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

 

Football

Okay so good and bad this weekend, first the bad The Hammers lost away again on Saturday at Old Trafford against Man Utd 2 – 1, so still no away win in 2019, but we have over 40 points so we are safe from going down this season.

On the plus side the West Ham women’s team beat Reading in the FA cup semi – final on penalties and now face Manchester City in the FA cup final, fantastic result.

I started going to Upton Park in 1983 when the great John Lyall was manager in the old first division Tony Cottee was top scorer that year, the legend that is Billy Bonds was Captain, it was the great Trevor Brookings last season, at the back and Alan Devonshire on the wing. ive seen many great players over the years, Julian Dicks, John Moncur, Paolo Di Canio, Frank Lampard jnr, Rio Ferdinand, Joe Cole, Martin Allen, Mark Ward,Ludo Miklsoko, Steve Potts, John Moncur, Steve Lomas, Jermaine Defoe, Frederic Kanoute, Marc-Vivien Foe, Trevor Sinclair, Glen Johnson,  Ian Pearce, Tomas Repka, Yossi Benayoun, Mark Noble, Teddy Sheringham, Bobby Zamora, Carlos Tevez, Matty Etherington, James Collins, Phil Parkes, Alvin Martin, Frank McAvennie, John Hartson, Slaven Bilic, Stuart Pearce,

 

I grew up in South London, so for me my local teams were Tooting & Mitcham, Crystal Palace or Wimbledon but none appealed to me. For me finding the team I have supported since 1974 has been West Ham United and was down to my Grandfather and his for the team he had supported since the late 1920’s. I would sit with him on a saturday afternoon watching world of sport and waiting for the teleprinter to come up with the football scores and pools results, all the time I would be  listening to stories of the greats Moore, Hurst, Peters and god knows how many times I heard how West Ham had won the World cup for England I was hooked. When I started following them the Great Ron Greenwood was still manager and he introduced the free-flowing style of football based on the Hungarian style. two years later Ron was managing England.

To me West Ham are the greatest team in the world and every year they put you through the emotional wringer. all the games I have seen were played on the hallowed ground of Upton Park, I watched games from all 4 stands the atmosphere in the Chicken run (east stand) though was the best, most games I saw though were from the front row of the West stand. the best ever atmosphere though was on Tuesday night games under floodlight with the stadium singing I’m forever blowing bubbles, it was so emotionally charged the hairs would stand up on the back of your neck.

I miss those afternoons with my Grandfather and his stories and I miss those days at Upton park watching West Ham playing the beautiful game. One of the nicest things for me was being able to attend games with my wife and all 3 of my daughters, so at least I know I passed something Important on.

Now all I have to do is watch them play at the London Stadium a few times a year which you may have noticed is no my Bucket List.

Take care

Gary

Bucket list update

Off to a flying start.

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

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

Type 1

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

Type 2

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

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

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

Gary

Bucket List

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

Any way here goes.

My Bucket List.

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

 

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

Take care

Gary

A Better day

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

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

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

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

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

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

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

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

Take care

Gary

F##k it

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

Sorry about that but today is one of those days.

F##k it

F##k it

Fuck it

F##k it

F##k it.

.

.

.

.

.

.

.

Fuck it.

 

 

 

 

 

 

 

 

 

 

2 steps forward 3 steps back

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

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

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

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

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

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

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

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

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

Goodnight, good luck and good health

All the best

Gary

Meds day 9

Things are changing

Ok, so the side effects from the new meds seem to have gone and my sleep pattern is almost back to normal. One thing that’s changed though is I’m no longer getting the burning and freezing sensations that I got in my hands and feet. So I’ll take that a positive step. Next step is next month when I go to hospital for my first Lignocaine infusion which may or may not help with the pain side of things.

I work for the NHS and the department I work for is called the Expert Patients Programme (EPP), though I am currently on long-term sick leave.

If you want to follow us on twitter @sct_epp

If you want to follow us on Facebook http://www.facebook.com/sctepp

Our web address is below, if you are interested in what we do.

https://www.sussexcommunity.nhs.uk/services/servicedetails.htm?directoryID=16306

Anyway on our Twitter feed today they shared a poem. Now I’m not really one for poetry, but this one really struck a chord with me, I could really relate to the words and it got me thinking about what I do and  how I act.

So I thought I would share the poem with you, it’s called.

Behind The Mask

© Melisa Bernards

Hiding the hurt, hiding the pain.

Hiding the tears that fall like rain.

Saying I’m fine when I’m anything but.

This ache in my soul rips at my gut.

My skin is on fire; I’m burning within.

The world must stay out; I’ve built up a wall.

My fragile lie will collapse should it ever fall.

