To Blog Or Not To Blog – Disabled Scottish Person, Please Read On…..

1.


Recently I have decided to come off all medication for my Fibromyalgia, Dihydrocodeine, Tramadol, Diazepam and Morphine as the medication does nothing and I am finding no medication is the same pain as with medication. So basically I am addicted to medication I don't really want nor need. I closed my Face book down and that will stay closed. I am not the biggest fan of social media but when I delete things a day later when my state of mind is different I think "#, why did I do that" And always with stupid things like this I am aware it means nothing really, nobody is hurt, nobody is offended, it's just the mindset of the disease doing things I don't really have control over. Many see disabled people working, doing sport and presume everyone can, sadly with what I have all the fresh air and exercise in the world actually makes it harder, this is what I wish people would get. Family say "Exercise" or "Get our and get fresh air" I want to scream "IT MAKES ME WORSE YOU BREAST" or words to that effect



I so enjoy writing, when days are hard I stick on my Sennheiser HD headset, blast music into my brain to alter the brainwaves and write. I was writing in 3 places and it was too much, something had to go, something had to change. The 2 days since I put this blog into 'Park' I have had very little medication and just allowed the pain to knock me out, it worked as I slept about 35 hours on and off. Here I am on a freezing cold Tuesday night wishing I hadn't told Ace News I can't write for them, wishing I hadn't said to another great lad at TCN I wasn't going to write football either. So I guess tonight I am annoyed with this disease, not myself, just this brutal illness.



We sufferers of this invisible illness suffer from day 1, we lose the ability first to work, then fun things we did go, mine, as you know was being a football manager, then family and friends go and from then on in we just lose things and our family think we want sympathy, this couldn't be further from the truth. We just need family to understand why we don't visit any more, why we don't call as often, that, for me is the worst part of this disease. The pain is 100% brutal and unfair, it's unfair on my partner, my 2 sons and my 2 daughters firstly then my family and friends. I have no control, I am 41 years old and had to endure this 'Devils Disease' for 17 years now

I get easily frustrated when I write things, I write alternative news 8 times out of 10. I write how the USA is turning into a fascist police state and it frustrates me when American people won't debate it but I understand why you all don't, you live in a country where if you say the wrong thing you get a knock on the door, it's a horrible country to live in I keep getting told, if truth be told I would visit and do a tour should I ever be able to leave this Island I live on close to the North pole. I get frustrated when my kin, Scottish people don't understand why we need to get Scotland out of the English War Machine, we don't want to be a part of it, sadly we have fools in our land in Scotland same as any other country. There are only 5 million of us, 3.6 Million voted in the referendum with 1.6 Million voting 'Aye', but 2 Million voting 'Naw', we are, as things stand in charge of much of Scotland, we control our own things in some ways, we have different laws from England, we will free one day, but we need the fools who listen to Tory and Labour lies, in many people's eyes, Labour who used to be for the working man/family sided with Thatcherism in the form of the Tory party, it is like your Wife having sex with your Dad, this is how it is for Labour.



So I think my Country will at least have home rule in 2 years, free within 5 years. People in Scotland need to get to grips, many think it's only the Scottish leaders, be them politicians, police, media and even Football's governing body, tell lies and side with whoever in whatever debate, Scotland this is a Global thing, go speak to Americans, Russians, Chinese, Australian, it's a World thing. Many here think it only exists in Scotland, that inequality comes only in Scotland. This is an amazing place to live, if you want a life of solitude Scotland is a country, one of many, where you can literally go live in the middle of nowhere, nearest neighbour 50 miles away and just enjoy life on your own, I kinda did this, when I am older I will be that person who's nearest neighbour is 50 miles away, it's been decided in my home at the highest level :-)

So the title says it all. I actually love to write in the sense I get crap out of my mind and onto what I see is a piece of paper the World can read. I am close to 1,000,000, that's 1 Million hits but I have closed Shaun'y News down twice now, I am a MOMENT guy, I act in moments, some I love some I am like "Shaun FOR THE LOVE OF GOD" I am my worst enemy often.



Being aware I am my worst own enemy is healthy I guess. I just hate myself when I let Ace News and TCN down because my illness gets the better off me on a day. I stress little but when I stress the pain triples and I act on impulse. I spoke with my partner today and she said "Writing allows you to not get cranky with the kids or annoying" so she supports me writing, so I have to be thankful I have her right here to say "It's ok to not be ok sometimes" knowing it's ok to not be ok is actually ok, my partner cuddled me earlier today and said this, so with all the pain and annoying (To me) stuff that happens! HOW LUCKY AM I?! Seriously I complain a lot but in reality I am one fecking blessed man. OK, I have pain, it makes me stay in bed for days on end, it makes me want to go back to Old Shaun

2.


