Category Archives: Disabilities

Living In Scotland. Living With Pain. Just Living. Thoughts? How Do We Define?

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Living In Scotland. Living With Pain. Just Living. Thoughts? How Do We Define?

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By @ShaunyNews 

Do you know where you come from? What you represent?

Do you know where you come from? What you represent?

Sheep or loner? Often we do things because it’s “What other people do” or “What society expects from us” We tug along with the rest of humanity and often we do it blindly. Try stepping away, in your mind, from that truth, or lie, and ask yourself how you feel afterwards. I did. Try it, seriously. Is Scotland full of sheep who listen to the media and idiots who think they know it all, or are we a people who keep away from the herd and see clearly what we need to? Curious if ANYONE ever reads this, but more curious to get an answer from EVERYONE who reads it. Sadly by nature nobody will type a thing first. If one other person wrote like I am, many would follow. Trust me. But you won’t…What you scared from? I Just would like to know! I see family and friends on the same path as everyone else, I stepped away from that path and amazing things happened to me. Doors opened I had no idea were even there. 

So why do we stay with the flock Scotland? 

Again, I know I waste my time. Scottish people I guess are as sceptical of social thinking of them than any other populous of any other nation in our World. I used to think “Oh what will people think of me” Now I don’t even ask. I just do. I freed myself from ‘Something’ No main stream God was involved, no religion was involved I read no books for guidance. I hate to talk about my Disability. Sadly many of you, yes you, will define me by my actions and words. I don’t care, so why do you? 😀

See we are all on a journey in life, the mass percentage have no idea they are on one, they wake up, have a shower, go to Work, come home, make tea, eat tea, sit down, watch TV, go to bed, have sex, wake up, have a shower, go to work…….. You get my point. I live in utter agony BUT I AM NOT ALONE. Many who read this are sore or ill or dying. I see a World around me of sheep. I see it more in real life than on-line. Many who really don’t fully understand the Internet will not understand what I am saying here. Bonds I have made 20 years ago, 15 years ago, 10 years ago, 5 years ago, last month/week, today and/or tomorrow are still there on-line. Sure we lose people but that is life, that happens no matter where we take our minds. Lately I have started to write, nearly 2 years now, I guess I am the Author of my own being these days. I am almost narrating my own life as I learn to live. Make sense?

I am writing where I am going

I am writing where I am going

I guess I am a free soul, I am not trapped by anything. I was on HEAVY medication till 4 days ago. In the last 4 days I have had less medication in these 4 days than I did in 12 hours of any given day I was on them fully. I came off a few weeks back to the heavy levels, I only really shared it a few days ago. I feel awake now. I read a lot of what I did when I was pumped with POISON the Dr gave me and some made sense, some never. I took a choice to take no drugs and live no matter. I don’t want a groundhog day existence, I want an existence where every living breathing moment I learn. I could not sit for one second and think “I know it all” because I don’t and neither DO YOU. You don’t. you think you do, you don’t 

Many will read this and think “Is this aimed at me” Let me explain something to YOU. If you read this and thought “Is this aimed at me” then the answer is “This is aimed at you” BUT I never aimed at anyone, I aimed nowhere and at nobody. So if you thought I meant you, then look in the mirror, be honest and ask why you thought I meant “This was about you” 

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BE YOU

Many deny themselves a true life because they are scared of the hurt that always comes when you REALLY LIVE. I used to turn my back on love and friendship because I was once scared of losing. I didn’t like myself for that. So I changed, I became Shaun, free from medication, pain, loss, worrying, gossips, hate and all that hits us in life. Take hatred. I know many who feel hate, they take a person’s words and feel hated, I ask you to not take that hatred on board. Don’t become what others want you to be. Be you!! Love and take the loss and hurt when it comes. The reason I did this is I realised I am different first of all. I came to the conclusion I am ‘DIFFERENT’ I have changed, but you know, I LOVE WHO I AM NOW! I am happy, blessed in the sense I have feeling(s). I feel, I love, I breath at my own pace. I observe our World now, I write about it, it has become my ‘Art Form’ See when you do ANYTHING that others can’t for WHATEVER reason, inability, hatred, confusion whatever! You become fear, hate, worry, gossip and rumour driven. 

I am free from all that now. I ask simply. Why can’t you be free? What is stopping you? I had one person tell me “I Work for a living unlike you” BEHIND MY BACK, lol. Yeah a person said this about me. I heard about it and smiled then I became sad. That person thinks I sit and pretend to be nothing and take what the World gives me. I feel sorry for you if you feel that way. I want Scotland to be a free country from the British Union. It is my ‘Art’ right now. It is what I research and write about. I write for my place in Scotland for a group of like minded people http://www.scot2.scot/ have a look for your area there. I write for and about West Edinburgh here https://www.facebook.com/pages/scot2scot-Edinburgh-West/361924177307818  So for anyone who thinks ‘Shaun lives for Shaun’ please, think again. I also run this page here for others who suffer, many less, many worse than I suffer, but I have to try and help everyone https://www.facebook.com/groups/699321140156812/ That is my page for ANYONE with any Chronic illness, this is an illness or disease that you will have for life or that will control your life. So please, never say “Shaun only talks about Shaun” to me. 

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Where did you learn how to be a person? From and by whom taught you?

Open your feelings, talk, be you. I know family and friends who I can’t speak to on the phone for over 2 minutes, they hide from feelings. I let them be. Like me, like you, they will find who they are. If it means they never show or allow feeling in then that is sad, not “That person is sad” It is sad in the term, unfair. But I can tell you unfair, I got a life taken from me. Did I sit and feel sorry for myself? No! I ran a football club for nearly 10 years, worked with kids for free all these 15 years I was in football. I am not showing off, I wouldn’t and couldn’t do that. All I am saying is, people like to assume, presume and guess with gossip also. So knowing the facts about life will help YOU become you and not the society made version you are told to be

Try it, please. Allow opinion, accept opinion, even if you don’t understand or believe in the opinion. Don’t get all worried about things you can’t change either. Don’t live in guilt, I used to be guilt but in reality is there anything we can do about the past? No, there is nothing. So what I have learnt and just recently as I wean of this Dr’s poison is “To be Shaun” But always look to others feelings best I can. As I come off my poison fully the pain will cripple me, literally cripple me. But I will fight it, not to point score or prove points, but for a Woman I love always. For 2 guys I have watched growing in to men and more so for two wee lassies (Little Girls out side Scotland) 2 wee lassies who are starting to be aware of what and who is around them. I MUST with the help of my partner make sure these 2 wee special princess of mine get to understand the World the same as their big brothers. I have to do that, I will never judge my kids nor show hate. Parents don’t do that, often with one of my sons they see anger, where in-fact it’s ‘Dad trying to teach’ I was that age once so I know what to look out for, lol

There is no book on 'Parenting' or being a good 'Partner' - We learn as we grow, or we lose!

There is no book on ‘Parenting’ or being a good ‘Partner’ – We learn as we grow, or we lose!

Life is precious, I don’t waste moments, I keep them. My Mum recently remarried, that was a moment, I keep it where it should be kept. Same as all moments. I smile and live and be free from the shackles of what life expects and more to what I ACCEPT. Live guys and gal’s, we have no other choice. You may be happy at 20 years old, but please know choices you make aged 20 will define where you are at age 40, I am told my one of my parents “What you do at 40 will define you when you are my age” I am lucky to have that wisdom around me. See that is what it is at the end of the day, we surround ourselves with people we can be ourselves around. We can relax with people we know care about us. Often it is not blood related, but that is fine, as long as you surround yourself with people who will mould you moving forward in life. I tried my best with my sons with my Partner and we nailed it, 2 amazing lads. Now we have the PRIVILEGETO DO IT ALL AGAIN WITH THE GIRLS. I CAN’T WAIT!!! 🙂

All I said above applied to you, anywhere in our World and whoever you are wherever you are and all in-between 

Learn to smile, and mean it 😀

Shaun

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MS sufferers in Scotland to be first in UK to get new drug on NHS

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MS sufferers in Scotland to be first in UK to get new drug on NHS

Fingolimod

Fingolimod

By @ShaunyNews Via http://www.heraldscotland.com/news/health/ms-sufferers-in-scotland-to-be-first-in-uk-to-get-new-drug-on-nhs.1421079621 Multiple sclerosis (MS) sufferers in Scotland are to be the first in the UK to get a new drug that can improve their quality of life on the NHS. The Scottish Medicines Consortium (SMC) has accepted Pledigry as a treatment for adults with the most common form of MS. Some 85% of MS patients have the relapsing remitting form of the disease, where they have distinct attacks of symptoms which then fade away either partially or completely.

