Friday, 17 May 2019

My M.E LIfe Of Riley



After 29 yrs of living or should I say lingering with the horrendous condition known as M.E (Myalgic Encephalomyelitis) I'm never quite sure what to write that hasn't already been said, but as it's M.E awareness month I feel I should say something.So in response to some recent ignorance I came up with "My M.E Life of Riley" and thought I'd record it to video, unfortunately being at the receiving end of such ignorance is nothing new when you have M.E or other chronic conditions I'm sure? But social media is a great educating platform to address it.

I must've recited the piece 50 times or more in my head perfectly, however, with M.E it's getting it from our brain to our mouth that's the problem, it's like squeezing words from the back of your head through a dense wall of marshmallow in an effort to get them to the  front, by which time we've forgotten which word we were attempting  to squeeze through in the first place.

By my 8th attempt I think i'd recited every curse word on the planet (apologies to my mother........and my neighbour) . Plus I'm having problems with my eyes at the moment, all part of M.E and Fibromyalgia and something I'm used to but it just means my eye muscles keep going into spasm, think extreme cramp but in your eyeballs, so by the time I completed this spoken word it was old Squinty eyes 12th attempt .  
Recently I was having breakfast in my local greasy spoon just a three minute sloth crawl from my house, and while for some that  doesn't warrant fanfares or uploads to Instagram, when you've experienced being  bed-bound and housebound for two years nothing's ever the same again, you appreciate every little thing massively because firstly you know what it feels like to  have the very fundamental things you've taken for granted  taken away and secondly it's the little things that  become your world and you hold on to them in the hope that if you hold on tight enough one day they'll eventually  lead you back to who you were and where you were before illness struck, sun and rain on  your skin, bird song, a flower that's bloomed, hearing people chatting outside, and yes, poached eggs on toast at the local cafe, gratitude for everything is magnified. 

However the other week someone I know popped in to get a take-away coffee, I nodded and said "hallo" he responded with a tut followed by "Look at you living the Life of riley"  while also rolling his head in sync with his eyes  ( Proving that men can  multi-task after all ) 

I didn't respond because i've learnt over time that there's no quick fix for ignorance and often responding just fuels it further , plus where  energy is precious I'd rather use it for something more worthy, also silence can speak volumes, the onus is on the other person at the end of the day, It's not up to us as M.E Sufferers to justify or prove ourselves and our condition to anybody.


Unless someone's in severe M.E mode in which case you wouldn't  see them at all because they would be bed-bound with oxygen tubes, feeding tubes and other tubes trailing from various orifices, or someone's in a bad  M.E relapse meaning they would be housebound, you can't  tell someone has M.E just by looking at them. 
                                     
It's a permanent, chronic, physical condition that rises and falls like a mexican wave on loop, and can change day to day, hour to hour, Just because someone's out in social surroundings it doesn't mean they're well, it means that they are at a level of illness where they feel they can attempt something , maybe chat with someone other than family members or carer, have a laugh and taste a little normality for a short while.

You wouldn't see a cancer sufferer out and think they must be cured to be out socialising? or that they must be faking the illness because how can someone with cancer be so nicely groomed and still retain their humour and be laughing ? As i've mentioned before, over the years when i've written articles on living with M.E i've been contacted by those who have suffered from both cancer and M.E who wanted to tell me how they found M.E worse and given the choice they would rather have cancer. 


The first time I received such a call I have to say I was shocked, it's not a competition of course but it's a very bold statement to make, and since that first call I've  gone on to receive many similar calls and emails, which should  inform people to just how awful living with M.E is? 
We don't have a choice when it comes to whatever illness we're dealt, but we do have a choice of how to handle it, and over the years i've met the most amazing people, those with physical illness such as M.E, Cancer, Ms, Lupus, Cystic Fibrosis, Brain injury, C.O.P.D and a zillion others, plus those with mental health issues ranging from depression, bi-polar to schizophrenia, and not one person  has felt sorry for themselves, they have been stalwarts, warriors, determined to live the best life within their limitations, you wouldn't know by looking at any of them that they were ill because they choose not to share their daily struggles and misery 24/7, not everyone is a "benefit scrounger" living a life of riley. So for the well and healthy amongst you please remember that just because you can't see something, it doesn't mean it isn't there, and on that note, i'll leave you all with one word, Oxygen ? 
                                                                    
                                                   Til next time, Stay Blessed, 
                                                          Back Before Elvis                                                                                                                                                                    
                                           




Friday, 26 April 2019

I'm Miserable, So What? Now Sod Off!