Lonliness consumes me; it eats away the years.

Until my life is swallowed by unending fears.

Waiting for someone to see I wear a mask.

And care enough to remove it; is that too much to ask?

 

Take care of yourselves

Gary x

New meds day 6

Ok, so day six of taking my new medication.

what’s changed

Pros

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

Cons

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

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

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

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

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

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

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

Adios amigos

Gary

Opioid Days

Day 4

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

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

Side effects    

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

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

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

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

Take care,

Medication

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

Pro’s

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

 

Con’s

Permanent headache

Constant drowsiness, lack of attention, Confusion, incresed forgetfullness

Constant tiredness & fatigue

Sleeping problems are back

More frequent hot flushes

feeling more unsteady

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

Itching all over

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

just taken me 1 hr 15 mins to write todays blog

On the plus side though:

I woke up this morning so obviously thats good

Enjoyed my morning coffee

Sense of humour still seems to be working

 

 

Been A while

My last post was back in November, too long but a lot has been going on, firstly my health nosedived over a short period of time, So here is a little timeline of how things have gone since I had to stop working in June 2018:-

June 2018 GP also referred me to an Osteopath to help sort out my Osteoperosis medication which was causing problems this was one of the issues that had forced me to stop work.

July 2018 Contacted local mental health services to try and get some help on dealing with all that is going on with me was told it would probably September 2018 before a place was available. Unfortunately I am still on the waiting list, I’m not sure what they can do to help me any more, or even when they will be able to.So as a result I have lost a lot of faith in them and it has added slightly to my anxieties.

August 2018 Saw my neurologist in London who upped my meds and referred me to their Pain Management centre at Charring Cross Hospital which I attended yesterday 13th March 2019. I will come on to how that went in a bit.

September 2018 went to my appointment with the osteopath a very nice and helpful Doctor who listened to me and was very straight with me in her answers and decided to replace the weekly pills I was taking with a yearly infusion which I had my first session at East Surrey Hospital Cancer Suite. I can’t praise the staff on how welcoming and compassionate they were towards me they we even managed to have a laugh. They made it a very enjoyable experience.

October 2018 I contacted the local mental heath services again but was told there was still no therapists available in my area and that they would contact me when a therapist became available.

November 2018 the symptoms of my long term conditions jumped again usually my symptoms just gradually got worse over time with occasional significant jump. it was also the last time I was able to go for a coffee and meeting with my manger  or work colleagues at a really nice local cafe. Each month I would really look forward to the coffee mornings  as they were pretty much the only social engagementI had and that I really enjoyed, All of my other trips out revolved around the Doctors Surgery, The local Pharmacy or a visit to one of the many Hospitals I attend.

December 2018 things started and it seemed my symptoms were settling down again, so I was invited to attend a team meeting at my place of work, it was a fantastic morning at   with the amazing people that I am privileged to call my workmates and really started looking forward to the upcoming Christmas dinner which is always an amazing get together with colleagues and volunteers.

But it wasn’t meant to Be as my health had another setback with the pain I get in my lower spine and the base of my neck significantly and this has pretty much left me unable to drive any distance or use public transport because it causes the pain becomes almost unbearable. I have also been referred for physio so I am now on two waiting list, which of course links into the title of my blogsite.

Then during Christmas I had to go to hospital to have extensive blood tests prior to my upcoming osteoporosis treatment.

At last an end to the a year that has not been one of the finest I’ve experienced or as the Queen would put it ” My Annus Horibilus”

January 2019 new year new hope. Got off to a good start my Osteoporosis treatment went really well. Then out of the blue a phone call from the local health service, instead I came down with a bump they offered me a place in a location I was unable to get to. They knew this would be the case, but felt they had to offer it to me. The call ended with being told that I was now near the top of the list bu still waiting.

Had a couple of good days after that with home visits from the boss and a colleague, who brought me coffee, news on what was happening as regards to my continued absence from work, we had a laugh, they always lift my spirits, my dog Dora loves them and they always get a parting present BY BEING covered in her fur.

Another plus came along at the end of the month and that was a chair I bought.

thumbnail

It reclines, it raises me to a standing position, it has heating and also has 3 massage settings but alas no cup holder and the best bit was the wife spotted it was 50% off the price. Bonus.

February 2019 Barely ventured outside the house as the pain and fatigue levels are getting worse, falls have increased in frequency Because I experience a loss of motor function in my legs, no warning I just go down.

My short term memory has turned to mush as well as powers of concentration. On a more positive Dora the dog and myself had another couple of coffee visits from my wonderful colleagues, though I think secretly it’s the dog there coming to visit.

