Sunday, 26 January 2014

Isolation

Caring for the girls is something I don't give a second thought about - they are my everything and I strive to do all I can, to be the best advocate, mother and friend to them.  Mostly I am perfectly happy in my bubble and these four walls.

However, just every now and then it hits me how isolated we have all become and how much the girls illness has affected life for each and every one of us.  Most evenings by 6pm I am desperate for the time to arrive when I can crawl into my pj's & snuggle down under a blanket with The Dave, sitting in quiet, comfortable silence.  I'm not a social butterfly, a party goer or the life and soul of a gathering.  I like being with people who understand our situation, who will ask briefly how the girls are, to acknowledge their illness and then knowing how limited my conversational topics are, to spend the rest of the time chatting about completely different topics - sharing their lives and adventures with me and making me feel included and involved.  We have a couple of wonderful local friends who we see when we can who do just this.  They know we can't plan to meet in advance and so are happy to socialise on a short notice basis.

However, as all carers out there will testify to - caring for others can put a huge strain upon relationships with your extended friends and family.  It's understandable, they get fed up asking you to meet up or go places with them to have you reply, "I can't I have to take X to a medical appointment", or "I can't X really isn't well enough for me to leave her" then of course sometimes it's simply "I can't, I'm just too tired and have so many chores to catch up with".  So invitations soon dwindle and stop, messages and phone calls soon drop off and before long you feel that you are no longer part of the family or friendship circle but now just an stranger with a familiar face who is looking in from the outside. A living memory to everyone within but just not quite included, just thrown a cursory nod every now and then.

I have found some exceptional friends on-line who I have met through the closed forums providing support and advice to me as a carer of children with chronic illness and the fact that both myself and The Dave are suffering from stress related illnesses too.  These wonderful people have helped me to feel connected to life outside our walls again and their love and support is unconditional, always forthcoming and more importantly they fully understand if you are absent for a while or don't reply for several days.  These friendships I cherish and who knows, one day we may get to meet in person, face to face - that would be wonderful.


Hopefully, one day our lives will become less insulated.  The girls will gain strength and be able to venture out  away from home, without our support and find their wings and fly out into the unknown, a life full of promise and adventure,  to explore, make new friendships and live life.  When this time comes I know both myself and Dave will be able to then re-acquaint ourselves with old friends should they welcome us to and strengthen our existing friendships further.  

x~X~x








Thursday, 23 January 2014

Strength

As a caregiver to my daughters I strive to be the best advocate I possibly can, try to remain positive about the future and guide them wherever possible whilst also keeping as much of the control over their lives in their hands and not mine.  This can be difficult as when they are really sick they need to pass over the control to me but I am mindful to pass it back when they are well enough to take it on board again.

This picture is a pretty good description of my mantra, what I aim to be and hope I am becoming.  It is hard work, although to read it it sounds easy - 

  • To be a giver is something as a mother you do naturally for most part.
  • The giver of love - yes that's unconditional.
  • The giver of good vibes- now that can be a challenge on days when you just want to turn your face to the wall and cry with frustration and anger that this is happening to your children. Trying to be Zen when you feel despair and to throw out good vibes is something I am not always capable of doing but working at and hoping to be able to turn on and give out with practice in the future.
  • Giving strength can be draining and exhausting both emotionally and physically but I feel every carer does naturally try to do that at all times...
This past week has had many a bump in the road (more like gigantic potholes to be honest) and I have been struggling to know what course of action would be for the best. 

My eldest child, who has struggled for a large portion of her life with social anxiety and then later depression and self harm has once again been going through a dark period.  It has held her in it's grip for the past few years and makes her everyday life in School/College a struggle.  We have been under our CAMHS team for several years and they have been doing what they can to help and support her - but it wasn't until we started seeing the psychiatrist that the situation started to improve.  Once the depression was treated with medication  - the issue of self harm appeared to have been resolved, or so we thought.   Sadly it would appear this is incredibly common amongst modern day teens, which I find shocking and sad. I have included this link for anyone who is experiencing this or knows someone who is, as it may help you work out a way forward;
http://www.youngminds.org.uk/for_children_young_people/whats_worrying_you/self-harm?gclid=CKng_eH2k7wCFQ3ItAod0XAAjQ
My eldest had previously been using self harm as a way to release her tension and sadness, the medication took the edge off those feelings and the self harming stopped.  Sadly, over the past few months the depression has once again been escalating and so has the anxiety, resulting in a number of severe anxiety attacks.  The desire to self harm has come back which has taken all her strength to resist.  Unfortunately, the security blanket she crawls under to prevent herself from self harming is to roll a cigarette and smoke.  Not ideal I admit - but on balance to smoke a cigarette or cut yourself - which is the worst option?  

