Work Capability Assessment.

Back in June,  I was released by my employer as an administrator for the NHS on medical grounds, because I had been off work for over a year. The contract termination was handled with compassion and fairness, and I remain on really good terms with my old co-workers and have regular catch-ups and coffee.

The next step was to sign on for unemployment. Now when I signed on for social security payments, the staff made me feel like something they’d scraped off the bottom of there shoes, they made me feel worthless, that it was all my fault I couldn’t work. There was absolutely no offer of help, nothing about what they would do to help me, all I got was  a contract I had to sign to get money, what it also  says, is you must do everything they say when they say, or you will be sanctioned, which means your money will be stopped, 3 sanctions and they stop your money for 3 years. Even though I am unable to work due to complex medical conditions, I  am still made to grovel for help.

Now I had been signed off work  by my doctor indefinitely, but the jobcentre tell me I will have to attend a work capability assessment, the reason for this assessment is because they don’t believe me,and they don’t believe what 7 medical specialists have said and diagnosed over the last 7 years, plus reports from several General practitioners. The stress they put me under is inhuman, they made me feel worthless,  a liar and a cheat.

Well it’s now 5 months since I signed on, and  Monday I finally had to attend my Work capability assessment. It’s just over an hours drive to get there, though any travelling over 30 mins these days is difficult and extremely painful. Luckily I had a lot of help to get me there from good friends Karen and Sue,  so I  wouldn’t have to drive.

When we arrived at the centre we found that the only disabled parking bay was about 25 yds from the main entrance of the jobcentre, and was on a slight slope, not helpful when your disabled, and because your there for a work capability assessment your can’t use it, instead you have to make your way down and around  the outside of the building, then you have to go down a driveway that has to be another 75 yds to the assessment centre entrance, only, the top of the driveway is coned off so  you can’t be driven and dropped off.

Anyway we arrived on time, in fact we were 15 mins early, unfortunately  we had to wait around for  an hour past my appointment  time. The receptionist did apologise and said it won’t be much  longer as your assessor is just reading your notes. Now I’m sure that some of you will be saying , oh well shit happens an hours not too long to wait, so let me put it from my side, in the contract I had to sign, it states that if I am late for or miss my appointment I  will be sanctioned and lose my benefits, then the week before the appointment I received several texts reminding me to attend, and reminding me that  my benefits will be affected if I don’t attend, then to top it all off I  got a phone call to remind me about attending. So by Friday night my stress levels were through the roof.

They already have the information which they will question me on, because they sent me a 20 page questionnaire  to fill out before I attended,  I  also had to take along proof of the medications I take, MRI Scan pictures of the damaged area of my spine and the spinal cord inflammatory scar. In fact proof of just about everything. About half way through the questioning the doctor tells me she hasn’t read my notes and  she doesn’t really know much about Osteoperosis. I was told the doctor had read my notes and they would have a good understanding of my conditions,  what a joke. Once the ordeal was over, Karen  asked them if we could leave through the jobcentre entrance as I was struggling, so it only took us less than a minute to get outside to the car park. So why make people take the long way, why make it harder.  It makes you think.

Now I just have to wait, to see if they think I  am fit for work, or not, by there standards not medical ones, and I  have no idea when I will find out.

I have to say that they way this Tory government, the DWP, Jobcentre +, ATOS, & MAXIMUS, treat the sick, the disabled, the homeless and the poor is disgusting and inhumane. Why are we demonised? Why are we penalised? Why can this not be carried out with compassion and fairness?

Why?

I still feel I am one of the lucky ones though, simply because I have an amazing support group of family and friends around me, but for those who don’t  have that, and end up homeless, or end up taking there own lives as so many 1000″s already have. It really makes me very angry, and it absolutely breaks my heart, nobody in the 21st century in the UK should be treated this badly . We are the Worlds 5th richest country.

Thank you Karen for accompanying  me, and supporting me during the assessment, and thank you Sue, for driving me to Brighton General for the first leg of my journey.

 

Take care all,

Gary x

 

Pain

You know what pain is a bloody pain, for me, over the last week/week & a balf I have been struggling with writing my blog, due to a sudden rise in pain, in certain parts of my  body, mainly my hands/fingers, chest/left shoulder, neck/throat. Which has made it very hard for me to focus and concentrate. Worst of all is the fact that it has affected my ability to read or write for any length of time. I’ve pretty much used every technique I  know for dealing with my pain, but with little success.

Medication, doesn’t work, and the physio has told me there is very little they can do to help either. Even resting has had little to no effect.