March 2019 Has arrived and there are still some problems but there are some really good positives as well the love and support that I get from my wife every day which reminds me how strong we are together and that I would not be able to cope on my own without her. Second are the truly amazing people I work with, again I don’t think  I could cope without them too and there is my dog who always makes me smile.

So yesterday 13th I had an appointment  at the pain management centre in Charring cross Hospital and my wife was unable to take me and this is why I said that I would not to be able to cope without the constant support I get from the people I work with as my wonderful boss insisted that she would take me in her car, it was a long day but the appointment went really well I am now trying a new medicine from the opioid group called Tapentadol and will start trying a Lignicane( an Anastetic)  infusion which hopefully will get the nerve pain under control and if it works it is a treatment I will be able to have done regularly.

It’s been a  bit of a roller coaster ride, hopefully things will start to smooth out a bit, the people that matter the most to me are keeping me positive  and sane, sort of.

So again thank you to my wife “I love you” and to my colleagues and friends you have my gratitude and I love you all too. K, N & S.

Be Kind to yourselves x

P.S. Boss thank you for getting me home safely, but true to form I had a bit of a moment in the Kitchen last night whilst making coffee and I think I brokena toe when I was attacked by the washing machine 🙂

Lists, My Favourite…………….?

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

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

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

 

My Favourite Meals in no particular order are.

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

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

Hope you all have a great weekend.

 

Music One of the best medicines in the world.

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

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

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

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

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

Keep on trucking, and feel the groove people.

MC Gazzer

A bit of positivity goes a long way.

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

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

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

 

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

 

And the winner….. is!

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

250px-The_Great_British_Bake_Off_title.jpg

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

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

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

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

Bring it on 😁

 

 

 

Autumn

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

3593317420_abbd2b843f_o

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

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

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

       “Always forward, forward always”

                                                                                                                                Luke Cage

 

The NHS

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

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

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

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

They are just the most amazing people.

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

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

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

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

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

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

 

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

20181023_125555.jpg

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

 

 

Wheels

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

20181022_123111.jpg

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.

Waiting and waiting and waiting

Struggling a little at the moment, I’m almost 4 months into my enforced absence from work due to my long-term health conditions worsening.

Back in early July 2018 I was refered to a local Rheumatologist as the medication I was on for my osteoporosis got stopped due to some horrible side effects. Since then the appointment I was given has changed date 3 times.

The first appointment for the 12th August was booked and canceled in the same letter that was sent to me, the next day I received another letter changing my appointment to 29th November and also changing the location from Horsham Hospital in West Sussex to Dene Hospital in Caterham, Surrey. Then two days later I received yet another letter changing the date of my appointment again to the 27th November,  but still in Caterham 35 miles from where I live, this may not seem like much of a distance to some but for me it’s a nightmare due discomfort and to pain that traveling causes me.

city man person people
Photo by Pixabay on Pexels.com

Currently I use no pain medication in fact it has been that way for over 6 years now, as the medications I have been tried on have caused side effects that would not only have stopped me from working but would have stopped me from having a decent quality of life. Now back in July when my health conditions flared up my pain levels rose to an all-time high. So in early August my Neuro specialist in London refered me to the Charing Cross Hospital pain team and today I got my appointment through for the 13th March 2019.

baby child close up crying
Photo by Pixabay on Pexels.com

So now , present day I am also waiting for a referral to a chronic fatigue clinic by my GP and I am waiting for a report and decision from my employers occupational heath team as to whether or not I will be offered medical retirement.

So “Hope for the best and plan for the worst” is how I am looking at all this now.

  1. I am remaining positive because I know that things are getting done even though it may be slow.
  2. Luckily I still have my dark and twisted sense of humour and have the t-shirts to prove it
  3. I am practicing more with my wheelchair now as I have finally had to accept that I am going to have to use it more in public.
  4. My wife and 3 daughters are keeping my spirits up and have promised that they will not treat me any different, which just means they will carry on making me laugh by taking the p**s out of me.
  5. I also have a very understanding boss and brilliant work colleagues who also support and keep me going.
  6. I have also learned some great tools through the Expert Patients Programme for dealing with the pain such as distraction and breathing techniques and planning my days so that I get plenty of rest.
  7. I’m conquering the boredom by reading again, growing chillies, making a memory book, writing a blog (must do better) and following West Ham.
  8. Finally I have my dog Dora she is an Anatolian/German shepherd/Therapy dog, she’s always there for me, always listens to me and never criticises me.img_-2aq59c
  9. Love this Quote

    Grant me the serenity to accept the things I cannot change,

    the courage to change the things I can,

    and the wisdom to know the difference.

    REINHOLD NIEBUHR

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.

IMG_20180903_194445881

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

IMG_20180909_134417709_HDR

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.