After the pre-op assessment I waited a respectable amount of time and called to ask for likely waiting time. The delightful O told me that my neurosurgeon AW sorted his own list and so was unable to update me until that had happened. I waited a bit more.
On the 2nd December I called and left a message bravely asking if there was any news and reiterated that I would be happy to take a cancellation. About an hour later O called and said,”You mentioned you’d be happy with a cancellation. Are you 7am tomorrow happy?”
Gulp. It was 2pm. Mick was home in an instant and within a few hours we were on our way to spend the night in Bristol. Not at the Ramada.
After being checked in and checked over I met the surgeon AW and anaesthetist RB before going to the operating theatre and the point of no return. In a blink of an eye I was awake and back in my medi-room.
I met the lovely A from Nevro who programmed my device and switched me on. After a short rest, meds, water, tea x2, biscuits and a sandwich I was good to go. Within 24 hours of the call from O we were driving away from the hospital all done.
It was a bit bamboozling but without time to get anxious I was happy.
Before leaving I asked what I could and couldn’t do.
Nurse - remember no bending, twisting, stretching arms up or lifting.
Me - for how long?
Nurse - at least 6 weeks.
Me - when can I go on exercise bike and go in the pool?
Nurse - at least 6 weeks.
Me - when can I? I listed a few things.
Nurse - at least 6 weeks.
Me - 6 weeks for everything then?
Nurse - yes, except the things that are 8. Or longer. Do not do much until you have post-op then ask again.
I had read many things about how tiring and long the healing process can be following a SCS implant so I was prepared to be a bit tired. If you have any kind of pain condition you already know how knackering life can be but this was on another level. I adopted the mentality of a dormouse and snoozed my way to healingville.
I have not had backache since I came round and my nerve pains are greatly reduced*. It hasn’t quite captured all the dodginess on my left foot, ankle and lower leg but blimey this result so soon is awesome. Plus, there are bucketloads of other programmes to try and I am confident we will achieve nirvana.
*This was written 6 weeks post-op and I am now 8 months. It has been quite a ride that has included re-programming, different types of stimulation, over-stimulation, pain, relief, different pains, pains that definitely are not mine and spasms.
Soon after I wrote the 1st part I had a ‘moment’ of pain resembling a stabbing shock in my mid-back. Since then I have had problems with the lead anchor site. As everything post-op can take 6 months to settle I had high hopes the healing would happen. Sadly it has not. Some bits of me are awesome, some not so much.
The support from Southmead Hospital, Bristol and my Nevro reps is the best I have ever had. Anywhere. It is reassuring to have them literally, ‘have my back’ and know they are on my side.
Many people with pain will have horror stories of being disbelieved, judged, ignored or fobbed off elsewhere to someone who cares even less. How do I know this? Been there.
I am on the list to be discussed at their MDT - multidisciplinary team meeting - wonder if my ears will burn - to devise a plan to sort me. As the world is in a state of flux there is no date yet but knowing I will get help is reassuring.
The image is the Nevro implantable pulse generator that is in top of my buttock and charged daily. At the front of the picture is the lead connector that is placed in the supraspinous ligament to hold the leads in situ.
Being homebound can bring fabulous opportunities for you to have a go at things you, “do not have time for”.
Top tip - try and be in a routine of getting up, eating, resting, doing, playing and sleeping.
I have spent the last few years mostly at home unless someone takes me out and here is a list of things to do in an attempt to save your sanity if you are not used to 'staying safe’ at home.
https://www.canva.com/ here you can create many things; memes, books, cards. The picture is a Canva made vision board I created to demonstrate
Free pictures you can use for your project/play
Take an online course - maybe in a subject completely different to all you know. The following offer free ones:
Drawing and colouring in
Free audible stories
Kindle has many free books that will be revealed in you do an Amazon search
Think of something and watch a video about it
Get my creating calm ABC Breathing 3 minute lesson
Listen to podcasts - best to just search yourself
Write the book that is in you
Share random things you have discovered or remembered like unusual recipes
Recommend films, box-sets and books
Start a blog
Look for free puzzles online
Read or watch something in a different genre to your usual
Try an exercise you have never done before - health permitting
Practice the art of Niksen which means to do nothing or, do something with no purpose
Try to have moments of silly and fun
Oh, Spike ♥️
It’s all in your head dear or maybe it’s your age
Have you tried a neti pot or settling your rage
Of course it isn’t real it’s made up by your brain
You cannot have your needed meds just suffer with your pain
Hang on a mo what’s this now something’s going down
All the able bodied souls are going into town
They’re buying up the tissues, the cucumbers and cheese
They're using up deliveries to give themselves some ease
And now those who need the help are getting even less
Stop your whining get a grip and think is the answer yes
As you take a moment do you need another tissue for your arse
Rest assured whatever happens this too shall pass
All systems go for the Spinal Cord Stimulator (SCS) trial and I visited Senior Nurse N for pre-assessment and a thorough step by step explanation of how the trial is inserted. With drawings. We talked about restrictions; no deep bending, twisting, lifting or stretching arms up. I asked about toilet related things and she did a beautiful visual demonstration accompanied by - move slowly like a ballerina. Her words are stuck in my mind.