The new treatment was accepted by the SMC after MS groups argued Pledigry can offer patients a better quality of life as it requires them to have fewer injections each week than the other treatments that are available.

Mark O’Donnell, director at the MS Society Scotland, said: “Today’s decision by the SMC is positive news for people living in Scotland with relapsing remitting MS, who will now be the first in the UK to have routine access to this drug through the NHS.

“It supports our fight, through our Treat Me Right campaign, for improved access to MS medicines for people across Scotland. “The SMC’s approval of Plegridy also represents a further step forward in the treatment of MS and improves the overall range of choice for people living with MS. “This drug is designed to stay in the body longer so it requires less frequent injections, which people with MS have told us reduces the discomfort and disruption to their lives. “Given its potential to improve a person’s quality of life we look forward to seeing Plegridy made available to all Scots who could benefit from it.”

The drug was one of six medicines that the SMC approved for use in the NHS in Scotland, including cetuximab, which was approved as a first-line treatment for bowel cancer patients where the disease has spread to other parts of the body. It was approved as part of new processes adopted by the SMC which aim to improve access to medicines for those at the end of life and with rare conditions.

Professor Jonathan Fox, chairman of the SMC, said: “I am pleased that this month SMC has accepted six medicines for a variety of conditions that will benefit patients in Scotland. “Two of these medicines were considered through our PACE process, and patient groups and clinicians gave powerful testimony on the benefits of cetuximab for bowel cancer and aztreonam lysine in cystic fibrosis.”

Prof Fox said the SMC was “disappointed” not to have been able to approve bevacizumab (also known as Avastin) for the treatment of ovarian cancer. He added: “Despite applying as much flexibility as we could, the committee was not satisfied it would be a cost-effective use of NHS resources.”

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A Message To The World, My World

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A Message To The World, My World

562440_10150895213902350_526362349_9771703_625620720_nBy @ShaunyGibson Used to be @ ShaunyNews This is a news page but below I have tagged in ‘AceNews Personal Stories’ I am a writer now, sports reporter, published columnist and freelance Journalist in the making and moulding.  So here goes. “Shaun, you have changed” is what I hear a lot these days. I am not special in the sense I am above anyone, nor am I below anyone, I am changing, events in my life have brought me here, free will, my choice, I lost people but in reality, they lost, how can I lose someone who didn’t like me? 😀 See the irony? I have reached a place many won’t or can’t. The power of the love I feel today and yesterday and as day turns to night then day again, perpetual motion makes it stronger. I feel alone in the sense I am being taken on a journey of love and enlightenment. I have yielded temptation and turned to the opposite, However, for tempted meaning enticed or attracted, the opposite effect could be repulsion. For the adjective tempted, there is the opposite un-tempted, or even discouraged, so I am going with ‘Self Control’ I am in a place now many don’t get but I don’t expect anyone to get it. I do however hope the 5 special girls in my life try and understand. 3 are adults 2 are my Daughters both below 5 years old, they will love me as Daddy no matter

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When you change and there can be many reasons for change, I won’t bore you with my reasons for change, let’s just say 2 things changed me, one is pain the other is medication. I am at the mercy of feelings I have no control over. Let’s just say I know who and why people tell me ‘I have changed’ I get it because I am that change, I became that change. My Editor Ian, my boss, he has helped me more than he knows, he is a very wise man and he has my back as I have his

When I was younger I so wanted to be a singer, I tried to learn the guitar so many times now my guitar has moved house and settled with a new family. Yeah we can still have a little fun, I wanted a stage, I needed to tell my story and I will. I am not a guy who will be mean to a woman yet I am made to feel this way, not by a person, by myself, but am I? I feel both, what is right? what is wrong? The answer is irrelevant because come judgement day none of this matters, but we don’t stop living knowing redemption day is coming, no, we live, breath, smile, talk, love and try and care, life is too short to be like this with each other, this is what I mean

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I live in a World now I feel so disconnected to I find it hard to define this World. We look and see evil all around us, yet individual acts of love and kindness exist should we choose them. Yeah, 1387537342we have choice, sadly many make choice out of not fear, but through the thoughts of others. I could say “Keeping up with the Joneses” but I would be wrong, yet close, people afraid to live and free themselves because a friend or loved one will judge, is that right? Are we to live worried and look to others for reactions to our actions? I don’t, I stopped being that guy. I became what I was indented to be. So I ask what stops you? Whoever you are, wherever you are. I asked for a stage once not long ago and I had 1,000,000 people, kind people, read what I write, that blew me away. In an instant I changed but the change is still happening.

When we lose we get something back in return. I will try layman’s terms more so for myself, your house gets broken into, you lose everything you have, but wait, your insurance gives you it all back, so in the end when we lose we gain something. I lost with the brutality of Satan himself but refused to bow at his knees, I took another path that has led me here, taken me to this spot in life, I will change more so YOU have the decision to make, not me. I talk to anyone I know or who knows me. I will go right ahead and change into what I am changing to, I don’t mean to hurt you, I could never do this, you said I changed, you were right.

1095045_10100432982666443_425973773_nPlease don’t deny me the change you don’t understand. I am love now. I left behind criminal life, I left behind idiots wanting to be the ‘The big guy’ This is not my place in life no more. I spoke with a well known guy a while back, he changed also. He said “Same tree, different leaves” and he was right

This, none of this is about me, it’s about ‘US’ and always will be. You are on your path, I am on mine, maybe one day our paths will meet instead of being parallel to each others.

I have my stage now, I have the audience I craved to tell my story. I am halfway through writing a book but have to change it often because the change in me is so fast and drastic, but it will be written in a way where I hurt nobody.

I live a life where as long as I know what I have done is correct, then I am happy. I have 2 little girls to help grow up and teach the same way I did with my two sons, they are amazing kids so my partner and I did good, now we must take these same values and bring two little girls up in a World where hatred, gossip, idle talk and more are the order of the day. My Job now as ‘Daddy’ are to make two wee girls understand choice is always there for them, then like their big brothers choice will be theirs to make, until that moment, we will help these two bundles of love grow. To you special 5 girls in my life, I love you for what you are not who you are, I love you, just you, I don’t pick and choose what to like or not like about you, I could but if I do I become someone else, see we have choices, love, smile, happy, yet often we, me included get lost in the middle of love and hate, many are stuck there for life, I am walking towards love and I don’t have a care in the world who judges me for choosing to be me 🙂 That is human instinct, I decided to leave that be, so can you. Just live and love and you will see a different world, a world I can see now, I am 41 now, not 21, I see through a man’s eyes but never looking back to talk to a confused kid who moulded me into the man I am today, why should I? He helped me get to this exact stage of my life and I love it, do you? x

Bryan Adams – Straight From The Heart
Via Bryan Adams on You Tube

 

Yesterday is gone…Let it go, leave it be, you can do nothing…
Today, if you smile, life is good….
For tomorrow we plant seeds today and hope they grow as we intend

Life REALLY is that easy, trust me

Shaun

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The Human Mind, Feelings, Emotions and Chronic Pain ‘If you have that’

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The Human Mind, Feelings, Emotions and Chronic Pain ‘If you have that’

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Dalai Lama

 