What you are about to read is based on observation, feeling, fact and truth, or maybe I should say my truth because everyone is different of course?  It's not intended to be read with orchestral violins in the background, it's not a one stop shop pity party, it's not looking for Likes, Shares or  Hugs Hun 💖💖💖 comments, it's simply sharing the fact as the title states: I'm Miserable, So What? Now Sod Off.                           


There's so much pressure in  today's society to be  "Happy" Pharrell Williams sang about it and there's been a zillion books written on the subject from "Unf#ck yourself" by Gary John Bishop to Mr Cheerful by Roger Hargreaves, but the truth is it's okay to be bloody miserable sometimes or all of the time if that's the case ? And we shouldn't necessarily flock to nudge, cajole or bully someone back to "Happy."  

Most  life things have opposites, Life/Death, Light/Dark, Happy/Sad, etc, you can't feel one unless you've experienced the other in some way otherwise it wouldn't make sense, both are lessons, however, due to circumstances and  emotional make-up when it comes to emotions some people can get stuck on one side. 

For those of you that have followed other articles of mine over the years you will know I often refer to people holding onto their misery like a comfort blanket?  Again there are many reasons people do this, for some it's learnt behaviour, others, simply loneliness and needing attention, and then there's those who just don't have the  tools to navigate back to "Happy" and even if they did they would be too scared to use them because misery feels safe and familiar, and trying to drag someone back to the light side when they're not ready will only lead to more stress, anxiety and.....misery, some people are just too darn happy in their misery to change. 

Thankfully, I haven't always been miserable, as a kid my nicknames were things like Smiler, Happy-Go-Lucky and Giggler, and from childhood to adulthood i've always used humour to get by, but Life often has a habit of whittling away at you, and while as a young whippersnapper I may have felt like a mighty oak, today I'm more twig. 

The grief of losing my siblings has left me emotionally crippled and I can't pretend otherwise anymore .  Don't get me wrong, I still do the ha ha, hee hee, ho ho, when needed, business when needed, and be professional,you don't have to share your misery with other people all of the time, that's not fair. When the  grief torpedo hits during the day I can just take myself off into another room, let the tears roll and carry on doing whatever it is i'm doing, but it's the stillness of the night that's the worst, the thoughts and pictures seem so loud that even my sobs can't drown them out.  

I'm well aware of the rationalities of life and death, I know what my brother and sister would want and I know we have to carry on but after 4 years I'm not even a quarter of the way there yet. There's a constant emotional pain, littered with  anger and a crushing guilt, while still having the  need to remain strong for other family members. Welcome to grief on loop. We're all at different levels  of our journey, it's not a competition, none right or wrong, just ours. While people are well meaning, there's no words, pills, potions or head doc that's going to change things any time soon, that's only going to happen when my soul is ready to start letting me heal, the problem with that  is I've always been a lousy healer. 


On top of  M.E/Fibro and  other health conditions, grief is exhausting but  at this moment in time I don't see an end date, and maybe it never ends, it's not a position I've ever been in to this degree, I can only navigate  through each day as best as I can, and I prefer to do that alone . While I appreciate "cheer up gifts"  and cards with  smiley faces  I often wonder if  people  are expecting "Instant Happy" like i'm going to grab a pair maracas  and start shimmying  around the kitchen singing Copacabana?    

Much to people's surprise, I'm not a peopley person, I prefer my own company and that of wildlife, throw in chips, cheese and a yoga mat and i'm as contented as i'm ever going to be...for now. For now I accept miserable because  Michael and Michele were my big brother and sister and I was the youngest most annoying one and  losing  them both has meant I've lost a big part of me, there are quirks and memories you can't share with anyone else but your siblings and I feel totally lost and abandoned without them and it's scary. 




Just as it's okay to be "Happy" it's also  okay to be miserable, there's no law against it. I just can't be "Happy" right now, so hold off on the "Time is a healer,"  "Things will get better,"  "Maybe you need to try harder?" yadda yadda!  It's okay to be miserable, I'm miserable, so what? Now sod off. 