The other restriction is no showering or bathing that might risk the procedure site getting wet. I knew I would not manage a week or more without washing my hair so Mick devised a way to wash it with me sitting backwards at the kitchen sink.
Remember remember the 5th of November was my day.
We stayed at the Ramada and it was one of those times when it felt like we were in a hidden camera programme. Within a few minutes of being in the room the electricity went off. Wires were hanging from a lamp and we were told that having the kettle and a light on was too much. We moved room and it happened again but that time once the trip was reset it stayed on.
Dinner was chaotic with no fish for the guests who fancied a lump with chips and no cold beer. There were many sad looking people sitting alone with their bottles of warm booze. The same staff look after reception, the bar, waited and helped in the kitchen. It is a ridiculous system.
Because we live a long way from the hospital I had to stay nearby on procedure day/night so yippee I had a 2nd night to look forward to.
On the day I was duly admitted, sexy TED socks on and off to theatre. The trial is performed with local anaesthetic and I sat waiting while everyone adopted their positions. There were 8 or 9 staff members; all female. I have never known this happen before. It was like watching a dance and because one is usually unconscious by that time and none of it is seen. In the past having injections I was always on my tummy and the unseen work that happens is mind-boggling. Seeing, hearing and being introduced to who does what is reassuring and calming.
The moment came for me to clamber onto the table with a wedge under me and my face in a hole. Imagine a massage without any of the pleasure or relaxation. First off were 2 lots of antibiotics slowly injected into the cannula in the back of my hand by N. It was wonderful having her in theatre by my head talking to me through the whole thing, explaining what was happening, stroking me and even being ready with an ice pack for the back of my neck when I began to cook. She knew that would happen. This was not her first time.
I was then painted and completely draped (hence cooking) apart from the window on my back and LJ set to work.
My anatomy, yet again, proved challenging and LJ had quite a job to get the trial lead in place but she persevered and won the day.
Back in my medi-room my rep, S, from Nevro questioned me about the issues I had and programmed the stimulator. The pulse generator was taped to my back attached to the lead that exited my back; held in by a stitch, and the charger unit was held around me with a velcro strap. I expected it to become annoying but I quickly got used to it. I had a remote control to change the programmes.
After about an hour I left to return to the hotel. It was all a bit better the 2nd night - expect because of the meds but sleep did not come and Mick made tea. Everything was sore but within a few hours I could move my left foot like a regular foot and when the local wore off I realised I had no backache. What?! Yes. No backache.
Back home the nerve pains began to reduce. It was magical, exciting and weird. From having so much debilitating pain to not is, well, strange.
I was scheduled to have the trial removed on the 18th but after about 5 days the hole where the stitch was became sore. I returned to Southmead on the 13th to have it removed because it seems I heal like Wolverine and my body was trying to close the hole and engulf the stitch. I was sad to no longer have the relief but the general consensus was 80+% relief meant I was ideal for a permanent SCS implant to be fitted.
Within a few hours the nerve pains returned and by the next day so had backache and spasms. My toes were all over the place and I was a grump.
One week later I was back for the permanent pre-op assessment. This is when all your bits and bobs get checked, bloods get drawn and I had a thorough discussion with A. At one point he asked to look down my throat and made notes. He had encouraged questions so I asked what he was doing and what he had just written. He replied, 'I want to know the size of your throat to determine the ease or difficulty of putting in a tube if we need to intubate you. Yours is excellent.' I felt momentarily sick and told him to not let me ask any more questions but I was secretly pleased I had got, which I have always suspected, a big mouth.
I was cleared for surgery so now was time to wait.
Before the trial I researched how people manage and joined a couple of facebook groups. Following suggestions and tips I bought: V pillows, grabbers, wash scrunchie on a stick and dry shampoo (to last an extra day) (it did not happen). I tried a wash cap - you put it on your head, massage and da da - slime.
Time to wait now.