Picture1By @ShaunyGibson – Used to be @ ShaunyNews

When you sit and try to define your purpose on this Earth when you ask who and what you are, we all do this. The irony is many will dismiss that they do this, so go look at that image above again, see it? When you are in a state of TOTAL feeling, at one with yourself and life and the universe, you care. When you care you hurt more, it comes with the packaging. I see so many people afraid to ‘Feel’ because they refuse to take on the burden that comes with it, that would be hurt or loss, whatever, you know? People refusing to go the full way and be true to themselves in fear they might get too close to something. I am not afraid of dying, I am afraid of dying now and leaving my partner too 8ea41f8ff202634e3ff7445fd86ae973 (1)soon. To get to that way of thinking an ‘Event’ must happen. For me the event happened in childhood and guides me now as an adult, in reality it is amazing, many call it God, I just call it amazing, superb, a blessing, lucky and other such words. When I say this to a friend who knows I live in utter agony they say “How can this be, you are Disabled and in pain” To get something we must first lose something. It can be the death of a person, the death of a habit, to forget someone or something, whatever it is, you need to lose before you feel what many like me do and see our World for what it really is, it’s a total hell hole in every sense of the word, but we do as individuals show and see act’s of love and kindness from others, but to gain we lose first, we must lose to get, for me it’s THAT SIMPLE, I was lost for a long time, it was lonely and hard, but all the time my partner and 2 sons were there, now here I am, smiling, happier than I have ever been, why? Because I lose BADLY. So not much else to lose here, so I love what I have and understand that, the pain will do what it will, so I choose life

Song made from the an Irvine Welsh book, then the movie Trainspotting  For those outside the UK who don’t know this Movie 
Part 1 – The beginning

Part 2 – The end…. Both filmed in my City, Edinburgh, Scotland

We all deny our own existence, many of us are wide awake and watching, listening and learning, I am one of these guys. I had a friends, 17 years a friend may I add, she is from Columbus120380-118513 Ohio in the US of A. She said “Shaun has changed” She wasn’t being nasty or rude, far from it. But I felt in an instant ‘Friends don’t do this’ What this is, is she stopped being my friend. When I got my (YES, YES I AM TALKING ABOUT MYSELF, THIS IS MY PAGE, I WRITE THIS IS OFTEN WHAT I DO, NOT ALWAYS) 😀 Sorry I had to get that out the way. Anyway, when I got my Disability, Chronic Pain Syndrome, it then upgraded to the 22827c360539999fff306fa99d5f1775‘Devils Disease’ Fibromyalgia it took things from me, abilities to do things, loss of many things I would before do, friends, family, respect, love, it gives sufferers the attributes and feelings of Motor Neuron Disease and Parkinson’s Disease I could go on. But I am a great believer in Karma. As I sit here now I would say 80% of my immediate family don’t think I am disabled, the 20% would be my Partner, two sons and closest friends. Not one family member is ‘cool’ with Fibromyalgia at all, they say like my friend in the USA did “Shaun has changed” And it gets boring and you do smile after a while, but you learn to surround yourself with people who don’t talk about it and you just have fun with, my partner, sons, close friends and a few on-line also. It is ‘Normal’ I have friends from School, these guys are all super cool, they mock my disability, so it’s all good, I wouldn’t have it any other way. To one mate I am ‘limpy’ for example 😀 This is how I want my disability to be, sadly around certain people it is near impossible because THEY have the problem you see?

Starter pack for the judgemental or is it just 'mental' :D

Starter pack for the judgemental or is it just ‘mental’ 😀

1dd6d21b566548f6552659025a6749baSome of my friends are people I done football with, coaches, players, players families, kids families, for 15 years till I had to stop 5 years ago now, some from school, guys I knew inside out, guys I held hands with at funerals of their parents, friends who are in-fact blood, people who you treat as blood, like Family. These people I know and they know me. When the Disability hit most were all “Oh Shaun I am sorry” I was like “Don’t you dare, no sympathy’ and it was never mentioned again. They all get it now 100%. I can’t make plans with a good mate who is a chef for example, we are REAL good mates, very close, as close as a brother should be. When I cancel they are all cool. With Family no understanding at all. I am sorry I have to say this, the person who said it will read this. I was told over the phone by a family member “You are always in bed” and “You never go out” At first I was angry but them my anger turned to “They are the ones in pain, not me” So again glance at the image above quickly and read it again

See, when you lose things, and they keep going, doesn’t stop, it becomes your ‘Reality’ and you understand and respect this is the way it is. Once you get to that way of thinking you can moveimgres-5_med on, you begin to smile again and be at peace with yourself and as I say, surround yourself with people who enjoy life, people who laugh every day, people like me who demand we have fun. So I go back to what that person told me, I said above “They are the ones in pain, not me” is when I figured out the nasty hurtful words and other issues. I am 41 and I love to learn, I need to learn, I have an open mind on ALL subjects and I believe this is healthy and needed, both apply. So when I understood the other person, the person who couldn’t get why “I am always in the house” or “I am always in bed” (Neither of which are true, not that I care, I don’t judge others) I understood that they were the ones, sadly, with the problems. See I learnt not so long ago, people who attack others with words, words the target won’t hear, mock or joke about a person in their absence, they are the ones with deep rooted problems

220px-Two_Dimensions_of_Emotion.gifThe people I surround myself with are just amazing people, Partner, kids, mates, whoever but others I can’t figure out, so I stopped. I realized they were figuring me out, or trying to figure me out so I gave in, if a person can’t figure a person out or doesn’t get a certain person I say sever the ties, walk away, stop trying to 2nd guess when you ARE wrong about people. Why spend time and brain power and time trying to figure a person out? 😀 How sad is that? I leave a smile because I have only very recently figured this out. I take the smile back and feel sad for these people. Not many, really, a handful. My parter will say “I don’t and can’t feel your pain or understand your mind especially on medication, BUT I AM HERE AND I LOVE YOU” that is all I needed to hear from the woman I love. She judges nobody, in our 25 years knowing each other as kids, primary school kids to now as adults late 30’s and 40 ish I have never once heard her say 1 (ONE) bad word about another. So ‘Surround yourself with the right people’ comes into play, I am around a goddess in every sense of the word, make no mistake I am the luckiest lad this side of Mars for managing to convince my partner to spend the rest of her life with me, so for that, I am blessed, happy, relieved! and in love. When all is said and done, this blog was fun, it made me smile because I demand I smile, to be the opposite is to not live, so easy choice right? Well not really, I know people who have killed themselves who have what I have, I know people talking about, people who have tried to take their life, people who were laughing one day and dead the next, some hide away from the world, I guess I hide away from MY world, the world I was born into, but I keep hold of the world I created for myself, anyone is welcome in, just knock the door, I will put the kettle on 😀 My partner loves me medicated or not, people actually judge me for being on Dr’s prescribed medication and to top it off most of the people who judge take illegal drugs and get drunk and fight and cause trouble where ‘Sociably Acceptable’ alcohol is allowed to roam free and destroy people, can you feel the Irony? I do, it hurts, wait! I hurt anyway!

This ring true for anyone?

This ring true for anyone?

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People die, many are worse, but this is bad, real bad, it makes loved ones not talk. Agreed loved one? I have changed, this changed me, try and be nice aye?