Understandably, feeling deeply unhappy and anxious along with negative thoughts and lack of love for self has meant her College work has suffered.  This was very apparent by her mock AS results - which she found distressing as she is a normally a high achiever and this was unexpected for her.  Due to the emotional turmoil she hadn't been able to concentrate on her studies, nor had the inclination too, neither did she care about life in general or her future, leading at times to some bad choices and behaviour.  

However, no matter how much you love someone, how much it hurts to see them self-destruct,  you cannot do anything to help until they admit there is something wrong and will accept your help. Thankfully, my daughter did see that something wasn't right, she was confused, upset and frightened by how she felt and the way her life was going.  Then - she did the bravest thing possible - she mustered all the strength she could and came and asked for help.  I am so thankful that she has and so proud of her for realising that she didn't have to try and fight her demons by herself, she has a family and friends who love her and will support her and stand alongside her to fight those demons together.

We have spoken to the College and Psychiatrist and have meetings with both to work together in providing a structured treatment & education plan. This includes dropping one of her four A'levels with immediate effect.  The College have assigned a tutor to be her "go to" person along with support during exams and a place to go when feeling anxious to have space to calm down, have a drink and take time out.  

Her treatment for depression and anxiety is ongoing - there is no quick fix, but she is showing strength and determination to fight her demons and we will be there beside her and help her through this however long it takes.  I have huge admiration for her as she won't give up, she is learning how to work towards a happier, healthier self and uses meditation to calm her mind and soul.  She has started a blog to help rant and vent about issues she finds important to her which helps prevent her bottling up her emotions which I support wholeheartedly too, even though I don't always agree with some of her rants/discussions;
http://keishamawer.blogspot.co.uk/

My other two daughters also continue to suffer many a bad day due to their ME, it causes horrific fatigue - post exertional malaise (PEM), described by http://www.cfids.org/  as being;

"Muscle wilting meltdown, air gulping short of oxygen feeling, brain blood vessels flayed on a laundry line in the wind, metal rods in the back of head . . . someone crushing your ribcage, limbs giving out, mesh bag constricting head, ‘pingers’: those first small headaches that warn of bigger headaches, ‘back of head clamp’ headache, increased gravity feeling, being pushed backward into bed, temple-to-temple headache, weak arms as if bound down by stretchy ropes, eyes and brain blanking with a kind of pulse through the head . . ."

This week they both started their home tuition, which has been a big step forward for them towards the road back into education.  Tasha is still very much in the acute phase which means she is only able to manage very short bite-size amounts of tuition before she is exhausted - literally 5 minutes is all she is managing initially.  For Tara, who has now improving very slowly, her initial tuition session is between 30-60 minutes. 

But with ME this seemingly small step to those on the outside is a mammoth one for them and inevitably causes a degree of PEM.   This will continue until their bodies adjust to the new activity and settles down.  This means any additional activity has to be minimised during this period of adjustment - it's a case of taking baby steps not big leaps.  

Education is a challenge too due to brain fog issues - which is a common symptom for ME sufferers.   It means that they can only start off doing very short stints of school work with their tutor and build up their tolerance very gradually, over a period of weeks or months, it is explained by Dr Myhil as;
  •  Poor short term memory
  • Difficulty learning new things
  • Poor mental stamina and concentration - there may be difficulty reading a book or following a film story or following a line of argument.
  • Difficulty finding the right word.
  • Thinking one word, but saying another.
The knock-on effect of this also means that they can't see as much of their friends, mess about on the computer, or use their energies in anything that will further drain their resources.  Instead they will need to take rest periods between activities and try to pace as best as they can.  In the past our efforts have failed and the education has had to be discontinued due to the severe PEM it caused and so this time round we are being cautious.

I stress this because ME is a serious and very disabling illness that is not taken seriously as yet by a vast swathe of the population who have been fed misinformation about it being a psychological attentions seeking illness of the lazy!!  Also, because it is an "invisible illness" where sufferers don't always outwardly look sick so they aren't always believed.   

As you can appreciate, when you live with this illness, seeing this reaction from others makes my blood boil, as why on earth would anyone, let alone a child, pretend to be ill and restrict their life so enormously, lose friends, miss out on education and so on?  It is a physiological illness and yes of course there are psychological implications which develop due to devastating impact it has on what was previously a healthy, active, normal life.  We have utilised the advice and support of the TYMES (The Young ME Sufferers) Trust and would say for anyone with children diagnosed with ME that I can highly recommend you log onto the website.  It's full of advice, publications and support for your child and they also have a volunteer run helpline you can call (leave an answer-phone message if no-one answers, they do call back).  It is headed by Jane Colby (an ex-headteacher) who is a huge campaigner for children with ME.  http://www.tymestrust.org/

