Love and Rage

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.

Words and Voices

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).

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 Year On Part Three: Life

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.

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’.

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.

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…

A Year On… Part Two: Home

On November 1st 2018 I was admitted to hospital and would never return to my flat. On November 1st 2019 I moved in to a home of my own again.

I was medically fit to leave hospital after three weeks but stayed for two months while a social worker looked for suitable housing for me.

I was moved to a nursing home where I remained for 10 months, stuck until my flat sold and a suitable home was found for me.

My housing officer did his best to help but was very limited in what he could do while I still owned my flat He was looking into share to buy schemes but there weren’t any adapted flats and I was still stuck until I had sold.

I hit that headlines The Mail on Sunday and beyond…. and lots of kind strangers got in touch with me. One guy told me of a place in central Brighton; a block of 10 flats adapted for people in wheelchairs. His cousin lives there and he was aware of there being an empty flat.

I told my housing officer straight away but received very little response from him. Finally, my flat sold. My disdain for estate agents is considerable and I hope I never have to deal with them again. However, it was done and the money was irrelevant anyway. A Year On…Part One: Money.

This was late August/early September. My housing officer continued to struggle to find anything for me. There is simply very little adapted housing available.

Then, late September my social worker got in touch and told me about a flat in central Brighton that was available. The same one that kindly stranger had told me about months earlier.

It turns out my social worker wasn’t even aware that I had been told about the flat. When she heard about it she felt I was an ideal candidate. All the media coverage had raised my profile within Adult Social Care in Brighton and I definitely think that helped.

I went to visit it and was overwhelmed. A large, top (second) floor flat in the middle of Brighton. The whole building and the flat were wheelchair friendly. The bathroom alone was the same size as my room in the nursing home. When I looked down the road from the bedroom window, as there were no leaves on the trees, I could see the sea.

It was then I realised how institutionalised I had become and was actually fearful of living alone. I would have to arrange a care package but had got used to having 24 hour care available in hospital and the nursing home. It made it very difficult for me to judge whether the flat was going to be suitable for me.

It is a social housing flat owned by the Guinness Partnership and the woman showing me around told me they would need a decision in a day or so. It gave me no time to think or worry so I said yes and thank goodness I did. I had the keys to my own home!

I was told I was able to do whatever I wanted to the flat decor wise so, as I had to give a month’s notice to the nursing home, I took the opportunity to have the wood effect vinyl flooring replaced with carpet.

My friends gathered my belongings that they had been storing for me in their homes and the few bits I had at the nursing home and on November 1st 2019 I said my sad yet happy goodbyes to the wonderful staff and arrived in my new home

I had arranged a care package, so two carers were waiting for me in the flat. The occupational therapist had organised a manual hoist and hospital style bed for me.

I don’t remember much about that first day, but for a while I had been feeling nervous about being left alone for the night for the first time in over a year . However, when the front door shut and it was just me and my flat I felt nothing but pure joy. I still get that feeling whenever my carers leave in the evening. It is my favourite part of the day.

The next few days and weeks were spent ordering furniture (I had to spend my money before the council got their hands on it!) and my carers and friends put together chairs, tables, a wardrobe, cabinets, a sofa, hung lampshades and pictures – with their help my flat became my home.

It was wonderful starting from scratch and knowing I was the only person living in the flat so I could buy whatever I wanted for it. Previously, when moving, I had always had my partner’s taste to consider. I knew what I wanted and I bought it. It was also lovely to be able to unpack the few belongings I still had from my previous life. I had a beautiful home of my own.

The difficult part was getting used to my new care package and it is still an ongoing process. The OT had arranged a reclining chair for me, but because I have to be hoisted from bed to powered chair to reclining chair and so on I needed two carers. So, although I had my new flat there were always two carers in it with me. There is plenty of space but I was always conscious of their presence.

My OT was doing everything she could to get a ceiling hoist fitted, which only requires one carer. It was a complicated process because of the ceilings in my flat and took some time to organise but we got there in the end and just having one carer with me makes a difference.

The cousin of the man that got in touch with me in the first place about the building introduced himself very quickly and he is such a nice guy. He arranged for me to go around and meet all the other residents. We range in age with a wide variety of disabilities and it is such a friendly place to live.

Lockdown meant I got to know four of the residents much better as we would hang out in the small garden when the sun was out (all two metres apart of course). It also meant I got in the habit of sending my carer home for the afternoon as there was nowhere to go and nothing to do so I had much more time to myself.

I have spent 2020 feeling so lucky not only to have such a beautiful flat but also thinking how it would have been were I still in the nursing home. I can’t imagine how difficult things must be for them and I am so grateful that I am no longer there.

