I used to love researching and booking holidays. Once, I found a hotel in Ibiza, half-board for two weeks for £150. I called the company and the woman I spoke to said a zero had obviously been missed off and to book it right now, so I did! It was a great hotel with a balcony and sea view.

I’ve booked holidays to Ibiza, Formentera, Germany, France, Lanzarote, Egypt, Greece, Wales, Cornwall, Croatia, the Azores, Kenya and of course Japan.

And then, along came serious disability and holidays have become very complicated and very expensive.

I don’t expect a dream trip to the Caribbean to come cheap. However, add in:

• A one-to-one care package, which gives me some freedom to do what I want when I want and have my personal care needs met.
• Equipment hire (hoist, profiling bed, and shower chair).
• My flights plus extra legroom because my legs spasm and do not bend easily.
• Extra legroom for the carer I have to have sat next to me.
• Single supplement (solo travellers of the world, unite and shout ‘outrageous!’).

The advertised price, including discounts almost triples. It took a lot of serious consideration on my part and a huge deep breath to book it.

The booking process itself is necessarily quite complicated, as the company and I have to be certain that I have thought of every single one of my care needs and that they will be met on the holiday.

The packing process is similarly convoluted, but eventually I was off to Heathrow.

After my trip to Sicily I decided to be more demanding of my one-to-one care package. I had requested that I was checked in and went through security on my own with a carer, so I had time for a coffee and pastry. It didn’t happen last time.

And here’s where it starts. I wrote my previous post in the first person singular, imagining I was there on my own. It was healthy for me to do that and remember that I am still my own person.

But of course I wasn’t alone. It was another organised, group, disabled holiday. There were two carers and four other travellers. Two of the other travellers were disabled, one had a family member with them and the other friend.

I was checked in quickly and easily with the carer assigned to me and was ready to go through security. However, another of the travellers was having huge problems getting checked in and the carer with them hadn’t done an international trip before, so I sat the wrong side of security, and waited, and waited…

And that’s the repetitive story with group travel. I spent a good deal of my holiday waiting. Waiting to get up while the others received their personal care, waiting for others to finish eating, waiting for others to get ready, waiting for others to be put to bed before I was.

The others had to spend time waiting for me too. I was always conscious that while my needs were being met somebody else’s weren’t. I spent one morning in bed instead of having breakfast and an evening on the bed instead of having dinner because there wasn’t time to meet everyone’s needs.

It’s stressful enough having new people doing my personal care without it also feeling rushed. No lie ins on this holiday. Up at 7:30.

Eventually, to the holiday company’s credit they called in a local carer to help with the morning routine. After the holiday, the company responded well to the issues. They listened, I was heard, I had a zoom call with the CEO who really cares and received a full apology which I gratefully accepted.

The dinner in the Japanese restaurant on the first evening had that amazing view of the beach, palm, trees, sea and sunset. But I was sat at a table with six other people I hadn’t chosen to be with.

The carers were 30 years younger than me and three of the travellers 20 years older than me. They came from a different world to my liberal, left-wing, rebellious, adventurous, single, childless, Brighton self.

They were good hearted people, but I couldn’t have a good conversation with them. I shut down most of the questions about me and my life. I once heard say ‘people have to earn my story’.

I do recognise that it’s quite contradictory to spill anything and everything for the public arena here, but that is not what I wanted from my holiday. I just wanted to be left alone, and after a few days the others did get used to me not being very sociable.

All the excursions (even that word makes me cringe) and meals were shared with the others on the trip, along with their innocuous chitchat about family, children and small town life, my least favourite conversation about being disabled, and the worst – religion (Christianity, very very good, Islam, bad).

I was never really alone. Sunbathing in my spot on the beach was the closest I got. One benefit of travelling with others was that while I wanted to relax, it gave the carers the opportunity to deal with the needs of the other travellers, but they were always on the periphery.

I was able to use the one-to-one part of my care package three times. There was no way I was going to visit the aquarium which had dolphins and was right next to the sea. I was able to go off without the group in Willemstad. One evening I just enjoyed sitting on my balcony rather than going for dinner – I had to have a night off from the group. Solitude over food!

