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.

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

 

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

A bit of positivity goes a long way.

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

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

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

 

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

 

Autumn

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

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

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

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

       “Always forward, forward always”

                                                                                                                                Luke Cage

 

The NHS

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

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

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

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

They are just the most amazing people.

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

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

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

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

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

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

 

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

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

 

 

Wheels

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

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Dora decided she wanted to get in on the photo.

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

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

Feeling pretty positive at the moment.

Hot Stuff

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

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

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

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

Now here is the pictoral proof.

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

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

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

Then on the Saturday,

IMG_20180909_111034516_HDRthe experimenting began, really enjoyed this bit.

 

On Sunday though

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

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

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

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

 

Be kind to yourself

Gary

 

Sod it, another Flare Up.

Eight weeks ago my health took a bit of a nose dive and I have been on sick leave since then. This was not good as I love my job, thankfully I have a very supportive and understanding boss which has helped to remove a lot of the stress and guilt that I would normally have felt at being off work.

Over the last eight week’s there have been quite a lot of negative moments for me but there have also been some really good positive moments too, which I am going to concentrate on in this post. The first of these positive moments was during a talk on the phone with my boss, I was telling her about my worries and fears of not being able to work and not being able to carry out my volunteer tutoring role, as these are such important part of my life and wellbeing. The first thing she did  was to reassure me that I didn’t have to worry about work and to just concentrate on taking care of myself.

We arranged to meet up for a chat and whilst having a coffee or two we talked about what sort of things I could do to stop myself “climbing the walls at home”. She suggested that maybe I should I start writing a blog. Recording how I manage to deal with and live with, several long-term health conditions day-to-day whilst at the same time feeling I am still making a contribution and still helping others at the same time. Whilst I am not able to go to work

When I got home I found myself thinking back to when I had attended a free NHS course, called the Expert Patients Programme. Now during the EPP course I learnt many tips and techniques on how to live better with a long-term health condition. One of the techniques I heard came from both the  tutors and participants, the technique involved writing down all the positive things that happened each day, such as watching a beautiful sunrise or chatting with a friend. Then when you were feeling low, down or depressed you could go back to your journal and use these positive memories to help pick yourself back up again.

It wasn’t really my thing, but a couple of days later I found myself thinking  about it again and decided to give it a go. I decided my journal would only focus on the positive, good things that happened to me or that I saw each day and the things that made me smile or laugh or made me happy and as I was a keen photographer I decided I would also take a photograph each day of something that also made me smile or made me happy to add to my journal. For a long time doing my journal like this worked really well and helped me a lot.

Then as my condition changed over time so did my journal, first the daily photographs stopped as my mobility worsened, then it stopped being a book and I stared to just keep a log on my computer, after a while I just stopped doing it completely, I’m not sure why. then a couple of years ago I was given a happy jar for Christmas which reminded me of how much I had enjoyed doing my original journal, I still have the journal in my shed and still look at it from time to time  to cheer myself up. I also still have my happy jar which I add too every once in a while.

So back to present day and for me health is changing again,  so now I am hoping that blogging will become my new journal. It will include everything that is going on in my life at the moment and hopefully, as I become more confident and more at ease with writing a blog, the post’s should become more regular.

So over the next few posts I will be talking about the different I am trying out at the moment whether they work for me or not, I’m also hoping that writing this blog is one of the things that is going to help me cope with life going forward, and if reading it helps others out too then that’s a bonus.

Be kind to yourself

Gary

 

What do I do?

For my first blog I am going to briefly explain how I got to where I am today, so here we go… I was born in London, moved to Sussex as a teenager, grew up, got an amazing job, got married to an amazing woman, had three amazing daughters and adopted an amazing dog.  Then I got really sick!

OK, so this is what happened in a bit more detail…

For most of my adult life I have worked and for the most part enjoyed it, I felt I was one of the lucky ones. I had a job that I loved which took me all over the world, meaning I got to do and see amazing things and meet some great people. Life was good.  Until 11 years ago when I was made redundant as the company shut down its operations in the UK.

However, this wasn’t the greatest issue that life would throw at me – for the last 7 years my health that has become the biggest challenge of my life.  During those 7 years I was unable to work. I was told by the pain specialist that it was unlikely I would ever work again, but because he’d used the word unlikely, I felt there was still some hope for me to return to work.  However, within a day or two of the leaving the pain specialist’s office the reality set in.  I could not find any help or guidance anywhere, the Jobcentre, Maximus, employment agencies, even my local MP.  On top of everything I was told I would not qualify for ESA which meant the family facing significant financial stresses too.

It was at this time that my hope and faith in others and in organisations that were supposed to help disappeared and I found myself in a dark place.  I turned to the NHS for help and was referred to mental health services, given some meds to help my mood, and attended a number of group CBT classes.  This all helped a little, but none of it helped me to deal with the chronic pain I was in.  I also joined a local support group, what they were doing was great but it wasn’t my thing.

Then one day I overheard a lady in the Doctors waiting room (hence the title of my blog). She was talking to another lady about a free NHS service called the ‘Expert Patients Programme’ and saying how it had really helped her to cope with her life living with a long-term condition. I didn’t know what was wrong with her but after listening to her, I thought why not give it a try? What have I got to lose?

So when I got home I did some research, I found out it was a six week course for 2.5 hours a week. They were group sessions and made up of participants with many different forms of long term conditions.  Once I finally got the confidence to call, I was booked onto a course and I can honestly say it turned out to be one of the best decisions I have ever made in my life.  The two course tutors were volunteers who were both living with long term health conditions, they had attended this course themselves and found it to be so helpful to them they decided to train and become volunteer tutors so they could pass on what they had learnt.  They were inspiring, positive and compassionate.  By the end of week 3 when I got home my wife said she could actually see a change in me, I was becoming more positive about things, I was smiling more and I was doing more.  On week 5 I filled out the application form to become a volunteer tutor myself.  I felt like I had a future again, that I could be useful and that maybe I could make a difference and help others. I also made it my long term goal to get back into employment.

That was 5 years ago, I am still a volunteer tutor and I now work part time for the service as well.  The staff and all the participants have kept me going and keep inspiring me every day, especially at the moment whilst I’m unable to get into work due to a flare up of my condition. This time though I do not feel helpless as I can draw on my self-management skills (learnt on the course).  I don’t feel scared and alone, because I have the most amazing colleagues who are there for me and understand what I am going through. I also keep in my mind all of the amazing participants I have met whilst tutoring courses, these people inspire me to never give up, to remain positive and to always look for the best in everything I do and everything that is happening.

The posts I will be writing for the Blog will be about me sharing how I deal with and cope with what is happening in my life, the good, the bad, the funny and the sad.