Saturday, 21 October 2017

Rucksack Of Grief

Today marks two years since we lost Michele, my sister, so how does it feel?  Well no less painful than it was that day 21st October 2015 when she was taken from us. But I have learnt many things, that grief is an individual journey, one that we must travel alone, because what works for one doesn't necessarily work for another and no journey is wrong or right, just right for the one walking it.
So from my own path I can tell you that time doesn't heal and things don't get better, how could things possibly ever get better when the people you love the most have gone?  As the realization of that began to creep in I likened it to when I was first diagnosed with the illness M.E & stripped of everything that I thought made me who I was, job, social life, identity & place in the world, that too was an all consuming grief and that's why this feels similar. when we lost Michele and also my brother Michael 5 months beforehand I felt like an abandoned toddler in the middle of a high-street, Samson with his hair cut off,  Superman breathing in  Kryptonite. In fact that's how it still feels.


I don't really know what i'm doing here or what my point and purpose is any more?  Having a big brother and sister kinda gives you the strength to climb mountains, they allowed me to be the annoying little sister I was.


There's a humour, a banter, conversations and memories you can only share with a sibling, and since losing them both I feel lost & frightened, like a small rowing boat gone adrift, and despite decades of meditation my mind often feels the same as I picture the little boat drifting aimlessly, bobbing about in my head, crashing into the rocks of emotion jutting out, guilt, anger, sadness, confusion, Sure I can tame it for  an hour or two, but somehow grief always  takes over the reigns of control again and I find myself blubbing at least once a day?  

The other thing I've come to realize is there's no escaping this monster grief. I'm sure it would help a little to be in good health so that at least I could pretend I was running away from it for a short while, hop on a plane, train, automobile, or even just use my legs to run the emotional pain out of my body  to make room for  the next wave, but grief is here to stay, it's like wearing a rucksack that you can't shake  off, wherever  you go it goes too & It's hard to sleep or do anything with a rucksack of grief on your back let me tell you. It unbalances you most days until you topple over, but  when it does you just have to scramble back up on your feet and keep putting one foot in front of the other, if you can't do it for yourself  then do it for your loved ones, You know it's what they would want? 
I'm doing all the things I'm supposed to be doing & that I've always tried to do, you know?  breathe in and out,  eat, try to serve others and be a decent human being, but that my friends is about as far as I've got, but that's okay. 


I still have my sisters number on my phone & desperately want to call her in the hope she'll answer, I want to hear her laugh & call me Scrappydoo,  see her cheeky smile,  tell me about what she's been doing at work and at church,  watch her eat cake & Snicker bars and drink frothy coffee, I want to hold her hand, but I can't,  it's all in the rucksack of grief that I have to  somehow get use to wearing from now on. So I can only hope that while I know I'll never grow to love it like a pair of Pyjamas or woolly socks in Winter I will one day get used to wearing it?  
Today my thoughts are with all the family including Micheles church family and friends, and all those who have lost somebody, 
I will of course eat cake, she'd expect nothing less.                                      



                                           Stay Blessed XXX

Friday, 18 August 2017

It's a Mare They're Not Watford?

So a leaflet just dropped through the letterbox with  "George for Mayor, Let's Work Together" emblazoned on the front. My first thought was.........

But it was accompanied with a picture, turns out it wasn't the George I was thinking of after all, but someone called George Jabbour. So he was born in Watford right?  Has Watford running through his blood? Loves the town and its people with a passion that only a Watfordian can and that's why we know he'll do the best for us huh?  

Er...no, He came to the Uk 13 yrs ago and has a degree in Engineering from Damascus University though?

So....where's the  connection to Watford?

He did start up a small business to help governments with their finances?

Yep, but what about Watford? 

He  become a British Citizen in 2011 because they accepted his a highly skilled migrant?

Yes, well done him an all that, but Watford?

He campaigned for Scotland to stay in the UK?

Yeah but what about........oh never mind.

For me it's simple, I believe the best & only  person for the job of Watford Mayor is someone that was  born and bred in Watford, isn't that just common sense?  
                       

The politicians promote their candidates like a business , there's no geniune love, concern or passion for Watford and its people, it's just a calculated, manipulating cold hard sell to get a position and I for one aren't fooled.

Look at  Dorothy Thornhill?....not literally, wouldn't want anyone losing their breakfast, but if ever there was a fake mayor spouting fake love for Watford then look no further. It's all photo opportunities and typical self trumpet blowing, and lets not forget a town centre, market & community ripped apart. Despite warnings about what would happen with the Market the move  went ahead anyway and then she tried to blame its failure on the public? 

