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.

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

 

 

Choices

Something that was said to me on Friday got stuck in my head and it niggled away in the back of my mind over the weekend.

Then I saw a film yesterday that struck a chord with me and with the comment that was made on Friday. The film was called “Choices”. Now I wouldn’t normally watch a love story, but the wife and eldest were watching it on the tv.

At this point I would just like to say that these types of film are not my guilty pleasure.

Anyway, the film had a very strong message, not just about the love between two people but also about choices. It doesn’t  matter how big or how small the choices we make are, because for us as people they can both be life altering.

This morning I started reading a new book, it is helping me think about why I have made the decision to make the changes I want and need in my now.  The book I am reading is called:

Get your sh*t together

How to stop worrying about what you should do

so you can finish what you need to do

and start doing what you want to do

By Sarah Knight

Though this book has a serious message, it is explained with a lot of humour and a lot of swearing, which I find refreshing and easy to grasp, because of that I know this will help me with the process planning the next steps in a way that makes sense to me.

It seems that these occurrences  over the last 4 days are probably the universe telling me to get of my ar*e and get on with it.

I know it is something I am passionate about and I know that is what I want to do, I have many questions to research to find the answers I need and I also to get some advice from people I completely trust.

Watch this space

Go well

Gary x

A Good Bank Holiday Weekend

Good Friday

Had a really good day today, I decided on Wednesday that I wanted to go to the local nature reserve tomorrow  (Saturday).

So I spent today preparing for my trip to the reserve. I went through my camera equipment selected and cleaned the lenses that I thought I might need,  after I charged the camera batteries, cleaned and tidied my camera bag, then repacked it with what I would take.

Sometimes I think the planing, anticipation and preparation  is almost as good as actually going.

Saturday

Great start to the day by going for a little walk with my Dog. Loved it as it has been a long time since we’ve been able to go for a walk together.

The Wife dropped me off at the Nature reserve. it was a very hot day, so before going into the reserve, I bought a coffee renewed my membership then sat outside the cafe to drink my coffee. unpacked my camera and took some test shots.

There wasn’t much wildlife about as it was too hot for them. I slowly made my way through the grounds taking plenty of rests and enjoying the views of the pond. then I found myself in a quiet spot in the woodland area found a bench to sit on and just watched all the families rushing around doing the easter egg hunt, had a fantastic day and didn’t take a single picture.

It’s not always about the picture , sometimes it’s about just enjoying the moment and your surrounding’s.

Also another one of my monthly bucket list challenges started.

Easter Sunday

What a glorious day, lovely and warm, I spent most of the day sitting in the Garden in the shade reading my book that I got on Friday, It’s called “Harry’s Last Stand” by Harry Leslie Smith and by late afternoon I had finished reading it, haven’t read like that in a long time, I really could not put it down. I followed Harry on Twitter, as like me he is a socialist. the book covers his life from his birth in  1923, through the impoverished time’s of the 1920’s and the great depression of the 1930’s, his part in the as part of the RAF during world war II, his life as a happily married family man. He compares his unique experiences from a child growing up in a time of austerity during the great depression, to the austerity we have been going through since 2010. the similarities are frighteningly undeniable. I am not ashamed to admit his story brought a tear or two to my eyes, but the one thing running through the book was the strength that he possessed to get through everything that came his way, but also there was his optimism for the future, that people will create the kind of society that works for everybody and leaves nobody behind. Reading this book has awakened my love of reading again, which I lost when i became unwell back in 2012.

This book and its message gives me hope for the future and my children’s future.

For the evening the brother-in-law came over for a nice chilled out family roast dinner, perfect end to a lovely day

Bank Holiday Monday

For me today will be a day of rest to let my body recover a bit. I shall mainly watch a bit of tv, sit in the sun with the dog, I’ve already chosen my next book it’s called “East of Croydon” by Sue Perkins. based on her tv show where she travelled around Asia, great series so I am looking forward to starting the book.

Going to call my Godson later to see if he can pop round sometime this week to do me a quote on running power to my shed, maybe he will even be able to do the work for me, paid of course.

Also looking forward to a planned coffee morning with a work colleague on Friday morning.

Have decided that I will need to rest up Tuesday as well.

What a perfect weekend

Take care of each other

Gary

 

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

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.
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  • 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”

 

And the winner….. is!

It’s Tuesday so it must be the Great British bake off. Absolutely love this programme in fact it’s been one of my favourite shows since I first started watching it when it first began.

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Now those of you who know me me May think that that it’s a bit strange that I would enjoy watching a baking show, seeing as I have been allergic to eggs since I was born. It also means I have never tasted or eaten cake in my life.

