The Joy’s of S & A

This wasn’t  what I  wanted to right about ,but it is what I need to right about.

STRESS & ANXIETY

Today  I will have to sit in front of a non medically trained person who works for the government, at the jobcentre. The thing is, they will decide if I am going to be entitled to employment support allowance.

WHY?

Well recently I  was released from my role as an administrator for our wonderful NHS, a job I loved, but a job I was no longer able to carry  on with my duties, due to y prolonged ill health.

So what happened was, that in June last year my health took a bit of a nosedive, initially caused by an adverse reaction to one of my medications, as a consequence of this I was signed off work by my doctor.  Now although the new medication seems to be working with no side effects, my health has not improved to to point it was, and so after a yearof being signed off work. I have had to leave my job.

I live with several long term health conditions that I live with (Fibromyalgia, type 2 diabetes, asthma, Osteoperosis, Oesophagial spasms, an egg allergy, and an auto immune disorder) I also have mobility issues and I’m  classed as disabled.

These conditions have been diagnosed and confirmed by doctors, consultants, and specialists  in there fields.  I have nowbeen signed off from working indefinitely.

For me this is history repeating itself, as this scenario happened to me 7 years ago, only then the doctors told me it was unlikely I would ever work again. For 4 years I didn’t work and I didn’t receive a penny in benefits, and didnt receive any assistance or help from our welfare services.

Then out of the blue I was given a second chance and returned to part time employment, I worked at this company for a year, it was fantastic, they were very supportive and understanding about my needs, but towards the end of that year, my health started affecting the physical side of working again.

But as they say when one door closes another door opens, and that’s what happened, I was offered the job with the NHS.

Fast forward to today. The appointment

I have filled out the 20 page questionnaire, I have my 3 forms of identification, I have an up to sick note, I have my final payslip, my P60, my P45, proof of the statutary sick pay I  received  whilst in work, and proof of my company pension. I have stress & anxiety levels that are through the roof  and are making me feel shittier than I normally do.

What don’t I have?

I don’t have confidence in this government department treating me fairly, I don’t have confidence that the person interviewing me will carry out his duties without bias and prejudice. I have no faith or trust in the system that is in place as a safety net for those who need it.

The reason  why I feel this way,  well in all my dealings with this government department over the last seven years I have been treated badly, they made me feel like a scrounger & a fraud. Even though the doctor’s  and I know I’m not. I have been made to feel like I am begging for what I am entitled to, after all I have paid into the system through my national insurance contributions over the last 41 years.

I hope I  am wrong, I shouldn’t be getting  stressed or anxious about what may or may not happen, I know that I shouldn’t allow what ifs to affect me so badly. I should be positive and confident, but I  can’t and until this appointment is over I know these thoughts and feelings of dread will not change.

Take care,

Gary x

Rant over.

 

Writing – Changing

The purpose of this piece is for me to get used to writing, so hopefully the more writing I do the better I get. I’m sure there are many spelling mistakes and grammatical errors as you read through this but this is about learning and finding what kind of writer I’m going to be, so all of your comments will be of great value. In September I start a 10 week creative writing workshop, hopefully, I will have figured out how to use the spelling & grammar checker by then. So please be kind, be brutal, but above all please be honest about what you think.

Title:- Changed

Last weekend I started reading the biography about an Idol of mine, comedian & Film star Robin Williams. Reading it brought up emotions of sadness because he’d died & happiness because he made me & the world laugh. The very first time I saw Robin Williams was on the tv show Mork & Mindy, it made me laugh so hard I would have tears rolling down my face.

In the book many people were saying he was a comic genius, a legend, a star, I think he was just bloody awesome. He was one of those actors whose films would always cheer me up, they would always make me smile and laugh especially when I was feeling down. In the book people he performed with said he was an amazing guy to work with, he was always trying to make people laugh on set, always willing to help fellow cast & crew out & always helping those in need & those less fortunate. One example of his compassion reported that he would always insist that any of the films he worked in must always hire a number of the local homeless population to work on the set.

After reading the introduction and all the comments from his friends, colleagues, and family,. It moved on to tell his story. It started with at the end of his story with talking about his death at the age 63 & by the end of that first page I could feel a lump in my throat & could feel tears welling up also. I remember feeling the same way when his death was announced back in 2014. It made me think about a film I had recently seen; it was a documentary called RobinWilliams – Inside My Mind. It had its funny moments but was filled with heartbreak & sadness, he was an amazing human being, full of energy and laughter, but it showed he was also just a man who had his own demons & flaws such as drinking, drugs, anxiety & depression.

I got a bit distracted again at this point & started thinking about my own demons, my own long-term battle with my crappy health, depression & anxiety. So I decided I wanted to get my own story down on paper to bare my soul so to speak then share it on here.

Here we go.

I’ve pretty much had poor health since birth, though my battle with depression & anxiety didn’t start until much later(obviously). In fact, it started around the same time as the bullying I was experiencing did. I was about 11 when the bullying started firstly because I was rubbish at sport & didn’t feel like I fit anywhere, then it got worse when I got my girlfriend who was of Sri Lankan parentage even though she was born here. the verbal abuse from both British Asian kids & White British kids was equally as bad & it even got physical a few times. Going through school was the worst for verbal.