So look one final time at the image above. Makes sense now right? I have defined a meaning to it’s fullest, words from the Dalai Lama, and that’s hard to do right? Some of us can ‘Feel everything so deeply’ We are the ones who hurt the most, who take bad news the worst, we are the ones when say? one of our kids move out takes it hardest. It comes with the territory. To be at total one with yourself, to understand you in any shape, form, health whatever is hard to do. But once you can see it clearly it opens up amazing things in your mind. The pain sucks for sure, the medication sadly is enjoyable as it takes the pain away. I am ready for almost anything, I can take almost anything and I can understand almost everything and I now understand other people, I see them clearly now, lost, pretending to be what they are not, not on purpose, it’s just their ways and I respect others ways. I guess what I am saying is, I respect YOU for what you are, even if I have no time for you or I don’t like you, whatever, I respect you. Respect me back please. So this is for all my friends I lost, who are lost, this is for the people like me who are defined by the images I added. I never ask for sympathy, I would however like certain family members to just walk into my home and say “How you doing today you fragile fool” 1st of January and look what I did, I will leave you with the image of how 2014 ended and how 2015 started, and I wouldn’t have it ANY other way, these are battle wounds, I look at all my bumps and bruises as that, my prize for daring to live for daring to laugh and have fun in life. My new years resolution is to sort my sleeping pattern out, I will try but I am not holding my breath,  for long anyway…. Happy New Year 😉

 I Dropped the hoover on my ankle/shin and ripped some skin and 'I think' tore some ligaments. No break.. But agony and bruised like a break

I Dropped the hoover on my ankle/shin and ripped some skin and ‘I think’ tore some ligaments. No break.. But agony and bruised like a break

Now go have one last glance at that image at the very top and see if you understand it now 😉

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Taboo: Pain, Love, Cowards, Hate and the Festive Period

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Taboo: Pain, Love, Cowards, Hate and the Festive Period

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By @ShaunyGibson – Used to be @ ShaunyNews

When an artist has a stage to speak to thousands of people they often use it well, I am lucky enough to have such a stage to share my art. Writing is an art and so is music, so read on. I am sitting at 3am here after 5 days of early bed and up early to being up all night on my own. Fibro is killing me. My skin is burning, my ankles and hips feel broken, my back feels snapped, back of my neck and shoulders are gone I can’t turn my head. I can’t type a lot, need to stop typing. Volterol Gel and I have a relationship but I don’t think I will meet its parents over Christmas.

Funny I say that there are a few families I didn’t and won’t see over Christmas. Does it hurt? Not at all, I am used to it. I changed when Fibro changed me. The images I have added to this article were not done by me, I don’t know who to give credit to but they are telling the story I try and tell, same as the song below

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Why?

I live an existence of loneliness. I have no need to feel lonely but Fibro makes my rules also the rules of anyone with Fibro. At this time of the year the last thing people with a Chronic Illness need is stress. See stress makes me angry and makes me sore. See the Shaun everyone knew when I was 25/30 years old is gone and put in his place is a man lost in a World where getting lost is real hard, I say that because often I want to vanish for a time, maybe be a fly on a wall somewhere. I smell rats very easy, I guess when we lose one sense we are given another, just something I have noticed on my travels as I get older

Often I think about just getting in my car and seeing what else life has to offer me, but I know I will come right back here to the people I love. I have not tried this ‘yet’ but I would be wasting my time right? If you read this and have Chronic pain life Fibro you will understand every word. Every word, sentence and paragraph will make sense. I am due medication so I am typing with free will. The thought of a new World scares me, the thought of dating scares me more. I have never lost in love nor asked a woman out as an adult, but something keeps asking me if I should try, anyway………..

Sadly the people we need to understand make our lives worse. They don’t mean it, in-fact they are blissfully unaware of what they do to us. I don’t hold a candle to anyone and judge it’s not my way. But are there days I feel like I want to escape this pain? Sadly yes, in a bad way, but I can’t do that, the pain would allow it in a heartbeat however so I ignore the pain. I know many who are like me, in agony, alone, sad, depressed, I am just agony with the odd visit from Sad, Alone and Depressed and have no other choices, the choice I have ends my pain and brings pain to others. We don’t get choice we get what is on offer every day. My reality on paper is good but in reality it annoys me. The dysfunctional nature of what I call family has been a constant but I am not alone, I don’t think we all need a Disability to feel the way I do. Lately I have become distant with a woman I thought I would never be distant with. She says things that hurt me, she speaks to others, surely knowing I get to hear about it and I do. When people are unhappy they tend to look past the love in front of them and seek it elsewhere, I do understand this, although I don’t agree with the principle. I believe talking cures all, be it good or bad, when we talk things happen, when we don’t talk bad things happen. So I hope talking starts soon, I am nobody’s fool, not even the one woman in my life I would be a fool for, I won’t be a convenient bank for nobody apart from my kids

Eminem Sing for the Moment – Lyrics
Via hahaudied7 on You Tube

 

At this time of the year I see images of my family having fun and it kills me, it’s a knife through the heart. I get angry with Fibro but I only get angry with myself and that is pointless. So do we give up? HELL NO. The last thing I would do is give the people who would like to see me fall, actually fall, I fight against the people who wish to see me down and beat up. There are not many, certain people should know better. The silence and cowardly acts say it all for me. People saying things to my friends who do tell me. Cowards who would fill their underwear should I stand before them. People who believe you can sit in safety behind a keyboard, annoy people like, say? Me and my friends, maybe family. That Cowards day is coming unless they understand the rule of life in Scotland

LET IT GO

LET IT GO

I have family and friends, some of my friends are hardened lads who keep me going forward, kick my back side when it needs kicked and I thank them for it, without it I would spiral into deep depression and this wouldn’t be a blog, it would be the last letter I ever write. I refuse to give these sad people the smile on their faces they so need from me. I will beat you, I will outlast you and I may even be behind you one day when you turn around, I truly hope you are understanding my language here because I hate trouble, I am too old and sore to care, but I won’t be a fool for anyone, yeah, I made this clear I hope

My reason for fighting on. Want to challenge me and them 2? Come, bring it, don't be no coward

My reason for fighting on. Want to challenge me and them 2? Come, bring it, don’t be no coward

Anyone to even tries to put a wedge between me and my girls will lose badly. I hope the right person reads this. I know this is a News Page on Ace News but this is news, it’s my news, it’s news I share with hundreds more, many are going through family and friend issues, so I share mine so people know they ain’t alone, people think I share too much, truly I have not. Fibro and it’s medication is a reality that makes you question so we must be sure before we get angry that we are onto the right reality. The old Shaun who did the bad stuff 19 years ago is always on my shoulder telling me if I return to my old ways the pain will leave me, after all the pain arrived the day I promised to behave, truly it did, it tempts me like the drugs I take to help my pain, it taunts me like a person hating you. I refuse to go back, but rest assured, should I go back I won’t be back here. I don’t think I can do this however, them two Princess’s above make me go on. I can’t let them down, I can’t give in to hatred of people who laugh at my ill’s. But then again I do have a phone. I write this to stop me doing the stupid thing here. So it’s off my shoulders and I smile and move forward. The old Shaun must remain silent, he can’t be allowed to run me….

…I can’t do that

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~~

Taboo Series: Disability, being alone and this ‘Spirit of Christmas’ issue

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Taboo Series: Disability, being alone and this ‘Spirit of Christmas’ issue

 

christmas-tis-the-season-jolly-facebook-timeline-coverBy @ShaunyGibson – Used to be @ ShaunyNews

I know, I know, It’s Christmas and I probably should be on my sofa chilled out with a beer after Christmas dinner. Well sadly I can’t because of pain and all that amazing Jazz plus I don’t drink. What I suffer from is Fibromyalgia and ‘Fibro’ doesn’t know Christmas day from Pancake day it just keeps giving pain that is unbearable, the effects of Parkinson Disease and also Motor Neuron Disease and other really harsh disabilities like MS and ME and more. So for me I loved the day, loved to see my kids open presents and be with my Son, his partner and my Partner with my oldest son coming late with his partner

Fibromyalgia makes this time of the year almost impossible for people with made up invisible not hurting disabilities, disabilities that people in your life know more about than your Dr, I say that as it’s what society tells us, I find it strange that you often have to be in a wheelchair before someone will understand why you can’t visit them, I know people are dying, I know people who have died and people who have lost so this is where my own personal guilt comes into play, but as I am told by almost everyone, don’t think this way. Here are our symptoms: http://www.fmnetnews.com/fibro-basics/symptoms