On the bright side though I still I have my dog, my garden, my music and the sunshine to keep my spirits up. My family are looking after me as best they can, whilst  y pain has turned me into a pain which helps a lot, and tomorrow I will actually be able to get out of the house and enjoy a bit of socialising with cffee and friends. So it’s not all bad, is it?

All the best for now.

Be careful out there in the sun and heat, plenty of water and shade.

Till next time, take care

Gary x

Peaceful morning

What a great morning, the sun was shining, a cool breeze was blowing, and the birds were singing in the bushes and trees.

Im now enjoying my coffee, Dora is sleeping at my feet on the patio, after I spent about 20 minutes brushing her, the resulting pile of fur is now being carried off by the little sparrow’s to line there newly built nests.

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Perfect start to the day.

Take care,

Gary x

 

To infinity and beyond

The day is almost here, tomorrow will be a turning point for me. In the afternoon I will be attending a meeting with the HR department for the organisation I work for, the NHS,. The meeting is about releasing me from my contract on medical grounds, it’s all very amicable and I’m prepared, but, still it will be a difficult and sad time for me for  a while.

I  can say that without the NHS and it’s amazingly talented, hard working staff, I wouldn’t be around  today.  They have looked after me and my various longterm health conditions for 57 years now, I’ve been a volunteer for them for 7 years, they have employed me as an administrator for the last 2 years, and I have loved every minute of it.

I will miss the work, tutors, participants, the friends I have made in fact I  already do, as I  have been off work  for a year now. The coffees  and the chats will continue with my colleagues, if they’re not sick of me yet, and at some point I hope to be able to return to being a volunteer in some capacity.

I have already made plans and set goals on what I want to do, and how I will achieve them, I am feeling really positive. Exciting times ahead.

As the saying goes “one door closes and another on opens”.

Take care

Gary x

Music Vs Pain

Over the last 3 years, listening to music has become one of the main tools I use to help with my pain, I can use it to help me relax,  or to carry out certain tasks by distracting me from the pain, tasks such as driving short distances, reading, writing or tending my Chilli plants.

I have built up a wide and varied selection of styles and band’s that I like to listen too, so selecting the correct band/music is very important, as my mood, pain level and task are all factors in selecting what I will choose.

For example, travelling by Bus, Car or Train I have a specific selection of bands that I would choose from, such as – Nirvana, Foo Fighters, Queen, Nickleback, Counting Crows, Garth Brooks, First Aid Kit, The Beach Boys, The Mavericks or The Beautiful South.

For more leisurely pursuits such as reading or writing, I have a different selection that I choose from that consists of – AC/DC, Kiss, The Carpenters, The Clash, Elvis Presley, Fleetwood Mac, Red Hot Chilli Peppers, The Vaccines, The Stranglers and 30 Seconds to Mars.

As you can tell a nice easy listening selection for an ageing heavy metal rocker like Myself. Here’s the proof with my passport picture from 39 years ago, 18 yrs old.

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I know what your thinking, did his parents really let him go out dressed like that? Sadly I haven’t aged so well.

Rock Star or what?

There has been a lot of trial and error in putting together my playlists which has been so much fun, as well as being important to me so I get the results I need.

One last thing though, is I have to remember to set an alarm on my phone to make sure I get up and move around, otherwise, I could end up in a lot more pain than I started with,

Good luck if this is something you decide to try.

Take care

Gary x

Scary Stare

The Wife has been collecting items for The Ingfield Manor Fete, which is this weekend. Unfortunately, there is one item that has me a little spooked the item is a 3/4 size stuffed toy, Lion.

Personally, I think the damn thing is possessed it is laying on the sofa to my Left, which means every time I turn to the left to look into the garden it’s right there in front of my face staring at me occasionally I forget it is there and almost have a damn heart attack.

So here is a picture of the view I see.

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I’m thinking of calling a priest in to carry out an Exorcism. How did this become a child’s cuddly toy? It looks more like Scar than Simba.

Have a great day and don’t look at the picture for too long.

Take care.

Gary x

I Can’t Unsee That.

Have you ever had one of those moments when  you’ve thought “Now I’ve seen that, I can never unsee it”. Well I had 2 instances like that today.

I was in town buying an Anniversary card and I started to head off home across the town square to get back to my car. Now, when I walk, I walk slowly with my head bent down slightly due to neck pain, then every now and again, I’ll look up to make sure I’m I not going to walk into something.