I was 13 when my family moved from South London to West Sussex, not long after the move, my episodes of depression began to get more frequent, I hated the countryside back then, I hated moving away from my Grandparents, I didn’t like my stepfather and I missed London, I became a right little shit (so I’ve been told). Around the age of 16, I started drinking and smoking, not a lot but I started, then after I’d had a teenage meltdown, I was sent to live My Father & Stepmother for 2 years by the age of 18 my drinking & smoking had become very heavy in fact I had turned into a drunk but not an alcoholic. It was also at this I met a girl who would eventually become wife even though over the next 5 years I was an absolute shit towards her, yet she has never gave up on me (madness, even I’d given up on me), but this year will be our silver wedding anniversary,  25 years ago was also when I also cut down on the drinking.

Then 13 years ago I quit smoking & drinking altogether which ended up being a stroke of luck because 6 months later, I was made redundant from a job I loved, the company was closing down and moving back to the good old U.S of A, one good thing to come out of this time was the bullying was finally over.(I was bullied for many different reasons over the years, in fact, I think I must have had the words bully me written on my forehead).

About 18 months after the redundancy a tragedy occurred that affected me badly. There was a serious road traffic accident. On my way into work at  new job one morning I came upon a serious road traffic accident, there were 3 of us that stopped to help the people in the 2 cars that had collided, we had to try to get the man trapped in the first car out,  one of the guy’s broke a rear window so I could crawl halfway into the car to hold the trapped man’s head steady, talk to  him and stop him from hurting himself even more, at the same time the guy who had broken the window went around to the other side to try to gain access through the other door but with no luck, the third bloke stayed with the other driver trying to keep him calm.

The Police, Fire Rescue, and Paramedics were pretty quick, I explained to the paramedic what was going on with the injured driver whilst I had been with him. The police asked the 3 of us that had tried to help to wait by our cars to be interviewed individually. About 20 minutes after our statements a police officer came across to us and told that there was nothing that could have done to save him, that he had died from his injuries. He advised us that we should all go home due to the shock of what had happened. We drove off & the next thing I remember was sitting in my van outside the house. As I opened the front door I saw all the dried blood on my arms and hands, I looked up saw my wife then I just broke. I can’t remember how long she held me for, but I am so glad she hadn’t left for work. For the next 6 months, I couldn’t leave the house, I couldn’t even open the door, I’d also lost my job & it took me a long time to get over it.

For the next 18 months, I spent my time doing a lot of volunteering on conservation projects. I worked outside with a group of people with similar health problems, it was exactly what I needed to get better, getting back to nature and working with my hands again was the medicine I needed & it helped me find myself again, it helped me recover enough to look for another job, things were finally getting better.

8 years ago my physical health started to nosedive again, I began falling over at work, I was in constant pain, I was becoming forgetful & at times confused. Now, those of you that knew me back in my drinking days are probably thinking, hmmm sounds like you’re still a pisshead Gary, the problem was I had been off the sauce for 12 years(not fair). I saw the GP who sent me to a Rheumatologist who in turn diagnosed me with Fibromyalgia. None of the pain killers they tried me on came even close to helping with the pain. The GP then sent me off to see a pain specialist. I was told it was unlikely I’d never work again, that my life as I knew it was over & I would have learned new ways to do things I was then released on medical grounds from the company I worked for.

After all this I started to feel that I was losing control of my life, that nothing was under my control anymore, my anxiety & depression were rising again, my physical health was getting worse, there seemed to be very little out there to help me cope with what was happening, I started attending CBT courses, 3 in fact one after the other to try and help me cope, but it just wasn’t for me. My mental and physical health were spiralling downwards & I was having some very dark thoughts. I was getting really scared.

Then on a visit to a medical drop in centre I overheard 2 old dears talking about a free NHS service called the Expert Patient Programme which helped people living with long term health conditions to live better. I had never heard of it before but thought I might as well give it a go, if it had worked for them maybe it could help me. So when I got home I contacted the service and got myself booked onto the next available course near to where I lived. I wasn’t very confident before I went as nothing else had worked for me, Then I thought what did I have to loose? I turned up for the first session of the 6 week course, it would be 2.5 hours 1 day a week for 6 weeks. As I walked through the door I remember thinking, what the hell am I doing here? But as the course got going I remember thinking it felt very different from anything else I had done & asked myself again, is this really going to work for me?

After all the introductions we learned that the tutors were also living with their own long-term health conditions, they had all been participants & completed the course themselves. They said they’d gotten so much out of the course they decided to become volunteer Tutors, I mean volunteers, wow that really struck me. Another thing was they talked to us, not at us, they were engaging with us, not judging us but asking us to give it a go, after all, they were living proof that the service worked. So after I left that day I decided I would go back for week 2.

The things the tutors were saying to us made sense, the coping techniques they demonstrated actually worked. The tutors came across as positive, compassionate, and understanding people who got us, they really understood what we were going through, it showed us we were not alone, and it showed me it was ok to smile and laugh without feeling guilty. The change in me was massive and quick, by week 3 my wife was telling me she couldn’t believe the difference the course was making, I was more confident, positive & happier, that I was talking and laughing more. So on week 4, I plucked up the courage and asked if I could become a volunteer tutor. Now public speaking was some really scary shit for me, I knew I would be well outside my comfort zone.  But 4 months later I finished my training and 6 weeks after that I started delivering my first course. I loved it. Since then my health has had many ups and downs.

