Friday, 11 May 2018

Don't Call The Doctor!

As some of you will know, I've had Myalgic Encephalomyelitis (M.E) for 28yrs, M.E is a chronic complex physical debilitating illness. I also have other stuff like Fibromyalgia, Osteoporosis, Scoliosis,  hunchback, yada yada...apart from that, as most would say " I'm fine ". 


On Sunday 22nd April  2018 I began having breathing problems, it's common with my conditions and impossible to pinpoint what causes what exactly. The muscular weakness seems to lead to inflammation and spasms where the back and chest feel like concrete and there's an inability to take a full breath and then due to the exhaustion it all becomes rather distressing. 

I'm usually able to ride this out 
but it became worse as the day went on and by the evening, with raging pins and needles shooting up my spine like fire and spreading throughout my body I asked my mother to call an ambulance. I was also at a bad level of M.E at this point, trouble with processing thoughts and words slurring.

When the medics arrived they seemed rather hacked off that I wasn't on my last gasp and I felt the urge to apologize for being conscious. As it was explained to them I had M.E, there were huffs, puffs, eye rolling and general irritation.

As my mother later said "They made me feel like sh*t"  
"Yes mother, welcome to the world of M.E Sufferers"




Travelling in the back of an ambulance is the last place you want to be when you have M.E, the suspension makes it feel like you're being thrown around in a tumble dryer,  add in the bright ceiling lights and you're on the highway to hell.
At the hospital, Pablo (not his real name) introduced himself as my support nurse and announced he needed to take some blood. He began  tapping here there and everywhere looking for an appropriate vein to stick his needle: 


Me: Well I just hope your good at taking blood Pablo?

Pablo: No, 

(Did my foggy  disorientated head hear right?) 


Me: Sorry Pablo, did you just say you were no good at taking blood? 

Pablo: Yes. 

At this point, he twists my wrist, pulls it downwards and says he's  going to take it from the side if that's okay with me? 


Me: Pablo, you can take it where you want, as long as you don't hur.......AHHHHHHHHHHHHHHHH! 


I can confirm Pablo is no good at taking blood.



This is followed by an ECG and a chest Xray, thankfully not by Pablo, but the porter that wheels the bed to various bays & rooms obviously thinks we're taking part in Robot Wars, and his determined to take out anything that gets in our way, CRASH!, BANG! WALLOP!  I'm laid on my back, with one hand gripping the metal sidebar with white knuckles and the other trying to cover sensitive eyes from the bright ceiling lights speeding passed quicker than a Virgin media broadband connection. 

All done, and back in the bay I can't help but notice I have pants older than the doctor that has just entered. She leans on the beds' sidebars, turns her head to one side and looks at me patronisingly before announcing that everything is clear, so what would I like her to do? 

Before I respond to that question, I'm trying to explain the reason for my slow thought process and slurred speech...but it's...er?...slow.....& slurred, She's nodding, but I'm not sure if it's in acknowledgement or she's just nodding off because she's not even looking at me. She asks if I might just be having a bad M.E day?  in which case, there's still nothing they can do for me. 

"JUST having a bad M.E day" ?

she continues to look perplexed, and shrugs as her eyes wander off around the ward again.

I realise as per these 28 yrs, when it comes to GP's & Hospitals I'm not going to get anywhere.  When you have M.E,  you're viewed in the same way a dog views a lamp post.  
As it's M.E awareness month  I would ask those of you blessed with good health to imagine the following over numerous decades: You're feeling ill so you turn to a doctor? The hospital? But instead of helping you they bully you & try to brainwash you into believing you have a mental illness until you actually start to believe you are going crazy?   An ignorant media then spread those lies and the public swallow it? You lose your job, your social life, family members, friends?  

While standing your ground that you are suffering from a physical illness, refusing to play along puts you at risk of being forcibly removed from your home and locked up in a psychiatric unit and denied any visits from family and friends? You're also labelled a time- waster and treated accordingly.  Society treats you with such prejudice and disdain you're frightened to leave the house? 

