised scene settings it is pretty good - but sooo fidley to change setting every time you need to. But it does have the panoramic mode :)

And lastly my phone:

Still lusting after a DSLR though.... Maybe..... One day......

Thursday, 25 August 2011

Photo A Day - Day 6

Today was free choice in landscape mode.

I set off for work this morning with a fixed idea in my head as to what shot I wanted and so at 6.50 this morning I pulled the car over on a country road to attempt my vision...

Well it just wasn't happening - rubbish light and my subject of choice was just too far away for what I was trying to achieve - and while under normal circumstances a walk across fields would be welcome it was early and I was on my way to work so that plan was abandoned :(

On my way home a new plan was hatched - using the ultimate landscape mode - panoramic

Bridle Path
Going back to the car (again pulled to the side of a country road) a bonus shot :)

Wednesday, 24 August 2011

Look at what I've been learning to do....

Well I am trying to learn new things... is also a form of procrastination as I am meant to be packing for house move (contracts signed in preparation for exchange its all getting a bit real now - 2 southern mouses will be heading back up North and this time it will be to stay - eek)

I have dabbled with jewellery making in the past but I decided that I would have another (proper) go and thinking maybe a side line to my shop (its getting there - honest. Even have Moo cards now - again its something waiting for the move, soooo frustrating)! 

Anyway here goes what do you think?

Do you feel lucky - necklace
Do you feel lucky - ear ring (don't worry I did make a pair)
Do you feel lucky - close up to show a bit of the detail

I just love the little dice :)

Lady Luck - kilt pin brooch

A little bit of luck
Ring Ring

I accidently brought more bits the other day - wonder if I can fit in some more 'playing' before I have to pack all my craft bits away.....

Please let me know what you think :)

Photo A Day - Day 5

Day 5 -  free choice but this time list 3 reasons why you have chosen it.

My Rubies

Ok reasons:
1. I had this necklace made for me and its beautiful

2. When my Mums estate was settled my Husband and I agreed on a small amount each that we could just spend without worry. It was also a way of honouring my Mum who in her last year decided sod it and brought herself things that she had always dreamed about owning. So in a round about way this is kinda the last thing that my Mummy ever brought for me

3. The wonderful artisan who designed and made it - well when my Mum was young one of her first jobs was as a nanny for a family, and she always wondered what happened to those children - shortly before she died she was able to make contact with one of them (Mums brother, Facebook and fate helped) it really meant a lot to her. Yes you've guessed it was the lovely lady who made me my rubies :)

And that lovely lady is Beth Richmond, please see her website and facebook page for more examples of her stunning work of original handmade jewellery in semi-precious and precious stones and metals

My Rubies in all their glory

Oh and I can really recommend her craftsmanship - I always feel like a million dollars when I wear my Rubies :)

Tuesday, 23 August 2011

Photo A Day - Day 4

Favourite mug or cup.

Well this isn't actually my favourite - that's packed away in a box waiting to be rediscovered when we move.
This mug is simply the one I use most often - it being my work mug and is mostly filled with wonderful lovely joy - Earl Grey (twinnings of course).
I grew up in a house of coffee drinkers so I owe my love of tea to my Grandma and a proper brewed pot. I do have to confess that mostly I use teabags but sometimes for that special treat there is nothing better than making tea properly - warm the pot, add the leaves followed by hot water (never boiling it should be near to boiling) leave it to infuse...... ah.

Oh and the milk - well if you have it that goes in last - (puts on posh voice) its a matter of class darling :)

Now when I say 'Earl Grey', you say 'yes please'....

I am ever so slightly addicted to this song enjoy (and for more wonderful madness check out Professor Elementals website - link below)....

Professor Elemental An emcee, mad professor, inventor, explorer and exotic dancer.

Monday, 22 August 2011

Photo A Day - Day 3

Today's theme is something edible:

Oat Crunch

I think I may have taken the theme a little to far as this morning I have mostly been baking (Fruit cake, Oat Crunch, Victoria Sponge and Bread is currently doing its thing).

Before my Mum past away she wrote down the recipes of some of her favourite bakes, the fruit cake and oat crunch are my favourites as they are both quick, easy and taste great (sorry no picture of fruit cake as it is still cooling). 