But the main thing was I had my various families to support me, there was my wife and 3 daughters, my brother and his family, my work family & my fellow tutor’s & participant family. Then 2 years ago a dream came true for me, not only was I a volunteer tutor but I was also working as the Expert Patient Programme Administrator, it was a job I loved & life was good. Then 11 months ago my health decided to nosedive again & I was placed on long term sick leave. I’m still off sick now but in 3 weeks time, I will be going through the process of being released on medical grounds. This time though things will be different as I am far more prepared this time. I have been looked after supported & helped by my friends at work & my family at home, which includes my lovely Dog Dora.

I’ve started making a long term plan, which is to become a writer, what type of writer I will be I don’t know yet, but I’m enjoying the journey now that it has started, with all the reading writing and blogging I am doing these day’s I know one day it will happen.

There really is no way to thank all the people in my life who have helped and supported me over the last 8 years, but I love you all because you have all helped me arrive where I am today.

So now it’s on to the next chapter fo me although I will still be looking forward to coffee with the boss and volunteering in the office with my colleagues when I can. There’s no chance of work getting rid of me completely I’m afraid. The Service is known as EPP for short but is also known as the Living Well Course. If you like the sound of it & fancy giving it a go, make the call you have nothing to lose & everything to gain, it worked for me after all. I’ve written this in the hope that my story may help some of you.

Take care

Gary

Ok, so I am going to go a little bit Hollywood now &  thank some of the people who have helped me get to this point in my life.

So First to my Mum who never gave up on me even though I could be a right little shit(apparently), Thank you to my long-suffering wife Tracey, to my 3 yes 3 beautiful grown-up daughters Sian, Keri & Erin who’ve put up with my bad sense of humour on a daily basis. I’d like to thank my workmates Karen the Boss & Natalie (aka Danny Dyer) & Sue the co-ordinator’s who’ve had to put up with me being such an awesome administrator in my opinion. To all the amazing tutors & participants I have met along the way & last but not least some good friends, to Marion who was also my mum’s best friend We should meet up for a coffee soon, to Shelly & Ian who helped me get through the first couple of years and introduced me to the lovely Jenner & Ken who allowed me into there lives, I know I’m crap at keeping in touch & I need to rectify that.

Finally, to all those, I have not mentioned but are just as important.

Thank you all so much.

And finally again, a big thank you to Robin Williams for making me laugh, for making me cry, for being a hero to me & whose story has inspired me to write this piece.

Day 6, My First Attempt

The next post will be my first attempt at writing, if you have the time please read through it and let me know what you think about it, honesty please.

I want writing to become a big part of my life’s reading has. So I need to start sharing, I need to start getting pieces written and out there for all to see.

The first piece I have written how my life has changed over the last 7 years and how I have I have become the person I am today. A pretty positive one.

A little heads up on what I am living with health wise these days. I have allergies to eggs, fowl and peanuts. I live with anxiety, depression, Asthma, Type 2 Diabetes, Osteoporosis (spinal damage), undiagnosed MS (Spinal cord liaison), Neuropathy, Tested positive for Sarcoidosis (in remisson) and to top it all off Fibromyalgia.

What Do You See?

 

What do you see, when you look at me?

Do you see a man with a different way of thinking for getting form A to B,

Or a different way of physically getting from here to there,

Do you see the labels, disabled, crippled, broken, second class, scrounger,

I don’t want to be like this, I don’t want you to think like that,

Being different like I am is not a way of living we choose,

Being different is about choosing how we live because we are this way,

If I need help, I have learned to ask, if I don’t I have learned to say No,

And we must be polite when we do so,

We need acceptance for who we are, to be respected, to be equals,

We need love when we feel down, understanding when frustrated,

Friendship when lonely, and need help when we can’t manage,

We have the same likes such as, sport or reading or going to the beach,

And the same dislikes, taxes, racism or not being in charge of the TV remote.

We also have likes

The occasional beer and a pizza, a Larger and a nice hot ruby,

(a Ruby = Ruby Murray = Curry)

the chance to go to a concert or see a  film at the cinema,

everyone needs there relationships,

Someone to love, to laugh with, to cry with,

And those that get us and see past the differences,

For some our differences are visible, whilst for others, they are not so much,

But it’s okay to ask us about our differences, we don’t bite unless you want us to,

So don’t be a stranger, come and say hi, just try not to stare it’s not very nice,

Don’t pity us, understand us, don’t blame us, get to know us,

Were as human as you, with a little bit extra, or a little bit less,

We laugh, we cry, we live, we die, we also have a wicked, even dark sense of humour,

Please don’t dismiss us, or ignore us, do not pity us, or feel sorry for us,

Listen when we talk, understand what we need and help if we ask, please,

But we must also do our part,

We must listen when you talk, understand when you need, be a friend when you need,

But communication cut’s both ways and both way’s must get better,

We’re really not that different if we only take the chance and let each other in,.

We’re all only human after all.

 

Practicing my scribblings I hope you like, not sure it could be classed as poetry, I just needed to get it out. (The words that are, not anything else), see Humour.