Another great source of information is Invest in ME  (http://www.investinme.org/), who are active in funding biomedical research into ME and also provide a wealth of information - they have produced a great leaflet that can be downloaded and printed off to pass on to raise awareness in the general public to help fight this ignorance about the illness. 
http://www.investinme.org/Documents/Education/IIMER%20Info%20leaflet.pdf
In it it defines that ..
ME is a severely debilitating neurological illness.  
It has distinct: onset; symptoms; causes; responses; and, long and short term prognoses. 
ME is an acquired illness with multi system involvement which is characterized by post encephalitic damage to the brain, brain stem and the Central Nervous System (CNS). 
Reaction to physical and mental activity and sensory input is unique to ME. 
Over-exertion can make ME worse and the effects are often delayed and may not be seen within 24 hours. 
Symptoms can range from mild to severe to life-threatening and can include: 
● Cardiac and Cardiovascular Problems 
● Cognitive Dysfunction 
● Gastro-intestinal Problems 
● Headaches 
● Hormonal Imbalance 
● Immunological Problems 
● Muscle Weakness and Intense Pain 
● Neurological Problems 
● Sleep Problem

So folks I suppose amongst all my ramblings what I am trying to share with you is that our life is tricky, there are many, many battles we have to face on a regular basis.  We take two steps forward and one step back - BUT it's got to be better than one step forward and two steps back - no?  

I am on a mission to share our experiences, raise awareness wherever possible and hope that if enough of us do, eventually we will gain the recognition and support so desperately needed. Never underestimate the power of many, eventually we will be heard.

So I take on board that life is hard for us as a family, some days so bleak it's hard to remember any joy or laughter ever existed within these walls - but then I shake myself down and remind myself that no matter how hard life is, how little light you can see from your end of the tunnel - there will be better days ahead, I believe vehemently that there will and that there will be treatments and with a uniform recognised biomedical approach for sufferers in the future.  

I saw this little note somewhere on the internet and loved it - try to hold onto the good and great days - for they will come again...

x~X~x

Wednesday, 22 January 2014

Recipes

This week I've been trying out various gluten free recipes as 3 out of 5 of us have IBS and I know many of you out there also suffer from this condition and if you have a sweet tooth like us I thought you may like some of these recipes.

However - it's not easy getting it right - some of the recipes I have tried (and they  have been numerous) are just too dry and crumbly and others lacking in flavour, mostly though it's trying to get the right texture.

The first recipe was given to me by a lovely woman who has a coeliac husband, it has to be said when I saw the ingredients my eyebrows shot up and I was exceptionally dubious about the whole thing - but I gave it a whirl.

Apricot and Almond Cake
  • 1 tin of chick peas (drained)
  • 3 eggs
  • 4 tablespoons of granulated sugar
  • 1 teaspoon gluten free baking powder
  • 2.5 oz dried apricots 
  • 3 teaspoons almond essence
Method
  1. Put all ingredients into a blender and blend well.
  2. Grease and line a cake tin
  3. Pour mixture into oven Gas Mark 4 / 180C / 350F  (basically a moderate oven).
  4. Cook for between 35-40 minutes.
  5. Turn out to cool and dust with icing sugar.
This is how mine turned out: -
I have to be honest, although initially dubious it tasted lovely and no hint of a chickpea flavour (which was my biggest fear) - I also tried a few variations on this -I substituted the almond for chopped dried or glace cherries which was really lovely - sort of like a Bakewell Cake.  Then for another twist I added orange instead of almond essence and dark chocolate chips instead of fruit and that was good too.  However - my attempt at a banana and chocolate version was disgusting - some how the combination of bananas with the chickpea mix tasted bitter and burnt, so that one ended up in the bottom of the bin!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My second challenge was to find a lovely moist gluten free version of a Victoria sponge cake (second daughters favourite).  I'd tried a few but always found the texture to be just a little off - BUT - hurrah - I have found the perfect recipe and so have decided to share it with you.

Gluten Free Vanilla Sponge Cake/Fairy Cakes
  • 180g Caster Sugar
  • 2 medium eggs at room temperature
  • 1 teaspoon vanilla extract
  • 1 teaspoon glycerine
  • 175g Gluten free self raising flour
  • 1.5 teaspoons gluten free baking powder
  • 0.5 teaspoon Xanthan gum
  • 130ml sunflower oil
  • 130ml whole milk (I used semi-skimmed which worked out perfectly fine)
Method
  1. Place all ingredients into a mixing bowl and whisk until light and creamy.
  2. Place mixture into two sandwich greased and line tins (or fairy cake papers)
  3. Bake in oven 180C for 15-20 minutes if fairy cakes a little longer if sandwich tins.
  4. Turn out and cool
  5. Ice as it takes your fancy :)
I made mine in one deep tin and added some plain chocolate chips, topping it off with a vanilla butter cream icing.  It is the best gluten free sponge recipe so far, beautifully moist.