One of the most complicated parts of the trip was getting me in the sea. The carers knew how important it was to me and were determined to make it happen for which I am incredibly grateful.

There is no quick and easy way to get me from in my wheelchair to in the sea.

I was hoisted into the beach chair at the hotel. It was too big to fit in my room, so the manoeuvering happened outside my room and all of this with me in my swimwear. Thankfully, no one else was around. Thankfully, also the beach chair fitted in the lift so this didn’t have to be done in the hotel lobby.

The seat is very low down and there is a section for your feet to sit in. As I mentioned before, my legs do not like to be bent. There was a lot of innovation with towels, seatbelts, sling straps, bending, pushing and pulling, but I was in the chair. Next stage, get me to the beach…

A beach wheelchair has large, inflated wheels, which are good across sand and in the water, but not so good on roads and pavement. The beach we were going to was a good 15 minute walk away and part of it was through a shopping area.

Two people pushed/pulled/dragged the chair across roads, along pavements, up and down slopes, and eventually, through the tables chairs, and sun loungers to the sea. In these situations, I just have to switch my mind off from the reality of how I look to others.

While all of this was happening, the others had waited (im)patiently as they wanted to get in the sea as much as me. But finally, it was time.

I was pushed into the water, and we quickly discovered that the chair was extremely buoyant and needed two people to keep it stable. I was floating rather than submerged, but still, I was in the sea, in the Caribbean with a white sandy beach and palm trees around me.

It was a complex version of my dream come true. Sadness and gratitude. Yes, I was in the sea, but I have to be honest – what I really wanted was to be alone, swimming and floating and feeling complete freedom.

It can be hard to accept my reality, but the fact that I was in the water and not just on the beach or not even on the beach was amazing, with the caveat of ‘considering my circumstances’.

I asked to be moved around, so I could look out to sea and then see the beach and palm trees. There was a lot of excitement, chatter and photo taking. I asked the two people to stand behind me and just let me float so I could imagine I was on my own.

At one point, one of the people leant over my shoulder, and said “You probably don’t want to hear this, but I have been praying for you.” Moment destroyed. I forced my mind back into this is amazing, this is amazing, this is amazing.

I was then moved to just sit at the sea’s edge and enjoy the sea and sunshine. It was lovely, but there was no getting away from the fact that I was extremely uncomfortable. My legs were spasming and my backside really hurt.

We then did the full process in reverse, via a disastrous shower experience, which ended with me in bed, unshowered, missing dinner and physically, mentally and emotionally exhausted.

I’m happy to say I did go in the sea a second time at a closer beach and right in front of my sunbathing spot. It was less stressful and I enjoyed it much more. It was lovely to end it with that virgin piña colada, sitting where I had watched so many others enjoying the shore.

Doing something different, outside of my daily routine is physically and emotionally exhausting. The holiday came with some wonderful highs and some incredible lows. Some of what happened was unnecessary and traumatic. Some of it was just down to being disabled and with a group, neither of which I want. Some of what happened was truly wonderful.

The parts that shouldn’t have happened were addressed fully by the holiday company. I have left out some significant parts but this is not the forum for them.

I cannot choose the people I go on holiday with, so my thoughts are now turning to ways of travelling without other travellers, just carers who are there for me alone. However, I am very doubtful this will be an affordable option.

I will take my time to think, research and plan. Who knows where I will end up next and who I will be there with. I do hope there will be a next time though. I don’t think I’m done yet…

I have always dreamt of going to the Caribbean. In fact, I have literal dreams of being on a Caribbean beach. Once, I didn’t get, then got, then couldn’t take a teaching job in the Cayman Islands, but that’s another story…

October 2022 I turned 50. I had had a strange few months and things had really shifted in my thinking. The death of a childhood friend made me take stock of life.