Imagine feeling as though you are living in the dark ages? The very people that are supposedly there to help you, treat you like a criminal, punish you? Force you to exercise until you collapse and die?  Give you addictive medication that damages your body & health further? Yes, Welcome to the world of M.E indeed. 

M.E sufferers have and continue to be treated appallingly. It would take a novel to explain just how bad and maybe that's something I will do? 

Just the other day another friend and fellow M.E sufferer, having waited  3yrs for an appointment to see a rheumatologist was told all her pain was in her soul because she was probably too nice? 

Even though M.E has been listed as a neurological disorder by the world health organisation since 1969, the ignorance and prejudice has been shocking &  in many cases continues. Thankfully now the public, in general, are a lot savvier and clued up to the realities of M.E but sadly the medical profession are very much behind.  With Charities like Invest In M.E Research progress is being made, but we can't afford to let up, future generations depend on it.

 Remember, it was only in the 80's epilepsy was finally accepted as a physical illness, up til then sufferers were often deemed possessed and with mental illness and permanently sectioned. I personally knew a lady whose daughter was a victim of those times,  her mother went to her death full of guilt. Before the term Menopausal symptoms, women were branded as crazy and hysterical? 

While I'm well aware the medical profession is very ABC textbook operated, it should be obvious by now that life isn't like that, but Lessons aren't being learnt. Just because a new illness comes along that can't be visibly seen or shows up anything in basic tests, it doesn't necessarily mean that it's psychologically based, we've seen proof of that decade after decade and yet the same lazy ass route is taken every time.  Enough is enough, surely it's time the profession changed mindset?
   
Back to Watford Hospital, As my neighbour & her son kindly went to get the car to take me home and I shuffled to the exit in my PJ's, the doctor called out: "If you feel ill or have trouble breathing, come back"  ...???????????????

Yes, I'll just leave that out there for you to ponder on? 


 If you'd like to show your support for Invest In M.E Research every penny no matter how small is appreciated. The charity is run entirely by Volunteers, so they take no wages, your money goes where it should go, making a difference. Thank you, 

                                                                 Stay blessed   
                                                             Back Before Elvis X
                                         
     

Saturday, 30 December 2017

Rants Rambles & Reflections 2017

This time of year usually has us reflecting, looking back and looking forward, maybe thinking of  changes we'd like to make?  and as I stroll down what often feels like the psychiatric corridors of Facebook I can't help thinking  I haven't done too badly.  
Each and every one of us has a story and most have their struggles but I generally find the best medicine for misery is to focus on others. As someone who  lives a Yogic life  it's the first mantra of my day "What can I do to make someone elses day better today?" it's not about big gestures it's about the small stuff and it's something that we are all able to do regardless of age, health or circumstances.  By thinking of others & helping others without any expectations for self, we can often learn alot and that in itself can be  healing.

Talking of healing, can we make a deal to banish last gasp selfies please ? This year my feed has been awash with open backed hospital gowns, zoomed in hand and arm shots with Cannulas, Heart Monitors, Drips (the object not the person.....although?)  & paper mache sick bowls.......One lady in the back of an ambulance and in the midst of death even managed to update us to the fact she was being blue lighted to hospital because the medics didn't know if she was going to make it?
As some of you may know I very recently had a bit of a health scare myself and was up the hospital daily for tests and procedures as they thought my 2012 tumour might've returned or that it was Cancer? The last procedure I had was on the 14th of December,  a Colonoscopy, I was supposed to be sedated but something went wrong so I was wide awake watching the screen and feeling every bit as the surgeon journeyed with his Camera up into the deep dark depths of my upper bowel, It wasn't David Attenborough but it was fascinating none the less although I wouldn't recommend it on Trip Advisor , and you'll be relieved to hear  that at no point with my butt hung over the side of the  bed, did i think of whipping out my phone and taking a few ass selfies to share with you. 
Other things I'd like clearing up in 2018  are words such as  "Nigga" & "Faggot" there's so much hypocrisy, either they're acceptable or they're not make ya bloomin mind up?  This year I've seen white journalists  publicly condemning the use of these words one minute, only to big up Stormsys album the next....What, the one where he uses the word Nigga?  As do many rap and hip hop artists?  & I don't see any of these same journalists  jumping up and down  at the annual Christmas blasting of  Fairytale In New York? with lyrics  "You Scumbag You Maggot, You Cheap Lousy Faggot" ? 
There are a zillion words that could be deemed offensive depending on tone and context.  There is no place for true racism and homophobia but I think it's time we pulled up our big pants & stopped being offended all the time. Let's face it, the majority of humans are decent and don't use words maliciously. In fact White British are the only race I know willing to throw their own grandmothers under the bus for fear of the consequences of upsetting every other race. 
And there's Irony from all the groups that use race, religion or sexuality in their title, huffing and puffing about wanting equality....Er?   Can we all pleeeeeeease just operate with some common sense? 