Pain All Over – People describe fibromyalgia pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Muscle groups used the most may hurt more. In addition, the severity of regional pains can make your fibromyalgia symptoms worse. The pain is unimaginable if you don’t suffer Fibro. This is the part that many can’t live with and we see suicide happen. The pain is very hard to describe, the best I can do is ‘All over toothache’ others have other ways of explaining the pain, for me all over toothache pain is what I feel. I feel like I have JUST broken several bones or snapped muscles, but it is only all day every day 😀 so it’s cool really. Many stay depressed and suicidal, I have been there and back, lost friends and family over it, all this  b@stard illness does is take from us all. 3% of the World’s 7 Billion populous suffer from Fibro. In the UK we grade it 1 to 10. Many are 2/3 just having pain in one area, I was 10 and left the pain clinic as it was pointless but I still help the pain team with sitting and speaking to Dr’s and Pain experts from all over the World at the Ashley Ainsley Hospital in Edinburgh, it has a few large halls that sit a few hundred or more. So although I suffer I spend more time helping others. It’s the old adage “To help others is to help yourself”

Fatigue – Exhaustion can be one of the most incapacitating fibromyalgia symptoms. You may feel as though your arms and legs are weighted down by concrete blocks and your body may be so drained of energy that every task requires great effort. I can be wide awake then *PING* Sleeping or sleepy. Heavy dry eyes, can happen an hour or 2 after a good sleep or at night. So too much sleep and not enough sleep. A pain it is, waking early and sleeping early is all our goals but if we are in agony and it’s 3am we have to just deal with it. For me this is the most annoying probably. I think if I fix this (Like now) for good I will live better. But I am at the mercy of Fibro

Sleep Difficulties – It’s not just about falling asleep. Repeat arousals prevent you from reaching deep, restorative sleep, so you wake up feeling as though you have been hit by a Mack truck. An overnight sleep study may show symptoms of repeat arousals, but a specific sleep disorder may not be found. For the past 5 nights I have been asleep early and up early, BRILLIANT!!! Before and I am sure it will come back I am up a day, down a day, I am missing half my life sleeping. That hurts when you miss family as I do. This is the single most difficult one that none of our families can understand and all we really try to get them to get.

Brain Fog – Trouble concentrating, retaining new information, and word-finding are common fibromyalgia symptoms that seriously interfere with daily functioning. You may be easily distracted and this symptom appears to correspond to the severity of pain (as though the brain is consumed by the pain, limiting your ability to perform cognitive tasks). This is the Parkinson Disease area of the disease. I can be talking and half way through talking *GONE* 😀 What I was talking about just vanishes, with friends/family it’s ok as they remind me, with strangers it’s embarrassing and I don’t like that bit. I tend to just not talk much now to strangers unless it’s email or type chat. Just makes it easier. This is the one thing (Pain aside) we all hate, I have to leave notes on my PC/Laptop/Phone etc for things like “Go to the toilet” or “Take Medication”

Morning Stiffness (Now Now 😀) – You may wake up to enhanced muscle soreness with fibromyalgia, but you probably also feel more stiff than usual. The cause of these muscle symptoms is unknown, but warm water and gentle stretching usually help alleviate them. I can’t move much for an hour after awakening. Often I need a cup of tea and medication before I can go about my day. Sometimes I just have to get up and walk like I am made of cardboard in agony. Also amazing fun, lol

Muscle Knots, Cramping, Weakness – No matter how much you try to relax your muscles, they may feel tense. Many contain rope-like knots called my ofascial trigger points, making you more susceptible to muscle cramping and weakness.The pain of fibromyalgia may also be a source of muscle weakness. These are very similar to Motor Neuron Disease, I get this 24/7, my hamstrings, calf muscles are worse but anywhere we have muscles/tendons etc sufferer friends and I get pain a if there has been a partial tear in any given area, go to the hospital, get a scan, all good. Very hard to diagnose us, but they hooked me up to electrical nodes and made pain happen by pulling and pushing my muscles all over, it showed increased pain activity so proving the pain was there

Digestive Disorders – Constipation, diarrhoea, abdominal pain, gas and bloating, irritable bowel, and nausea are found in roughly 40 to 70% of fibromyalgia patients. Acid reflux and a slowed digestion are also common. If you take strong pain killers it’s important to take anti-acid tablets or you will ruin your insides badly.

Headaches/Migraines – Recurrent tension headaches or migraines are present in 50 to 70% of fibromyalgia patients. Headache symptoms are usually rated as severe, occur at least two times per week, and often have a migraine component. This head pain is partly due to trigger points in the shoulder, neck, and head muscles. I get thumping headaches daily and medication does very little, laying down in bed can be the only treatment

Balance Problems – Balance confidence is greatly reduced in people with fibromyalgia. Walking patterns are altered and the odds of falling are increased. I have feel a few times now, once I slipped and knocked myself out in the hall, woke up in Dunfermline Hospital, great fun! lol

Itchy/Burning Skin – Your skin may look normal or it may have itchy red bumps similar to hives. Burning pain, similar to a bad sunburn, is also common in fibromyalgia patients. I personally get ‘Burnt Skin Syndrome’ where it feels like you are in an oven

Other Strange Symptoms? – Do bright lights, sounds, or odours bother you? These symptoms could be part of your fibromyalgia. Learn more by reading our article, “Is Sensory Overload Part of Your Fibromyalgia?”

The reason I mention all this is because it seems the only time of the year any of us with Fibromyalgia or any kind of Chronic illness get approval from family is Christmas 😀 I don’t understand this. But overall we see people being nice to each other at Christmas. My oldest son was in the drive through at McDonalds yesterday and paid for the people in the car behind, about £5 or so but that is the ‘Spirit of Christmas’ When he told me I was so proud of him, that is EXACTLY what I brought Dean and Ryan up to be, decent young men, men who will notice others around them and know love and kindness

Now I don’t speak for myself I have a few Facebook groups I run and this one here for people with Chronic illnesses allows people to get help and it helps me. Knowing we are not alone helps greatly, I guess in any situation? https://www.facebook.com/groups/699321140156812/ I notice every Christmas people are smiling, opening doors for you, letting you drive out of a road or wherever. The spirit of Christmas is true there is no argument because come January everyone turns miserable again. During the festive period everyone is a saint but 2 weeks later we all go back to the grind and hatred starts again. I have always asked myself why can’t we all act like this all year? I know many through support groups in real life and online who find it impossible to be happy, some people are just sad and it’s an illness. It’s like a heroin addict, we jail them, why not help them? This is what I am getting at. We as a species have times when we help and show love and times where we all turn miserable, me included but to be fair I do try to laugh my way through life, we are here once so smile and live for God’s sake 😀

Anyway, hope you all had a brilliant Christmas and all my friends in the USA are having a good day. It is past 7pm here in Scotland now so nearly over. For West coast USA it’s just starting, in Australia it’s already boxing day at that side of the World. I will sit and smoke a cannabis joint tonight as it is the ONLY thing that takes my pain away for any amount to of time. And as this is ‘Taboo’ series why is it people can get blind drunk, hit others, spread STD’s, cause havoc in city centre’s all over the World, lead to partners fighting, society allows this, society says ‘This is ok’ Yet if a person say? Family see me type “I will smoke a cannabis joint” I will probably be judged. This is how backwards our World can be. Our World is truly one big ironic pantomime for sure

Here, a song that I hate and a statement from a movie 😀

Wham! – Last Christmas
Via MASmusik100 on You Tube

Keep the Change You Filthy Animal
Via r2k3982 on You Tube

Shaun

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~~

Are our brains like computers with a ‘Recycle Bin’?