Take care

Gary x

 

 

Day 4 Wheels

Damn the pain is crazy bad today in my neck and spine, legs are like jelly. Definitely  having a crap morning, overdid it yesterday.

It ended up as a wheelchair day today, I know I need to be using it a lot more these days. I just need to stop thinking about how others will look at me. I was the same when I started using a stick. Stupid I know but I can be Bloody stubborn at times

Shock horror, using the chair worked, I was able read a large part of the book “Writing the damn book” which I’m pleased about, and I ended up getting down loads of ideas, possible titles and a couple of mind maps. So it’s ended up being a really productive day. A small step closer to writing a book myself.

Take care

Gary x

 

A good day

Day 2 of the journey#

Good start to the day managed to get through e-mails and twitter in record time this morning and I was able to get yesterdays blog published as I had misjudged how long it would take last night, lesson learned started earlier tonight, result

Out in the garden again updating my journaal listening to kiss (the band not the radio station) and the coffee is tasting good.

Not sure what is going on, police with there blues and two’s on racing down the A29 to Adversane. Now there’s a police helicopter flying around overhead. Popped to the shop to get a coke zero and saw a van load of coppers heading towards the A29 as well,  police helicopter has been up there for about 40 mims now.

Heard later there was an armed robbery in one incident and in another incident a woman was killed in a road accident on the A29 at Adversane.

Managed to finish the book “Get Your Sh*t Together” reccomend it to everyone. Tomorrow I have a new book arriving, called “Write the Damn Book” for creative people who have a hard time finishing things. Very apt for me.

Hoping to go to the nature reserve tomorrow with my camera, I love going there because it is so peaceful and the cafe make a nice cuppa coffee.

onwards and upwards, let’s see what tomorrow brings

Lets be careful out there

Gary x

 

 

Day 1, The Journey Begins.

For the last few months I’ve pretty much been drifting along like one of those tumbleweeds you see in the movies. Thing is at some point in the next month I will be given notice due to illness at my place of employment and it s all very amicable.

so about a week ago I started reading a book that I got for my Birthday. The book is called “Get Your Sh*t Together” by Sarah Knight. Now I have plenty of experience in setting long term and short term goals, but I’d lapsed, no motivation, lots of things I wanted to do, but I had turned into the great procrastinator, I couldn’t be arsed.

Anyway the book has given me the kick up the arse I needed to start making plans (about bloody time) for my future, to live heathier, earn a living and make time for doing the things that I want and need to do. The book is humorous, uses a lot of profanities about the serious subject of planning for the future, writing lists and setting goals, the perfect book for me, I reccomend it to anyone.

GOALS

Long term – To earn a living from writing and to lose weight

Short term – Create structure in my life by using weekly timetables. The timetables will be further broken down into daily tasks of what needs to be done and what I must do  by prioritising  each task.

I feel really positive and confident that I am doing this the right way and for the right reasons, the main ones being it’s what I need to do and what I want to do.

Ok, day 1, The journey begins. 23/05/2019

I  booked myself onto a creative writing course starting in September 2019.

Went down the village collected my bag of medication and got my haircut, two birds with one stone.

Researched helpful websites, subscribed to a YouTube programme, joined a couple of mailing lists and purchased a couple of books.

ME TIME – sat in the garden with my dog Dora, sunshine on my back, the sound of tmany birds singing in the trees and jotting ideas down in my journal. Perfection and one of the most important tasks on my daily timetable.

After lunch I met with my Boss, we went for a coffee and a chat about my impending  release from my job on medical grounds and chatting over my plans for the future.

It’s been a job I’ve loved doing with an amazing team of people. I can truly say I will miss the job and miss working for the NHS. It has been an honour and a pleasure, and I will definitely be keeping in touch with my workmates.

After getting back home from meeting up with my boss I took a bit of time to reflect on everything  we had spoken about, I updated my jornal whilst sitting in the garden with my dog who laid there fast asleep cooking in the sun pretending to listen to me, this is not being lazy but me making sure I don’t overdo things,  today was a good day, which has helped me feel a little more positive for the future

I am going to make a blog each day with updates on my progress, as I  think this will be a good platform for me on my journey, writing about my plans, my health and any situations and observations I encounter. The aim will be to publish my blog at the end of each day.

Be kind to each other, please leave comments and criticism’s, always appreciated even though I can’t guarantee I will act on them

Gary x

Changes

It’s been a little while since my last post.

Things are starting to change change for me at this time due to my ongoing health conditions, my time working for the NHS, a place I love to work with people I love to work with. I think I will miss this part most of all.

Hopefully though I will still be able to volunteer for them in some capacity my health permitting as the service is very important to me.

This morning was my formal meeting with the HR department to formalise the next step in leaving, a very friendly and amicable meeting, now I just wait for the next meeting and the final decision.

Back home now, feeling a little flat as this is the start of a door closing on a very happy part of working life. I will still be in touch with and involed with EPP so at least I still have that side but I will miss the work.

Anyway the sun is shining and I am ing the garden typing up my blog whist the lovely Dora chases rabbits in her sleep on the lawn, I was horrible and woke her up for the picture then she immediately went back to sunbathing and chasing rabbits.