For Me though it’s all about the contestants, the joy of being star baker and the heartbreak of being the one that is asked to leave. Each week they arrive full of hope and positivity doing something they love, wanting the best for each other, supporting each other whilst at the same time wanting to win the final.

This programme always puts a smile on my face and the presenters always make me laugh, whether it was Mel & Sue or Sandy & Noel, and nothing beats a Hollywood handshake, I do miss Mary Berry but prue is starting to grow on me.

I’m not really bothered about who wins, but I like to pick someone on week one just for a bit of fun, the only winner I have got right so far is Nadia, though I have picked at least 4 or 5 finalists. For this season I  have picked Ruby, but I am glad Kimjoy is in the final as well, it’s just a shame that Bryony went home last week.

Bring it on 😁

 

 

 

Autumn

This is my Favourite time of year and always puts a smile on my face. It’s a time of year when I like to get out and about with my camera and photograph nature in all its glorious colours. A time of cool crisp sunny days, frosty spider webs and walks with the dog. Unfortunately I am not really able to do any of that moment, so instead today I decided to look through some of the old photos I have taken and posted on my Flickr site https://www.flickr.com/photos/wolf175/with/3593317420/  and I came across this one.

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I took this one a while ago when I was working in a town Called Hudson, near Boston, Massachusetts, USA. This scene was of a large pond surrounded by beautiful homes and stunning trees in Autumn colours.

It’s been a long time since I just sat down and looked through my photos and although I miss getting out and about with my camera now, I’m confident that once my pain medication is sorted out and once I’m used to getting around in my wheelchair, I will be back out there doing something I love.

To end this is a phrase that I really like to use, it comes from a tv show that I really like to watch. I like to use it as a positive affirmation. It’s not something I say it out loud of course, it’s something I say to myself  in my head, if people heard me saying it out loud they might think I was wierd or wierder.

       “Always forward, forward always”

                                                                                                                                Luke Cage

 

The NHS

I consider myself to be in some ways a very lucky person as I was born after the NHS was formed.

I was born in St Hilliers Hospital, Carshalton, Greater London. I was born with a serious egg allergy and by the age of two had developed chronic Asthma, which was only made worse by cold weather and London smog.

Now the reason I say I was lucky was because I lived near to both St Hilliers Hospital and St Georges Hospital in Tooting both saved my life a few times and at both the staff were amazing and compassionate and caring, and I could never thank the enough for treating me on so many, many occasions, my records probably filled a filing cabinet draw.

But the NHS has also been there for means I have gotten older and especially now with my long-term chronic illnesses, but the one constant in all the hospitals I have had to use up till now has been the staff. They are still just as caring, compassionate, thoughtful, friendly and professional as when I first started using NHS service.

They are just the most amazing people.

But it gets better. Six years ago after I lost my Job through ill-health and was told  there was a good chance I would never work again, I got very low, depressed and anxious, I really could not see a way forward even the Govt turned its back on me.

Again thank you NHS because I managed to get onto a free wellbeing course for people with long-term health conditions called the Expert Patients Party. WE had people with MS, Diabetes, Cancer, Parkinson’s, Arthritis, Depression, Anxiety and many more, but the first thing the Volunteer tutors did was show us that we all had one thing in common and that was we all lived with pretty much the same symptoms. Wow. I can tell you now this course saved me by equipping me with the tools and techniques I needed to carry on coping and living with my conditions, and that was thanks to the wonderful Volunteer Tutors and the other participants.

On week 5 of the course I filled out an application form to train to become a volunteer Tutor myself, thankfully they accepted me and I have never looked back, the volunteers I have worked with over the years are amazing people, they all have their own long term conditions to deal with as well as helping others, and the things we all have in common is that we love what we do and we look out for each other.

For me the icing on the cake came when I applied for a part-time job with the NHS for the position of Expert Patients Programme Administrator, working with three amazing young ladies, two co-ordinator and a manager, all 3 as compassionate, empathic, caring and helpful as any of the Nurses or Doctors I have met over the last 56 years, it’s been my dream job, can’t believe I work for the NHS and I can’t believe I work for this amazing department.

So I would like to thank you and tell you I love you all for what you do everybody and the way you do it every day.

Now it may come as no surprise to some people that I am fairly politically minded and do not want to see the NHS to come to an end as it is far too important to everybody in the UK and belongs to everybody in the UK and should not be used as a political football it has to be kept separate form political agendas.

 

One last thing I would like to Share with you is my thoughts on a book that I bought on its release date last year.

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The Book is called “Your life in my hands” a junior doctor’s story By Rachel Clarke. It’s a powerful, honest, compassionate story of what it is like for the amazing people who work on the NHS Frontline and why we all need to save the service.

