Category Archives: Musings

International Transgender Day of Visibility

The lovely Elin Gregory wrote this on her blog today so I’m sure she won’t object to me sharing it:

By clicking on the picture above you will be taken to the website of the Human Rights Campaign and a page of information, resources and interviews for and by and about transgender people worldwide.

Some of it is very interesting and uplifting, some of it is heartbreaking, all of it is worth watching/reading.

And it’s a really good reminder that, while today is THE day to look across at our transgender friends and say “I see you and you’re admirable,” we should be putting the suggestions for how to be a good ally into practice EVERY day.

Of course there will be times when we fall short, through ignorance or thoughtlessness, but that doesn’t mean we shouldn’t try again to do better.

X-Clacks-Overhead:GNU Terry Pratchett


Three years since DEATH came on Binky to take Pterry on his final journey.

If you’ve never read any of Sir Terry Pratchett’s work, can I suggest you rectify that immediately. My favourites are Carpe Jugulum and Maskerade but you could pick up any of his more than 70 works – of which the Discworld made up just 41 of those.

The Tiffany Aching series are perfect for older teenagers, while his Bromeliad Trilogy, featuring tiny people who live in the carpets of peoples’ houses (not as creepy as it might sound!) is a great jumping point for  younger readers.

And – given the impending Amazon Prime/BBC production of Good Omens which is due out next year – this collaboration with Neil Gaiman on an alternative “apocalypse” is, without shadow of a doubt, one of my most often re-read and recommended books.

My Weight Loss Journey Begins

As anyone who’s read my More Me piece knows, 2014 was a catalytic year in which I nearly died – twice – because of Swine Flu and was left paralysed for six months after a five-week induced coma.

During the near nine months I was in hospital, I lost a lot of weight, through being unconscious and nose tube fed and also because I had to learn how to eat all over again and I just really didn’t want to eat and had no appetite.

Unfortunately, during the now three years post discharge, due to being officially disabled and incapable of walking more than 20ft without my right hip displacing and having to do so while in incredible pain throughout my body, I’ve put an awful lot of weight back on.

I’ll be 48 next year so, if I don’t take things in hand now, it’s only going to get worse by the time I hit the big 5-0. But, instead of doing a “diet” as such, I’ve set up an account with MyFitness Pal to start tracking what I’m actually eating.

This gives me a daily calorie target to eat and, if I stick to that, I should lose weight even if I can’t do anything else. It’s an eye opener really to truthfully and honestly track what you’re eating and it’s made me appreciate that I need to look at portion sizes and drink more water!

I’m also hoping I can start regularly going to the local hydro pool which is a 20 minute session in which I can freely move without pain and which I hope will let me tone up while losing weight at the same time.

Unfortunately, I need a carer to come with me to that because I can’t get washed and dressed without aid. In the meantime, I’m trying to find small exercises I can do at home. I have a set of stretching exercises my physios have given me over the past three years, so I’ve been doing those as well as a bit of walking and going up and down the stairs (which is a real trial for me).

I used to walk a lot and I want to reach a point where I can do that again, even if it’s in pain, so that my nearly 10-year-old son has a mother who can be active in some way with him.

So there you have it, a slightly different blog from me today.

Some Musings for November

dunkirk poppies

The Royal British Legion’s #RethinkRemembrance campaign has seen the poem In Flanders Fields laid out at seven locations synonymous with conflict including this at Dunkirk beach.

Each year in November I take the time to have a think or two on the Royal British Legion’s annual Remembrance Day campaign 

I check out their website, I look at what they’ve sent me through the post, I either get a Poppy or I give a donation online and I reflect on those I know. . .

My grandfather, at Dunkirk in 1940, now considered to be a victory in defeat because of the efforts of the Little Ships in rescuing almost 340,000 Allied Forces but, for him, the one experience in all his wartime escapades he would never speak about.

Other family members who didn’t see conflict but who “did their duty”, friends who served in all three branches, family who are still serving now, historical figures in the past who made their mark in some small – or very large in one case – way.

This year the Legion is asking people to #RethinkRemembrance. To look at the annual appeal in a different way as the wars which it originally commemorated move further into the past and yet the numbers it helps wane not.

In recreating one of the most famous First World War poems – Canadian John McCrae’s In Flanders Field – across six UK (and one French) locations, the Legion hopes to encourage people to consider the meaning of the poppy as a symbol of both Remembrance and hope for the Armed Forces community, past and present.