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I’ve known my leaving the NHS has been on the cards for a while now, so I have started making plans.

Firstly looking after myself and being more assertive, saying no when I need to, by listening to what my body is telling me.

Secondly is just enjoying the moment, living  one day at a time. Doing things I love listening to music, reading a book, waatching the world go by listening to the sounds in my garden (Though this does not include the sounds of my neighbour’s arguing, or the many children screaming shouting or fighting)

On a football note West Ham won there last two games of the season and finished 10th COYI and Brighton managed to stay up by the skin of there teeth. Though I do not support The Seagulls myself good luck with finding a top manager for next season.

This week it’s my Birthday, I can’t believe I will be 57 on Friday and will resist the urge to eat baked beans that day. I think it is true what they say that when you have kids time speeds up as my daughters will be 25, 23 & 21 this year yet in my head I still think I’m 32, the year I got married to my wife, the year my eldest was born  and luckily I was a lapsed Catholic for obvious reasons. I’m guess what I’m trying to say is grab life as tight as you can and wring the life out of it and I consider myself very lucky that, that is what I have always tried to do.

Finally I just want to say I have finished reading  the latest 2 books, the first is called “Why are you pretending to be Normal” a book I’ve read before, but have found to be really helpful, it’s about living with disabilities and impairments, learning new ways of looking, thinking and talking about them, the stories techniques are from people who are already using them to live there lives

The second book is called “This is going to hurt” Secret diaries of a junior Doctor by Adam Kay. The book made me laugh so hard at times I had tears rolling down my cheeks, his sense of humour and compassion shines through but ultimately left me heartbroken.

everybody that has used, will use and does use our amazing NHS should read it and reccomend it.

Thank you for listening to my ramblings

Remember live, laugh, love but don’t, live, love, laugh or your partner may get annoyed with you.

Love you all, take care, Gary

Just for good luck  COYI.

 

 

“East of Croydon”

Just finished reading the book “East of Croydon” by Sue Perkins.

What an amazing and beautifully written book, I have to say I was hooked the moment I started reading it. The way it’s written just draws you in and makes you feel you are right there with Sue on location, just without the smells , it’s written in such a way it that you feel that Sue is talking directly to you personally as you accompany her on her adventures.

Reading this book has been an absolute joy, it’s made me laugh out loud, it’s made me quietly shed a tear when no one else was looking. A wonderful thing  it has done thouugh is remind me how much I love reading books and re-ignite my desire to read more.

Thank you Sue Perkins.

I am really looking Forward to reading her book “Spectacles a memoir” which I hope to get for my birthday so while I am waiting I will be reading a book that has been reccomended to me called “The Secret Barrister, stories of the Law and how it’s been broken” described by the Observer as Terrifying……..Hilarious………Eye-opening. Writen by?

ISBN 078-1-5098-4114-1 Published by Picador.

Enjoy the rest of the May Bank Holiday

Look after each other, all the best, Gary

Pain

Oooh Hospital again

So Today was my second visit to the Pain management clinic at Charring Cross Hospital in London, 4 weeks ago the new medication they got me to try was an Opioid called Tapentadol which caused some horrible side effects.

In the past 7 years I’ve had many treatments and medications to try to help with my constant widespread pain.

First I was tried on Gabapentin & Pregabalin they’re epilepsy drugs which are also used to treat nerve pain, horrible side effects and weight gain.

Then they tried me on Amitripyline then Tramadol again side effects but no pain relief.

I was then tried on codeine phosphate which caused me to have  hallucinations but also did nothing for the pain

Next they gave me a Steroid injection into my lower back , but it didn’t help to reduce the pain.

3 years ago they tried me on a 3.5 hour  steroid infusion spread over 2 days, but again a few minor side effects but no pain relief..

Today’s visit to the pain management centre involved a 10 mg Ketimine which worked really well got me as high as a kite and for the first time in 7 years I was pain-free, straight after the injection I was put on a Lidocaine which they were hoping would reset my nerve pain levels back to Zero.

The  infusion lasted for about an hour, for the first half hour I laid there bid smile on my face listening to queen blast out on my head phones, for me at that point I thought life couldn’t get any better. Sadly I was right, as the Ketimine started to wear off the pain started returning legs first, then spine and Neck.

Now I am back Home it’s 9pm and all the pain has returned, back to the levels I have now become used to. I’m still glad I tried the treatment as it may have ment I might have been able to return to my job which I love doing. Two good things about today I got to go up to LOndon with the wife and youngest daughter and during the treatment I got to listen to one of my favourite albums Queen’s greatest Hits uninterrupted, just hope I wasn’t singing out loud.

Till the next time, look after yourselves,

Gary

 

Bucket list update

Off to a flying start.

So on Thursday got to go out for a coffee and it ticked all the  boxes, nearly.

So what do I mean about ticking boxes. Well below is my list of what makes a perfect “going out for a Coffee means”, but for me there are 2 types of “going out for Coffee

Type 1

  • 1/  firstly it helps if it is with someone who is great company, but also someone you feel comfortable around, it also helps if its someone who has things that you both like talking about whether its music or work , family  or football and football is one of my favourite subjects as I am a West Ham United supporter and K is a Brighton & Hove supporter, so the myths are true that supporters of different teams can get on without starting a war.
  • 2/  Just getting out of the house is a big lift for me, it’s just so good to be in different surroundings and of course good coffee helps and nice location.
  • 3/ Excellent service and staff, which of course can make or break the experience of enjoying a relaxing day out.