But I have people under the roof I sit under now who speak to me as just Dad or Shaun, I have people under this roof keeping me from doing things of old. My 23 year old son is learning about what WE all go through and he has started to talk about my illness, leading to us talking his illness, he suffers seizures ‘Touch Wood’ (A term we use as a superstition, touching wood signifies we don’t mean something or hope that thing doesn’t happen) So I have 2 people (3 Really) that keep me smiling right here, my two Princess’s Chloe (4) and Courtney (5) make me laugh, smile, cry and it is a privilege to be a parent I believe, we get to watch life being born then love them to death, teach them and in return they give unconditional love back, it’s amazing being a Dad to 2 little girls, it’s always fun, never dull, so I am lucky, even in pain, I am lucky. I have mates who make me laugh when we are away in a car up to ‘God only knows’ I am a ‘Lad’ I am always up to stupid stuff, having a laugh with my mates and some family I enjoy being around, one in particular who lives over the bridge taking us to the Highlands. So here I am writing freehand, not thinking, just typing what comes to my mind. And in reality, that is the reason I love to write. I am no writer, I am same as you, just someone doing something that is decent fun. All this blog was is me typing and talking to myself basically as I type here, I just opened a Word document and started to write, so that was it Please don’t say “Glad to see you/Glad you are writing/Hope you are ok” or any of that. It is what it is, this is the existence for many of us, I am one of many, it’s just the way the dice roll, it’s the hand we have been dealt. I didn’t write this, in fairness, just for myself, I am aware others are out there reading this but unable to say what I just did. I have a message for you, YOU CAN!! Use a made up name, whatever, let it out, let go, allow it in, help yourself because people that don’t do that end up doing the wrong thing, making the hardest call of their life and stopping, ending it, refusing to take life any more. I am fine, others are not. Talk, feck what others tell you, I do! Tell your story if it makes you feel better, don’t be a society person, just be a you person, do things you like, things that make you happy, to hell with what family, friends idiots on-line think, when we succumb to this stupidity we allow the World to dictate our being, no chance of that here, I own my World, I control my World, I decide who is in my life and who is not. How many do the opposite and end up unhappy? I am just saying, feck what society tells you, to hell with people, don’t be a sheep, be a fox, be alone in your ways without pushing people away, we all push people away in life, I have recently, but I am man enough to pull them back in. Are you…………..?

It was great to read your thoughts my friend. I empathize. I have chronic fatigue syndrome, which basically means my life is all about managing my energy or I'll get sicker. I work at a desk job, 8-15 hours a day, which isn't healthy.

I try to eat healthy and exercise and walk. But I understand too about saying no to friends, family, volunteering, activities, because to do those things means I'll be exhausted and then can't function well at work. And of course, I have to work. My life has gotten smaller and smaller as my circle of friends and activities has shrunk over the years.

No one, but no one understands in my family or my friends. They think I'm lazy or negative or hypochondriac -- despite all I have been able to accomplish in my life in terms of education, family, career. I've got a "diagnosis" if you will from a well respected medical center after many tests for "other causes." And I truly believe CFS is from our polluted world, chemical overload, unhealthy food and water and air. Somehow makes the immune system go haywire perhaps.

Unlike you, the pains I have are only from being stiff from sitting so much for work and not having enough proper time for all the exercise/movement my body seems to need. I can't imagine what you have each day.

Be strong. Be grateful for what you do have -which it sounds like you are. And write write write!!

One of my dreams is to make it to Scotland someday. Enjoy it for those who can't be there!

Sorry to hear about your troubles. At least you're not letting it get the better of you and you have people to lean on. Have you considered using a ...herbal...remedy, if you know what I mean? I know it helps me with my pain. Nothing else does.

a reply to: Galadriel

I am sorry you know the loss of Chronic illness.
The pain we take, I don't fight that no more.
But we ALL fight family. We look ok, and people presume we are lazy and 'At it' for Benefits or what have you.
I can't work and don't do benefits here in Scotland even though they offer me them. (Long story)
I have a ton of friends from over the years with what we have and every single one says the same about family.
I have written about this for 2 years on my page (Link in Signature) and always 'Family' are the hardest part.

I feel for people in Countries where getting to see a Dr and get medication is a fight in it's own.
Here everything is fast and free.
I collapsed last week, knocked myself out (Long story)
Within 10 minutes of my parter phoning the Hospital, a Dr arrived.
We have Dr's on Motor Bikes here. When the traffic is busy, and it is as I live on the ONLY road to the highlands in the East of Scotland. He was there for 20 minutes. An hour later I had my own Dr in the house, prescription in hand, then medication in my hand an hour later. So 2 hours after I fell I had seen 2 Dr's and got medication, all free. I feel REAL guilt for other countries who should be able to afford this but don't. Scotland is so small and the Scottish Government break away from London laws. England pay £7 (I think) for each prescribed item, many in Scotland who have a life illness this would ruin them in a financial way.