 As for the  Harlequin/Intu, units became empty because the rents were too high and stores couldn't survive, so how on earth is making it even bigger going to solve the problem? Once it opens and the novelty wears off they'll just be an even bigger monstrosity with even more empty units, but hey who cares when there's deals to be done & palms to be greased, for the good of Watford my arse. 

The best person to love Watford & have its best interest at heart is a Watfordian, it's like a Childminder, they might love looking after another persons kid everyday, but they're never going to love it like they love their own? 

So if it's not too much to ask can we have  a Watford Mayor that actually comes from Watford please? 



Failing that I'll settle for George,...yes, the pink one, or even Bungle & Zippy, there's no documented evidence to say they weren't born in Watford & I trust they'd do a better job. Cheers.

                                     Back Before Elvis                                    
                                  Til Then Stay Blessed x   
    
                                            

Thursday, 27 July 2017

M.E? THAT'S NOT A CHOICE.

I'm pretty exasperated right now at the ignorance, insensitivity  and what I consider offensive attitude of my local GP practice, not that I'm surprised, just mega disappointed that they still evidently have no real understanding about Myalgic Encephalomyelitis (M.E). The anger isn't just for myself  it's never been about me, it's about M.E and the constant ignorance, arrogance, and prejudice that still sadly  surrounds it, and that thousands suffering with have to face on a daily basis. Just when you think progress is being made in terms of awareness and real understanding?.....



Today a  letter  dropped through the door from my local surgery:

"Dear *******  
******* Surgery  are pleased to announce the introduction of a new free service to patients who would like help & support to become more active.

We have a Get Active specialist available to work with adults who are currently inactive and would like to find out more about opportunities within the borough  to become  more active to improve health and wellbeing.

All patients will undergo a 1-2-1 consultation to look at ways of becoming more active, understand any concerns or challenges you have  about  being  more active and to help you find suitable opportunities in your local area. Support and motivation can be provided for a 12 month period to help you become and stay more active.

There is a variety of activities available, some  of which are free of charge, and we will help you find the best solution for you.

If you would like to take part please contact me on the number below to make an appointment for you to take part in the scheme"

Firstly, it's only taken them 27yrs to offer me support...& this is it? Secondly there is nothing  they could offer me now that I haven't tried  over the years in the quest to get better from  M.E. Being inactive due to a chronic illness  isn't a goddam choice, I don't need help to be active, I don't need help to get motivated, I'm as active as anyone possibly can be with a condition that's primary symptom is Exhaustion...and if I attempted to list the rest of the symptoms we'd be in danger of turning this into a novel.

I don't need motivation to  drag my ill and weary ass out of bed, get dressed, clean my teeth, comb my hair and put a bit of lippy on, I  attempt that every  single morning  in a desperate bid to retain some dignity & identity. Having lost everything else due to M.E this is all that I have left.  I'm sure for the healthy among you, morning grooming is done on automatic without thought before heading out the door to start your day?  But some days a little grooming is all I  can do before  collapsing on top of the bed again, fuel tank empty, energy gone. That's how it is when you have M.E ......THAT'S NOT A CHOICE?    To have spent up all your energy before the day has even begun is frustrating beyond words, incredibly sad and extremely soul destroying, it has nothing to do with choosing to be inactive, and everything to do with an illness that steals every last drop of energy and breath from you constantly and without warning.
Having to miss loved ones weddings, funerals &  celebrations? THAT'S NOT A CHOICE. Not being able to hang out with friends as they go off to party at the weekend?  THAT'S NOT A CHOICE.  Choking when I eat  due to Exhaustion and unsafe swallow? THAT'S NOT A CHOICE, and no motivational chat and free membership to the gym is going to change that? 

I can't help wondering  if they've included Cancer patients?  MS patients? Crohns disease patients etc when sending out this letter ? I very much doubt it?  How are they determining which  patients to label  as Inactive?  While the scheme is voluntary, how incredibly insensitive to send it out to those with illness, suggesting that they are inactive through choice, therefore lazy? 

"Fred Bloggs is paralyzed from the neck down?"
"Yep, he's inactive, better send him a letter, bit of facial yoga and a good pep talk should get him going?"

When it comes to inappropriateness regarding M.E there's always this  complacency and acceptance that has gone on for far too many decades .