It keeps longer than the previous recipes I've tried and even though no butter was used has a lovely buttery flavour.

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My last challenge was to try and make gluten free brownies - as my daughter loves them and so far I have failed to find a good recipe for her.  So was very pleased to find a tiny card in with the gluten free baking powder with this recipe in it.

Gluten Free Brownies (makes 9 brownie slices)
  • 175g Dark chocolate chips
  • 190g unsalted butter, cut into small pieces
  • 150g light brown sugar
  • 3 medium eggs, beaten
  • 15g cocoa powder + 2 extra teaspoons for dusting
  • 1 teaspoon gluten free baking powder
  • 150g ground almonds
  • 1.5 teaspoons vanilla extract
  • 200g White chocolate chips
Method
  1. Preheat the oven to 170C/325F/Gas 3.
  2. Grease and line a deep 8" square tin.
  3. Put the dark chocolate chips and small pieces of butter into a bowl and melt together over a pan of simmering water.
  4. Once chocolate and butter melted remove from heat and add the sugar - then set aside to cool for about 10 minutes.
  5. Whisk the eggs to make a thick and glossy mixture, sift onto that the cocoa and baking powders, add the ground almonds, vanilla extract and 150g of the white chocolate chips and carefully mix well together (set the remaining white chocolate chips to one side for decorating the brownies).
  6. Pour the mixture into the baking tin and smooth over the top.
  7. Bake for about 40 minutes until risen and slightly crusty on the top (the mixture should be soft underneath).
  8. Leave to cool completely in the tin then remove and wrap and store for 24 hours.
  9. To serve; melt the remaining white chocolate pieces in a bowl over simmering water.
  10. Cut brownies into 9 portions and drizzle each slices with the white chocolate, leave to set for a few minutes and then dust lightly with the 2 teaspoons of cocoa powder.
This is a photo of my first brownie attempt - pretty damn good if you ask me :)
This brownie recipe is a real keeper - the brownies are really soft, moist and gooey - mmmmm!

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The last recipe I was excited about and thought share with you (although you may not thank me afterwards!) is my Windy Winter Soup (it's a slimming world recipe and it's official title is "Super Speed Soup" and very healthy but due to the number of beans and lentils may make you a wee bit windy so I have renamed it!)  I was worried when I saw the recipe and thought it may be a little bland, but it actually makes a wonderfully tasty, chunky, filling and warming winter soup, so good I will definitely be making this again and again.

It's dead easy to make: -

Winter Windy Soup
Add all of the following into a pan, cover with water & cook until veggies are soft but not mush ..
  • 1 can mixed bean salad
  • 1 can green lentils
  • 2 cans chopped tomatoes
  • 1 can baked beans
  • Handful of split lentils
  • 1 large onion, chopped
  • 4 large carrots, diced
  • 2 parsnips, diced
  • Pepper (any colour), chopped
  • 2 beef stock cubes
  • Mixed herbs
  • Salt and Pepper to taste.
Hope you like it :)

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Other than baking this week I have been helping the girls to dye their hair.  I don't know about you but sometimes jazzing up your hair can really lift a girls spirits, especially when your are a teenager and so physically limited by everything because of the damn evil Mr M.E.

Seeing as both girls don't go into school and so aren't tied down to their regulations we don't see why they can't experiment with their hair.  AND boy did we have some fun - at some point during the process I must have caught my glove because afterwards I had a very purple thumb!!

Tara has gone a bluey green and Tasha a lovely purple (using a bleach/shampoo combination to lighten their hair and then directions dye on top of that).  The results were awesome and the girls are very happy with their new looks :)  PLUS as directions hair dyes are cheap to buy it doesn't break the bank to do, win win if you ask me, here are photos of the results ...





x~X~x



Saturday, 18 January 2014

Happiness :)

I simply CAN'T contain my happiness which is frothing and bubbling away inside and needs an outlet - I KNOW - me HAPPY who'd have thunk it after such a tense week!

Why am I so happy?  It's simple really, I used my money from Christmas and ordered a hoody from the uber talented and exceptionally lovely Mama Chills Dizzyjam store and have been hopping from foot to foot excitedly since then watching the post and awaiting it's arrival  eagerly AND it arrived via Mr Posty this morning, after ripping it open I put it straight on and am now wearing it with pride plus being exceptionally irritating by showing it off to anyone and everyone who comes my way whilst grinning like the Cheshire Cat.

Funny how something so simple can really lift you though, don't you think?  This week has been tense and emotional for us - very difficult for the girls with low energy and high anxiety and I had been feeling quite flat up to now.  So something like this just picked me up and made me smile :)

Me wearing my hoody...