Type 2

  • This is one where I am happy  to sit on my own or with company and drink my coffee.
  • On these occasions  I like to people watch and just make stories up about them in my head, when doing this I can let my imagination run wild, it can be such good fun.
  •  3/ Also on these occasions I like to take my camera with to do some street photography, which I love doing as I feel that each picture you take can tell a really great story.

A great side effect of doing this is it helps to alleviate feeling isolated and lonely, it can help with feeling low,  if its warm and sunny it’s a great source of vitamin D ans can also help to lift your mood and its a good way of just staying sociable and keeping up with whats going on, for me though the best thing  is I would be doing something that I really enjoy doing and it can often be an inexpensive way  of enjoying some time out of the house.

Have a good day and I hope you have a good weekend. COYI

Gary

Bucket List

Okay, so in my last blog I said I was going to write down a new bucket list. I had actually started thinking about what I wanted to do, how big or small I wanted the actions to be, Whether I wanted it to be big things like “I want to run the London  Marathon” or something small like “I want to make a model airplane”.

Any way here goes.

My Bucket List.

  •  1.  Attend at least 5 West Ham home games next season.
  •  2.  Get out and about with my Camera at least twice a month.
  •  3.  Go on a UK weekend break this year.
  •  4.  Work. Find something I can do from home, something creative
  •  5. Go out for coffee with a friend at least once a month.
  •  6.  Get power  installed into my shed.
  •  7.  Write my blog at least once a week.
  •  8.  Do a creative writing course.
  •  9.  Read a book a month.
  •  10. learn to make the best Chilli oil & Chilli sauce  possible.

 

So here is the list that I came up with. I am not saying I have to do all these, but try to do some of them.

Take care

Gary

A Better day

Damn, what a difference a good nights sleep makes, and it’s been a while since I’Ve had one of them.

Pain levels are still high, but mentally feeling less stressed out and low, so today I’m just spending time chilling, I have things I need to do, but I’ve decided they can wait until tomorrow.

My youngest daughter has been promoted to supervisor where she works and has been taken on full-time as well, great news as she is saving up to go to University next year, to follow her dream of becoming an actress and writer.

Today my wife has gone up to Oxford to see our middle daughter who will soon be starting her preparations  to begin her year 3 nursing degree after a short period of ill-health.

My eldest daughter  is starting to look for a new job or got back into full-time education because where she works now will be closing down in October, She is also looking at doing a 3 month solo trip around europe which will be amazing for her.

Finally my wife is hoping to go to a wedding in Toronto, Canada in July, for the marriage of her oldest friends second daughter, which will be an emotional reunion.

For me, well I have decided to re-write my bucket list,  hopefully it will be good fun and also help me to come up with some good ideas on which direction I want my life to go in once work is finished.

Live…..Love…..Laugh, but not necessarily in that order.

Take care

Gary

F##k it

You know what I have learned techniques to help me stay positive, I’ve read books about positive thinking, I’ve even used apps, but occasionally, just occasionally you can have a day where your outlook is perfectly described by these 2 words ” F##k it”. 

Sorry about that but today is one of those days.

F##k it

F##k it

Fuck it

F##k it

F##k it.

.

.

.

.

.

.

.

Fuck it.

 

 

 

 

 

 

 

 

 

 

2 steps forward 3 steps back

Firstly on 14/03/2019 I started taking my new pain medication Tapentadol. For the first few days I had the most common side effects and I noticed the intense burning and itching to my hands and feet so I was really pleased that on the minimum dose I seemed to be having a positive effect.

On the 24/03/2019 I got very sick very quick. headache, nausea, stomach cramps,  hot flushes, dizziness, couldn’t keep anything down including my meds, 36 hours later I seemed to be almost over it, I put it down to either my allergies flaring up or a bout of gastro entiritis.

Everything remained fine until the 30/03 when I started feeling a bit ill wiTH flu-like symptoms. Around 11am on 01/04 I started to get really bad stomach cramps  and I could barely stand up straight, this went on for around 3 hours before easing,

That evening I had a bowl of soup so I could take my meds, 4 hrs later I was in the loo all the previous weekends symptoms were back plus watery painful eyes, lots of vomiting.my whole body was burning and itching  and my pain levels were through the roof.

I hadn’t slept for 32 hrs and I had spent at least 14 of those hrs in the loo, I found out quickly that I couldn’t even keep water down. Around lunchtime I started feeling  well enough to call the doctor and left a message.  I called me back that evening and was told to stop the new medication immediately.

On Friday I had my blood tests in the morning then in the afternoon go to St Mary’s Hospital in London for my yearly head and neck MRI  which was really painful this time.

I’m writing this at 2am on 08/04 and although all the side effects have now gone, I’m still recovering from the illness and the trip to London. My pain levels are still high, my sleep pattern is bad but slowly improving. My memory and feeling confused is bad. The itching and burning to my hands and feet is back. My hand tremors  are more frequent and my ability to drop and smash plates, glasses, cups and bowls has hit record levels.