I cancelled my birthday celebrations as I realised it wasn’t what I actually wanted to do. I just wanted to go for a meal on my own, and I did exactly that. I love being 50. It feels right for me and it comes with a sense of liberation and not caring what other people think.

I had a desire to travel, and after my trip to Sicily I once again turned to Limitless Travel. There was a sale on and I decided to enquire about a trip to the island of Curaçao, part of the Dutch Caribbean just off the north coast of Venezuela.

It took several days of phone calls and discussion with the holiday company about my care needs. I needed to be absolutely sure in my own mind I could manage the long haul flights and really not care about the cost.

I reminded myself that a few years ago the council had taken £100k from me overnight to pay for my care, and there’s no reason in the future why something like that couldn’t happen again. I had that ‘live my life how I want, while I can’ 50 feeling, and booked the holiday for the end of January 2023. I was going to the Caribbean.

January came around quickly. I hadn’t even told many people I was going. I thought, until I’m actually on the plane to Curaçao, it’s not going to happen for real.

There was a short hop to Amsterdam, then a 10 hour flight to Curaçao. I wasn’t sure how I would manage the flight, but after a meal, watching Top Gun Maverick (highly enjoyable) and taking my night time meds I finally relaxed, knowing it was really happening and fell asleep for most of the flight.

I arrived late afternoon and experienced the wonderful surrealness of having left a January morning in the UK to the welcome of a warm Caribbean evening.

Curaçao isn’t a big island, so it didn’t take long to get to the fully accessible hotel . I had an amazing room with all the equipment I needed plus a balcony overlooking the pool and palm trees, with a sunset view. It was becoming a bit more real.

Dinner that evening was at a Japanese restaurant. The restaurants definitely catered for the tourist market and I didn’t get to try Caribbean flavours and spices. However, there were always vegan options and the cocktails were amazing.

But forget the food – it was all about the view. Reality finally hit. The restaurant looked out over the white, sandy beach, palm trees, and Caribbean Sea with the most stunning sunset. My dream had come true.

I woke up to the sound of tropical bird song and couldn’t wait to get out in the sun. Breakfast was at a beach bar a short walk away. I couldn’t eat quickly enough – I was desperate to get to the beach.

I knew it was just down from the breakfast table. Would I be able to get on the beach in my wheelchair? All I ever wanted from a Caribbean holiday was to be on a white sandy beach with crystal clear waves lapping against the shore.

A wide, soft, sandy beach would not enable me to get near the sea in my powered wheelchair. But there in front of me was a short stretch of sand made firm by the abrupt, torrential daily or nightly rainfall. I carefully manoeuvred myself onto a spot with no sun loungers in front of me. There was nothing but me, sun, sand and sea. I was in heaven.

This became ‘my spot’. I spent as much time as possible there, relaxing, thinking my thoughts and soaking up the sun. I would watch children playing in the shallows, others swimming further out or taking scuba-diving lessons. A lot of the time it was empty and quiet and just perfection. People got used to me being there and would say hello every day.

It is still my spot. I go there in my daydreams and relive the warmth, sounds of the sea, birds and tourists relaxing. Time alone is so precious to me and I was able to be left alone there and truly relax.

Another dream come true was that I was able to go in the sea. I hadn’t been in the sea for many years or even in the water since losing the ability to swim. With the help of a beach wheelchair I was able to float in the clear, warm waters and sit at the shore with the waves lapping over my feet. I even sat there one afternoon with a (virgin) pina colada.

Is it was an emotional moment, feeling the warm salt water around me. I have been yearning to get back in the sea. It was always such a wonderful part of holidays abroad. Curaçao was definitely a luxurious place to start again. In all the photos of me in the sea I have a huge grin on my face.

I did leave the beach a few times. I travelled to the west side of the island to see some of the lava landscape. Of my lava landscape experiences (Lanzarote and Sicily) it was the least impressive, but I didn’t go to Curaçao for the lava landscapes!

I was excited at the prospect of flamingo watching, but unfortunately there were just two tiny pink blobs in the far distance – they obviously hadn’t heard I was coming.