In Flanders Fields was written after poppies bloomed on the battlefields of the First World War, despite the death and destruction around them. It’s that life force growing in the most difficult of circumstances that connects the poppy with a message of hope.

  • The poem lines are located at Royal Hospital Chelsea in London, on Dunkirk Beach, on the White Cliffs of Dover, at the National Memorial Arboretum in Staffordshire, in Cardiff Bay, at Salford Quays in Manchester and outside the Sage in Gateshead.

More Me

NHS 10mm - RGB Blue

In praise of the NHS

In April 2014, when my mother was dying, I got a cough which just wouldn’t go away. I put it down to stress and smoking too much while watching her slip away just three weeks after a liver cancer diagnosis.

What the NHS did for her deserves a blog all of its own. Maybe I’ll write that one some day when the thought of it doesn’t hurt so much knowing she’s no longer here.

The day we met the parish priest to sort out the funeral, just a week after she died, my brother decided enough was enough and made me phone the doctors to get an emergency appointment. He drove me down, dropped me off and I saw one of the practise GPs, not my usual doctor.


She sent me up to the local hospital – in my own home town – for X-rays, diagnosed pneumonia, issued antibiotics and told me to come back in a week. I went to the hospital just around the corner from where I live, waited about 20 minutes for the X-rays, had them taken and then went home, it was just after lunch.

Thankfully just a couple of hours later, on receiving the X-ray results, she changed her mind, phoned me up and let me know she was sending an ambulance to take me to hospital to be checked over and possibly kept in overnight.


When the fast responder arrived shortly before the ambulance, my oxygen levels were at 38% and I was taken off to St James’ University Hospital in Leeds – aka Jimmy’s –  just before tea, was admitted to a Respiratory Ward, given oxygen via a nose tube and, within less than 12 hours, had been put into an induced coma and was in ICU as I wasn’t responding to the oxygen and they needed to take over my breathing via intubation.

They ultimately ended up having to perform a tracheotomy.

Five weeks later, having nearly died twice, I was brought out of that coma.

During those five weeks my kidneys had failed to the extent they needed to put me on dialysis, they’d had to perform a chest drain, one of my lungs collapsed, I had a blood clot in my other lung and more clots in my left leg, my jugular vein and my groin which they couldn’t risk moving into my lungs and so they had to put in a IVC (inferior vena cava) filter.

This is a IVC filter.


Fun eh? They put it in through my groin. Almost six months later, they took it out through my neck.

Yes, I said neck. Under local anesthetic.

Now it’s just another one of the scars I have to add to the tracheotomy one, the multitude of cannula ones on my arms and hands and even one on my foot, where they had to try getting blood out of when my veins collapsed and the two on my back from the chest drains.

When I came out of the coma I couldn’t speak because of the tracheotomy. Now, as anyone who knows me will tell you, this is like cutting off the hands of a painter or the legs of an athlete, I like to talk, a lot. I also quite like to move about. Yeah, that wasn’t an option either because I was paralysed from the neck down.

Brain damage


Central pontine myelinolysis or CPM as it’s more often (not so common because it’s pretty rare) known as, is basically brainstem damage. It’s most commonly found in alcoholics who have had to have their sodium levels rapidly raised. It’s an Iatrogenesis – a condition usually caused by treatment.

In my case, it was caused by keeping me alive so hey, on a 50-50 judgement call, I’ll go with long term disability problems over being dead.

It’s weird to think of having brain damage. Apparently, it’s what was responsible for all the vivid and out of this world dreams I had which I think were a mix of during my coma and the first few days I was out of it. There was the same theme throughout them all though – of being trapped.

In some I was a fish, usually a koi carp or similar, trapped in a net and I would swim in and out of all the holes but could never find my way through the twists and turns.

In other dreams, and these were the oddest, I was in a megacity, think Tokyo on acid, with mile-high tower blocks, and I had to make my way down through each level and there wasn’t an elevator that went from top to bottom.


On each level, there would be something different, a row of arcade gaming machines, sumo wrestlers, something that looked like it belonged on the old ITV Gladiators TV show with the long poles. It was bizarre.

And then one day the dreams just stopped.

Coming home

I was officially discharged on January 6th, 2015, and I’m still registered as disabled. I sleep downstairs in the former dining room on an electric hospital bed which is on long term loan.

(Update: June 2019, this has finally been returned as I now live in a housing association flat, having split up with my long term partner,  another consequence of this devastating illness).

I have a carer come in twice a day to help with washing and dressing and that is expected to increase to more visits now I live mostly alone.