Later today I will need to contact my consultant to inform him that I cannot take the new medication, As hopefully on the 16/04 I have to go back up to Charring Cross Hospital to have a lidocaine infusion to see if that will help with the Nerve pain, I’m hoping that what’s happened with the pills doesn’t rule out getting the infusion.

I’ve been a bit low to say the least, but I have been thinking about staring a new hobby and I have even been thinking about trying to learn a new language maybe Spanish.

Goodnight, good luck and good health

All the best

Gary

New meds day 6

Ok, so day six of taking my new medication.

what’s changed

Pros

  • The burning and freezing sensations to my hands and feet have stopped.
  • Still getting headaches but not as severe or long now.
  • Absences have almost disappeared.
  • Widespread itching is getting less each day.
  • Improvement to chest pain, as only hurts now when doing activities.
  • Drowsiness is getting less

Cons

  • Still fatigued.
  • No change to pain in legs, feet and toes, knees and ankles, thighs and calves.
  • No change to pain in hands, wrists and fingers.
  • No change to lower neck pain and lower back pain.
  • Memory and concentration still poor.
  • Mobility still a problem with coordination, trips, falls and legs giving way.
  • Grip stillpoor and painful, so still breaking things

So some improvement is a positive sign, each small step is a victory.

I will be starting the second part of my new treatment on April 16th which will be a high dose infusion of an anaesthetic called Lignocaine, which will hopefully reset the amount of pain caused by my nervous system could return to zero or be a lot lower. So this could be just one dose and it works in which case job done, or it could be temporary and I would either repeat the treatment once a year or once every 3 months whichever works best. or it could be that the treatment just doesn’t work.

But before this happens I will be having my yearly head/neck/spine MRI to check if there are any more spinal chord liaisons and to also check the compression fracture and bone thinning caused by the Osteoperosisis so fingers crossed there will be no change.

So on the whole I’m feeling pretty positive about things, I know I am a long way off being able to start working again. Though maybe I  will be able to getting out of the house and do some of the things I enjoy doing like people watching whilst out having a coffee or doing some photography, maybe I will even get the chance to go and watch the Hammers play at home sometime as it has been far too long since I saw them play live.

Finally I made a start on updating my memory book which I am finding really enjoyable. I have also been doing some thinking (which some would say is dagerous) and have made the decision that I will not carry on using a mobility car when it comes up for renewal in November as it’s highly unlikely I will be driving for quite a while.

Thank you for reading or following my blog but even if nobody is out there reading it that’s ok because it is helping me make sense of what I am going through, it is also helping me to stay strong, off to listen to Fleetwood Mac “Rumours album”

Adios amigos

Gary

Opioid Days

Day 4

Okay another very bad nights sleep with pain being the main culprit keeping me awake

Trying new meds is a bit like “De ja vu”  I’m only on a low dose but only getting a slight benefit pain management which is good, but on the other hand the side effects I’m getting are not good. This has been the same pattern for each pain meds I have been tried on for the last 8 years.

Side effects    

  1. The widespread itching has gotten worse.
  2. Feeling a little high most of the time.
  3. Concentration is still bad.
  4. Forgetfulness is still bad.
  5. Oh yeah forgetfulness is still bad.
  6. Short term memory is rubbish.
  7. What was I doing?
  8. Where am I?
  9. What day is it?
  10. Why am I here?
  11. What time is it? I don’t know how many times a  day I ask these 5 questions but I can tell it’s a lot.
  12. Neck and lower back pain are still bad.
  13. Pain when breathing is still the same.
  14. Still getting the occasional hand tremors.
  15. Balance is still poor as is co-ordination.
  16. Still dropping and braking things.
  17. Still tripping and falling quite a bit.
  18. Have having absences since I started the new meds.
  19. Spacial awareness not good.
  20. A major improvement on Saturday West Ham won 4-3.
  21. Brighton won today after playing for about 3 hrs at Millwall, so the boss will be happy.
  22. Haven’t broken any crockery for 2-3 days that’s a bonus.
  23. Happy St Patrick’s day.
  24. Enjoying sitting in my shed tonight writing my blog looking at my favourite pictures hanging on the walls
  25. Last but not least my memory is still crap.

Tomorrow I’m going to work on my memory album and also write down of all the countries, cities and American states where I have either worked or visited.

One last thing I would like to recommend a book that I read recently. It’s called “Why are you pretending to be normal” by Dr Phil Friend OBE and David Rees. It about how disabled people see their own disabilities and how able-bodied people see our disabilties. It asks a really interesting question about near  the end of the book. “Are you disabled by other people’s perceptions of you or by your own perception of you?”

Thanks for taking the time to read my ramblings and remember be kind to yourself and to others.

Take care,

Medication

Ok day 3 of taking my newly prescribed medication for my severe longterm pain, its called Tapentodol, it’s an Opioid and I take 100mg twice a day.

Pro’s

Have noticed a slight reduction in pain in my hands and feet.

 

Con’s

Permanent headache

Constant drowsiness, lack of attention, Confusion, incresed forgetfullness

Constant tiredness & fatigue

Sleeping problems are back

More frequent hot flushes

feeling more unsteady

Having quite a few of what I would call absences, disorientation

Itching all over

So I will see if symptoms improve over the weekend, if they do then good, if not first stop will be a visit to the chemist to see the pharmacist.

just taken me 1 hr 15 mins to write todays blog

On the plus side though:

I woke up this morning so obviously thats good

Enjoyed my morning coffee

Sense of humour still seems to be working

 

 

Lists, My Favourite…………….?