I visited another beach where you could see sea turtles. However, it turned out to be a man on a jetty, chopping up fish with a machete and tossing them into the water for the turtles to feed on. The jetty wasn’t wheelchair accessible and I didn’t feel that was such a bad thing. I just enjoyed the views along the coastline.

I spent an afternoon in the capital Willemstad, a pastel coloured Amsterdam with winding backstreets and large murals on the walls. I did, of course, buy the obligatory fridge magnet with two flamingos on – a much better view than the real things.

As well as the two flamingos (I definitely did see two wild flamingos), there were the beautiful golden orioles with the song that left you in no doubt you were somewhere tropical and parakeets that seemed more appropriate amongst the palm trees than the giant oaks of Kew Gardens.

I spent an unforgettable few minutes watching a shimmering green hummingbird the size of my thumb feeding right next to me. Every so often a large iguana would walk across the path in front of me.

I loved watching the frigate birds soaring and there were pretty little brown birds everywhere, slightly bigger than a black bird and smaller than a pigeon. I asked a local what they were called and they said just ‘birds’ as they were so common!

I was able to eat dinner and drink cocktails on the beach in the evenings. I did, of course have a blue Curaçao cocktail. I had never tried it before but I’m now a fan.

On my last morning on the beach, I was in my spot and a young girl whom I saw with her dad every day ran up to me and shyly dropped something in my hand – it was a beautiful little shell. The perfect ending to my holiday.

Sunbathing alone on a Caribbean beach in January was an extremely special experience. Writing about it like this brings back wonderful feelings and memories. My dream came true. All of this was real and happened and I will forever be glad of it and fortunate that my disability didn’t stop me.

But being disabled means nothing comes easily. There are parts of the story missing and it has been nice to miss them out. However, I always feel the need to write my truth…The Caribbean. (Behind the Scenes Remix).

Love and Rage is how Extinction Rebellion sign off some messages and meetings and I think it’s perfect.

But there is more to it than that and it goes beyond Extinction Rebellion in my life. Love, rage, grief, connection, education, action. One leads to another, leads to another and so on.

My journey with XR began with the grief and rage of what is happening to our planet and everything I love about it; humankind and the natural world.

The grief of how quickly it is being destroyed and has been, knowingly, for so long.

The rage at governments, banks, businesses, the media, individuals who put money and convenience above the crisis that is staring us all in the face.

I sought connection and found it in XR. “Grief needs a witness, it is a dialogue. You need empathetic company to work through the grief”. I have found a movement that shares my grief and rage as well as my love for our planet. They are prepared to take action, challenge and make demands of those in positions of power.

Extinction Rebellion offers a huge amount of education and I am learning all the time. However, the education increases the grief and rage which increase my desire for action.

Then come the connections and the love that follows from those. My involvement in XR coincided with lockdown, meaning everything moved online and on to Zoom. As a disabled person this was actually quite convenient. I join the weekly XR Brighton General Meeting and it is a place of great community, determination and support.

It’s invigorating being involved in conversations about actions that are being planned, whether I can take part or not. Anyone who comes to the meetings leaves feeling enthusiastic and supported. Our grief has been witnessed.

Taking part in the Kill The Bill protest march in Brighton April 2021 was an amazing experience of unity and community. A wide variety of groups and individuals getting together to noisily yet peacefully share our rage.

Every therapist I have had has asked me “what do you do with all your anger and frustration [about my personal situation]? I never have an answer because I don’t know what to do with it. But shouting at the top of your voice with a huge crowd of people at your frustration with the system is certainly a good outlet.

I met one of the XR members face to face at the protest. We had only connected virtually before and it was so exciting to meet each other.

The journey of grief, rage, connection, education, action, love. It becomes an intertwined circle.

I have been following the same journey with Gateway Women for the involuntarily childless. We grieve, we rage, we connect, we love, we educate, we take action.

I am educating myself and learning a new language from Jody Day with which to express and understand my grief.

“Pronatalism is ingrained in our society, where people with children are considered more important than those who don’t”. She talks of how politicians promote their family friendly policies rather than people friendly policies as one example.