I need to use crutches to walk, anything further than 20 metres is almost impossible, and I  need a wheelchair or a wheeled walker to go any great distance. I also use that to sit and work in at home because I’ve been left with Coccydynia, another of those iatrogeneses – this was caused by long term pressure damage when I was “sat out” during my time in hospital.

Sitting out is usually a beneficial exercise for long term hospital stay patients, in my case, being put in an uncomfortable hard surface chair while paralysed meant I couldn’t move to relieve the pressure and voila, irreparably damaged coccyx. I am in pain every minute of every day.

During my time in hospital, I also had two chest drains, both done under general anaesthetic, as well as multiple minor surgeries done under local, every kind of medical scan you can get that I know of – MRI, CT, X-rays, ultrasound. I had at least seven different consultants looking after me while I was in ICU alone.

The cause of all this trouble and strife? Swine flu. Not just plain double pneumonia but swine flu. Mine was one of three swine flu cases that year, they’d not had any for the previous three years in Leeds.


I forgot to mention, during all the above, I also had:

  • teams of physiotherapists (it took a minimum of three of them to work with me because of my paralysis),
  • dieticians,
  • nutritionists,
  • occupational health therapists,
  • health care assistants,
  • speech and language therapists (these are the guys who help you learn how to swallow and eat again),
  • access to a psychiatrist if I wished it,
  • visits from the local Roman Catholic priest to just chat about stuff,
  • a prayer service (if requested),
  • a dedicated one-to-one nurse for 12 hours at a time while on ICU (eight weeks in total there.)

I spent another week in a HDU, one week on RCU (respiratory care unit), six months on a Respiratory Ward, three months at Chapel Allerton, where there is a National Demonstration Centre in Rehabilitation for a grand total of just under nine months of hospital care.


I should also point out, that when I was ready for discharge I had to have a certain amount of things in place to get home. I also shouldn’t really have been discharged when I was but I left because I couldn’t, in good conscience, continue to take up the bed I was in, the one I’d had to wait three months for.

Because there are only eight of them in the whole of the region (at that time – see for the latest news).

That’s right, eight female neuro-rehabilitation beds to treat people with a similar condition to me because it is such a specialised service and the NHS is being systematically chronically underfunded for political reasons.

I’d had to wait three months to move to Chapel Allerton. My dad had had to go through PALs and get our local MP at the time involved to try and sort out the bed issue. In the end they did a bed swap. I moved to Chapel Allerton, the lady who was bed blocking (she was homeless and there was nowhere to discharge her to – that’s a whole different blog!) moved to my room at Jimmy’s.

When I left hospital I’d reached a point where I could walk using a Zimmer frame, so I gave up the bed. To get home required a team of hospital and social workers from Leeds City Council providing me with specialist equipment at home. I still have that equipment (although thankfully I don’t need the commode any more!) more than four years later.

In Summation

And the direct cost for all of this to me at point of service?

Absolute zero

This is what the UK’s National Health Service does. It saves lives and it doesn’t add to the family’s burden of watching a loved one having to fight for their lives with the additional fears of how they’re going to pay for all the treatment.

This is why it’s worth fighting for.

NB: Obviously there is an actual cost for this, I’ve paid Income Tax and National Insurance (which goes towards paying for our benefits system and the National Health Service) since I got my first Saturday job working for Freeman Hardy & Willis aged 15. I’ve paid into the system for most of my adult working life.

This is how our free at point of use health service is funded. Not through insurance policies, although people can choose to take out private health insurance if they so desire.

I’m now uninsurable. I mean that literally. I tried to sort some out when I got out of hospital and was able to get back to my job again (I work from home thankfully) and every one of the UK’s major insurance and life policy providers refused to insure me because I’m now “too high a risk”.

I have to wait until I am 50 (in a year’s time now) to be able to qualify for a basic life insurance policy which cannot be refused because of “pre-existing” conditions – in my case the fact I had a pulmonary embolism – even though it was as a direct result of having swine flu and nothing else – is enough to make me uninsurable.

NOTE: Updated June 2019.

Festive thoughts on loss and hope

Today is my mum’s birthday, she would have been 69, just one year younger than her mum is celebrating in this photo.

My mum didn’t make it, she died in April 2014 just three weeks after being diagnosed with liver cancer at the age of 66. Too young.

Her brother Steven, at the centre back of this photo, died earlier this year. Where once there were six, only four remain.


My mum (second from the left) and her brothers and sisters with their mum on her 70th

“Everyone can master a grief but he that has it.”

–William Shakespeare, Much Ado About Nothing

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