                                                       
                                                      
                                                      

                                                        Til Next Time, Stay Blessed
                                                               Back Before Elvis
                                         

Thursday, 18 April 2019

Mental Health Madness Pt3

I wasn't planning on turning this article into a trilogy, but then when it comes to mental health in the UK there's plenty to say.

My interest  hasn't been from choice as such but more of a spiritual persuasion and if i'm honest there's still very much a love hate battle going on . I have been surrounded in some way or another throughout life by just about every mental health issue you can think of. I did everything I could to avoid it before coming to the conclusion I'm not the sole author of my life story and someone up there has other ideas.  Even on rare shopping trips out due to the limitation of M.E & Fibromyalgia I would often  find myself cornered by a stranger who would go from saying "hallo"  to suddenly blurting out their entire mental health life story from sectionings to psychotic drugs and back again.  


Of course I could've just walked away, only I couldn't, despite part of me wanting to run and hide behind the curtains in soft furnishings, a louder  part was telling me to stay, listen and help, and so over decades I developed techniques that I could use to try and be of some use rather than just stand with a gormless expression, my usual some would say?  

What I've encountered is so many people stuck in a system  they really don't belong purely because they don't realise they have a choice.  When a person suffers repeated trauma they often switch off, disconnect from themselves, they go through life on automatic basically believing whatever label they're given, so when they end up in the one glove fits all mental health system, they end up stuck in a repeated cycle of self abuse, sectioning and stronger medication without any question. It's a band aid and a crutch but it doesn't go anywhere deep or personal enough in giving someone the tools needed to get well again & turn their life around on a more permanent basis. In the future I'm looking at maybe running trauma sensitive Yoga classes to help individuals find that connection again. 

I believe the mental health system in this country needs a major overhaul not only with how it's accessed but also its approach with treatments. I recently spoke to lady who suffered abuse and mental anguish for many years but like a phoenix , has risen from the ashes and this is what this inspirational lady Caroline Powell had to say on Mental health & Homelessness   


"I started working on the Project  "A Slice Of Happiness" in November 2017  after  volunteering for the London and Slough Run Charity who inspired me to help those suffering. I'm now blessed to be working with four highly experienced facilitators in this field using a new psychological approach to the UK, The Three Principles: David Key (Also an Ambassador), Jacqueline Hollows               ( Founder Of Beyond Recovery), Susan Marmot and Liliana Bellini, together we facilitate the programmes which are group sessions covering 30hrs. The DJ Brandon Block has been volunteering in Watford for 10yrs with Homelessness and Addictions, and he is also  an Ambassador.

We are all facilitating free of charge, Apprenticeships are at present being offered for free by David Keys, we already have local Organisations providing food for our sessions and Quakers Homeless London and W3RT are supporting us with a venue which should take us through to the end of June. The main focus for us at the moment is to raise awareness and get self referrals for those that need our support, with no cost to them. The vision is to create a community platform starting in Watford, helping mental health and self destructive behaviour which is organically grown solely by those who have been affected by Homelessness. We started our Programmes last September and the results for our test programme were very encouraging. W3RT




We have already offered two apprenticeships to past participants, and once we are at a level to become a registered charitable organisation, they will have a new skill set which they can get paid for whilst helping others in similar situations. At present there is nothing in the UK that provides grassroots Psychological support at this level so we are excited to see where the path takes us" 

You can follow their journey and show your support via social media Facebook & Twitter 

On the 3rd january Watford MP Richard Harrington confirmed that two new mental health teams would be set up in or near schools to deal with mild to moderate mental health conditions in children and young people, and would work  alongside schools and colleges and these teams will be paid for as part of the £20,5 bn extra funding put in by the Government for mental health ?  The NHS mental health services already set up in herts are inadequate, it seems madness (no pun intended) to set up two new teams?  

Plus it's a missed opportunity & a smack in the face to those Charities & organisations already established here in Watford helping young people, like Signpost for instance, who have been running  for 44 yrs and are now in danger & struggling to stay afloat ?  If you'd like to help them keep going, you can show them your support and make a donation on their website. 