 

 

Wheels

Had a fairly good weekend, been practising and using my new wheelchair around the house and in the garden, it does make such a difference for getting around and certainly takes the strain off my joints.

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Dora decided she wanted to get in on the photo.

All I need to get sorted out are my pain meds, trying to get my appointment moved closer. I need to find pain relief that reduces the pain but allows me to function and doesn’t affect my cognitive abilities, I’ve been tried on a few now that either didn’t  work or caused unwanted side effects, such as gabapentin, pregabalin, codeine phosphate, Tramadol and Amitriptyline.

I would still need to be able to drive, so that ICan keep my independence, I’m not saying this would get me back into work but it would certainly be a step in the right direction.

Feeling pretty positive at the moment.

Hot Stuff

Unfortunately the title does not refer to me but instead refers to my love of hot chilles, which I became addicted to whilst working in the USA many years ago.

So my story for this post started over 25 years ago, although I have loved hot food and hot chiilies for over 25 years, Vindaloo, Phals, Tom Yum soup, hatch green chilli stew the list goes on. It took me 20 years before I made my first attempt to grow them, unfortunately the first year 3 of the plants died and the fourth plant gave me 5 chillies, then every year for the next 3 years all the plants died. This year though has been different all 3 of my plants have gone mad and are covered in chillies, happy days.

So now I have an abudnce of chilles, what could I do with them, first thing I thought of was to make myself a chilli and garlic infused olive oil dressing for when I pizza.

but what else could I do? what about a hot chlli sauce which was my own recipe for cooking with( another suggestion from the boss) and a good one as it turned out. From research to eating my first ever home made chilli con carne took 3 weeks but it was so worth it, the chilli tasted so good. There’s going to be a lot more experimenting going on now until I feel I have the perfect sauce.

Now here is the pictoral proof.

Yes! for the first time in 5 years all my chilli plants have fruited.

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This really has put a smile on my face, but what next? all I could think of doing was freezing them as they ripened for use later.

Moving on 2 weeks later this is what happened after my boss sugested to me that maybe I should make and bottle a chilli sauce, thanks boss.  On the Friday I bought the ingredients.

Then on the Saturday,

IMG_20180909_111034516_HDRthe experimenting began, really enjoyed this bit.

 

On Sunday though

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The cooking began in ernest and I ended up with a nice looking and nice tasting sauce it was a slightly sweet but had a really nice kick to it.

So with a little more reasearch and some more experimenting over the next few months I think I will have a chilli sauce that I will really be proud of.

So although this sauce making is a lot of fun and been a great distraction for me, it has also taught me something I didn’t know before and that is I make a mean chilli sauce, it’s also taught me something else and that is, that although there are things in my life which I can no longer do, due to my long term heath conditions, I should not give up on looking for things to try, I may come across something I love doing and I may also be good at it too.

So to end this post, for me mentally and physically this  turned out to be a win-win scenario, it’s shown me I can still learn new things, try new things and actually start enjoying stuff again. It’s taught me you should never stop looking for or trying new things, you never know what’s round the corner. Who knows maybe if I make a good enough sauce one day I might be able to make a bit of money out of it, ya never know.

 

Be kind to yourself

Gary

 

Sod it, another Flare Up.

Eight weeks ago my health took a bit of a nose dive and I have been on sick leave since then. This was not good as I love my job, thankfully I have a very supportive and understanding boss which has helped to remove a lot of the stress and guilt that I would normally have felt at being off work.

Over the last eight week’s there have been quite a lot of negative moments for me but there have also been some really good positive moments too, which I am going to concentrate on in this post. The first of these positive moments was during a talk on the phone with my boss, I was telling her about my worries and fears of not being able to work and not being able to carry out my volunteer tutoring role, as these are such important part of my life and wellbeing. The first thing she did  was to reassure me that I didn’t have to worry about work and to just concentrate on taking care of myself.

We arranged to meet up for a chat and whilst having a coffee or two we talked about what sort of things I could do to stop myself “climbing the walls at home”. She suggested that maybe I should I start writing a blog. Recording how I manage to deal with and live with, several long-term health conditions day-to-day whilst at the same time feeling I am still making a contribution and still helping others at the same time. Whilst I am not able to go to work

When I got home I found myself thinking back to when I had attended a free NHS course, called the Expert Patients Programme. Now during the EPP course I learnt many tips and techniques on how to live better with a long-term health condition. One of the techniques I heard came from both the  tutors and participants, the technique involved writing down all the positive things that happened each day, such as watching a beautiful sunrise or chatting with a friend. Then when you were feeling low, down or depressed you could go back to your journal and use these positive memories to help pick yourself back up again.