The beauty of this design is it conveys how I often feel, exhausted and drained of energy and quite literally running on empty, as are the many sufferers of M.E. and I am hoping by wearing it I will spark off conversations that I can then use as a tool to raise awareness about M.E. and get the word out there that it is real, not psychological but  a very cruel and debilitating physical illness which is more common than people think.

Our lovely ME Paediatric Consultant used the analogy of a cars fuel tank to explain fatigue to my daughters -  a normal person has a strong fuel tank, free of holes which they fill up overnight when they sleep and so it is full of fuel (energy) in the morning, it steadily reduces throughout the day and then when they sleep it refills again overnight.  If you have M.E. your fuel tank is full of holes to start with, so in the morning you wake up it is only half full because it has been leaking overnight due to the restless sleep which brings no refreshment in the morning and is a feature of M.E.  Then throughout the day more and more energy leaks out through the holes and so for every small exertion you make your energy or fuel is drained faster than it would a healthy person whilst also taking so much longer to refill, leaving you very often on empty before the end of the day and unable to do anything at all.  Then overnight when you sleep your fuel tank doesn't quite fill up as much as it did the previous night leaving you with less fuel for the next day and so on - which is why they crash and why pacing is so very important (although hard for a teen to do).  Pacing is when you acknowledge your energy limitations and only do what you know you are safe to do within your limits, to stop before you feel tired and rest.  Taking lots of intermittent rest periods is very important and not to push through the tiredness as it will only make you ill.  The girls are slowly learning their limitations and how to pace - it is very hard for them though as it means for example only seeing a friend for half an hour and then going to rest, instead of seeing them for a few hours at a time - but it works and so they are working at getting on top of it.

The fabulous Mama Chills shop link is: -

and if you are interested in learning more about the Charity Invest in ME take a look at their website, here's the link: -

Have a fabulous weekend peeps - I'm off to bake the girls a scrummy gluten free vanilla sponge cake, 
see you laters :)

x~X~x





Friday, 17 January 2014

Why?

Ugh!  Sometimes I want to scream and shout at the Universe, WHY? Why my children?

Life, it has to be said can be exceptionally unfair.  Caring and loving our chronically ill children is tough - not the physical doing of but the having to watch them going through the many bad days which are full of pain, anxiety, fatigue and frustration but being absolutely helpless in the ability to ease their suffering.  All I can do is let them know I am there, loving and supporting them as best I can whilst acknowledging their distress.   

There are times when trying to give basic motherly love is impossible - when just holding them close hurts their skin, the light hurts their eyes, food brings on extreme nausea and the slightest noise makes their head ring.  It has been known for me to not use the hoover for weeks at a time because they can't bear the noise it makes.

Yet, through all this I am astounded at their tenacity and humour, their ability to make the best of the hand life has dealt them.   They are a constant source of pride and inspiration, I find it is incredible how strong they are and the depth of maturity for their age and most of all the desire to still help others whilst suffering themselves.

As a child you just take for granted the fact that you can go to school, gain an education, go out and get up to mischief with your friends and just live life to the maximum without any worries - it's just what you do - isn't it?  

For our family and sadly many others I have since been in contact with children suffering from ME this isn't so.  

But it's not all doom and gloom here, fortunately our eldest has managed, with support, to do exceptionally well in her GCSE's, despite depression, anxiety and several day long stress induced migraines she kept on going, refusing to give up and has since started College.  Life isn't easy for her, she is still working out how to manage and still requires the support to continue - but I have no doubt that once again she will prevail and succeed in whatever she decides she wants to do.  However, I do worry about the pressure it is putting on her and have counselled her to possibly reduce her work load at the end of this year and take on less for her second year at College, to choose what she WANTS to do and not what she feels she OUGHT to do. Whatever she decides, we will back her 100%.

The news recently highlighted the increase in depression and anxiety in teens and that certainly seems to be true from what I have seen - the question I ask myself is why?  We have NEVER put pressure on our girls to achieve high targets at school - our philosophy is for them to do their best and that is all we ask.  To choose subjects they like and enjoy to study and not necessarily follow the path of academia - if you enjoy what you do you are most likely to succeed and want to do well in it.  So where is the pressure coming from?  I personally feel its a combination of the schools, government targets and the media fuelling competition to do well .  Perhaps if more attention was placed on the individual students and their needs, abilities and desires this wouldn't be such an issue.  I am not sure what the answer is, just me pondering and trying to work out the best route for my own girls I suppose.