Friends would meet me for walks along the seafront during lockdown and on one such walk a friend showed me the wallpaper she was putting up in her bedroom. I loved it and it sparked the start of the redecoration of my flat. I had permission to copy her good taste, took a deep breath about the flamingos (Flamingos), was recommended a decorator by one of my carers and the transformation began.

I hadn’t considered wallpaper before and was now obsessed with it. The website selling the wallpaper is called World of Wallpaper and that is now what I call my flat.

It is truly mine and I absolutely love it. Every room makes me happy and I feel so lucky to have such a beautiful home 10 minutes away from the sea, the town centre and parks.

It was a long and distressing journey to get here but it’s most definitely worth the wait. However, I have not forgotten that the journey should have been neither long nor distressing and that other people are going through the process I had to go through to get here.

I want to campaign about it with the powers that be but I’m still fighting my own battles. I dream of being left alone and wandering from room to room around my flat even if it were for just one day. A Year On: Part Three will be about my life so far since I’ve moved here. That’s going to be a harder one to write, but I’ll get there. In the meantime I have some beautiful wallpaper to look at.


One day I fell in love with a flamingo. Not a live flamingo. Not any old flamingo. A Fabergé flamingo.

In the jewellery section at the V&A museum there is a cylindrical display case with a spiral of Fabergé animals. Right at the top is a flamingo, or my flamingo as I now consider it. I’m very grateful to the V&A for looking after it for me though.

I saw it and was entranced. About 3 inches high, gold legs, a mother of pearl body, a diamond studded neck, ruby eyes; just beauty and perfection. I visit it every time I go to the museum, although sadly now that I’m in a wheelchair I can’t really see it properly anymore.

For that reason a friend took a photo of it for me when we were there a couple of years ago, although it doesn’t really do it justice. It was taken in a hurry as you’re not supposed to take photos of the jewellery.

But it doesn’t matter, the magic had happened years before, the flamingo had entered my soul and little did I know where it would lead!

That was back in 2010 and flamingo designs weren’t really a thing back then. However, I found a cushion in Habitat with flamingos all over it and that was item number one.

But then flamingos as a design trend did become a thing and some friends found out I liked flamingos having told them about the one I fell in love with. My Fabergé one.

It suddenly became very easy to buy presents and cards for me. I received a couple of flamingo themed cards and gifts one birthday, which I happily placed in the flat. Friends and family visiting the flat would notice there were quite a few flamingos.

And so it began to snowball. I was given a lot of items that were flamingo themed. I loved them all but the flat wasn’t quite big enough to accommodate so many flamingos! However, they all brought joy.

They included a flamingo watering can, a string of flamingo fairy lights in the lounge along with three flamingo cushions, a flamingo tea towel and fridge magnets in the kitchen, flamingo glasses to drink out of and flamingo glasses to wear, a flamingo make up bag, plenty of things I’m afraid I may have forgotten and lots of flamingo birthday cards every year.

When my ex left me my wonderful nephews bought me a yodelling flamingo. Yep, press button on its wing and its neck rotates and it yodels! It was exactly what I needed to cheer me up.

I had just started a new job in a pupil referral unit, so it took pride of place on my new desk and brought a smile to pupils and teachers alike.

Then three years later I was admitted to hospital and never returned to my job or flat. I had to get rid of all my belongings and only two flamingo cushions and four flamingo drinking glasses survived. I decided it was time to let the flamingo theme go.

When, eventually it came time for me to retire on grounds of ill health I packed up my desk and my friend helping me took the yodelling flamingo for his daughter, spreading the flamingo joy.

Even then a colleague from work who came to visit me in hospital gave me the gift of a book titled ‘How To Be Flamingo’ because she’d seen the one on my desk.

My nursing home room was flamingo free…until Christmas. On Christmas Day afternoon there was a knock on my door and it slowly opened to a familiar sound. The yodelling flamingo! My friend and his daughter had arrived with a Christmas gift for me and so I was reunited with the toy of joy.

Another friend visited on Boxing Day with food and drink for a celebration and with her came a pair of very stylish flamingo Santa earrings.

When I left the nursing home and moved into my new place the two flamingo cushions, drinking glasses and yodelling flamingo came with me. I wore the flamingo Santa earrings on Boxing Day again when my friend and family visited.

But I felt that flamingos had finally taken a back seat in my life. I made the decision that flamingos would not be a theme in my new home (although I must confess to having bought flamingo salt and pepper pots pretty soon after I moved in because the pink looked good on my dark grey table).

Funnily enough, I do like real flamingos but I’m not crazy about them. However, I was very happy to see the flamingo emoji finally appear, although I sadly seem to have little opportunity to use it 🦩 .

Last week it was my birthday. I didn’t receive any flamingo cards or gifts, but then…the following day one of my carers arrived with a card she had made online saying ‘Have a flamingotastic birthday Nina’.

