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

 

Day 3 The Nature Reserve

Another beautiful sunny day

Ok, so today is a me day.

Dora took me for a short walk this morning, luckily she walks even slower than I do which is a plus. I loved every minute of it and even though the walking part is agony and I know will pay for it later. I’d planned for this and to me, it’s worth the extra pain, to do something I rarely get to do anymore. I really loved going for daily walks with her back when we could both manage it. Anyway, we made it back home in one piece and sat around in the garden, me drinking coffee waiting for my books to arrive and Dora sleeping. Exactly what we needed after the walk.

Books arrived, can’t wait to start reading them.

Once the wife home from work, I got my camera gear ready. She’s going to drop me off at the local nature reserve on her way into town.

I have a bit of a ritual when I  go to the reserve before I do anything I have a cup off coffee and a small packet of Jelly Babies.

Once the refreshments were out of the way I made my way to the hide to observe nature. I just love sitting there overlooking the large pond watching the birds that were there Heron’s, Coots, Terns, Great Crested Grebes, a Cormorant, and some seagulls.

What caught my attention though was a pair of broad bodied chasers (Dragonflies) one blue the other yellow. They were chasing each other backward and forward with brief periods of mating whilst flying. Now I love photographing dragonflies though it’s not easy as they are so damn fast I managed to get a couple of half-decent ones, which you can see below.

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With about 30 minutes to go, I made my way back to the cafe, it was too late for a coffee so I went over to the chicken coup that they have to take a couple of chicken pics for my youngest daughter who loves chickens. I think the came out ok.

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So now it’s blog time then bedtime, I’m completely knackered.

Bring on tomorrow a day of reading, writing and relaxing,

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

 

 

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

Endgame

Spoiler alert ” there are no spoilers in this post”

After resting for 2.5 days, I went for a coffee at the Cafe in the Park in my nearset town. I got there around 2:30pm and sat outside the Cafe drinking a very nice coffee, the sun was shining and I started to read my book “East of Croydon”, I then put on my  headphones listening to The Stranglers greatest hits, every now again I would look up  from my book and there would be a squirrel rumaging for food or a robin sitting in a Branch singing. Perfection, best medicine in the world.

So 3 o’clock arrived and so did my smiling boss, unfortunately that was the moment the sun decided to go in. So we moved inside to the Cafes conservatory to drink our coffee and talk about my health, football and the forthcoming meeting with our  HR rep, about how and when my being released from my job on medical grounds will be decided. Now I am very sad about what is going to happen, as I love my job and the people I work with. There is no bad feeling on either side and I really hope my health is going to  allow me to volunteer in the office.

Endgame

To say I was excited about what I was to do next would be an understatement, I was about to tick off another item from my bucket list. A trip to the Cinema to see Avengers Infinity war : Endgame. Luckily it wasn’t  going to be a packed cinema due to it being an afternoon showing on a schoolday and I managed to get an aisle seat Row G. Everything was set perfectly, the advertisments finished, the trailers began, the anticipation was rising.

Then just as the film was about to start two late comers arrived, they started walking up the aisle. Now the seats are quite small and there isn’t much leg room, hence the need for the aisle seat,damn they were sitting in my row so I would have to get up, so before I was fully standing they pushed passed whilst muttering “sorry” as I dropped back into the seat.

The film stareted everyone went quiet then I heard tose words you dread in the Cinema “scuse me”, it had only been 10 minutes, again never quite got to my feet before he pushed past, back I dropped, then repeat sequence 5 minutes later whe he got back from the loo.

Relax , deep breath, back to watching the movie, 30 minutes later repeat the sequence but it was his mate this time, one of the things that I really had a problem with was the absolute stench of smoke and beer

Relax, deep breath get back towatching the movie again. 20 minutes pass and I start to her a really strange annoying  noise, after about 10 minutes I realised that guy nearest me had fallen asleep and was snoring, this went on for about an hour  when he suddenly woke up and stared to pee into his empty drinks bottle, I relised they were getting up again so as fast fast as I could( which is close to watching somebody move in slow motion) I tried to stand up and get out of the way, no chance they caught my left leg as they ran past, so I fell back over the arm of the seat, landed with my backside on the seat and my legs and stick still sticking over the arm and out into the aisle, before I had sorted myself out they’d legged it through the door and were gone never to return, carried out a quick pee check to make sure I hdn’t been splashed in  all the confusion. then……..

Relax, deep breath and an extra strong mint this time, then settled down to watch the rest of the film. Wow the film lived up to all my expectations and more, I would reccomend it to everyone whether you are a mavel fan or not.

So all in all another blooming good day.

In the words of  Police Seargant Phil Esterhauss from the tv show  Hill Street Blues

“Let’s be careful out there”

all the best, Gary

Ps When I said the sun went in when my boss arrived, I wasn’t inferring that she was the cause of it going in. I needed to may that clear. She’s a little ray of sunshine really 🙂

 

 

 

Balance

For me each day is a balance between being what I consider is normal for me, or what I would class as cream crackered/barely functioning. So what I try to aim for is anywhere below cream crackered, which makes recovering a lot easier.

yesterday I took a the bus into town, which for people that know me causes a lot of pain to my neck and back, at the moment though it’s safer than me driving the car. I know that some of you will ask “why would you want to put yourself through that?” Well the answer is easy, I had a meeting that was very important to me, so I plan for these these days carefully and well in advace.

On the occasions I am able to get out of the house and socialise, or even go somewhere I I can sit have a coffee and people watch, which can be such good fun.

On this occasion though I was meeting up with a friend from work who I hadn’t seen for a while. I’ve been really looking forward to seeing her and catching up. She’s always been very supportive to me and knows all about the health condition’s I live with,  which means I feel extremely comfortable in her company and also means I don’t have to pretend that everthing is OK,  and I can just enjoy being me. It was so nice sitting, talking and drinking coffee, unfortunately I probably talked her ears off.

Somebody once said to me these moments are food for the soul, now I’m not a religous person but, the phrase has a really nice ring to it, to me if it means it makes you feel good inside, then I agree.

Now I also had two more surprise encounters which I would class as food for the soul yesterday. The first was bumping into my boss who was in town with her Mum. It’s always lovely to see the boss and have a chat as she is another wonderful person I feel comfortable being around.  It was also lovely to meet and have a chat to her Mum who is reading the same book as I am at the moment ” East of Croydon by Sue Perkins”, it was really nice talking about he book as we are both roughly at the same part in it, so no spoilers.

What a great day it was turning into for me in the space of two hours I got to meet  three wonderful ladies.

Okay, so was it possible that my day could get any better, well actually it COULD, as i met up with my youngest daughter, who was on her lunch break, she hadn’t had a great  morning at work so the little present I had got for her (a jewelry hanger) cheered her up a bit and I treated her to a lunch of cheese and Broccoli pastry with an Apple & Caramel Danish, she always puts a smile in my heart, but then  that goes for my wife and all three of my daughter.

After saying my goodbyes to my daughter, I was a bit naughty and bought myself a bag of chips  with lashings of salt & vinegar to have whilst I waited for my bus, which to my surprise was actually on time.

What a great day, I felt so lucky I went and bought a lottery ticket but I haven’t checked the numbers yet.

Anyway sometimes I feel it is worth the extra pain for a few hours just so you can do something you really want to. Time now for a lazy day,  so it’s earphones in and The Clash on the play.

Take care and be kind to each other, 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

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,

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”

 

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.