Sitting up late, can’t sleep yet as I’m in so much pain, so to try to take my mind off things I have decided to write different lists of my favourite things.

So I’ve started off with 25 of my favourite films in no particular order, many of which are about overcoming adversity

1) Man on Fire
2) Gran Torino
3) I Daniel Blake
4) Avengers Assemble
5) Gone in 60 Seconds
6) Field of Dreams
7) 300
8) Unstoppable
9) The Warriors
10) Shooter
11) Unbreakable
12) The Sixth Sense
13) The Losers
14) 42 The Jackie Robinson story
15) A Few Good Men
16) Coach Carter
17) Deadpool
18) Patch Adams
19) Watchmen
20) Money Ball
21) Invincible
22) Heaven Can Wait (original version)
23) Remember The Titans
24) Bi-centennial  Man
25) Logan

 

My Favourite Meals in no particular order are.

1) Boston Clam Chowder with Sourdough bread.
2) Lamb Vindaloo with Pilau rice and a garlic naan bread.
3) New Mexico Hatch green chilli stew.
4) jalapeno poppers.
5) Sizzling steak fajitas.
6) Blackened Catfish with dirty rice.
7) Tom Yum Soup (Thai).
8) Bacon & Cabbage (Ireland)
9) Barbecued  Garlic Langostines (Singapore).
10) Thin & Crispy jalapeno & Pepperoni Pizza.
11) Irish Stew
12) Texas style barbecue  beef ribs.
13) Toasted Bacon sandwich made with Sourdough bread.
14) Garlic & Chilli Pasta (Rome)
15) Beans on Toast.
16) Mushroom soup
17) Fruit salad
18) Chilli con Carne.
19) Bruschetta with garlic, tomato, Olive oil, Balsamic vinegar and parmesan cheese.
20) Fish & Chips

Bugger, well that’s helped me take my mind off my pain a bit, but now I can’t stop thinking about bloody food.

Hope you all have a great weekend.

 

Music One of the best medicines in the world.

I just wanted to share the names of the top 20 bands I like to listen to when I am out driving my car or just feeling a little stressed or fed up.

For example of this happened on Monday, I needed to drive to the chemist to pick collect the second half of my prescription. Now anyone that knows me also knows I can’t hold a tune and I don’t exactly look like a rock star.

But when I’m driving in my car on my own, even if it’s only to the local chemist and I have Queen blasting out on the sound system then I’ll be singing at the top of my lungs and at that time I felt like a “Rock God”, well to me anyway.

It certainly put a smile on my face on my face for the rest of the day.

  1. The Beach Boys
  2. Nickleback
  3. AC/DC
  4. The Vaccines
  5. Bob Marley & the wailers
  6. The Clash
  7. Creed
  8. Counting Crows
  9. First Aid Kit
  10. Foo Fighters
  11. Red Hot Chilli Peppers
  12. Thirty Seconds to Mars
  13. The Mavericks
  14. Queen
  15. Kiss
  16. The Four Seasons
  17. ELO
  18. Eagles
  19. Black Sabbath
  20. The Beautiful South

Keep on trucking, and feel the groove people.

MC Gazzer

A bit of positivity goes a long way.

So on the whole I have to say that Tuesday was pretty good.

  • Woke up with the usual amount of pain, tight muscles and stiff joints.
  • Took all my pills, skipped breakfast as feeling sick like most mornings.
  • Went to the Chemist to pick up my monthly sack of meds which fits just nicely into my rucksack.
  • Then treated myself to a haircut, I do like a bit of pampering every six weeks.
  • After the haircut I treated myself to a bacon roll and a black coffee, absolute heaven, don’t do this very often, so I really enjoyed it.
  • Today just keeps getting better and better.
  • Then came the part of the day I had been looking forward to I was picked up from home by one of my colleagues and got a ride to the office for the monthly team meeting. The last one I had attended was May just before my health took a nosedive. It was so nice to see the whole team again, even taking part in the impromptu photo shoot for facebook as Tuesday was national stress awareness day. Then the Boss gave me a lift home after, makes me realise just how important my work mates are to me and also how important my job is to me.
  •  .facebook_1541689136841.jpg
  • The offending picture. My God, how many chins?
  • So you see it’s these times with my family and my dog and these moments friends and colleagues each day or week or month, that mean I can carry on, that keep me positive whilst I am continually waiting for neurology or rheumatology appointments, for chronic pain and chronic fatigue clinics and most importantly having to wait for the occasional bacon roll.
  • When I got home I was absolutely exhausted my pain levels had returned to “I need to lie down right now and not move for at least week” but it was so worth it.
  • Then I spent a lovely evening with the family, nice meal and a lot more pills, then watched a bit of telly to unwind.
  • Finally got to bed around 3am, but that was OK as I knew I had a couple of days of nothing to do but relax and recover.

For me that’s what I call balance and it seems to be working out OK.

 

In the words of Mister Spock “Live long and Prosper”