It wasn’t really my thing, but a couple of days later I found myself thinking  about it again and decided to give it a go. I decided my journal would only focus on the positive, good things that happened to me or that I saw each day and the things that made me smile or laugh or made me happy and as I was a keen photographer I decided I would also take a photograph each day of something that also made me smile or made me happy to add to my journal. For a long time doing my journal like this worked really well and helped me a lot.

Then as my condition changed over time so did my journal, first the daily photographs stopped as my mobility worsened, then it stopped being a book and I stared to just keep a log on my computer, after a while I just stopped doing it completely, I’m not sure why. then a couple of years ago I was given a happy jar for Christmas which reminded me of how much I had enjoyed doing my original journal, I still have the journal in my shed and still look at it from time to time  to cheer myself up. I also still have my happy jar which I add too every once in a while.

So back to present day and for me health is changing again,  so now I am hoping that blogging will become my new journal. It will include everything that is going on in my life at the moment and hopefully, as I become more confident and more at ease with writing a blog, the post’s should become more regular.

So over the next few posts I will be talking about the different I am trying out at the moment whether they work for me or not, I’m also hoping that writing this blog is one of the things that is going to help me cope with life going forward, and if reading it helps others out too then that’s a bonus.

Be kind to yourself

Gary

 

What do I do?

For my first blog I am going to briefly explain how I got to where I am today, so here we go… I was born in London, moved to Sussex as a teenager, grew up, got an amazing job, got married to an amazing woman, had three amazing daughters and adopted an amazing dog.  Then I got really sick!

OK, so this is what happened in a bit more detail…

For most of my adult life I have worked and for the most part enjoyed it, I felt I was one of the lucky ones. I had a job that I loved which took me all over the world, meaning I got to do and see amazing things and meet some great people. Life was good.  Until 11 years ago when I was made redundant as the company shut down its operations in the UK.

However, this wasn’t the greatest issue that life would throw at me – for the last 7 years my health that has become the biggest challenge of my life.  During those 7 years I was unable to work. I was told by the pain specialist that it was unlikely I would ever work again, but because he’d used the word unlikely, I felt there was still some hope for me to return to work.  However, within a day or two of the leaving the pain specialist’s office the reality set in.  I could not find any help or guidance anywhere, the Jobcentre, Maximus, employment agencies, even my local MP.  On top of everything I was told I would not qualify for ESA which meant the family facing significant financial stresses too.

It was at this time that my hope and faith in others and in organisations that were supposed to help disappeared and I found myself in a dark place.  I turned to the NHS for help and was referred to mental health services, given some meds to help my mood, and attended a number of group CBT classes.  This all helped a little, but none of it helped me to deal with the chronic pain I was in.  I also joined a local support group, what they were doing was great but it wasn’t my thing.

Then one day I overheard a lady in the Doctors waiting room (hence the title of my blog). She was talking to another lady about a free NHS service called the ‘Expert Patients Programme’ and saying how it had really helped her to cope with her life living with a long-term condition. I didn’t know what was wrong with her but after listening to her, I thought why not give it a try? What have I got to lose?

So when I got home I did some research, I found out it was a six week course for 2.5 hours a week. They were group sessions and made up of participants with many different forms of long term conditions.  Once I finally got the confidence to call, I was booked onto a course and I can honestly say it turned out to be one of the best decisions I have ever made in my life.  The two course tutors were volunteers who were both living with long term health conditions, they had attended this course themselves and found it to be so helpful to them they decided to train and become volunteer tutors so they could pass on what they had learnt.  They were inspiring, positive and compassionate.  By the end of week 3 when I got home my wife said she could actually see a change in me, I was becoming more positive about things, I was smiling more and I was doing more.  On week 5 I filled out the application form to become a volunteer tutor myself.  I felt like I had a future again, that I could be useful and that maybe I could make a difference and help others. I also made it my long term goal to get back into employment.

That was 5 years ago, I am still a volunteer tutor and I now work part time for the service as well.  The staff and all the participants have kept me going and keep inspiring me every day, especially at the moment whilst I’m unable to get into work due to a flare up of my condition. This time though I do not feel helpless as I can draw on my self-management skills (learnt on the course).  I don’t feel scared and alone, because I have the most amazing colleagues who are there for me and understand what I am going through. I also keep in my mind all of the amazing participants I have met whilst tutoring courses, these people inspire me to never give up, to remain positive and to always look for the best in everything I do and everything that is happening.

The posts I will be writing for the Blog will be about me sharing how I deal with and cope with what is happening in my life, the good, the bad, the funny and the sad.