Friday, 25 May 2018

Fat Letters....No Op?

I've recently been contacted by a number of rather upset patients that come under West Herts Hospitals NHS trust, who while waiting for their Op date for medical conditions have suddenly received a letter to basically inform them they are too fat and can't have the Op after all.  The Trust have seemingly rolled out a new policy with a total lack of communication between departments, meaning even those at the hospital that should know about it......didn't.

As a regular reader & follower of the Column I used to write at the Watford Obs, I know one of the patients involved and was shocked to say the least when she contacted me on this matter, because while like most of us she could do with losing a few pounds, which she readily admits herself,  she is not what you would describe as fat or obese.  

When I started getting contacted by other patients with exactly the same issue I felt it needed bringing to public attention so that others can be pre-warned and hopefully in the meantime the Trust can rectify this faux pas.  Most of the patients' stories were similar, that they'd seen their doctor, a consultant at the hospital and had their pre-op and at no stage had any concern been raised about their weight, they were just told they would be put on a waiting list for their Op date.

It's never easy waiting for an Op, there's the stress and anxiousness of anticipation and just wanting to get it over with, so when a letter dropped through  one of the patients letter box they assumed it was  a date and tore it open only to read that it had been decided their BMI was too high and the trust weren't going to fund the Op.  
"I sat and cried, I think it was because it came as such a shock,  I've been waiting for weeks for my Op date so this was the last thing I was expecting," she  told me.
Another patient told of how they'd "broken down" when they'd received the letter. "I rarely ever cry, but they were basically telling me I was fat and it made me feel like rubbish,  nobody had said anything to me about losing weight.  Thankfully my family were home with me at the time and gave me hugs and reassurance, but I'd hate to think of  someone vulnerable and on their own suddenly getting one of these letters out of the blue " 

And that's one of the main reasons I decided to take up the story. It's Mental Health Awareness month this month, I've studied & researched all types of mental illness over the years, and I've also counselled & supported many with mental health problems over the years, so I'm fully aware of just how fragile a human can be, it can take nothing to very little to push someone with mental health issues over the edge. Weight issues are a very sensitive subject and while sensitivity tends to be pointed towards women I believe men are just as self-conscious and insecure when it comes to their size and appearance and it shouldn't be taken lightly. 
The letters go on to say the patients have 4 months to lose weight otherwise they will be taken off the list. If they lose the weight within the time frame they have to go back to their doctors, who presumably will refer them back to the hospital again to undergo their Pre Op....again?  Some of the patients contacted the hospital, only to be told someone would have to call them back because nothing was known about this. The callbacks revealed that it was a new policy the Trust were rolling out, criteria for an Op was now much stricter because there is so much pressure on the NHS  and something should have been said to patients at the stage they saw the consultant ....... the only problem was, someone seemingly forget to tell the consultants ? 

Another patient said  "I may be a stone overweight, but I go to the gym, I'm extremely fit, don't smoke and don't drink and yet I can't have the Op? Does it mean someone that's 8 stone, drinks and smokes and doesn't exercise can have the Op?  If the Trust are changing criteria or the way they deal with it, surely patients should be made aware in advance? 

A lady, also just a stone overweight told me that due to the placing of a Cyst she was waiting to have removed, she'd been advised to also have a hysterectomy, but the letter she received says due to her BMI being too high, the trust will only fund the removal of the Cyst, not the hysterectomy? 
"How the hell can that make sense,"  she said angrily 

After listening to all the cases,  I can only conclude that while it's seemingly being rolled out as for the patients own health & safety, A  realist, some would say cynical me, can't help thinking it smacks of cost-cutting?  Remember, if the patient hasn't lost the weight to fit the criteria within 4 months they are knocked off the list?  And lets' face it losing weight isn't that easy, even for the die hards amongst us?  
And it all seems rather shambolic,  they basically tell one patient she's too fat to have the Op so she can only have half of it as they'll only fund part of it? .... Surely she's either too fat to have the Op or she's not? 

 Not being obese or overly fat has always been a sensible factor when it comes to Operations, nobody has a problem with that, least of all the patients that have got in contact with me, but it seems the goal posts have been moved without anybody being warned. What  is now classed as being "too fat"?  Under the new rules what is the BMI people now need to be to have their operations?  Shouldn't patients be told at the start? 

The way in which this has been rolled out and handled has quite frankly been atrocious and has caused a lot of upset to the unsuspecting patients waiting on their Op date letters, only to receive the "Too fat, No-op" letters instead. We all make mistakes and we are all aware of the pressure on the NHS, but I hope West Herts Trust will put this right?  Firstly by apologising to all those that have received one of these letters, and secondly to rethink how they go forward with this policy. 

If anyone at West Herts NHS trust would like to get in touch with me to comment, I'd be more than happy to publish. 

                                                                    Stay Blessed
                                                               Back Before Elvis

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' 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