World Hypnotism Day; 4th January, seems to be the perfect time for me to re-enter the world from my healing sabbatical*.
The day was created as a dedication to the delightful Dr Jack Gibson who died in 2005. I had the pleasure of meeting Dr Gibson and loved hearing the amazing stories of his career. He was a surgeon who used hypnosis as anaesthesia and he had many tales to share.
Hypnosis for pain management is my number one tool for day to day and pre/post surgery.
There are many myths surrounding the subject but all you really need to know is that it is a natural state that we all go into.
Self-hypnosis is the induction of a hypnotic trance during which you can decide to rest your conscious mind thereby bypassing to your subconscious mind.
1st September 2019. Pinch punch and all that.
As the new school year begins so comes my new start. Not in a born again ding dong* kind of way but in an explanatory where the hell have I been and what am I doing kind of way.
If you have read my blog or articles before you might remember I have had on-going back problems that resulted in surgery to fuse my sacroiliac joints. Unfortunately the surgeon pushed one of the surgical screws into a lumbar nerve and it has caused a mishmash of issues that include continuous pain, nerve damage with its accompanying nonsense, foot drop, muscle wastage around my ankle and lower leg and sometimes my leg disappears itself. The dodgy grammar stays because it is such a perfect description.
Life is challenging. After exhausting local pain management services my GP suggested I find a new consultant and start again. I did this and with some creative self-advocacy and charm (fluke) I ended up in the care of the amazing team at Southmead Hospital, Bristol.
Who are you? What do you do?
Who am I? What do I do?
How do you describe yourself? By your name, role in life or your job? How do we define ourselves? Do we even need to?
There are books written (usually for women) about finding yourself. The strap is something like; daughter, sister, wife, mother… now it’s time to be you.
But, who are you? As the Caterpillar asked Alice.
When I became a hypnotherapist in the early nineties I happily called myself that even though I usually had to follow it with a description or listen to comments like, ‘oh best not look into your eyes,’ or ‘bet you can’t hypnotise me.’ Because that's what people say to hypnotists. Still.
As my practice grew I added in other things ranging from coaching and speaking to hosting workshops, teaching, to being involved in the more esoteric subjects. Later on I became an author and publisher. So many job titles to list on a business card I decided to bundle them.
Holistic therapist and muse seemed to cover it. Or, so I thought until Jane Alexander wrote, while reviewing my book, ‘she describes herself as ‘a holistic therapist and muse’ which would, under normal circumstances, make me narrow my eyes and pick up my foot.’ Oh! She does go on to say I’m alright but…
Defining what we do can be challenging because what we do defines who we are.
Who we are defines what people think. Of course, it doesn’t matter what people think. Unless they are wrong.
Maybe I asked for it by calling one of my books, The Psychic Way, but assumed (ha, never do that!) that having ‘way’ in the title suggests method/option and that the sub-title would clear up any possible misconceptions; as in Fine-tuning Your Intuition. I’d be wrong then.
I have lost count of how many times, recently, I have said, “I do not work as a psychic” The reply is mostly, “Oh, but you are psychic aren’t you?”
I then feebly mutter under my breath and change the subject.
Here is the conversation that triggered this musing – I am B and the questioner is D:
D - Is he going to leave me?
B - I don’t know.
D - Of course you know, you’re a psychic. Just tell me. It’s your job.
B - No it isn’t.
Soggy lumpy squidgy bits
Saggy flappy floppy tits
Constant nagging tighten your core
Sod right off while I eat some more
Carbs to numb and fatten the bum
Add some weight and then some
The perils of pain can be weight gain
Being over stuffed yet under nourished
Does not encourage the body to flourish
The other extreme is the anorexic look
When the thought of food turns one crook
And there’s nothing to them ‘cept skin and bone
While the constant pain makes the body groan
For many years I was a vegetarian who ate fish (I know…). Then I slipped off the veggie wagon and one day a bloodied steak on my plate triggered something deep inside – not in a good way and I became a veggie again but still ate fish (I know…). I also ate dairy and eggs, yes… still know…
Pain, stress and anxiety attacks affect our breathing. If you get injured or experience an extreme situation the natural inclination is to breathe in sharply and hold your breath.
Over time the stress caused by ongoing pain or anxiety creates an extra state of anxiety which can lead to shallow breathing or fear of slower deeper breathing.
Gently try out these two techniques. Never strain or over-hold.
1. In your mind, count (see, imagine, sense) backwards from 100, rhythmically in time with your breathing, and relax a little with each number. You might like to say to yourself after each number, 'relax', 'deeper and deeper', 'calm' or a word that you associate with being relaxed. Do this until you lose count or forget where you've got to and can't be bothered to start over.