Realising this has been an undercurrent to my life since my late 20s and continues through films, TV, literature, advertising and so much more brings rage and frustration as well as sadness.

Realising we are an invisible minority in society makes the connection between us even stronger and more and more brave women are leading action in the workplace through their HR departments and inclusion and diversity policies and practice.

I want to educate young people about fertility and continue to make steps towards making this happen.

Most involuntarily childless women start their journey as I did thinking they are alone. In fact one in five women in the UK are involuntarily childless and that is reflected across the developed world. An invisible, yet significant minority.

Disenfranchised grief, living loss, non-death bereavement are words I can use to describe my grief thanks to Jody. A grief which is not recognised or acknowledged by others.

In Gateway Women we witness each other’s grief, allow each other to rage and show each other love.

I rage about a lot of things. The news headlines, the fragmentation of the countries within the UK, Brexit, the Global North and its destructive effect on the Global South, the constant battle that I and many others face to access support and services, the terrible inequalities within our diverse communities, the terrible inequalities across the globe, the lack of forward thinking and global cooperation brought into stark highlight through the pandemic. ‘Greed and capitalism’ as BoJo put it so perfectly. It goes on and on and on and overwhelms me.

I have MS that started and has advanced significantly because of my grief of childlessness. I am permanently single because of how advanced my MS is. I am raging and grieving about that. I am shown a huge amount of love from family and friends because of it.

Perhaps ironically MS is one area in which I am least educated and connected. Maybe that will come next. I need to take action to connect with single, childless women with MS. I don’t really witness my grief within that community.

Love and Rage. Grief, connection, education, action. These are the things that are keeping me going.

All quotes (apologies they are not word for word) from Jody Day in her groundbreaking lecture in March 2021: The disenfranchised grief of involuntary childlessness.

Both Extinction Rebellion and Gateway Women are constantly evolving, listening, learning, changing and developing and my journey is part of a collective journey.

A couple of book recommendations and further thoughts:

The Wall by John Lanchester.

A story about how young people have been left to defend the country which has been destroyed by their parent’s generation. It rings so true as to the mess we have left the next generations.

Interestingly, Jody makes the point that as childless women we can have a wider outlook and be more altruistic in the way we view future generations than those who have their own children and I certainly feel this way about my involvement in XR and the development of fertility education.

An Absolutely Remarkable Thing and its sequel A Beautifully Foolish Endeavour by Hank Green.

I read these during the first lockdown and was struck by the way the books lead to global cooperation as the news in the real world was telling the complete opposite.

The books come under my favourite genre of near future dystopia/sci-fi/fantasy.

https://extinctionrebellion.uk/

https://gateway-women.com/

I spent Christmas lying low and avoiding social media. I don’t do Christmas so just wait for the hubbub to pass

This year I surrounded myself with voices that have moved me greatly. Authors, activists, performers and a group of women.

Margaret Atwood spoke with wisdom, consideration and frank meaning behind every word on Radio 4’s Today programme. Her conversation with Greta Thunberg should be heard by every politician and world leader. Two women, young and old saying it like it is with such insight and intelligence but also just stating the obvious that is staring us all in the face.

Extinction Rebellion have put some of their Rebel Academy lessons into audio files, so I listened and learned.

I warily signed up for zoom conversations with Gateway Women for women childless not by choice (CNBC). https://gateway-women.com/

I’m A Childless Mother

Regular readers will know what a big part of my life GW has been, but a chat on Christmas Day, when being childless and single is the most difficult, seemed like a potentially bad idea. Why would I want to bring all this to the fore when I could just stare at the TV and numb myself?

The solo childless women chat was in the evening, and about 15 of us around the world talked, cried, raged and laughed together. I sobbed so hard at one point I can’t imagine anyone could really understand what I was saying, (for me it was the triple whammy of being single, childless and disabled) but woke up the next morning to messages from several of the women in the chat checking up on me and sending me love. We have all been sending each other messages of love and support over the past week.