As for  dealing with my own  frustrations at living with chronic physical illness for 29yrs, it has been a somewhat comedic journey that has included, going cross-eyed as I stared at a raisin on the end of my tongue....it's called mindfulness dear?  Walking around a garden staring at my feet for 20 mins, 20 mins?  when one of your prime symptoms is exhaustion ? ....er, yes, it's called mindfulness dear ?  And then there's the putting my "frustration" in a red velvet bag and throwing it off a cliff?
 "There there it's all gone ?"   
"But?......."  
"Ah, Sssh, it's all gone remember?" 

The DWP are no better, in fact their  ignorance and handling of any conditions be it physical or mental is not only a disgrace it's criminal. They operate on a "If it can't be seen in the hours assessment it doesn't exist" mentality, so as for anxiety ?  "The advisor didn't note any sign of anxiety, 0 point.  When I suggested that in this time of mental health awareness it was a very ignorant & shocking viewpoint. Their response was that the advisor, a healthcare professional ( in this instance a nurse) had told them there was no trembling, shaking or sweating" during her visit and that's who they listen to. So in the DWPs  parameters that is  enough to deem  a condition, symptom as not existing?  

As for unsafe swallow? "The advisor noted you were swallowing your spittle fine, also as mornings are better if you need to eat you can eat something up to midday. 0 points"

At a time where DWP have been forced to admit  111,450  claims were closed due the deaths of the claimants I suggest some of that extra Government funding goes into training DWP staff in treating those with physical and mental conditions with respect, dignity and compassion? 

Lastly, as for my own struggle with health and grief? they are all  normal emotions and i'll just crack on and deal  with them all as they ebb and flow, and if anyone wants me to put raisins on my tongue in future?  Please make sure they're Chocolate covered .   

Friday, 4 January 2019

Mental Health Madness PT2

Continuing on from  Mental Health Madness PT1  having already had the hurdle of trying to see a GP, I decided as a writer to do what I believe many in desperate need won't do, and that's to fill in the Wellbeing  Centres online seven-page questionnaire to try and access the service? 

The question that shocked me the most was on the last page, it asked if I was thinking of committing Suicide and if so had I planned how I was going to do it? There was then a box where I'm asked to describe exactly HOW I would do it?  I have to admit there was a mixture of shock, anger and sarcastic thoughts buzzing through my head at this point.  

Once you've seen a question you can't unsee it and I think it's just human nature, curiosity and automatic reaction to do that theoretical thing, where your inner head Chimp goes "Oh okay, well I wouldn't commit suicide but if I did how WOULD I do it? 
I was tempted to write in the box "I'm thinking of shoving a stick of dynamite up my arse and wandering into the Wellness centre"   (Wouldn't have to wait 12 weeks to be seen then eh? )  
I didn't of course, it was left blank because I'm not suicidal but I find it quite horrific and unnecessary to ask such a question, not just at such an early stage of trying to access the service but to ask it at all?

For someone that wasn't suicidal could it not suddenly become an option when presented with this question and made to think about it in detail?  For those that ARE suicidal doesn't this just fuel those thoughts? 

In the main, and in my personal experience people that commit suicide don't usually talk about it, in fact as in my brothers case they often lie and tell others they wouldn't ever do that.  So someone who was genuinely thinking of taking their own life wouldn't fill the form in honestly anyway. Those that frequently talk about Suicide and have suicidal thoughts rarely go through with it, there's often a pattern of self-harm, or/and drink, drugs, generally self-destructive behaviour involved in their quest to find someone to save them, often from themselves due to some past or present situation, so all the question does is fuel that thought and behaviour pattern. 

Having submitted the form, two weeks later I received a letter......along with a  two-sided sliding scale questionnaire that I was expected to fill in (I'll be on Mastermind at this rate ). I refuse point blank to fill in these useless forms, it's just another block that serves no purpose. For anyone unfamiliar with a sliding scale form let me enlighten you. The first problem with these questionnaires is that they are "One Glove Fits All" based, they take nothing else into consideration.  So the conflict is the questions are looked at from a mental/psychological angle whereas someone like myself who has Scoliosis,  Osteoporosis, Myalgic Encephalomyelitis (M.E) & Fibromyalgia view them from a physical angle by which they are impossible to fill in due to the daily fluctuating symptoms. 