Those who have followed  from my days with Action For ME to a Columnist at the Watford Observer to present day with  Lets Do It For ME! who work in support of Charity Invest In ME Research   will know that I have spent  those decades and precious energy along with many others  raising awareness, educating and battling to change mindsets . I'm not some dainty flower that is blown over at the slightest breeze, I've had to adopt rhino skin over the years, not only to cope with this debilitating and chronic illness but also the endless medical & media ignorance, which to some degree has been a lot harder to swallow. 



The letter I received today made my heart sink because it shows that although we've come a long way there is still a long way to go and the battle is far from over. While I'd rather it not be the case... to be part of this battle for future generations is my choice, however, any inactivity due to having M.E? THAT'S NOT A CHOICE.

                                Til Next Time, Stay Blessed  
                                    Back Before Elvis x
                                       
                               

Friday, 10 March 2017

Just Swell

As some of you may recall at the beginning of January I purchased a piece of exercise equipment called the "Wondercore Smart" in yet another attempt to look more like  Beyonce than Blobby in terms of buffness?  Erm….lets just say that once again things haven’t gone according  to plan, even though no Cheesecake has entered the building and no sneaky Doughnut  passed these lips, so what's going on? 

Turns out, exercise is sending my body into trauma....yes really.   I'm not in the best of health tis true, but why would a totally healthy person have similar problems?  Well since I started my research I discovered that It can happen for a number of reasons:

Eating and drinking too close to exercising, or eating  certain foods that take a long time to digest or aggravate the stomach lining.

While in exercise mode, blood is moved away from the intestines to the body part you're working on, this impairs the digestive process and It can highlight or/and exacerbate gastro conditions such as Irritable bowel. 


You can also swell  due to a  lack of salt in the blood, If you've been drinking alot of water and sweating out lots of salt, the body can interpret this as trauma and hold on to the fluid which will then show itself  in the belly area. 

My body often swells without exercise, and that's due to a condition called Fibromyalgia  anything that aggravates Fibromyalgia  can traumatize the system and make it ten times worse. While there's no visual evidence of swelling to the limbs, the insides of both my arms and legs feel swollen as though  they've been stung by a swarm of Wasps.
                                        


My belly however has swollen to uncomfortable proportions and all in all I'm feeling like the Michelin man, so after persevering for  six weeks 
I've sadly once again had to stop exercising.

With Conditions such as M.EFibromyalgia it's always going to be a catch 22 situation. If you exercise it will strengthen the muscles and organs in the long run but it exacerbates the symptoms and makes you feel a whole lot worse. But if you don't exercise, the organs and muscles become weaker and it exacerbates the symptoms.... making you feel a whole lot worse. But its been my choice over the years to keep  attempting to exercise despite the same old frustrating ending.


Once I'm over this latest episode and  my body has hopefully recovered to some degree, I will definitely be trying again to find a regime it can handle, so i'll keep you posted.

I finally purchased a Ninja Master Prep professional chopper three piece set, try saying that without your teeth in?  Apart from the cool name of course, It's so easy to use that I've been whipping up Dhal, Pate and soups already. 


At only £49.99 it's a real steal. I chose the black, but it also comes in Red or cream and you can also purchase the pieces individually.  From a site called Ninja Kitchen that has tips, tricks and recipes to help you along. 

Next up is Osmo, an award winning Childrens App that connects the real world with the digital, allowing the child to play in both.  The results are certainly exciting.  The starter kit is £75 



Lastly, bringing back the Retro with this brushed copper phone, also available in mustard, red, duck blue and all those other 70's tones. There's a twenty pound price drop on the copper one right now, meaning you can get it for just £44,95. The other colours have been dropped by ten pound and come in at £33. Available from Cuckooland
Just swell, the same applies to the interest and research being funded by Invest In ME Research.
                                            
Three new PhD students started in September 2016 in Norwich Research Park and began the ME studies. The Rituximab trial planning has began.
Good research is continuing at UCL and International collaboration is going on.

The 7th International Biomedical Research Colloquium in London has representatives from around the world from major institutions.
We also have NIH, CDC and Norwegian Directorate for health attending, with invitations sent out to the Canadian Health minister/research department and the Dutch Health Council.

Invest in ME Research aim to keep Medical Research studentships going as these turned out to be very successful in many ways. 