I debated whether or not to share the recipes, but recipes are to be shared and enjoyed so here goes:

Oat Crunch

10 oz porridge oats
7-8 oz butter
7-8 oz musavado sugar
Pinch of salt (optional)
Ginger or spices
Optional – nuts, dried fruit etc

Melt sugar and butter add the oats (and optional extras if desired) press well into non-greased baking trays. Cook at gas 4 for 20 minutes. Remove from the oven and cut into pieces – leave in the tin until cold, turn out.

Fruit Cake

¼ lb melted butter
8 oz SR flour
2 eggs (unbeaten)
4 oz sugar (caster or musovado or a mix)
12 oz dried fruit
¼ pint milk/sherry or orange juice
1 tsp mixed spice

Mix all ingredients well, pour into a lined 7-8” tin cook at gas 2 for approx 2 hours.

Sunday, 21 August 2011

Photo A Day - Day 2

Ok so I have made it to day 2:


...and batteries have charged so I get to use the big camera (had to get new charger, slight incident with cable and bunny -  left me one camera with dead batteries)

Attempt number 1:

Ok so not great move onto next pet:

Lady Dru

Now I do like this picture of Drusilla but it wasn't really that much of a challenge (she was asleep after all), so I decided to move onto a more 'difficult' subject...

I had a few furry children to choose from this morning :)

Pet roll call:
Lady 'Drusilla', (Dru) - Cat, British long hair - blue (almost)
'Ulysses' 31, (Uli) - Cat, British short hair - tabby
Luna - Cat, Britsh short hair - tabby (sister of Uli)
Caesar - Cat, British short hair - black (my brothers cat who we are looking after for a bit)
Arch Duke 'Ferdinand' the First (Ferd or Ferdi) - Dog, Sprocker Spaniel - red and white
Queen Zara - Rabbit, Giant - Black (if you're not sure how big a giant rabbit is - well she is bigger than a cat)


Captain James T Kirk (we just call him Kirk).

He is the newest member of our family, we adopted him a couple of months ago, he is a dwarf lop has settled in really well and loves his veggies (the only way I managed to get him to sit still(ish) for a few moments):

Photo A Day - Day 2 "Kirk"

If you have ever had rabbits you will understand what an achievement this is an actual bunny photo which is why I have made it my Photo of the Day.

We do technically have another cat - Spike brother to Dru but some 'kind' neighbours decided to feed him and then let him into their house (we still get to pay the vets bill though!).

More rule bending now (kind of)
Because I want to prove that it is possible to take great photos of pets but:
1. you need to be patient
2. you will have to take LOTS of photos 
3. you need to know when your pet simply has had enough
4. sometimes its just a case of having camera and taking advantage of an opportunity

So in best Blue Peter style "here are some I prepared earlier" 

Luna - "Holding on Mum"

Ulysses - Nap Time

Ulysses - "where did they all go?"

Hail Caesar
Queen Zara (Giant Rabbit)
Ferdinand when he was ickle

I hope that you have enjoyed my efforts for day 2, see you again for Day 3....

Saturday, 20 August 2011

Photo A Day - Day 1

Photo A Day

Ok so this has been an idea that has been around for a while, a photographer friend of my husband was doing it on his facebook page. Search hashtag #photoaday on twitter and you come up with lots, you can also google, so many blogs, flickrstreams etc to enjoy, its also known as project 365.

So what made me decide to take the plunge - well I have thought in the past that its an interesting idea, but an interesting idea is as far as its got until now, why?

Well I was inspired after reading the Day 2 blog entry from Cajame Creations

I giggled into my tea at her efforts to photograph pets - I know the frustration (4 cats, 2 rabbits and 1 dog - you would have thought that one of them would sit still long enough for a photo).

Well she mentioned RULES, these rules are from Saturday's Child blog

These are the rules so far:
Days 1 - 7

Day 1 - free choice to begin with
Day 2 - a pet or if you dont have one a stuffed toy
Day 3 - anything edible
Day 4 - your favourite mug/cup
Day 5 - free choice but this time list 3 reasons why you have chosen it.
Day 6 - free choice but must be in landscape mode not portrait
Day 7 - the cd you currently have in your cd player

Days 8 - 14 

Free choice but with a mainly green theme ( ie the colour green not the concept)

Now once we have achieved this 2 weeks worth of posting and hopefully loads of people are joining in lets be bolder and make it to the 1 month total in one go.