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By @ShaunyGibson – Used to be @ ShaunyNews

ok, stick with me here reader. I have just slept 31 hours after being awake for 29, this is the Causality of Fibromyalgia, there is NOTHING I can do to change it. When asleep I go past R.M Sleep And into a deeper state of sleep that science has told me is called ‘Paralysed sleep’ it means my dreams are so real my body could act out what I am dreaming, it’s way past sleep walking, so much deeper. When you see someone sleeping and their eyes are moving this is  as close to what I am trying to explain is. When we sleep and our eyes are moving madly we are in DEEP RM Sleep. I go to a place deeper than even my Dr or Pain team can understand. I have had it most of my life and when I am asleep I am not in agony, so I like to sleep, but not too much I want to see my family.

This is very hard to type but each time I sleep for these periods of time, 30+ hours I feel like I have been somewhere for a day, I feel like the dream was so real then I ask is what I am doing right now, typing on my PC with music hammering through my head on my Sennheiser headset any more real or unreal? Awake can be as real as asleep to me. Something that started as a kid. It confused me but I always spoke to one person about this, to this day I still speak to that person, my dad. He understands, if he isn’t understanding he will listen anyway. I say “When I am asleep it’s like I leave earth on a voyage into space” He says “I understand”

So what is this? What is knocking me out for 35 hours sometimes. I sleep so deep I can have both my Daughters jumping on me, my sons shaking me or Dawn playing loud music inches from my ear and I don’t bat an eyelid, I am too deep in sleep to be part of the living here. When I do awake for 20/30 minutes I think I am dreaming because the dream was so real

YouShouldTestThat-Ch4-ProcessingPower

I just awoke to a dreams of memories from my childhood, they were as vivid to me then as this is now. I remembered things my brain in an awake state could not. So I am asking, are our brains like a computer in a bigger sense than Science will have us believe. Where do these old memories awaked Shaun can see? Are they stored in some Recycle bin of info that never gets deleted?

 

 

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These four types of brain waves, and others discussed below, are important criteria that have been used to define four distinct stages of non-REM sleep. Obviously, falling into a deeper and deeper sleep as the night progresses is actually a gradual, continuous process, but these four stages still provide a convenient means of describing the relative depth of non-REM sleep.

Stage 1 non-REM sleep begins when you first lie down and close your eyes. After a few sudden, sharp muscle contractions in the legs, the muscles relax. Then, as you continue falling asleep, the rapid beta waves of wakefulness are replaced by the slower alpha waves of someone who is relaxed with their eyes closed. Soon, the even slower theta waves begin to emerge.

Though your reactions to stimuli from the outside world diminish, Stage 1 is still the phase of sleep from which it is easiest to wake someone up. In experiments where people are awakened from Stage 1 sleep and asked about their state of consciousness, they usually report that they had just fallen asleep or had been in the process of doing so. They also often report having had stray thoughts and short dreams. Each period of Stage 1 sleep generally lasts 3 to 12 minutes,

Stage 2 non-REM sleep is a stage of light sleep in which the frequency of the EEG trace decreases further while its amplitude increases. The theta waves characteristic of Stage 2 sleep are interrupted by occasional series of high-frequency waves known as sleep spindles. These bursts of activity have a frequency of 8 to 14 Hz and an amplitude of 50 to 150 µV. Sleep spindles generally last 1 to 2 seconds. They are generated by interactions between thalamic and cortical neurons.

During Stage 2 sleep, the EEG trace may also show a fast, high-amplitude wave form called a K-complex. The K-complex seems to be associated with brief awakenings, often in response to external stimuli.

People in Stage 2 sleep are unlikely to react to a light or a noise, unless it is extremely bright or loud. It is still possible to awaken them, even if they then report that they were really sleeping during the 10 to 20 minutes that this stage lasts during the earliest of the night’s sleep cycles. But because people go through Stage 2 sleep several times during the cycles in a night, this is the stage in which adults spend the greatest proportion of their sleep–nearly 50% of the total time that they sleep each night.

Stage 3 non-REM sleep marks the passage from moderately to truly deep sleep. Delta waves appear and soon account for nearly half of the waves in the EEG trace. Sleep spindles and K-complexes still occur, but less often than in Stage 2. The greater activity observed in the electro-oculogram (EOG) trace during stages 3 and 4 reflects the greater amplitude of EEG activity in the prefrontal areas, rather than movements of the eyes.Stage 3 lasts about 10 minutes during the first sleep cycle of the night but accounts for only about 7% of a total night’s sleep. During Stage 3, the muscles still have some tonus, and sleepers show very little response to external stimuli unless they are very strong or have a special personal meaning (for example, when someone calls your name, or when a baby cries within earshot of its mother).
Stage 4 non-REM sleep is the deepest, the one in which we sleep the most soundly. The EEG trace is dominated by delta waves, and overall neuronal activity is at its lowest. The brain’s temperature is also at its lowest, and breathing, heart rate, and blood pressure are all reduced under the influence of theparasympathetic nervous system.In adults, Stage 4 lasts about 35 to 40 minutes during the first sleep cycle of the night; it accounts for 15 to 20% of total sleep time in young adults. The muscles still have their tonus, and some movements of the arms, legs, and trunk are possible. This is the stage of sleep that accomplishes most of the body’s repair work and from which it is most difficult to wake someone up. This is also the stage of sleep in which children may have episodes of somnambulism (sleepwalking) and night terrors.

 

 

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The Human brain, like the wires inside a computer

 

Human-Brain

I know most of this people will read and think “Who is this nut job” But writing isn’t just about news or views it’s about life also. I see a World scared to talk, scared to open up, terrified that the World will see the truth and or know the real them. I say this is a great pity. For me I ask is the awakened World, this one, any less or real than the dream world many of us can reach?

I have put myself forward for RM Sleep dream programmes and hope to do them soon. It means staying in Hospital for a few days but I truly want to understand the difference between the real and unreal. I guess my whole life has been a quest for knowledge. Now disabled and at the mercy of Medication it would be easy to say “Shaun you are on Medication” Well my Medication wears off 10 hours into my sleep, so the next 20+ hours of sleep are real and pure and for me true and real. I was born 3 months premature in 1973, I had several accidents with electricity. I just dreamt them! I must have been 3 years old and I stuck a knife into the wall socket, knife broken, Shaun ok. I stuck a knife into a toaster, Shaun 1-0 Toaster. I was fine. I was pushed down 10/15 marble stairs by Bruce the Great Dane dog we had, I was fine. My Mum was running with me in the buggy, she hit the curb and I went flying head first into concrete, I am positive my Mum told me this story and she had tied me in. So many times I should have been dead or injured yet I was fine. So is this why I am in pain today? I need to know. I also have an unreal thirst for Religion the Bible and God, I believe in God but the rest I can’t. 20 years ago had I said that out loud it would have got a laugh, today I don’t care, and for me that is the trick of living, STOP CARING WHAT OTHERS THINK! The past is the past and we do go there, it’s human nature. What I am going through I have a few friends who go through similar or have went through it. I can testify to one thing, I have my mind, it is mind, I love my family and don’t care what people think 🙂 It’s a great place to be. It is like being free from society and it rules, try it

I can’t explain it this any better

Shaun

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~~

Killing Me Softly : Fibromyalgia & Chronic Pain Deaths

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I have always loved this saying

I have always loved this saying

By @ShaunyGibson – Used to be @ ShaunyNews Via: Lisa Lorden Myers

Earlier today I did this blog https://acenewsdesk.wordpress.com/2014/12/12/taboo-series-suicide/ and I posted it on my Fibromyalgia and any Chronic issue Facebook page for us all to discuss Chronic Illness, things that don’t kill you, they kill your spirit if you let it. I seen this here and I MUST share this page with YOU who have chronic pain or Fibromyalgia or any or any other “Can’t kill you” chronic Condition here> http://www.cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide Links and as much info on the “Devils Disease” as I could throw together. Not till I started my Group on Facebook for Chronic Pain/Fibro/Depression, anything Chronic, did I understand the level of suffering in others…

