What is the point of paying into a welfare system.

Warning this article may contain a swear word or two, Well that’s 3 hours of my life I’ll never get back.

I knew today was going to be bloody awful.

Firstly there is no nearby disabled parking for those attending the Horsham jobcentre, actually there is no nearby parking at all that I know of.

So for those of you that live locally, I had to park in the Swan Walk multi storey car park, not ideal, as it took me 30 minutes to propel myself in my wheelchair to said jobcentre.

I still managed to arrive 20 mins early.

On arrival I was faced with two bloody great sets of fire doors, and after watching me struggle with my chair and the door, a security guard walked over and held the door open.

Here’s a little twist though, the pavement slopes down slightly towards the first door, which when opened revealed a low step, I found  this ot when I was almost tipped out of my chair, watched by the security guard, no offer of assistance and no warning of the step. Happy days.

I was left to get through the second door myself. I was then checked in for my appointment and told to got to the waiting area. I was an absolute wreck, I was exhausted, and in so much pain I just wanted to swear and ask for a ketamine injection, well it worked for me the last time I was in hospital.

After waiting for around 10 minutes, I was called over to the interviewer, I handed over all of the forms I’d been told to bring, they were then scanned I to the system and handed back.

Next I was told I would have to sign a contract, to basically do what they tell me to do.

This is how the contract goes.

If I am late in attending a meeting with my soon to be appointed work coach, I will be sanctioned. If I miss an appointment, I will be sanctioned plus fined £10.40 per day until I attend the rescheduled appointment. If I phone them to say I cannot make an appointment for whatever reason, even a hospital visit, they can choose to sanction me. Finally if I get a total of 3 sanctions all benefits will be stopped.

So the first 15 minutes were all about what they would do to me. What they could do for me was not even discussed, for the last five minutes of the meeting, he told me it would take around 10 days for a decision to be made, by somebody I’ve never met, on whether I get any money or not.

I will also have to go through a work capability assessment, but he couldn’t tell me when that would happen either.

So today comprised of travelling to and from Horsham by car 1hr 20mins.

Wheeling myself to and from the jobcentre in my wheel chair 50mins.

A 20min interview, not the 1hr to 1hr 20 mins I  was told

30mins of waiting and resting.

So if as they say, a country is judged on how it looks after it’s most vulnerable citizens, the UK has failed on an epic scale. These are sad times that we live in.

Below is a picture of my daily journal entry from yesterday, what I wrote pretty much sums up how I feel after what happened today.

20190815_1806186789575835650364237.jpg

Take care

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

Not Good

Not the best of weekends,  on top of my ever present widespread pain and fatigue, I woke up this morning with the beginnings  of a throat/chest infection, so pain and fatigue has ratcheted up.

Also this morning, my final pay packet dropped onto the doormat reminding me that I only have 18 days to go before I  become unemployed, I’ve accepted and understand that I  am now too sick to work. There are and never will be any bad feelings, as the last 2 years have been brilliant.

There is always a good chance of not being able to work again as in being employed and that makes me sad, but I’ve been making plans and have been looking into getting set up as self employed, so I’m feeling pretty positive about that.

I will miss the daily routine of my current job that I love, and the daily contact with my amazing colleagues. I know I’ll still get to meet up with them from time to time for coffee and a chat, and I know  I can contact them anytime I want.I will also be looking forward to being able to help out by volunteering from time to time when I am feeling well enough.

Finally this afternoon I have my first meeting with the physiotherapist, I’ve really been looking forward to this meeting as its been a long wait and I’m positive I will learn something I can use that will help me in some way, just wish I wasn’t feeling so crappy.

Take care

Gary x

Pain

Sometimes I wonder how in the hell can my pain levels increase any more but they do, I never know how long these periods will last, could be hours, days or even weeks, and so far this episode is 3 days in and counting. It actually reached the point last  night,  I  was wishing that if  having your legs amputated was an option I would go take it.

I’m not making light of amputation or making a joke of it, I  have seriously thought of talking to my specialist about it, as I have heard of people having this done, though I believe it is very much a last resort. For me at the moment the doctor’s have gone as far as they can down the medication pain relief and nothing has even come close.

The pain in my legs has been pretty much 24 x 7 for the last 8 years and steadily getting worse, but at times like these I just feel like I’m going out of my mind. The pain just takes over and blocks everything else out, it makes it almost impossible for me to concentrate on anything, do anything, or even think straight. It’s taken so many tries just to write this.

It’s  also at times like this I  have to try and convince myself that maybe there will be a medical  breakthrough around the corner, it’s  a real battle to remain positive  during these times, but it still doesn’t stop the real dark thoughts creeping in at times.

Going crazy, but not quite there yet, 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.

thumbnail

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

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 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.

dsc_6852dsc_6828dsc_6866dsc_6826

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.

dsc_6865

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

 

 

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.

15577509099805192863915956359875.jpg

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.

 

 

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

A Good Bank Holiday Weekend

Good Friday

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

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

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

Saturday

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

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

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

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

Also another one of my monthly bucket list challenges started.

Easter Sunday

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

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

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

Bank Holiday Monday

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

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

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

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

What a perfect weekend

Take care of each other

Gary

 

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

 

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