She also gave me a nightshirt with two flamingos on the front saying ‘Let’s flamingle!’ I slept in it last night. She bought it because the colours match the wallpaper in my new bedroom. Oh Fabergé, so much to answer for…

A Year On…Part One: Money.

Well, it’s been over a year since I was living in a nursing home, hitting the media and fighting a fight that couldn’t be won against the government policy on paying for care.

A lot has changed in the past year and it’s time for an update! I shall start with money.

I finally managed to sell my flat at a painfully low price – less than what I had bought it for 10 years earlier. However, I had had enough of estate agents and just needed to sell in order to be able to move on from the nursing home. Plus, I knew the minute the money hit my bank account it was no longer mine anyway.

A month or so earlier I had received the lump sum for my early retirement on grounds of ill-health. It was now time to let the council know there was money in my account.

I had the best part of £100,000 in my account from the sale of my flat and my pension, earned from over 20 years of full-time teaching with progressive MS. £80,000 was gone within several weeks, taken by the council to repay some of my fees for living in a nursing home and to pay for my care in my new home.

I had to provide all of my bank and credit card statements to prove I wasn’t guilty of ‘deliberate dispersal of assets’ ie. giving my money to family, spending it on non-essentials or putting it into other accounts.

I also can’t forget that it was finding out about this situation in 2018 that led to me having what was really a nervous breakdown and probably contributed to my hospital admission in November of that year.

I was allowed £23,250 but as soon as my balance went over that I would once again be liable for the costs of my own care and continue to be under scrutiny for deliberate dispersal of assets. Also, based on my income from my pension I would have to contribute £800 a month for my care. For the rest of my life.

Towards Christmas my social worker suggested applying for Continuing Healthcare funding. This funding is provided by the NHS rather than Adult Social Care and would not be continuously means tested. I had applied earlier in the year with my MS nurse but was not deemed eligible.

It is based on the complexity, intensity and unpredictability of your care needs under the following areas:

  • breathing
  • nutrition (food and drink)
  • continence
  • skin (including wounds and ulcers)
  • mobility
  • communication
  • psychological and emotional needs
  • cognition (understanding)
  • behaviour
  • drug therapies and medication
  • altered states of consciousness
  • other significant care needs

Just as a ‘funny if it weren’t so awful’ aside, a care professional, whom shall remain entirely anonymous (not my social worker or MS nurse!) thought they would helpfully start the process for me. While we were talking I went to clear my throat, which I find difficult as my core/diaphragm is weakened by my MS. I explained this to them and under the heading of ‘breathing’ the very first line of the initial assessment form was ‘ I have no diaphragm’. I couldn’t believe it! Their notes throughout the form continued to be as unbelievably bad. I sent the form back letting them know that it was full of mistakes and that I do have a diaphragm.

They apologised and said they would go through and make improvements. When the second copy came back I didn’t know whether to laugh or cry. The very first line was ‘ I do have a diaphragm.’

Needless to say my social worker filled it out professionally and I passed the initial assessment. The next stage was a full assessment, which involved a team of six people (the assessor who was a nurse, two social workers, my occupational therapist and two of my carers) discussing my care needs for well over an hour.

Mid-January I received the news that I was eligible! So, I no longer have to contribute to my care costs or have my bank statements scrutinised. It’s crazy really to be happy that I am disabled enough to be eligible for this funding. But, eligible I am and I am extremely grateful for it.

It is so, so wrong that people have to spend their life savings on their care, but it seemed particularly unfair that I was only 47, have many years of care ahead of me and had worked my whole life for that money. Shame on you Tories, shame on you.

I was able to claim back the money I had contributed towards my care from the date of my initial assessment and that was £7000 of the £80,000 the council had taken.

So, I am now able to keep my money, spend my money, save my money and give my money away without scrutiny and it is such a relief. But I still resent that £73,000 so, so much!

But it is, thankfully a happy ending. Thank goodness I had professionals around me who thought to apply for me. If you want to find out more about Continuing Healthcare for yourself or a loved one the link is here:

Now I have started writing again, I shall continue. Next time I will tell you about my housing situation. Spoiler, it also has a happy ending!

A Year On… Part Two: Home

The Mail on Sunday and beyond….

It all started with my blog about my financial situationMy Money. Personal vs Political

A friend I lived with when I first moved to Brighton kindly shared it with her sister, a journalist who thought it was a story worth telling. Rebecca wrote a great article and checked every bit of it with me for accuracy and that I was happy with it. The Mail agreed to publish it.

It became not only a story about my financial situation but also a story about my living situation – housed in a nursing home for the elderly at the age of 46 and the lack of provision and suitable accommodation for younger disabled people. Through Rebecca’s research it became obvious that I am by no means alone in my situation.