2. Count to yourself: 1, 2, 3, 1, 2, 3, 1, 2, 3 over and over and try to prevent thoughts nipping in between the numbers. If they do manage to squeeze in, say the numbers quicker so they are closer together. The aim is to only have the numbers in your head with big gaps between them, but it may happen that you forget where you are or forget to remember to count.
With each just practice for a little while. More will follow plus different techniques and modalities for you to try.
Clicking on the image above will take you to Daisy's House where you can get your free breathing mini-lesson.
You have probably had days when you can’t manage to do much and personal grooming is way down the priority list but you still have to go out so you spray dry shampoo on your hair and hope for the best.
You get the feeling that everyone you see, including your doctor, thinks you look daggy and unkempt. Lazy even.
“She’s let herself go. She’d feel better if she tried harder.”
Another day you can manage better and shower, bung on some slap and head out.
“You don’t look poorly. You look good therefore you must be better.”
“You have pain all the time? All the time? I never knew. You never said you should have shared.”
And then, “All she does is moan. No wonder she hurts”
Saying, “I hurt” is not deemed bad enough because being uncomfortable or a bit sore does not warrant any kind of help.
Can you imagine all the benefits of a spa visit without the paper panties or having to be coated in a sticky brown substance that has none of the pleasures of chocolate?
What if you didn’t have to think about how to modestly cover up with a towel, or even have to shave your legs and worry about stragglers near your lady garden or man field first. Where is this magical spa of freedom and pleasure? Can it really exist? Can I buy a voucher?
You don’t need to - this is Your Mind Spa and all you need to do is summon up your inner therapist so you can reap the benefits without a blush in sight. Most people visit spas in the quest for inner peace and relaxation but in reality bliss is already yours and I’m going to show you how.
If you like, you can make your inner spa experience more enjoyable by dimming the lights, lighting a candle and playing some restful music.
Make yourself comfortable and cosy ensuring you’ll be undisturbed for the duration of your 'spa visit'.
Here is one of my past lives that came to me after I self-regressed about 20 years ago. It didn't all come in one go, but during the regression and for a few dreams during the week that followed.
My sister Lizzy and I lived on the outskirts of a village. I knew the year was 1590.
Our mother had died some years ago, quickly followed by my father who died of a broken heart. His last words were, 'I'm sorry to leave but I need to be with your mother, you have each other. I leave you both our home and my love.' He then slipped into a peaceful sleep from which he did not wake.
Lizzy and I lived a happy settled life for a few years, growing flowers, making and selling bread. We had been schooled by our parents in herb lore and tended to the sick. Many visitors would come for healing potions. We helped at births and used herbs and prayers to ensure those who passed went in peace.
One day in October, the village men had a meeting. From that day our lives changed dramatically.
We never found out what the meeting was about and who exactly was present, but from that day the people in the village averted their eyes and whispered to each other whenever we passed by.
A lot of my work is with people who have injuries or suffer with chronic pain. As someone who lives with this I know the challenges and desperation this can cause.
Some years ago I was working at a golf club with a group of nine and there were two people with shoulder and neck pain, three had low backache, one had a headache and one suffering with IBS.
The two people remaining who didn’t have any pain felt quite left out. If you ask around most people experience discomfort of one sort or another quite frequently, especially, backache, headaches and the ilk. It might be just general aches and pains, pain following injury or surgery or a stress related problem in the form of tensions in the body.
And of course, pain leads to stress which leads to pain and so on. It can be a seemingly never-ending downward spiral and when this happens it is called chronic.
I am simply known as ‘healer’. People, in my and the surrounding villages, call on me for a variety of ailments. Daily I walk the hedgerows gathering flowers, barks and roots to make my lotions, potions and tinctures. I return to my kitchen to brew, grind and whisper the incantations to infuse the medicines with the intention of good health.
I help people with pain of the body, mind or soul sometimes all there if someone is deeply harmed. Often a broken heart from an unhealed injury or bad relationship can not be mended without compassion and regular infusions of healing. The grief of a life that was might drive some from taking to their beds and this can often lead to difficulties in them getting back up.
Together we stop excessive inflammation from spreading and turning in on itself with the bark of willow to cool the heat and the leaves of valerian to soothe demons in the mind. Finishing with milk of poppy to quieten the noise of pain.
We know of the way pain burrows deep, determined to stay put, and without correct measures can take hold as a permanent lodger.
Written by Herself
I write as the muse takes me and here is a blend of blog posts and articles.