We will also have an interesting exhibition table at the conference from a sponser who has been looking at one of the big problems with ME, the isolation that comes with this disease.
And for those who want to support our cause to create a Centre of Excellence for ME then join our C-Selfie campaign. Make the C for Centre sign using your right hand. Examples and those contributing are here.  C-Selfie Campaign

Jon Campling of Harry Potter fame was our first celebrity, we hope there will be more who come to support this. Also Ian Gibsons book, Science, Politics.....and ME, will soon be available.


Authors Dr Ian Gibson and Elaine Sherriffs have with limited resources a book that will add to everyone's knowledge about ME.
This has taken  a while to decide on publishing but is now completes and will be a very useful reference for the way ME has been treated.
Everyone, take care of yourself, and of those you love.

Fat, is the word we're looking at today and it hasn't always been seen as a bad thing. In times where food was scarcer a hungry skinny man was seen as dangerous,whereas a large full bellied man was thought to be content and therefore more trustworthy . Originating from  Old English Faett, meaning fat, plump, obese,  Dutch: Vet (fat) German: Feist (fat) First known use, in biblical times.  
There's a lovely quote from 1939 that i'm sure many of us can relate to, where George Orwell wrote: I am fat, but I'm thin inside. Has it ever struck you that there's a thin man inside every fat man, just as they say there's a statue inside every block of stone?" 
It's hard to describe the genre of Sheffield Duo, Conor Seppy Merrison & Bethany Holland Aka: Post Collide. Their sound has a mix of flavours, Rnb, Soul, Chillout, Hiphop etc, either way they're back with their scorching new single: Cool Down. Plus another "Hard Way" out on the 17th March, there's no stopping this duo. Not only a BBC 1Xtra fave, they've supported Damage on tour and are set to support Leah Mcfall on her Manchester and Brighton dates this year,  they're hot, hip & happening and write hooks hard to get out of your head, and this track is no different, One  listen and you're gonna wanna "Cool down, Cool down, Cool down" Available now on Itunes ,  Google Play 

One definitely to watch is Plested, this singer/songwriter from Hertfordshire  certainly has an impressive musical CV, having already worked with many artists including Emeli Sande , Zayn Malik & Naughty Boy.  He has a distinctive vocal and rasp that's extremely easy to listen to, so it's exciting to hear that he is now  busy working on his own debut album and promises new music very soon.

             
                  
Well that's the last Column from me. Thanks to Invest In ME Research, Thanks to you for reading, take care, stay blessed. 
                      Back Before Elvis X
                               

Friday, 17 February 2017

The Power Of Love

Once upon a time when I was  six years old I had this delusion that one day a prince would come galloping down our Council estate on a white charger, scoop me up onto the back of his horse and ride off into the sunset. We'd get married and have four kids, Lazzard, Icarus, Rainbow & Lyric and live happily ever after.....yes okay, I had an extremely vivid imagination for a little girl......
However, at the age of eleven my parents divorced and I was hit with that great big wrecking ball of reality and have remained single ever since. That's not to say I don't believe in Love, I just prefer to have love for everyone and everything rather than the one to one scenario. 



Granted there are many difficult people  in the world, and you might not necessarily like all of them, but you can still have love for them because they can teach you how not to be.

Love is a very powerful thing and while I know I run the risk of being carted off by the men in whites coats, I still wanted to share this with you. Some of you may recall that last summer I took up Sahaja Yoga Meditation?  Well as all of our houseplants were on their last gasp, I decided there was nothing to lose by trying a little experiment on them by  using some of the techniques I'd learnt in class, which involved a bit of chanting, bit of energy clearing & finishing off with telling  each plant that I  loved it.
The results have been unbelievable, My aloe vera is now thriving and producing  baby aloe vera shoots right, left and centre, I've even had to buy some new pots to house them all.  

The two orchids, bloomless, yellowing and dying are now suddenly flourishing with an abundance of  roots dancing through the surface. 
Without knowing about my experiment (although she will now) my mother has even commented about the remarkable sudden change in our houseplants. 
The powerful impact that love can have on a physical level must surely be a reminder, not only to be kinder to ourselves, and to nature,  but to also tell those around us on a daily that we love them?  

Some things are not only smart by name they're actually genius, so let me introduce the Kasa Smart LED bulbs with a life expectancy of 15 years . Apart from downloading an App to your smartphone which is pretty standard these days, there's no special set up or expensive hubs needed. You can choose from 16 million colours...yes you heard right, and the best bit is the security that using these bulbs can bring. 