Trouble Concentrating on things such as reading the newspaper or watching TV?  Not at all?  Several days?  More than half the days?  Nearly every day? 

Another question: 

Choose from the scale  0-8 how much you would avoid the situations or objects below:
Social situations due to fear of being embarrassed or making a fool of myself? 
Certain situations because of fear of having panic attacks or other distressing symptoms such as loss of bladder, vomiting or dizzyness?  
Would Not Avoid It?  Slightly Avoid It? Definitely Avoid It?  Markedly Avoid It?  Always Avoid It?  
If looking at it from a physical illness angle the questions all intermate that illness is a choice?  There are many things I cannot do due to M.E & Fibromyalgia which are the ones that hinder me the most due to their symptoms, meaning avoidance of certain things is a result of physical illness. certainly not a choice.

"Can't you just fill it in anyway?" encouraged the lady that called a few weeks later as part of my initial assessment. After explaining yet again why  I refuse to fill in these forms, she agreed with everything I stated.....but then said it still needed to be filled as  "part of the process"

As an added annoyance I was spoken to in a tone that made me feel as though I'd  just pooped on the potty for the first time, and it was a  conversation littered with what felt like buzz words that staff have been told to slip in as often as possible      "Well done"  "You're being very brave" "Thank-you for sharing that"  Yadda Yadda!

 " Do you think we could we go through it together over the phone?" she continued, regarding the form.
"We Could, but it would be a lie because it's impossible to fill in honestly?" says I

"Let's try anyway?" she insisted

 I found myself suddenly regressed to a petulant child as I repeated, 8, 8, 8, 8,  Basically, I just gave the severest answer for each question. We both knew it was meaningless but she was happy because the form had been filled and she could tick a box. She then informed me that I would have to go through a sliding scale form with the Counsellor too and off we went back and forth into battle again.  She said she would have to speak to her manager and get back to me.

She got back a few days later to say they could offer me the CBT I'd requested for dealing with long-term chronic illness, but would I consider grief counselling after that? 
Huh?  I just wanted CBT for the whole kit and caboodle that's going on in my life, it all kinda comes as a package?

Apparently, it doesn't work like that, I can have CBT in terms of my long-term physical health conditions but they don't deal in grief so  I'd need to go back to my GP and see about being referred for grief counselling somewhere else or I might even be able to refer myself......again.
It's a weird ask of someone really isn't it, to separate their pains and emotions and departmentalise them so they can fit into the right box for convenience sake?  

The conversation ended with her telling me the counsellor would be in touch in 4 wks to introduce himself properly and then it would probably be a 12 wk wait? That was in September and I've heard nothing since and it will probably boil down to the age-old  "Slipped through the net" scenario that I've come to know so well over 29yrs, and that got me thinking, I've survived 29yrs without any real outside support or help  for any of my physical conditions, in fact if we're honest, like many I've faced completely the opposite, Ignorance, prejudice, negligence and downright cruelty. As for grief counselling? again, I've coped for three years without any help and I'll continue muddling through I'm sure. What has been made so evident by my experience of trying to access mental health services thus far is how little has changed.

While I'm still  angry  and devastated and a zillion other things that my brother took his own life I really don't blame him for not trying to access any help because it's an Awful, Clueless, Jobs-worthy Scripted Shambles and had I been someone that WAS suicidal I would've stuck my middle finger up  and jumped off the nearest bridge by  now.....and I wonder how many have ? 


The Wellbeing service is run by the NHS  and we all know how overstretched they are as far as funding and staff go?  but it isn't all about money...or lack of, it goes beyond that, the whole process is wrong, lengthy and unnecessary,  it's patronising and even before physically talking to someone you're  put off by the sites talk of   "expected out of session homework tasks"  and  "filling in of questionnaires to monitor symptoms and progress" I was just looking for a bit of help with my grief at the loss of both my siblings and also 29 yrs of living with M.E but there is no way on earth having experienced what  I have so far that I would take it any further even by chance they do eventually get in touch.