…..I AM NOT ALONE, AS I AM MADE TO FEEL BY FAMILY AND FRIENDS. But hey, that is no happy feeling. Reassuring maybe? Our biggest challenge as sufferers is almost impossible to the point we just say ‘Feck it’ and give up. I don’t want to give up on family/friends who don’t like ‘New Shaun’ because to me they are ‘New Them’ it is totally a 2 way street. I notice people look at me as if I am screwing the Government for money, facts are I receive not ONE PENNY from the Government. The only message I want to get through to my loved ones is “This is why I am in bed, this is why I am in a lot, this is why I don’t visit” and once we get past that we can all smile, love, have fun and move the FECK ON! I speak for many (And I tagged a few in here when posting) when I say this, all we want is UNDERSTANDING. Then we can all move on, simple really. But we see things that may not be there, we feel things that may not be there. But to define this is to define Fibro. Fibro is new, not many people know about it, not many who live in pain know they have it. STRESS = PAIN as well as other things with Fibro/CPS, I know in America for example you guys pay for EVERYTHING and that is wrong. Here in Scotland EVERYTHING Health related is free. Now Scotland has greater powers it will only get better. Seeing your Dr is Free, All your Medication is free, Hospital visits be them arranged or not are free, X-Rays and ALL operations are free. I could not survive in a country anywhere where the stress of not knowing all of the above was covered so it must be murder for you guys. My heart goes out to you all 

In Scotland  they grade you 1 to 10…You get asked 100 questions in a book you take home, each question is 1 – good or 10 – DEAD (I am joking, 10 is the worst) I am 10, do you know your score? Try it below

PLEASE SHARE YOUR RESULTS IN THE BLOG AND ON MY PAGE ALSO, IT HELPS US ALL!! http://www.anapsid.org/cnd/diagnosis/berne.html

Via Hunter Medicare Local on You Tube – Official Scottish Video from our NHS (National Health Service)
PLEASE GIVE THIS A WATCH PEEPS..IT ‘WILL’ HELP. Ask your partner, parents, family, friends etc to watch also.
Understanding Pain: What to do about it in less than five minutes?

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Knowing the signs are crucial, if we can save one life this article and you reading it was worth it

 

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photo_libraryBy Lisa Lorden Myers


Note: Lisa Lorden Myers, a CFS/fibromyalgia patient from California, is a well-known writer. For three years, she was the Guide to Chronic Fatigue Syndrome and Fibromyalgia at About.com. This article was originally published in Fibromyalgia Frontiers, the journal of the National Fibromyalgia Partnership. Lisa now runs the website
Living with CFS & Fibromyalgia.

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WE ALL HAVE THESE DAYS

On August 15, 1996, Dr. Jack Kevorkian reportedly assisted in the suicide of Judith Curren, 42, of Pembroke, Massachusetts. She suffered from chronic fatigue syndrome (CFS) and fibromyalgia (FM). Jan Murphy, another FM sufferer, also turned to Kevorkian for help; ABCNews.com later reported her assisted suicide in the summer of 1997. A recently publicized investigation in the UK revealed that just last year, Julia Revill, age 58, hanged herself outside her family home after becoming frustrated at a lack of medical help for her Myalgic Encephalomyelitis (ME). ME is the name used abroad for chronic fatigue syndrome. She had shown some improvement after treatment at the UK’s only ME hospital in Essex but had been refused funding by the local health authority for further treatment there, and her condition deteriorated. The loss of “one of our own” always hits hard. These and other reports sent shock waves through the FM/CFS community. Patients with fibromyalgia and chronic fatigue syndrome have an exquisite understanding of the pain, both physical pain and emotional anguish, associated with having a poorly understood, incurable disease. “When you start hearing there is no hope, no treatment, and no cure over and over, you lose your will to fight,” wrote Jan Murphy in a eulogy read at her funeral. “What most people saw of me was a shell of what was going on inside.” The FM/CFS community is certainly not alone in addressing the problem of suicide. Each year, about 30,000 people in the United States take their own lives. It is the 11th leading cause of death in our country and accounts for about 1.5% of all deaths in the US.

Suicide and FM/CFS

It is unclear whether there is an increased risk of suicide among FM/CFS patients, as compared to the general population. In 2006, Leonard Jason and colleagues published a study analyzing a memorial list maintained by the National CFIDS Foundation. They reported that suicide was one of the three leading causes of death in the sample, along with heart disease and cancer. The researchers noted several limitations to the study, including uncertainty about whether the list was representative of people with CFS and concluded “clearly, it is not possible to generalize the data from this memorial list to the overall population of patients with CFS.”

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The truth I just know hurts us all, Family who get angry with us…

However, there is evidence that chronic pain and illness put patients at risk for suicide. An illness like fibromyalgia or chronic fatigue syndrome, which is often doubted or neglected by the medical community, the public, and sometimes family and friends, can present unique problems. Patients with FM/CFS can become victims of isolation and despair. Secondary depression is a well-known symptom of FM/CFS and is common with any type of chronic pain. Sufferers depend on a variety of sources of support, including pain management, psychological support, and financial support. When one of these essential needs remains unmet over a long period of time, it is possible for patients to begin to believe that their situation is hopeless. In fact, a recent report published by Action for ME, a UK non-profit organization, revealed that 51% of survey respondents have felt suicidal as a result of their illness. Those with the most severe cases of the illness and who received delayed diagnosis and management were most likely to have considered suicide.

Responding to Suicidal Thoughts

How we feel..

How we feel..

Martha Ainsworth, founder and director of Metanoia, a non-profit organization dedicated to suicide prevention, describes the problem of suicide succinctly. She writes, “Suicide happens when pain exceeds resources for coping with pain.” There are many kinds of pain that may lead to suicide, and individuals vary greatly in their capacity to withstand pain. According to Ainsworth, you can survive suicidal feelings if you do either of two things: (1) find a way to reduce your pain, or (2) find a way to increase your coping resources. Both are possible. It is important to realize that suicide is a permanent solution to a temporary problem. The Journal of the American Medical Association has reported that 95% of all suicides occur at the peak of a depressive episode. For many people who feel suicidal, there seems to be no other way out. But suicidal thoughts are typically a reflection of distorted thinking caused by severe depression or even by the neurological changes associated with FM/CFS itself. When we are depressed, we tend to see things through the very narrow perspective of the present moment. A week or a month later, things may look completely different.

Warning Signs of Suicide

  • Talking or joking about suicide or statements about being reunited with a deceased loved one

  • Making statements about hopelessness, helplessness, or worthlessness (“Life is useless” or “Everyone would be better off without me.”)

  • Preoccupation with death (recurrent death themes in music, literature, or drawings)

  • Appearing suddenly happier or calmer

  • Loss of interest in things one cares about

  • Unusual visiting or calling people one cares about (saying good-byes)

  • Giving possessions away, making arrangements, or settling one’s affairs

  • Self-destructive or risk-taking behavior (alcohol/drug abuse, reckless driving, self-injury or mutilation)

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WE ‘ALL’ GET THIS…

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LOL..So true

Most people who once thought about killing themselves are now glad to be alive. They say they didn’t want to end their lives – they just wanted to stop the pain. According to Dr. William Collinge, Ph.D., author of several books including Recovering from Chronic Fatigue Syndrome, “If you can remind yourself that the suicidal thoughts or feelings are transitory and symptomatic of the illness, this will help you get through those times when you are in the bottom of the pits and can’t see any way out. Also, talking about your feelings with a confidant or loved one can help immeasurably.”Experts agree that talking about suicidal feelings is one of the most important things you can do. Talking to a caring and supportive friend or family member can be helpful, and there are a variety of helplines and support groups to whom people who are feeling suicidal can reach out. Severe depression, the primary cause of suicide, is highly treatable. If depression is recognized and treated, many suicides can be prevented. Anyone who has suffered with fibromyalgia or chronic fatigue syndrome knows that it requires a huge adjustment, not only to the illness itself but to all the consequences it has on our lives. Chronic illness is likely to affect the way sufferers live, the way they see themselves, and how they relate to others. With the present state of world events, many people are feeling additional tension, anxiety, or sadness. But suffering with severe depression may be unnecessary. If you or someone you know is having thoughts of suicide, it’s essential that you know you don’t have to go it alone. Suicide is preventable, and there are a variety of resources that can provide the support you need.