I joined a more general CNBC zoom on Boxing Day and we talked about our connection in a club nobody there wants to be a part of. It is a deep connection.

We also had another solos chat on New Year’s Eve with more shared tears and laughter.

I have also joined a CNBC chanting circle. We meet every Sunday evening. Luckily we are all on mute but the words to the chants are about bravery, sisterhood, being a woman, being loving… It is therapeutic to chant with other CNBC women even though we can’t hear each other. I can hear my own voice and I let the words and sounds reverberate and heal my body and soul.

Jody Day, founder of GW can be heard on TED and YouTube. This week I listened to her on a podcast where she was given the amazing title of The Beyoncé of Childlessness. The Beyoncé of Childlessness

My access to books is through audiobooks as I can no longer pick up a book or device. I am therefore immersed in voices as books play a huge part of my life.

I use Audible and have just discovered BorrowBox, an app that allows you to borrow audio and e-books if you have a library card. I have just borrowed and started Why I’m No Longer Talking to White People About Race, written and read by Reni Eddo-Lodge.

Kae Tempest poet, spoken word artist, rapper, singer, author blew my mind the first time I heard them. I have listened to them a lot recently.

I had listened to the albums Everybody Down, Let Them Eat Chaos and The Book of Traps and Lessons when they first came out and many times since and have returned to them again this Christmas.

Watching them perform Let Them Eat Chaos Live on stage is the most mind blowing performance I have ever seen.

Kae commits their albums to memory and performs them without stopping. It is raw, emotional and breathtaking. They recorded their most recent album, The Book of Traps and Lessons in one take.

They recently put on two Facebook live conversations. One was with Flea of The Red Hot Chilli Peppers, who I was unaware I had turned author. The other was with Willy Vlautin whom I had not heard of before. I could have listened to these conversations for hours.

I had already listened to Kae reading The Bricks That Built The Houses. Over Christmas I listened to Willy Vlautin reading his book Don’t Skip Out On Me. Both brilliant.

The author reading their own work affects me deeply, and none more so than Kae Tempest reading their latest book On Connection. Written during lockdown, it is non-fiction and about the connection between artist, text or artwork in whatever form and audience as well as human connection and so much more.

When I finished listening to On Connection I listened to the track People’s Faces and sobbed…Kate Tempest. People’s Faces

A brief introduction before I start this. I always write my blog posts for myself and this one probably more than any other. I dictate rather than type, so speaking it all out loud is both therapeutic and cathartic. I cry as I speak and it does me a lot of good.

However, I am aware I’m putting this in a public sphere. It’s not particularly positive or uplifting, but there is no need for concern. I have good personal and professional love, help and support and I am not looking for sympathy.

You also obviously don’t have to read this if you don’t want to! I’m just going to be honest and get it out of my system a bit. Trigger warning about mental health issues.

In a way, this is really two years on, as on December 21st 2018 I was discharged from hospital into a nursing home and then moved into my own place November 2019. My life changed completely at the end of 2018 and is still unrecognisable and unfulfilled at the end of 2020.

The transition from working full time to hospitalisation to living in a nursing home to living back in a home of my own but not working and having full-time care is one I have still not overcome.

A few links to relevant blog posts if you want them:

Starting again.

The Mail on Sunday and beyond….

A Year On…Part One: Money.

A Year On… Part Two: Home

In Starting Again I write about everything I’ve lost in order to begin to accept it and start again. I knew it was going to be a struggle and it certainly is.

I have since gained a beautiful home and a very different lifestyle to the one I had in the nursing home but I’m still grieving for all I’ve lost. I continue to lose independence and more due to MS and life in general. I find life very difficult and cannot seem to come to terms with how it has ended up for me and how to face to future still to come.

Before we go any further though, I must make it clear how unbelievably lucky and grateful I am to have left the nursing home and had my colostomy and suprapubic catheter operations last year. I can’t even think about how things could have been were it this year.