As for my youngest two, they haven't been in mainstream school for a few years since they developed ME and so have missed out entirely on the day to day school life and friendships that you would normally take for granted. We wasted years trying to send them into school on a seriously reduced time-table which didn't work and then going to a school room in the Children's Hospital for just a few hours a week which again didn't work due to the brain fog and physical symptoms of the illness which left us floundering and the girls at home with no education.  BUT again - there is HOPE, we have been to a meeting this morning to meet the girls tutor (paid for by Medical Education) - who will come into our home twice a week to give one to one tuition to them.  This is brilliant news for us and for them  - we HOPE if all goes well over the next two and a half years the youngest will be stepped gradually from home tuition into Hospital Schoolroom and then into school and heavily reduced time-table to eventually gain her Maths and English GCSE's.  For middle child it's far more complicated - medical education funding cuts off when she reaches 16 in July - so after that we don't know and are currently looking into funding to be able to continue her home tuition from then onwards.

Another big issue for all girls is anxiety and panic attacks - Tasha wrote brilliantly in her blog 
how this affects her and yet no matter what all 3 girls continue to try to beat the anxiety.  We have a fabulous CAMHS team too who are supporting and helping us with that and my hopes that in the future anxiety and panic will be in their past having been shown how to address it, face it and control it.

Despite everything we have been through over the past 4 years, I am optimistic for the future.  We have come this far and achieved so much.  I am immensely proud of my children they have made the best of their situation and it has brought out a very artistic and creative side of them which may otherwise have been squashed if they were living "normal" lives.  Whatever the future holds, I believe it will promising.




x~X~x







Wednesday, 15 January 2014

Teenagers & dogs!

Our eldest child is a night owl and frequently up in the wee small hours when the rest of us are tucked up in bed fast asleep.  This all leads to us then banging on her bedroom door in a morning in a bid to get her up and out of bed every 15 minutes or so which is a pain in the proverbial and also wakes up my other two daughters, who struggle to get the restful sleep they need.

Then I saw this (floating about on a post on Facebook again) and thought THANK YOU, I bet whoever invented this was a parent of teenagers too!  It's an alarm clock called Clocky that sits tamely on your bedside table until it's time for the alarm to go off - and then it jumps off the table and runs around your room until you get out of bed to switch it off - how excellent is that?!  If we decide to buy this for her I think I would have to set up a video camera to record her on the first morning she uses it - it would be priceless viewing :)

This is Clocky...

I've had Loki at the vets for his final post-op check and he has been given the all clear (a huge relief as he had a swollen and inflamed wound last week after catching it) thankfully the anti-inflammatory medicine has worked it's magic and his wound has healed beautifully.  He now has full permission to tear about like a banshee and we have finally, after 10 days been able to open the gate onto the lawn and Loki has thoroughly enjoyed pouncing on both Taylor and Skyla biting and pulling their tails to encourage them to chase him and so now I have three damp and muddy pawed dogs lying exhausted, curled up on the sofa together after exploring all the borders and lawn areas again.  Plus, little Loki living up to his name had brought in lumps of moss which had fallen from the roof tiles in the wind and carried them lovingly upstairs into my bedroom to rag all over the floor creating a lovely damp smelling mossy floor covering for me - thank you for that puppy dog!

We've also had more good news via the Hospital School for Tasha and Tara - they now have a home tutor allocated for them.  So, off with The Dave on Friday to meet her at the Hospital and arrange times, days and goals etc  before Tasha and Tara will be introduced to her and then all being well we can start with tuition next week. Another little positive note for my jar :)

My baby girl will be 14 in a few weeks time and when I asked what sort of birthday cake would she like she replied a Capuchin Monkey Cake - erm, unexpected - I anticipated an answer of chocolate or vanilla but not a request to make a monkey cake resembling a bald alien - but there you go.  It would seem that this breed of monkey has taken her fancy and she is desperate for a pet one to call Ditzy and train it to do tricks, she even sent me a text of a breeders details with baby monkeys for sale - don't worry - the answer was a resounding NO (just like her previous requests for large pet spiders as she thinks all spiders are adorable *shudders*).  

However, how on earth do I create a cake to look like this monkey ...

The evil side of me is thinking of creating something entirely different - The Dave was browsing the internet the other day and showed me a cake he had seen which depicts the Bristol Stool Chart - not your usual cake I admit, but we are more than familiar with it due to her IBS.  Not that she will thank you for sharing that with you!

What do you think, should we offer her this cake instead?...

Mind you, not sure she would (or her guests for that matter) be too keen to eat it, so I suppose it's back to the drawing board to work out how to make a good Capuchin monkey cake (no pressure!).  

As a HUGE supporter of the fabulous charity Invest in ME we are (as a family) joining the teams of other supporters around the country in doing a Walk for ME during ME Awareness week in May (I'll talk more about that nearer the time).  Anyway - to help raise awareness and support for our cause I ordered 5 t-shirts and 5 ME Ribbon pin badges for us to wear to help promote the cause AND THEY HAVE ARRIVED! So obviously I have photographed them to share with you and will start wearing my pin badge now - but the t-shirt will have to wait until warmer weather arrives - I'm nesh and so the thought of wearing any less than about 4 jumpers along with thermal socks, tops and scarves right now makes me shudder!