As for Brexit? since the vote I've had many a sleepless night along with the rest of the nation just worrying about the colour of our passport, nothing else, just the colour of our passport.  If it was going to be green I  didn't know how I was going to break it to the mother, she hates green. I couldn't help thinking a multicolored one would probably be the best bet ?  but hallelujah  the great British public can now sleep easy, it's blue, our passport is going to be blue.  So, that's it then, that's all we need to know, everything's sorted? 
I can hardly bring myself to mention this next bugbear...there are some pretty sick individuals out there, Look!.....go on look! whenever I visit the loo, be it cafe, hair salon or other peoples houses this is what i'm met with.........
What's anyone meant to do with THAT?   It's not like I have a huge under carriage or anything but come on people? It's not even one full square? It's not rocket science, do you really need me to get it printed on a T-Shirt ? 


As for the good stuff, I've reviewed some of the finest bands and artists this year from the likes  of Kate Dimbleby with her unique accapella album, April Blue with their awesome take on Gary Numans Cars,  Didi who broke away from the Production desk to launch her own music career, Surburban Dirts who quite possibly had their song  ripped off by James Bay? Post Collide A fave with BBC 1XTRA & doing Sheffield proud. Toni Sidgwick who released Lions in her hometown of Barnard castle. Hiphops,
The Org & their phenominal single "Assemble (The Body's the Church) .  Audrey Hepburn Lookalike Roxanne de bastion  & self released album Heirlooms and hearsay.  Alex Francis a man whose vocals could get your nether regions rumbling. Folk and roots duo  Oka Vanga  & their mystical album Dance Of The Copper Trail & "He Came Back" the last album from the late great Singer Songwriter from St albans Peter Ransome .  And one of my fave albums to date  Old Mill Park by Tidelands.  Thankyou to everyone for allowing me to be part of your journey, including Folkstock Records Founder Helen Meissner   and also  David Slater  & Roy Spencer . I 'm already looking forward to sharing more amazing music with you in 2018.

Apart from writing, other plans, being the geek that I am Is to keep boring you on social media with my Moon shots, it's been a very odd shape the last two nights, first one reminds me of a stingray, & the second, an egg? 





After an absence of two years I'm  hoping to return back onto the music scene.......if i can master production.....but as a technomuppet I might be awhile so please don't hold your breath? 
I'm also  improving  guitar skills, learning the Ukelele and  Condor Bass Native American flute, although not all at the same time & Start training to become a Hatha Yoga Teacher. I also aim to continue as a Lets Do It For ME! team member raising awareness and funds for small UK Charity Invest In ME Research  so 2018  is looking set to be a busy one. However, living with conditions such as Myalgic Encephalomyelitis (M.E) Fibromyalgia, Scoliosis & Osteoporosis brings its daily challenges and as I've come to realize Life doesn't always work out how you plan it, BUT.......... we can at least have a bloody good try?  As I always say,  no matter how limited ones life is:
" It's better to die living than sitting around waiting to die"

And as I leave you with that thought, I wish each and every one of you a Happy New Year. Thank-you for your continued support.  2018?.....Lets do this.
                                                    
                                                               Stay Blessed
                                                          Back Before Elvis X
                                    


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