My mental health is poor. Constant grieving goes alongside having a progressive illness. I share this cautiously but feel the need for more public openness if others do read this and thank others that have gone before me in being open about their mental health; I have self harmed and have suicidal thoughts. Note my comment above about receiving professional support.

My ability to access NHS mental health services has been dismal and I know I’m by no means alone. As always, it’s not the wonderful people working in the NHS, it’s the lack of funding.

In 2017 my MS nurse was happy to tell me they finally had a counsellor for patients so we filled out the referral form. She came back devastated to tell me that I was too depressed for the counsellor’s services. Luckily, I was in a position to be able to afford a private counsellor.

In September 2018 my neurologist was very concerned about my mental health and referred me to the Wellbeing Service, warning me of the long waiting list. I started taking Sertraline, which definitely helped and I took it for six months.

By November I was admitted to hospital. My mental and physical health had both fallen apart. I had a couple of meetings with a mental health nurse in the hospital but they were brief as he had such a huge workload.

Once in the nursing home in 2019 I finally heard from the Wellbeing Service and had a referral for an assessment. I chatted to the assessor for about an hour and a few weeks later heard back. They were sorry, but my needs were too complex to be met by their service.

Whilst in the nursing home my MS nurse came to visit and was once again happy to let me know that they now had a psychotherapist for whom you could not be too depressed to see. She put me on the waiting list, which she warned me was long.

I was lucky enough to still be in the position to be able to pay for private counselling sessions.

These stopped when I moved into my new home and I contacted my MS nurse to find out whether I was any closer to seeing the psychotherapist. She was once again devastated to have to tell me that they had lost that service.

Just as a darkly funny aside, in 2017 I rang The Samaritans for the first time. While I was talking I could hear an alarm going off in the background which I tried to ignore and the Samaritan I was talking to was obviously doing the same. It was seriously loud though. Eventually, I asked him whether everything was OK his end and he apologised profusely but told me he was going to have to end the call and that was the end of that. The Samaritans hung up on me! He did a good job though because I was laughing about it afterwards.

I have rung them a few times since and they really are brilliant. One of the most wonderful and important people in the world in my life is a Samaritan and I know if anyone were to get her at the end of the line they would be in the most safe and caring hands. If you need them, call them. https://www.samaritans.org

I started looking for a psychotherapist but they were neither wheelchair accessible nor affordable (£175 an hour?!).

Then, a lockdown benefit; a friend was in a local mutual support WhatsApp group and a psychotherapist was offering a free consultation for frontline workers and vulnerable people. She put me in touch and I have been seeing her weekly ever since.

She is affordable and local. We started on FaceTime but she is classed as a key worker so is able to come and see me at home despite tier restrictions. She is my absolute lifeline and this time I’m in it for the long haul. It’s hard, traumatic work and the sessions are exhausting but lighten the load a little bit at a time.

My physical health restricts my life greatly. I am stuck in a body I absolutely hate. I have carers 12 hours a day. Two in the morning for 2 hours to get me up, two in the evening for an hour to put me to bed and one with me all day.

I have developed a strange daily routine and get everything done in the morning and spend the afternoon alone in the flat in a reclining chair. I get up at 9.30, eat breakfast at 11.30, a main meal at 2.00 and go to bed at 8.30.

I can’t move my legs or feet and my hands and arms barely function. I am not able to do any personal care or dress myself. Last year I could brush my hair and a couple of months ago I could brush my teeth but can’t any longer.

My stoma and catheter have to be dealt with throughout the day.

I sleep in a hospital style bed. I am hoisted with a ceiling hoist in and out of bed, a shower chair, my powered chair or my reclining chair.

I can just about eat meals myself but have to wear a bib and I won’t even allow my carers in the room while I eat as I find it so embarrassing. They often have to assist me to finish a meal. I drink hot and cold drinks through a straw.

I can still use my phone, the TV remote and the position controls on my bed and reclining chair, although those actions are clumsy and complicated. I listen to music, audiobooks and podcasts and watch an obscene amount of TV. I can’t move around at all but at least I’m left alone for 4 or 5 hours a day with my carer on call.