Our t-shirts and pin badges look like this..


Today and tomorrow I will be experimenting cooking with fish - which terrifies me, I have cooked meat - not a problem, but fish is so tricksey - it overcooks so easily and so I am guilty of giving it a wide berth and avoiding cooking it at all costs BUT NOT TONIGHT - I am going to face my fear and attempt healthy fish and chips and have pieces of smoked cod to cook - eeeek! Then tomorrow will play about with haddock, smoked haddock and cod to make individual healthy fish pies - so wish me luck and hope it doesn't all go pear shaped!

I'll leave you with the images of our 3 mental snoring dogs as they sleep off their mischief and hogging all the sofa (so I have to type with my backside perched half off one corner at one end) tsk!

Taylor trying to emulate a doughnut ...

Skyla stretched out for maximum sofa coverage...


and lastly little Loki looking like butter wouldn't melt...

x~X~x







Monday, 13 January 2014

Happiness & Positivity Jars

Last night whilst I lay in bed waiting for sleep to take me and listening to my husband grunt and snore many thoughts flitted in and out of my head.  One of them was how normal our abnormal life has become and wondering how we are perceived by people from outside our tight inner circle.  It's tough sometimes living with illnesses that are "invisible" and it has to be said there are days when you just can't bear the thought of explaining why the girls aren't in school and can't go to parties, family gatherings, holidays, travel long journeys (you get the gist).  But I also feel that no matter how bad things get the silver lining of all we have and are going through is that it has bound us all closer together than ever before.  If the girls had led a "normal" teenage life we most likely would only see them briefly as we pass on the stairs or hallway as they come and go to school, clubs, social gatherings etc but instead we have been pushed together through intensely difficult times, emotions have boiled over, tears and angry words have been spoken, grief expressed and through it all we have developed a closeness that we value and hold dear.  We may sometimes appear strange when people come into see us as somehow we have developed our own way of speaking to each other with deliberately misspoken words (a legacy from my mother!), in-jokes, nicknames and constant teasing banter - the girls call their dad The Dave and I go by almost any name under the sun - but none of it rude or malicious - the girls have developed a great sense of humour, insight and maturity through their experiences which perhaps would not have occurred if their life had gone down the normal healthy route.

HOWEVER there are times when the girls struggle, especially with their mood - anxiety and depression sadly an issue for all three, so when I saw a post floating about Facebook about filling a jar full of your happy thoughts and memories throughout the year for 2014 and then opening it to read and remember at the end of the year I thought FABULOUS (by the way, in our family you HAVE to sing the word FABULOUS, it's a word to be celebrated whenever it is used), just a note for you to remember!

So, I spoke to the girls about it and although all three thought it a great idea only Tasha wanted to join me in doing it.  We have two jars, one each - Tasha's is the Jar of Happiness and mine the Jar of Positivity.  Tasha is slowly bit by bit decorating them as and when energy allows and we are filling them with teeny tiny pieces of coloured paper to keep it bright, then, whenever we are feeling low we are going to open the jars and read everything that is happy and positive to remind us that it's a blip - better days are ahead.

Our jars, not yet fully decorated (but note we DO already have pieces of paper in them and it's only been 13 days!) ...

We're also a household full of foodies and so we find baking is another way to hit the happy button and make us smile - thankfully I LOVE baking but it can be a challenge as we have to accommodate gluten free and sugar free diets.  Some recipes can easily be converted using gluten free flour and xylitol as a sugar replacement - but others don't work out so well, so we have some successes and also many disasters - but hey, it's a learning curve!  One recipe that is tried and tested and works well gluten and sugar free is my chocolate chip cookies - the girls love them and can be guaranteed to raise a smile, admitedly the recipe for no restrictions is nicest, the gluten free version are also good.  (I'll put both gluten/sugar free recipe up for you and the normal recipe for peeps who have no diet restrictions if you fancy trying them).  


Ingredients (for normal version)
Makes 14-16 cookies
  • 125g unsalted butter
  • 100g golden caster sugar
  • 75g soft light brown sugar
  • 1 medium egg, lightly beaten
  • 2 teaspoons vanilla extract
  • 150g plain flour
  • 1/2 teaspoon baking powder
  • Pinch of salt
  • 100g dark chocolate chips
Method
  1. Preheat the oven to 190C or Gas 5 and line 2 baking sheets with baking parchment.
  2. Gently melt the butter in a small saucepan.
  3. Put both sugars in a mixing bowl and pour the melted butter over them and combine well by beating with a wooden spoon.
  4. Beat in the egg and vanilla extract.
  5. Sift the flour, baking powder and salt together and then add to the mixture stirring well.
  6. Then add the chocolate chips.
  7. Dot heaped dessert spoonfuls of the mixture onto the baking tray leaving plenty of room around them as the dough spreads out during cooking.
  8. Bake for 8-10 minutes until they are pale and golden brown.
  9. Leave to cool on the baking tray for 5 minutes to firm up before carefully using a spatula to transfer onto a cooling wire.
  10. Eat and enjoy! 