My concern the whole time was that the nursing home I am in was neither identified nor portrayed in a negative way. The care I receive here is amazing and I am free to come and go as I please, receive visitors and meet with friends in Brighton.

So, the article was published on Sunday and my heart sank at the headline wording of ‘left to rot in a nursing home’ and subsequent phrases such as ‘mind numbing boredom’ and the implication that I am stuck in my room and isolated. A lot of Rebecca’s great article and research are there but the Mail has added plenty of their own with some inaccuracies and the dramatic language.

I read it through the eyes of the staff at the care home and even though it’s not identified I knew they would be upset by the description of my life here (as was I) as it is simply not true. It also says I can get myself out of bed and dress myself and the fact that I can’t is the whole point of me being here! I need two carers and help with everything.

I do understand why the Mail did it for the sake of the story and the wording is there to criticise the system and not the home, but still….

It took me several reads of the article to see all of the positive messages that were in it and the support behind the injustices of my situation and others like me. Rebecca had understood my situation so well and charities and experts in the field of neurology added their support behind the message as they are just as frustrated by the issues of care. The Mail are starting a campaign about the lack of suitable care and accommodation for young disabled people.

As the morning went on I received more and more messages from strangers who had googled me and contacted me through Facebook or this blog. It was overwhelming – the kindness, anger and wanting to help from people, many of whom said they had never contacted someone after reading something in the paper before. It took me two days, with help of a friend to reply to everyone. One guy has told me about a residential care home where his younger cousin is in Brighton that I wasn’t aware of, so will be following that up.

Then a friend of one of my childhood friends works for BBC Southeast Today, saw the story on Facebook and I received a phone call from them early Monday morning. By 11 o’clock the presenter and his camera were in my room interviewing me. It was great to be able to lead the story in the direction I wanted away from the ‘left to rot in a nursing home’ and towards the lack of suitable accommodation for people like me and my financial situation that makes me so angry.

During the morning I had also been contacted through Facebook by the Matthew Wright show on talkradio asking for a live interview at 15:20 that afternoon. They explained that Matthew has a good friend with MS and the interview went really well. Matthew was very empathetic and gave me the opportunity to talk and explain, again re-dressing the situation that the Mail had implied about the care I am receiving. He listened and understood about my financial situation and lack of housing and was suitably angry on my behalf at the injustice and need for change.

The BBC news item in the evening was also really well done. They interviewed someone from Sue Ryder. The charity had added to the original article explaining that there are 15,000 people in the UK in my situation.

That afternoon BBC Sussex radio called asking for a live interview at 7:05 the following morning. Again, it seemed to go well and it was good to find myself having the voice I was hoping for to explain the difficulties I am having with finding accommodation and the frustration of my money not being my own to spend, instead all going on my care and accommodation. They also followed up with an interview with a spokesperson from Sue Ryder.

I received a phone call from the station afterwards as a lady had called in wanting to talk to me about possible accommodation ideas she had for me in Brighton. I gave her a call and she was absolutely lovely. I was aware of the accommodation and it is age restricted, but how nice of her!

I then received a Facebook message from ITV Meridian asking for an interview in the afternoon. So, by 3pm I was back in front of the camera in my room having my voice heard. I must admit by the end of that I had really had enough of it – I was exhausted!

But, I have watched and listened to all of the interviews and will admit to being pleased with how they went. All of the media outlets have asked me to keep in touch with updates as they occur.

I contacted Brighton and Hove City Council as I was aware they were being approached a lot by the media about me. I emailed the news department and asked them to pass on to the relevant senior staff that the care I am receiving here is amazing and not how it had been portrayed in the Mail. I did receive a reply thanking me for my email and assuring me that the message had been passed on.

My Facebook post has been shared 86 times and the article on MailOnline has been shared 6.3K times! I’m not on Twitter but others have shared with me how widely it has spread.

I met this afternoon with a wonderful woman I had the fortune and honour to meet through work and who I can now call a friend. She is determined, inspiring, makes great things happen, and does huge amounts of amazing work for women and disadvantaged teenage girls such as the ones I used to work with as well as being a successful author.

Ali Golds has given me the encouragement I need to believe in the message I’m trying to spread, what I’m campaigning for and to keep the momentum going now it’s started. She also has a vast network of connected people and said she is more than happy to help rattle cages. And I’m definitely ready to do some cage rattling!

So, that is where I am 3 days after the article was published. The encouragement and support of family, friends, the media and complete strangers has been unbelievable. Thank you to Rebecca Burns for seeing the potential from blog to article and making it happen.

I now need to get organised, have a plan in place and find courage. The campaigns are just getting started for:

a) more suitable residential care and accessible accommodation for younger people with disabilities and;

b) a fair financial system so that disabled people like me who have worked all their lives contribute towards their care and accommodation but also have recognition of the fact that we have our whole lives ahead of us and deserve to access our money to make the most of that life.