Thankfully and joyfully I am able to get around independently in my powered chair. Lockdown has made me lose confidence in going out alone because I didn’t do enough of it and this is something I need to work on. I can’t physically get in and out of the flat on my own but once out I can have some freedom.

At the back of my mind though is the constant knowledge that I may well eventually lose these freedoms.

I do my best with self-care. I eat a healthy, mostly vegan and gluten-free diet. I have an exercise bike that pedals for me and I can exercise my arms on. I have reflexology and massage when I can and occasionally I remember to meditate.

I have wonderful friends in Brighton and beyond who make time for me around family and work and show me amazing support. They keep me in touch with the real world beyond carers and my strange everyday. We chat, we listen, we laugh and there are sometimes tears (usually mine).

Another lockdown benefit was that we reached out to each other more than we would have done normally. It also meant I got to hang out in the little garden with some of the residents in my block of flats. A mixed bunch of wheelchair users with a wide range of disabilities and big hearts.

My family are all over the country but we keep in touch all the time and we know we are always there for each other. I am completely blessed by them and they are my tether to the person I once was as well as to who I am now.

When mum came to stay January 2020 she asked me the question (a mother’s intuition.) ‘Are you lonely?’ I cracked. I am so glad she asked and I am so glad she was there to comfort me.

The answer is yes. Would I like a loving partner? Yes, of course. I miss male company, affection and intimacy, and I am having to come to terms with the fact that my past relationships were never really healthy or loving.

People make the point about how relationships are difficult, complicated, stressful and so on. Believe me, I know. But once the opportunity and possibility of at least having a shot at one disappears the yearning for it and grief over it are great.

I miss working so much. In some ways it is wonderful to be retired, have time, less stress and I am in absolute awe of my teacher friends as to how they have coped this year. But how I miss the company, comradeship, pupils, intellectual challenge and conversation. I am sure some of my mental health problems are due to not having any distractions from my own head.

I set out some aims in Starting Again. I have not made any progress in campaigning for more suitable housing for younger people with disabilities nor have I developed a part of the PSHE curriculum around childlessness not by choice. They are not forgotten though.

What I have done is get involved with Extinction Rebellion. 2020 and all it has brought, David Attenborough (although he is not fully supportive of XR), Greta Thunberg and Margaret Atwood all led me to XR.

I am making (at the moment zoom based) connections with people locally, nationally and internationally, educating myself, and trying to do something with like-minded people to battle the inaction and destructive actions of governments, global companies and institutions through non-violent direct action and civil resistance.

It helps with the feeling of powerlessness about the state of the planet and the powers that be and gives me the feeling that I can say to my nieces, nephews, godchildren, friends’ children, ex pupils and the next generation ‘I tried’. https://extinctionrebellion.uk/

I lost my connection to the childless women community but have recently rebuilt it and am fully engaged again. It feels good to be part of such a strong, brave, resilient sisterhood. https://gateway-women.com/

So, that is my life in stark reality. I am surrounded by amazing family and friends yet deep down in some ways I’m still unhappy and lonely.

I am well cared for but I don’t want to be disabled and I don’t want carers.

I have ended up living a life I didn’t choose or wish for and have little power to change.

The thought of the years ahead of me while my condition progresses is exhausting.

I often feel that I am losing the Nina who is trapped inside this body but I’m trying my best to hold on to her with the help of others.

Do I feel better for having written this and got it out of my system a bit? Yes. That is how it is, warts and all. I’ve been honest, said it out loud and it’s out there now.

2020 has for obvious reasons been a dreadful year for me, my loved ones, my outer circle, the UK, the world. I am not alone in my suffering and many are suffering far more greatly than me. How we all keep going amazes me, but we do. There are always some ups and some highlights that keep us going.

The world is falling apart climatically, ecologically and politically. People are coming together in wonderful ways but are more divided than ever in others.

I have made some steps towards change for next year so I wonder where I will be a year from now and I wonder what state the world will be in a year from now. The world keeps turning and life goes on…