By using the timer you're able to  control the lighting all over your home when you go on holiday or if you're just out for the night. Plenty of other features too which you can check out for yourself at FIREBOX    A single bulb  is £ 29.99 or you can get two for just under £40 & well worth it I think you'll agree?  

No explanation really needed with this next one? It's  Cereal  Killer bowls, & what a great way to start your morning.  Hand painted and available at Etsy from SarahsCraftsPlates   £7.50
 Causing a bit of a storm are these cute cat face watches. There are seven coloured leather straps to choose from & at a silly  £6.55 from LightInTheBox

And now on to............
Years ago research found a biological basis for the two most intense emotions, finding love and hate were intimately linked. 

Indeed! Hate is indelibly linked to power, as seen in establishment policies towards ME that protect those imposing disastrous, incomprehensively
cruel policies and treatments on ME patients just to maintain the reins of power. 

Contrast the love shown by carers, parents and children  to family members/friends suffering from ME with proxy hate dispensed by ideologically driven policies of government/DWP against vulnerable disabled people, or the clumsiness and rigidity of social services when confronted with ME, where love seems like a four letter word. 
As Jimi Hendrix said:
"When the power of love overcomes the love of power, the world will know peace"

The charity has seen so many examples over the years of carers/parents/children giving up their lives to look after loved ones and provide support not otherwise available, unquestioning, resolute love, fighting against all that society throws at it. 

Not unique to ME families, though the fickle mainstream media rarely gives any publicity to the suffering in the world of ME     
Children especially, face serious challenges and dramatic effects it has on their health and social visibility. 

Lili's poignant story by her mother Diane contrasts the power of love in defending or supporting a child. As do the stories of Ryan, Alison Hunter or Karina    

People with ME and their carers may find it difficult to celebrate Valentines Day, often only social media allowing some contact. Yet some ME patients do not even know what social media is, having been severely ill and in the dark for years. These patients are not forgotten though, as more able carers/friends keep them in their minds and virtual events are organised. The community spirit among ME patients is more important and real than any commercial Valentines Day. In the words of civil rights activist Maya Angelou-If you only have one smile in you, give it to the people you love.  




Keeping on the love theme  its origins stem from what's known as Indo Europeon and includes English, German, Dutch, Frisian & Scandinavian languages. In the old English language it was known as "Lufu" which was thought to have come from the old German word "Luba"  the old Frisian word "Luve", Gothic "Lubo" & very early forms in the scandinavian language  "Lof" 




The word is recorded in English writings from the 8th Century......... when I guess someone used it to say  "I love Cheesecake".......maybe? 
Lights off, candles on and the sound of  folk and roots duo Oka Vanga aka William Cox & Angela Meyer float across the room. I'm instantly lost within the mystical music and vocals of  the Wicken Tree, which is the first track off their new album "Dance Of The Copper Trail"

 It follows on from "Pilgrim" their award winning debut Instrumental album in 2014 & their 2015 EP release "Tales From Eyam" which after much persuasion from Wil, saw Angela introducing her alluring vocals. 


The same has to be said for this new album Co- produced by Mark Tucker & Angela Meyer & worthy of a mention. If you're lucky, you'll often find two or three stand out tracks on an album, I was on my sixth when I gave up.  Ashes To The Wind,  The Devils Tide, My Sweet Guitar...and they  kept on coming.

its a great album start to finish. From  guitar to mandolin to  double bass (Oliver Copeland)  and a fiddle (Patsy Reid) to die for.  When it comes to musicianship this is a masterclass and one you'll want to be downloading. It's released on the  31st March but available for Pre Order from their website Oka Vanga

Next up, a band I'm a big fan of,  and not just because they hail from my hometown of Watford. If you haven't heard of the Turner Brothers then you must be living on Planet Zog? 
These guys have played some  impressive gigs and continue to keep soaring, but it's really no surprising with their damn fine catchy Toonage. 

They are playing Boomtown held in ChinaTown on 10th-13th August.
But If you can't wait that long they will be at The Horns in Watford Hertfordshire on 23rd February.  
Fronted by brothers Anthony & Patrick Turner, the main fabric of their music may be Ska, but it has  elements of many other genres woven within & it sure makes for an exciting sound. I defy anyone to sit still when the Turner Brothers are in Town. More info on their Website

          Well that's it for another fortnight.
    See you back here 3rd March. Til Then, 
       Stay Blessed. Back Before Elvis.  X 


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