Starting again.

Before I can start again I need to take stock of what I have lost.

Up until October 2018 I was living in a one-bedroom flat I had owned for 10 years. I was working full time as an assistant head for the pupil referral units in West Sussex. I drove an adapted car which I used for work, visiting family around the country, day trips and short breaks.

I was able to be stood to my feet with the aid of one person and transferred to a wheelchair, the car, the sofa, the bed and the toilet. I could stand on my own with a walking frame and take a couple of steps. The rest of the time I used my powered chair.

Since the end of my long-term relationship I dabbled in online dating and was very surprised to find guys up for the company of a disabled woman and I had a lot of fun, including a lot of physical fun!

But from November 2018 onwards I found myself no longer able to stand up without two people and a mechanical aid, I couldn’t walk anymore, my hands and arms became weak and my left hand clenched into a permanent claw. I had a catheter inserted and my bowels no longer worked. I was eventually moved into a nursing home.

My flat has been on the market for over a year and several sales have fallen through. In January the buyer insisted he could move quickly. I knew I had to empty the contents of the flat so sold everything possible on Facebook marketplace, donated everything else of any quality and sent everything else to the dump. Then the sale fell through. I now have hardly any possessions at all. There isn’t really room for anything in my single nursing home room. A couple of friends are kindly looking after the bits I couldn’t bear to be parted with.

I sorted through all of my clothes. The majority went to charity, I have a small selection here and a small suitcase full, which at some point I will try and sell.

I returned my Motability car.

So, my physical belongings are very sparse indeed. A lifetime of items gone.

But, there are losses that cut much deeper than material items.

I can no longer swim which is a huge heartbreak. I was a good swimmer in my youth and rediscovered it as a disabled person after watching the 2012 Paralympics. It was an absolute joy to discover I could still swim and the only thing I could do non-stop without help for up to 45 minutes. I would swim once a week. Complete freedom! I’ve not ruled out ever getting in the pool again but it’s going to be very complicated and I won’t be able to swim as such.

Since January my right arm has been getting worse as well and is now as clawed as my left hand. Using my phone, the TV remote and the controls for my hospital style bed is getting harder by the day. I can no longer pick up a drink and I can barely feed myself – I can certainly never eat in public again – it’s very messy!

I have recently had two operations. I now have a suprapubic catheter and a colostomy. No longer having to use the toilet has definitely improved the quality of my life but my body feels very mutilated and completely signals the end of any hope of a sex life. Having only recently rediscovered the joys of it I am certainly not ready for it to end, but end it has.

Even harder to bear is the knowledge that I will never have a relationship. ‘You never know…’ is the most unhelpful and painful phrase I can hear in response to this discussion. Only those who know and love me know as well as I do that I will never have a relationship. I have a progressive disease which has taken away so much of me and is only going to get worse. I know I am loved by many people and I’m so grateful and lucky for that but it doesn’t stop the immense heartbreak I feel knowing I can never be loved in that special, intimate way. I crave intimacy, affection and the sharing of joys and troubles that you can only have with that one special person in your life.

I feel robbed of so much – the love of a partner, the love of children, the freedom to do whatever I want whenever I want to. It’s damned difficult.

Three weeks ago my ill health retirement came through.

So, in summary I have lost my home, my possessions, my car, my career, my ability to walk, my ability to swim, my ability to travel easily including visiting my family, my ability to use my hands and arms very much, my privacy, my sexuality and my ability to be in a loving relationship, and most of that in the space of eight months. Jeez.

I have now got to start again. I have got to find the energy to start again. I need to seek opportunities and find a purpose in life in order to keep going.

I’ll start with what I can still do at the moment. I have a powered chair and once I’m in it I can travel about quite freely and alone for a certain amount of time. I can get on the bus and go wherever I want. I can travel up and down pavements and in and out of any accessible shops, theatres, cinemas, cafés and so on. I live by the sea so I can go down to the seafront whenever I want.

The warm weather makes life so much easier. When it’s cold I am unable to take off hats, gloves, coats and scarves if I go indoors so have to have someone with me.

I can’t pick up items in shops but shop assistants are brilliant at helping me, including opening my handbag and taking out my purse and cash or cards then packing my purchases.

Now that I have the colostomy I will need someone with me who is able to change it if I wish to be out for a longer period of time, but I’m going to make this happen.

I’m going to start researching the possibility of a short break and travel further afield. My original plan when I considered retirement was to do travel writing from a disabled person’s perspective and I would still love to see if I can make this happen even though I’m not supposed to spend my money on anything but the basics.

I can dictate and enjoy writing so this is something I need to pursue further.

I have considered accessible architecture consultancy but haven’t yet begun to research how to start that!

