Tuesday, 7 November 2017

M.E It's Not Just For Christmas



I thought I'd write a little  article about the reasoning  behind my latest  merchandise design:
Limited Edition until 20th November, Men & Womens. International delivery " M.E! It's Not Just For Christmas" All profit from sales donated to Charity  Invest In ME Research Available from my DizzyJam store.


It's not just Christmas that's difficult for someone with M.E, but there is often added pressure from family and friends with their expectations when it comes to the annual get together:

" Well surely you can make an effort just for one day, come on, you"ll be fine?"

"Auntie flo will be so disappointed  if you don't turn up, can't you do it for her?"

"Stop being selfish and thinking of yourself, it's Christmas, think of someone else for a change?"

" Yes I know you've got M.E but what's that got to do with us holding the celebrations at your house this year, you've got  more room and you've got more time to do stuff because you don't work?"  

"If  it's too much trouble to come & spend one day for the sake of  your family, then don't bother  (slams phone down) ?"

Are any of these sounding familiar?   

To those family members and  friends let me flip the tables and ask why you haven't yet educated yourselves on the subject of M.E despite the illness being around for decades?  Despite professing to love &  care about us?  
Let me firstly apologize for the inconvenience our illness  may cause you, but the thing is M.E isn't just for one day, it's a chronic complex physical illness that we have 365 days a year , no different to Ms,  heart disease, Asthma, Arthritis, Epilepsy etc . Despite the misconceptions M.E isn't a choice.  

There are those that think M.E sufferers are selective in what they do and don't do?.........Too bloody right.

When the illness's primary symptom is exhaustion and you have to fraction in to your every day  whether you'll have enough energy to get washed, dressed , eat and even take a crap, upsetting Uncle Arthur for not turning up to the opening of  a new pair of socks has to fall somewhat down the list of priorities. M.E isn't a choice, it can't just be switched on and off to suit.

Oh the joy if it could?  We'd be switching it off so that we could go  to work, that place we'd spent  half our lives, a job we loved, surrounded by the  banter, and laughter of our colleagues, we'd be switching it off so that we could  attend the funerals of our family and friends and say goodbye and share memories along with everyone else?

We'd be switching it off, so that we could be a bridesmaid at our best friends wedding,  or cheer our nephew on as he comes out of the church with his bride? 

We'd be switching it off so that we could spend whatever precious time we have on this earth plane making memories with you the family and friends we love, but M.E doesn't always afford us that. As to how much energy if any we're given is based on moment to moment. In my own case, as with many other M.E sufferers, I can go from looking fine  to chatting and laughing to being bedbound and unable to do anything all within 20 minutes.....THAT is the cruel nature of M.E, it's not a choice......& M.E! It's Not Just For Christmas.

                                                              Stay Blessed
                                                          Back Before Elvis x
                                         

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