Days 15 - 28

Your lunch every day  (you never know it may make you look at what you are eating in a whole new light.)

I like the idea of rules - it means you will sometimes have to think outside of your comfort zone, but I am not sure that I will be able to stick to these rigidly - they might need some tweeking to work for me.

So Day One and this is it:

I liked this one because of the blue sky it made smile.

Of course I can never go out and just take one photo so these are the runners up (rule bending!).....

I also had a go at playing around with Photoshop - but I need way more practise (and maybe to *borrow* my husbands graphics tablet, and a lesson):

Hope that you liked day one - can I manage all 365 days in the year? Well I will give it a try :)

Wednesday, 17 August 2011

Gamma Dog

Well I was prepping a blog about stitching but that will be for another time.

I have decided to introduce another little bit of creativity and a member of my family:

Archduke Ferdinand the First (Ferd for short)

He is a lovely Sprocker Spaniel (springer x cocker) and at 18 month is still a puppy :)

Why have I decided to deviate (slightly) off topic?

Well this morning we had to rush outside (again) as next doors dog was having ago and as she has already put her head through the fence once – we get worried for the safety of our little boy. And he is a very special little dog and the inspiration behind something but I will get to that...

Why the worry? A while ago he had to have veterinary treatment (torn flesh cut away and then stitched back up around his jaw – we were lucky that it wasn’t his throat), he was hurt by next doors dog after an altercation over the fence in the back garden. We got the Dog Warden to talk to them – but since all we have had is barbed comments thrown over that they know their dog is not to blame, how our dog starts it all and is the aggressive one (umph not sure how they work that one out, I won’t say anymore other than they had another dog who had to be put to sleep due to injuries caused by their other ‘loving wouldn’t hurt a fly’ dog – make your own conclusions).

I was worried about my boy after the ‘incident’ he was nervous and took him a while to feel confident about going out in his own back garden – that’s when I decided that I would look into dog training, to get him around other dogs and to help rebuild his confidence and that’s how I found Jane. She reassured me and said that he would be welcome to come along to dog school – and well he is doing wonderfully.

Jane is very patient and teaches reward based training (non of the hitting, shouting, pulling or choke chains that some people use) and has been appointed the first Victoria Stilwell (best known for the hit TV show ‘It’s Me or the Dog’) Positively Dog Trainer (VSPDT) in the South of England.

Classes are never boring we do everything from lead work to doggie dancing. It doesn’t end at obedience training – there is also agility, rally, gun dog training, heelwork, puppy classes, doggie parties and of course dog walks.

A bit about Jane from her website

“I have had a life-long interest in animals, their behaviour and well-being. I also have an M.A in Education and have been involved in teaching and training for many years. In 1981 I gained an Honours degree in Zoology from Nottingham University. Much of my work is with dogs, but I can also help with cats and other small animals”

If you are in Essex and have been looking for a dog trainer then look no further than Jane (for full contact info see website or email )

Ok well I am guessing that you are still wondering about the title of this blog... Gamma Dog... and how that relates to Ferdinand?

Well ...drum roll please.....



Ferdinand is Gamma Dog and features on a t-shirt designed by freelance artist and illustrator Robin Carey (

This and other designs can be found here -

And well soon he just may have his own story...

.... A little preview (still in draft) I hope that you like it

Agent Mouse and Gamma Dog Ferd are in combat training when they get the call from the intergalactic space agency command centre.

“Agent Mouse here” he says as he connects to the space communicator
“Ah good, Agent Mouse we have an urgent situation that we need your immediate help with” says Commander Bob
“What’s the situation Commander?”
“There is an Ogre terrorising the village on Moon Base designation Mars Luna 543 in the Nexiam System. I need you to go there at once and help the villagers.”
“On our way Commander.”
Ferd sets about putting their training equipment away as Mouse puts Mars Luna 543 into the spaceships navigation device.
“Woof, woof, grr”
“I know Gamma Dog an Ogre does sound big and frightening. Good job that we have been training”
“Destination set. You better buckle in Gamma Dog it looks like it might be a bumpy ride as we travel to the Nexiam System. We will have to go round the belt of Ulysses”
“Woof, woof”
“I know that we need to hurry but we can’t risk running into any space spiders”

Their space ship whooshes into action speeding them on their way to help.
Related Posts Plugin for WordPress, Blogger...