I would also like to develop some sort of curriculum to teach young people about the difficulties they may face in having children so that they may be better prepared to cope with the terrible challenges and grief this can bring. Avoiding unwanted pregnancy is essential but understanding the other side of the story is as well I believe.

A lot of it is finding the energy. From waking up to going to sleep every bit of my day is exhausting. I am physically handled from start to finish with a body that doesn’t want to move at all. I’m never really comfortable. I’m either lying on my back in bed or sitting in my powered chair. Both are adjustable and I am constantly adjusting the position of my back or legs to try and find the best position.

I have to grieve for everything I have lost safe in the knowledge there will be more loss around the corner. I have to find the energy to start new things. I have to find new things that bring joy and excitement into my life. I need to be making plans so that there is always something to look forward to.

Maybe my flat will sell and I will be able to look at housing options beyond the nursing home. It’s going to be very challenging but potentially exciting.

The biggest joy is that I have the most loving family and friends a disabled, single, childless, jobless 46-year-old could ever wish for and it is them that keep me going through the bleakest of times. There are times when I am unable to reach out to them but just knowing they are there keep me going and when I do reach out they carry me in their arms.

I don’t really know how I’m going to start again or what I’m going to do but I do know I have no choice. It’s pretty overwhelming and scary. Wish me luck!

My Money. Personal vs Political

Just over a year ago I began to really struggle with my health. I had worked full time as a teacher since being diagnosed with MS 17 years ago and was currently working as a non-teaching assistant head. It was my ideal job – mostly desk based without a teaching timetable but some contact with pupils, control of my diary, travel around the county and a great team.

I had considered giving up work almost every year since my diagnosis but I loved my job and needed the money. My neurologist and MS nurse always encouraged me to keep working and I am very proud that I did.

However, last year I was finding managing my health and work very challenging and spoke to my MS nurse about it. I really needed ‘permission’ to stop working. I always struggle to judge whether I am being lazy or sensible in slowing down. She laughed and told me I most definitely had permission to retire!

I was hugely relieved and also excited. I wanted to just spend some time living my life, travelling and doing travel writing from a disabled person’s perspective. I would get a lump sum from my pension and also decided to sell my flat as I knew it was no longer suitable for my needs due to the steps into it and a couple of steps inside it. That would give me a large pot of money to start a new life.

I went to speak to the Citizens Advice Bureau about my situation, my plans and to find out more about benefits and how they would be affected.

Maybe I was naive but the answers I was given completely floored me. As expected, I would be responsible for my care and accommodation costs once I had the pension lump sum and equity from my flat. However, what I wasn’t prepared for was to be told that I couldn’t spend any of my hard earned money on anything other than the basics. I have to live as if I am on benefits and anything else is considered a ‘deliberate deprivation of assets’ ie I am spending my money so that I can go on benefits.

I was, and still am absolutely devastated by this. I have worked so hard all of my life and the chance to stop, slow down and take a new direction was such an exciting thought. I can’t give my money to anyone, pay off debts, spend it on holidays – nothing. If I wasn’t disabled and decided to give up work and sell my flat I would be free to do whatever I want with my life. But, because of my disability and need of care I would be classed as cheating the system by living my life and enjoying my hard earned money.

My mental and physical health have suffered non-stop since receiving this news. On reflection I think I had a breakdown and I spiralled into depression. By the end of October I was in hospital as I was physically no longer able to cope. Grief for everything I had lost in my life overcame me.

Whilst in hospital I was told I shouldn’t return to my flat as it was (as I already knew) unsuitable for my needs. So, I became technically homeless and was assigned a social worker to look for emergency, temporary accommodation and a housing officer to look for a more permanent solution.

The social worker found me the nursing home that I am still living in and the housing officer is still trying to help me find alternatives. His first step was to get me on the social housing list but, as I am a homeowner there would have to be exceptional circumstances. My disability is an exceptional circumstance but, rather than put me on the social housing list I am in the crazy situation where I have got to try and buy a two bedroom, (I will need a live in carer) fully adapted flat.

Even on a share to buy scheme my pension lump sum and equity from my flat will not be enough to do this. However, I have to try and buy a flat to prove I can’t. There are very few two bed fully adapted flats in Brighton and Hove. I have yet to sell my flat so couldn’t even try and buy another if I wanted to. It has been 7 months and counting. I am a long, long way off being on the social housing list. Luckily, the nursing home is lovely but I would at least like to know whether there are alternatives.

I had a glimmer of hope last week when my ill-health retirement was approved. I asked whether my lump sum could be paid into a different account and was told yes, it could be. Finally – a chance to protect some of my money! However, they didn’t tell me that the account had to be in my name. I had a few days of excitement but again, those hopes were dashed.