With the barbaric roll out of Universal credit, mental health problems are set to rise. In October Glasgow MSP Annie Wells a Tory Mental Health spokesperson admitted that it was failing societies most vulnerable.  And don't think this is just the usual politics, the misery and deaths as a result of UC are intentional, the Government are hellbent on slashing the welfare bill at any cost and that's why they are content to  keep lying, remain emotionless to what's happening &  shift the responsibility to individuals, groups and charities to pick up the pieces  just so long as they cut that bill.  We don't just have a mental health crisis on our hands, we have a humanitarian crisis on our hands. There is a serious ripple of discontent stirring throughout social media as various groups start to form and gather followers, with a call for action and I believe it won't be long until we see that action on our streets. This government need to start listening, for just as the people put them up there, the people can and will take them down again, the vulnerable are counting on us.  
                                     
                                                                 Til Next Time
                                                                  Stay Blessed
                                                               Back Before Elvis
                        


Monday, 31 December 2018

Resolution Time & Appreciation

Busy! Busy! Busy! Rush! Rush! Rush! from the moment we open our eyes in the morning our brain starts whirring or in my case spluttering and not making much sense until about 10am, thanks to an infusion of Coffee and as little human interaction as possible. 
Have you noticed we're a generation that is forever thinking & chattering away in our own head, what we've got to do today, whether we're good enough, always trying to stay one thought ahead, and always self-sabotaging like it's the whole point in being here?  When we're not doing that we have our face glued to a screen, be it the  (not so) Smart Phone, Computer, Netflix yadda yadda!...ah no, silly me, you wouldn't have noticed would you? 

We've become so disconnected from each other AND ourselves that we're becoming as automated as most of the UK's customer services, ya know... Press 1, Press 2,  Please state the reason why you're here after the tone? I'm sorry I didn't get that. Lets' try again.  Please state why you're here after the tone? 

Why ARE we here?  What I do know is, we're missing the point, we're so wrapped up in things that don't matter that we're ignoring the things that do, like time, time to appreciate everything we have, everything we are.  

The very simple act of waking each morning, opening our eyes, to see, to hear, is truly a blessing, many aren't afforded that privilege, and it is a privilege NOT a right,  and yet how many actually give it a thought? Instead we crawl out of bed and do things on automatic, wash, get dressed, clean teeth etc, all things that many people due to death, poor health or/and disability can't do. We take every second of our Life and doable things for granted. Have you ever stopped for a moment to consider what it would be like to wake up blind?  or deaf? or disabled and not be able to dress yourself, or even go to the toilet by yourself?  How bloody lucky for those of us given the ability to do these things and much more every day?

You can't buy time, time to appreciate the things that truly matter, time for family and friends & strangers even, those in need. It's free, it's there and yet we choose to put everything else that doesn't really matter first?  Taking time to appreciate time and all the things that actually make our daily life possible is I believe the point.  When our time is over,  having a great job, big house and flash car will mean nothing. People don't remember others by their material wealth, we're remembered for acts of kindness, for giving our time, for our ability to make others laugh, feel good, or feel loved. None of those things cost and yet it's what nourishes another's soul more than any amount of money ever could, and by giving of ourselves in this way we also nourish our own soul. 

They say the true meaning of Christmas has been lost, it should be a time of reflection, appreciation, coming together, sharing?  But why just Christmas? Shouldn't that be our daily goal?

In a nutshell, self-sabotaging serves no purpose whatsoever, none of it's true & it just wastes precious time, so focus on your abilities and remember the small things ARE the big things, the things that matter.  Regarding death, someone once said that we're all in a queue we just don't know where in the queue we are. So take that thought into 2019 with you, If you wake up in the morning it's cause for celebration,  appreciate the day even the poop things that happen, view it as a life lesson and not the end of the world because in the bigger picture it really isn't.  Take time to say what you mean and mean what you say, and say "I love you" more often and don't ever get too big to give or receive a hug.  I have come to learn the magnitude of  giving time and a hug to another, while a simple act, earlier this year someone who was considering suicide told me it  had made them feel that someone cared, made them feel they had worth and  plenty to still offer to the world &  had given them a reason  to stay.  Each and every one of us has these wonderful gifts inside of us that we can give to another, it would sure make the world a better place if we all used them, that might be asking a lot, but we can at least start with ourselves?

To family and friends real & virtual and those no longer in my life but have taught me lessons I thank you all, I have nothing but love and appreciation. 
                                              Happy New Year, Stay Blessed
                                                       Back Before Elvis x