FAMILY/FRINDS/FIBRO/CPS – http://www.cfidsselfhelp.org/library/topic/Family+%2526+Friends

http://scopeblog.stanford.edu/2013/08/13/fibromyalgia-living-with-a-controversial-chronic-disease/

http://www.cfidsselfhelp.org/library/topic/Treatment+Options

http://www.cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide

http://www.patient.co.uk/forums/discuss/do-i-have-fibromyalgia-syndrome-257094

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Taboo Series – Suicide

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By @ShaunyGibson – Used to be @ ShaunyNews

As part of my ‘Taboo’ series I am going to talk about things in life people don’t want to talk about. Suicide is something that has hit many of us, be it a family member or a friend. I had a VERY close family try it a few years back, the person was ok. They came to my house a few days later, we hugged and cried. I jokingly said “Stay away from medicine cabinet” and we laughed. Maybe this is just the Scottish way, I don’t know, I have never left this Island.

I asked  the person ‘Why’ The reply was not what I expected. They smiled at me and said “It felt right, I felt ok, I felt comforted by something” And that was hard to take. I expected a disturbed warped mind out of control for life. But no, the person never tried it again, for a time we all worried they would but over time we relaxed about it. When I say this person was close, it’s a person I have known from birth who I look to as Super Human, a person you just wouldn’t think would do this. I have lived through several suicides in my 41 years from family and friends and people I knew through people. And the question we have is ‘Why’ I hope the comment the person above gave me gives others peace of mind if they have lost someone to suicide. It seems to always be the people we NEVER would have thought would do this, that do it. The strongest people, the strongest willed people. Ever noticed this?

So how do we spot it? How do we acknowledge a person is suicidal? For me it is near impossible, people in my past and present who have committed suicide or tried were happy, they seemed fine, people always say this. But then we have people in Hospital to stop them taking their own life. People who just don’t see this World as a viable place to be any more. All I know is the hurt it leaves behind lasts a life time, but we get through it, we learn to understand a person’s state of mind. And we can say “They are at peace now” Many in religion will say “They go to hell” Well I don’t believe this at all, there is no proof hell exists, but there is proof love exists.

Many say ‘It’s the cowards way out’ I don’t know if I agree with that saying. Thinking about it must take the strongest will a human being can summoned up to do this deed. They must be so strong to go through with it. I often wonder when people do it is there regret. Maybe it was a cry for help gone wrong, they didn’t want to die, they wanted to tell the World something, their World

I have never tried to commit suicide but I was close twice and been there more times. This was when everything I had was taken from me due to disability, things just kept going, every day, week, year, even now I have lost a person so close to me, I have known since birth. I have lost that person due to MY DISABILITY, MY ISSUES, MY WAYS. I don’t sit and cry about it, see it takes two people to see there is a problem and two people to understand it needs fixed. Drugs an Alcohol sometimes play a part, this is something we all must understand also. Don’t PRESUME someone you love is ok, ASK!

Suicide is a huge Taboo and I guess it’s best it stays that way. But we all must look closer, we must pay attention more. Teachers in high Schools must help also, they must look. We must look at depressed family and friends and always ask “You ok?” We must also be ready to listen to people. If we stop and ask and that person is allowed to tell a story we may stop that person committing suicide. We all have a part to play in the most taboo subject there is. We must show love, we must care, we must try. But if it happens we can’t live in hurt, the person who left us made the decision, don’t regret for life, we all have reasons to keep living and moving forward. If we allow life to do so it will kick us to the floor and keep us there, so we fight, we stay strong, we at least try and most important WE TALK! Talk to people you KNOW that will listen to you, this is a must

Suicidal thoughts have left me now, I accepted my new reality, it is so sad many can’t. So please, if you look at someone now, tomorrow, whenever and you think “Could they?” Please talk to that person.

Trust me, you can help so please try.

Shaun x

.Via Dominik Bieda

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Can we distinguish street drugs to prescribed drugs and alcohol?

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By @ShaunyGibson – Used to be @ ShaunyNews

I am on prescribed drugs and have been now for 15+ years, I have as an older teenager, younger adult taken illegal drugs so I know both sides of the picture. One thing I can’t wrap my head around is Alcohol. Alcohol society allows, but look what Alcohol does to town centres every weekend, sexually transmitted diseases spread, fighting, men hitting woman, I truly have seen it all. I see Alcohol as the worst because it shows more and more destructive powers than any other drug be that drug bought in the street or given by your Dr, I know alcoholics who are doing damage to their bodies but hey, IT’S SOCIABLY ACCEPTABLE!! This is the taboo nature of this article

I know a ton of people who take drugs that you can buy from the street, I know a ton of people who take the EXACT same drug given from our Dr’s, so simply I ask, what is the difference? I am on 3 drugs for life through prescribed drugs, Dydracodine, Tramadol and Diazepam and a ton more less lethal cocktails. Now these are prescribed and I have tried several times to come off them all, I managed a few months once but the pain made the decision in the end for me taking them again. So I ask, can we point the finger at some old lady on Tramadol the same we point it at someone buying it on the street for the EXACT same reasons? See not all Drs give these drugs when needed to people so the person is forced to buy from the street. 

Unknown Alcoholic

Unknown Alcoholic

It’s a taboo debate close to my heart because in the end society will judge and some judge while taking the drugs themselves. I HATE taking these drugs but have zero choice, do you take drugs via your Dr without choice? Do you buy them on the street because of your Dr? Do you drink because of depression? This is a very taboo debate here and one I already know not many will want to debate, but I believe it is a debate grown adults can have with or without conflict of inherent interest 

The Taboo nature of all this is ironic in a way, we all do it, drink, take drugs from Dr or buy in the street, so what is right and wrong? I also hate to see people sit in silence and suffer. I did this for so long and now I am honest about what I have. I have a Dr who researches Chronic Pain so I am very much one of the lucky ones, but I don’t feel lucky, odd right? I think the biggest issue with ANY chronic illness is family acknowledging it, mine don’t, but please no tears or poor Shaun, this is a dogma millions suffer and for them is why I have this group here https://www.facebook.com/groups/699321140156812/, to hell with them, really I mean it, if they can’t understand I don’t have the mental strength for their games.

What is your displeasure?

What is your displeasure?

 

I had a very close family member ask me a few weeks back “What is Fibromyalgia” and I almost went off on one, I had told this person 100 times I had it so he was at the wind up, he wanted a reaction, but I am better than that. Are you?  See people are all too happy to judge until Pain, Depression, being an Alcoholic, buying drugs from the street comes their way. I know MANY who drink and are they Alcoholics? Well I don’t judge so I guess we leave that to society as usual to disguise what is right or wrong. The worse thing in all this is people suffer in silence. I have my partner, my 2 sons and my Dr, my Dad, THEY LISTEN! Nothing more, all I need is people to listen. What about you? You keep it all inside or do you need people to listen? I am talking to millions of people here. It is an outrage in the 21st Century that this is all still so Taboo, this is part of my ‘Taboo’ series I NEED to write about. I never judge people, how dare others judge me or others. We are not here to pre-judge others but sadly people do it. My own, hold, I have a family member who said “You never leave the house” and “You are always in bed” I JUST WANT TO SCREAM “I HAVE NO FECKING CHOICE” But I don’t because many of you will know stress = pain.  So I let it be. I have lost family, same as many I speak to in the World, and that is a crying shame, these sad people who judge, these cowards who try and gain a reaction from all of us, if you have a chronic illness I know these words make utter sense

For now…….

Cheers 

Shaun 

I have a video here, Russell Brand, talking drugs, he is a BRILLIANT man, spoken to him once, watch if you can

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