I feel that working all of my life was a huge mistake. I have got myself in a place where I have too much money to be eligible for anything but not enough money to actually meet my needs. And my money not being my own to spend just breaks my heart. Because of the ‘deliberate deprivation of assets’ news I was given my health has suffered so badly that I can’t even do the things I was excited about doing once I’d given up work. I have taken one trip to London for the day since last October, rather than travelling the world which was my plan.

I can no longer drive and would need a hotel room with a full hoist and a lot of help and support from carers. None of that comes cheap or offers a lot of freedom.

So, I am trying to get myself to a place of resignation and acceptance. I fully accept that I am in a lucky position to have money but cannot let go of the fact that I would be in a better position, especially housing-wise if I didn’t have the money.

I am trying to be a little less worried about being caught spending my money – I’m not very good at breaking the rules! And I would hate to be classed as a benefit cheat. But, I think I’m going to go ahead and research fully supported holidays anyway.

I am also trying to think politically. My political views are that people are entitled to the best social care and full support from the government when they need it. I am relatively rich and need to shake the feeling that I should be entitled to spend my money as I wish, as well as on my care and accommodation. It just feels so unfair that I can’t do the same as an able-bodied person with my money. But of course, those with no money at all are more entitled to the support.

I want someone to turn around and say ‘Wow Nina! You worked for 17 years full time with MS, so have £50,000 of your money for yourself and the rest will go on your care and accommodation.’ But, that’s not going to happen. As it is, my money will probably last about two years before it is all gone and the state take over. All those years of work, pushing through the challenges that my MS brought, for nothing (financially).

I am allowed to have £23,000 of savings but what I haven’t asked yet, because I don’t want to hear the answer, is whether I can spend those savings and then top them up. I already know the answer.

I feel guilty for having the money and wanting some of it for myself – but I just can’t stop feeling angry however hard I try.

But I am trying.

Resignation and acceptance… Resignation and acceptance… Resignation and acceptance…

Overcoming MS?

This is a talk I gave at a wonderful evening on Wednesday 6th March for an event to mark International Women’s Day.

It was a collaboration between Youjuice and the Syndicate Kitchen hosted at Silo in Brighton.

Anita at Youjuice gave it the title Overcoming MS and I have added the question mark to it. It combines the themes of my other blogs and I have added the links to them at the end.

The talk
I feel sitting here like you can have me under the trade descriptions act as I’ve obviously not overcome MS! I’m in a wheelchair, pretty disabled and living in a nursing home.
However, it has been a long journey to get here and it’s a journey I’m still very much on and have recently been lucky enough to have Anita at Youjuice join me on this journey.
I’m going to be talking this evening entirely from personal experience. Despite having had MS for 17 years I am by no means an expert – in fact I have spent many of those 17 years actively choosing not to know all there is to know about MS – I think it’s been part of my coping strategy. But my brief description of it is that the body’s immune system attacks the myelin sheath which coats the nerves therefore affecting the brain and spinal cord. About 120,000 people in the UK have it and it affects three times as many women as men. Because different parts of the nerve coating is damaged in each person, everyone’s MS is different. There are constant developments in treatments but they are much more for the newly diagnosed and I do hold hope for the next generation that a cure or something close to that will be readily available.
Continuing with the trade description there is an extremely expert and credible program called Overcoming MS with capital letters which advocates diet, exercise and meditation with fantastic medical backup and amazing results. As you will hear from my story I try my best with all three but I’m still working on a regular, structured lifestyle.
So you would imagine a diagnosis of MS to be devastating but actually for a lot of people it’s a long, slow process to get the diagnosis and by the time it happens it’s either not too much of a surprise or a relief to have an explanation for the symptoms.
I had one acute episode on a ski trip from which I recovered fully and then two years of mild symptoms which eventually lead to the diagnosis. I was warned after the ski trip, in which my right leg stopped working from the knee down, that what was causing it could be the start of MS but it was two years before a diagnosis, three or four years later that I actually had symptoms that other people would notice and five years before I started using a walking stick.

Throughout these years I didn’t change my lifestyle at all. I didn’t make a secret of my MS but just didn’t let it stop me doing anything. I worked full time as a teacher (and I am only now applying for ill-health retirement having worked full time in teaching, latterly as an assistant head for the pupil referral units in West Sussex). I travelled, I partied, I lived a normal busy life.