I am at ease over the pain, I accept it. I always write these to others also. I think it's important to vent, to get it out and see if people reach back at me. I am reaching out here, and you reached back...

Very cool
Respects..
Hope you have a pain free day soon

Shauny

a reply to: Skid Mark

Thanks a lot.
Yeah I smoke hashish my friend.
My Dr's idea, lol. The laws on Hashish in Scotland are very relaxed, not as much as Holland, but close.
I don't smoke grass/green, it sends me up the way, the hashish relaxes my body and mind.
We have 2 Daughters 4 and 5 so I only smoke after 9pm usually, would be unfair on them.



As for other alternative medicines, I have tried Chinese, Indian you name it.
I have boiled wood in water and drank the end result. I had to lick my dogs bum to get the taste of the alternative medication from my mouth (Sorry I am Scottish Can't help it)

I am to believe Hashish in some form will be in Scotland (at least) with in 2 years and I am on the list for 'Clinical Trials'
I was part of a 2 year study here with my old Dr from the other side of Edinburgh where we live 5 years ago, he is now a good friend. We found 9/10 people had a bad 'Childhood Trauma' Where I write (In my signature) I have written about this a lot and many have spoken to me in private with their story of childhood trauma to cause Fibro/CPS.

Scotland is building the world's 1st Pain hospital, no in-patients yet to study. It is 50 mile west in Glasgow, I will be one of the first I hope to go through for a week to stay, be a lab rat then go daily or every 2nd day to help find a cure or more comfort for all suffers.

Thanks my friend

Article on Hospital:
Worlds First Pain Hospital to open in Scotland

a reply to: shauny If writing and venting on paper makes you feel better then do it! I have back pain, fibromyalgia and depression. I read, sew and container garden, I try to take care of my family. It is hard. I was always so active and stubborn when I was younger, probably why my spine is so bad. I haven't been able to hold down a job for 12 years and have to fight like a cat with my pain doctor for medication. I dont want to take these meds but I really dont have a choice, surgeon said I'm not a candidate for anymore surgeries because I wouldn't be able to bend over at all. I also have no discs left in my back, extensive scar tissue, bone spurs, and osteoarthritis, sucks to be me. My family tells me to shut up and take another pill. Oh well. My husband is a truck driver and gone 4-5 days a week. I am glad you have found something to do that you enjoy and that helps you. Dont get mad at yourself if you slip sometimes and feel sorry for yourself, we all have limitations. But it does seem to me that you have found those things to do that keeps your mind occupied. You are a very good writer and your feelings come thru in a way that is easy to comprehend for your audience. You have the love of your family And free medical! Life is good!

a reply to: lost in space

When I write things like this, at the back of my mind Guilt comes hard. Many suffer worse and I am only in agony every day. People are dying and I can hold my kids.
I am sorry you know now just the pain but also what it does to a family and to the bank account depending on where we live. If I was in England I would have to pay £7 (I think) per Prescribed item. I know many people through groups I am in (Real life and on-line) who are killed by the fiscal nature of this or any Chronic illness. The common them is 'Family' I don't know a sufferer who hasn't lost family. The reason my partner and I are still together is we were friends at 10 years old, we are friends 30 years later, this does help. I know people who leave partners with Chronic illness, sad, very sad..

Like many I have a way of dealing. I let the pain in, pointless fighting it I guess.

Life is good, I am blessed.
I hope you have a pain free day soon

Thanks for your sweet reply
Shauny

a reply to: shauny

Shauny mate - what can I say? I read your blog and your link. Jeeso, you've got a lot to be proud of, you're a fighter all right.
It's so unfair that after going through everything you've been through you're living with chronic pain too. And you still take the time to write here, and share your thoughts with everyone.

I agree with Dawn, it's ok to not be ok and the more we stop beating ourselves up about not being ok, the more ok it gets!
Oh, and by the way...it's when, not if..remember? We will see independence in our lifetime, I'm sure of it.
You're a really good writer, you have a real talent for it.

Thanks for sharing, hope all is good.

Alba gu brath

B x

a reply to: beansidhe

Thank you..
Often I have to write to stop me going backwards.
I don't think I am a good writer. People just share life, all this is my friend.
We all have a fight, something to test us, this is mine and I will win.

Freedom arrives soon


Alba gu brath

I have to do this now below