Anyway back to the story, so I was walking across the square when I looked up and the sight I beheld made me cringe inside. On the bench about 10 feet in front of me, was a lady. I’d say she was about 80 years old and she was reading the paper, I know your thinking that’s not so terrible.

The trouble is she was wearing a knee length skirt with her knees were very far apart and wearing no tights or stockings just bare white flesh. That sight is now burned into my brain and I’ll never be able to unsee it. I just hope she didn’t see the look of horror on my face.

I carried on across the square and made my way to the alley that leads to the car park, I could hear footsteps behind me which, sounded like high heels and whoever was wearing them made it sound like they were in a bit of a hurry. I’m not surprised as I’ve said before my walking is pretty slow these days. Then as we emerged from the alley this woman shot past me,.

she was a tall blond lady wearing a fur jacket and pale leather trousers. Now, it was a hot day and even at my slow speed I was perspiring. I don’t know if any of you have ever heard the noise that slightly sweaty skin makes when you sit down into a leather chair, move in it or get up out of it, well it sounds like a wet fart and that’s the only way I can describe it. So if you put together a hot day, leather trouser’s and perspiration you get the sound of a loud wet fart, it means every time her thighs brushed together you got a loud wet fart on rapid fire, it’s a sound I will never forget, I know I should have felt sorry for her, but I was too busy wetting myself laughing and I so needed a good laugh.

take care

Gary x

 

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.

Day 4 Wheels

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

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

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

Take care

Gary x

 

A good day

Day 2 of the journey#

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

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

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

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

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

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

onwards and upwards, let’s see what tomorrow brings

Lets be careful out there

Gary x

 

 

Yin & Yang

These days my blog’s seem to be like London buses, you wait for for ages  then two come along at once.

I woke this morning in agony,my legs are the worst they have been in a while, standing, sitting, walking or liying down is making no difference at all. So far today my go to coping techniques are not helping, as when the pain is this bad I really find it had to focus or concentrate. The music will be going on soon but reading todaywill not be happening.

My Thigh and calf muscles hurt like hell, but at the same time seem to have turned to jelly, my knee’s, ankle’s and feet are screaming at me and the only way I can describe the pain in my shin’s is by comparing it to having a  toothache deep within the bone.

On the plus side though I am sitting in the garden with Dora, the sun is shining and the birds are singing, the new wind soinner we have looks fantastic in the breeze. So it’s now time to make a coffee, put the Foo Fighters on, use the wheelchair as much as I need to and try to relaxas much as possible before my medication review with the GP this afternoon, I guess you could say I’m going to behaving a yin & yang day today.

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Have a great day and enjoy the little things, Gary x

Changes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for listening to my ramblings

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

Love you all, take care, Gary

Just for good luck  COYI.

 

 

Frustration

One thing I know for sure is that strees will make my pain spike to the point it will make me feel physically sick.

That is the point I  have arrived at today, normally  I’m pretty good at handling  my stress levels through medication and CBT techniques.

Every now and then this fails me as I am only human.

Today I had to call my pension provider to discuss my pension, it is this process that has caused my stress levels to rise to a point where I wanted to explode. I did raise my voice with the final person I  spoke to but luckily did not swear.

So I  phoned  my pension provider today around 11am, firstly I went through the automated security questions then was put on hold, finally spoke to a human and asked the security questions again, she asked why I  was calling.

I was then told I had got through to the wrong department and she put me through to the correct department at least she said it was..

Back on a lengthy hold, finally spoke to another human, went through all the security questions for a 3rd time, explained why I was put through to them and was instantly told I had been put through to the wrong department again, she said she would let the correct department know I had already answered the security,

Then was put on hold for a long time, finally spoke to another human being, who made me go through all the security questions for a 4th time, I asked my question but things had become a little heated by this point but i managed not to swear.

So I was put on hold yet again while she made some enquiries, after at least 5 minutes she got back to me, I apologised for getting angry and told then she told me they were sorry for messing me about and for all the waiting, then she told me I now have to wait at another 7 to 10 days before things sorted.

What is it with financial organisations treating our money like it is theres.

As I  hung up the phone after spending 30 minutes on hold and 15 minutes talking to someone I had the urge to scream, shout, yell and cry all at the same time.

So writing this and drinking a coffee is the first coping mechanism for when I get stressed, the next step will be to put on some music probably the Foo Fighters or  Now that’s what I call driving Rock. Then tonight read som more of my book.

Take care.

Gary

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 🙂

 

 

 

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

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

Any way here goes.

My Bucket List.

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

 

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

Take care

Gary

A Better day

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

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

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

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

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

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

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

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

Take care

Gary

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.