To make a Gluten, sugar free version - substitute the flour for the Gluten Free Plain Flour and add just less than a quarter of a teaspoon of Xanthan Gum (helps stop biscuits becoming too crumbly, add too much and they go all stretchy and sticky and inedible!).  Also replace the caster and brown sugar for Xylitol.  They do work but are slightly less chewing and unctuous as the normal version.

Today is also our first weigh day for me and The Dave *imagine us both doing a victory happy dance* in our first week of sensible eating, reduced alcohol and chocolate consumption we have both lost some weight - something else to go in my jar!!  

Oh, and you know I mentioned the purple hair (hence the name) - I had Tasha re-dye it for me yesterday - the box said purple, the shade looked purple BUT my hair looks black - although admittedly it has a purple glow in the light!  I was perturbed as had never considered having purple black hair, but you know what - I really quite like it - so there you go!

Anyway - the point I was trying to get to was, no matter how dark and bleak life can be, there will always be sunshine ahead, look closely and I am certain a silver lining can be found somewhere.
Stay happy and positive when ever possible folks!
x~X~x




Sunday, 12 January 2014

Meet the Gang :)

Who is Crazy Purple Mama? I hear you ask - well I'm an overweight mum in mid-forties, with purple hair and a little off centre (so they say, who they are is anyone's guess, but there you go).

What do I like to do - well I love baking so will no doubt be sharing my successes and disasters with you - especially as I have various dietary requirements within the family of veggie and gluten, sugar free and low fat!  I adore our dogs - they are a constant source of amusement and comfort, we all pretty much have odd socks now due to all 3 dogs having a thing for chewing out the toes! Watching films, listening to music, taking walks, watching the sea and being with my family.  I am also a huge supporter and like to raise funds for a charity called Invest in ME.

My hubby is Dave who I have known since I was 4 years old, he was the year above me with my sister at primary school and incidentally had the hots for her back then too!  Anyhow, we married in '93 and he has been my greatest supporter and friend ever since.  I have a dog called Taylor (a Border Terrier) who I adore and is the most cuddly, gentle boy you could ever meet.

This is me with my hubby and Taylor below


Earlier I mentioned I was a mum - I have three fabulous daughters who I'll introduce you to now.

Keisha is our eldest and at College studying for her A-levels, she suffers with anxiety, depression and autistic traits among other things, which makes life difficult for her at times.  She has fought hard, despite her difficulties, to gain brilliant GCSE results and move forward into College.  She is vegetarian, loves animals and is incredibly sharp and witty.  She asked me to dread her hair a year ago (so many you tube tutorials were watched) and over a period of 4 days I painstakingly turned her beautiful long brown hair into 43 dreads! She loves piercings, as you can see and is planning on having tattoos when she is 18 too.   Frighteningly she will be getting her provisional driving licence in a few months and be out on the roads of Derby - so if you are in the area - be warned! p.s. Keisha wants me to point out that she has "bitchin' eyebrows!"


Tasha is the middle child, she is a chameleon, always changing the colour of her hair, is incredibly artistic and has a passion for photography.  She has a tattoo kit and is self-taught via you tube tutorials and likes to spend her time creating tattoos on synthetic skin.  Sadly she became ill with ME two years ago after contracting viral meningitis.  Yet despite all her troubles, asthma, IBS, hypermobility, Orthostatic Intolerance, M.E., depression, anxiety and chronic pain, she tries her absolute best to make the most of what she can. She has a wicked sense of humour and is very caring soul.  She has her own puppy - Loki, who is 6 months old and a Pug/Jack Russell Cross.  Poor old Loki only had has balls off last week and so isn't quite the boy he used to be!


Tara, my youngest is hilarious, a fabulous mimic, comic, singer and all round entertainer.  She loves to make videos and photography.  Sadly she developed M.E. at the tender age of 10 years and also has hypermobility, orthostatic intolerance, and IBS  and has been home and schooled via hospital ever since. Despite that she has a wonderful group of friends and enjoys entertaining us all.  She also has her own dog - Skyla Minx, who is a wonderful insecure Border Terrier bitch.


I'll be baking and trying out some new recipes on the guinea pigs that are my family this week - so no doubt I'll catch up with you then and let you know how they worked out.