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.

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

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

And the winner….. is!

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

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

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

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

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

Bring it on 😁

 

 

 

Autumn

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

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

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

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

       “Always forward, forward always”

                                                                                                                                Luke Cage

 

The NHS

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

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

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

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

They are just the most amazing people.

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

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

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

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

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

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

 

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

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

 

 

Wheels

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

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Dora decided she wanted to get in on the photo.

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

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

Feeling pretty positive at the moment.

Hot Stuff

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

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

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

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

Now here is the pictoral proof.

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

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

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

Then on the Saturday,

IMG_20180909_111034516_HDRthe experimenting began, really enjoyed this bit.

 

On Sunday though

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

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

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

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

 

Be kind to yourself

Gary