I look back now and wonder whether, had I made different lifestyle choices would I be as disabled as I am now? I will talk in more detail about my mental health shortly, but self blame has played a big part in my condition. Part of the reason I carried on as normal was the fear of my partner leaving me because of me having MS. But then a big part of me also feels that my determination to carry on as normal allowed me to do just that.
I will never know whether, had I stopped working so much, understood more about MS and looked after myself more consciously from the beginning, things would have turned out differently. The positives over these years were that I I did do some exercise and I had been vegetarian since I was 18, although that doesn’t mean I had a particularly healthy diet!
There were two major breakthroughs in my exercise regime a few years ago. I spoke to my MS nurse in 2007 about wanting to meet other people with MS and she told me about the Sussex MS treatment centre in Southwick. There was an evening exercise class which I started attending and it was amazing to meet other (mostly women) with MS who weren’t in a wheelchair either. It did me a lot of good to finally open myself up to other people’s MS. There are also therapies on offer there such as massage, reflexology and acupuncture. A couple of years ago I stopped going there so much because I was struggling to fit it in around work but recently have returned and it remains an important place for well-being and support in my life.
The second breakthrough was the 2012 Paralympics. It was the first time I watched the Paralympics considering myself to be disabled and it blew my mind. I watched the opening ceremony and the different ways in which the competitors got themselves around the stadium. It looked so difficult and labourious for so many of the competitors yet they were Olympians. It really helped me feel better about myself as I was walking with a walking frame by this point.
And then there was Stephanie Millward – an Olympic swimmer with MS. I was a strong swimmer at school but it hadn’t crossed my mind that I might still be able to swim. That summer I joined the Marlins swimming club in Brighton and after a couple of weeks was swimming 40 lengths in 45 minutes – it was like I had never left the pool. My body remembered how to swim and it was the only thing I could do for more than a couple of minutes without having to stop and rest it was amazing! At this time I also decided to try a gluten-free diet and after a year I had lost over three stone in weight and needless to say I felt fantastic.
I’m going to digress a little bit into work here because it has played a huge part in my life. I taught German and French at secondary schools in Steyning and Crawley. I have been absolutely blessed during my working life to have never been treated differently because of my disability apart from positively. Senior management have always been amazing and supportive and my colleagues even more so. 
But it is the pupils who really amaze me. Once my disability was obvious I would start my first lesson with every new class with an explanation for why I was disabled and what this might mean for them in the classroom. I wouldn’t be coming around the tables quite so much as other teachers and I might fall over (and did spectacularly several times.) All I asked was that they would check I was alright before they started laughing! There were many comedy moments in my classroom because of my MS. I was also used by the science teachers as an example of neurological illnesses so the pupils felt a bit of ownership of their understanding of my condition.
Working in a pupil referral unit there have been a occasions when a pupil is having a major outburst and I come down the corridor. They pause the outburst, hold the door open for me to let me through and then carry on once I’m gone! It gets me every time. Not once in my career has a pupil used my disability as an insult towards me however angry they’ve been.
But now it’s time to fast forward. In 2015 despite my best efforts my partner left me single, childless and disabled at the age of 42. But it was the best thing that could’ve happened to me and I wish it had happened many years ago! Hindsight is a wonderful thing. I very quickly sought a counsellor. I had a lot of grief around my childlessness that I wanted to deal with. I was childless because my ex didn’t want children – not because I couldn’t or because of my MS. 
And this is where I began to vocalise my until then hidden feelings about the huge link between emotions, mental health and my MS. I was desperate to have children and the shock of having fallen in love with someone who didn’t want them had a huge impact on me. I firmly believe that the internalisation and suppression of that grief played a large part in the onset of my MS. There is of course nothing to prove this and plenty of people to discount this but I know how I feel. I had migraines from the age of 18 that were always linked to stress and in more recent years the same experience with nosebleeds. I am an incredibly positive person and don’t always show my grief and stress or I’m often not aware of the depth of it myself.
So much has happened in the last three years, more in the last year and even more in the last six months! Once my ex was gone things changed healthwise. I think my determination to cover it up as much as possible in front of him eventually had to stop and things have progressed more rapidly since then. 
Adult Social Care and Access To Work provided me with a budget to spend on personal assistants to help me at home and work with every day tasks and care. They have been and still are a huge part of my life. I have met the most diverse and wonderful people in my PAs and we have a very special relationship. They have ranged in age from 18 to over 60, some have come to Brighton from all over the world, none have any care qualifications and are all just amazing people. If you’re looking for an interesting and rewarding kind of work it’s a great thing to do. They enable me to live my life as independently as possible and I feel the relationship is mutually beneficial.
I saw two more counsellors over this time who helped me not only with the grief of a failed relationship and childlessness but also the grief associated with a progressive illness. The body and emotions work at a different pace. I have a routine and know exactly what I can and can’t do but then my physical disability progresses again and all of a sudden I’m not able to do what I could do the week before. This is incredibly stressful. My latest one is brushing my hair which this week I can no longer do. 
My blog is called Chaos in Slow Motion for that is how it feels to have MS. Your whole life is an attempt not to fall over, not to drop something, to manage what needs to be done such as opening a bottle or putting on your socks. It takes forever and it is exhausting! What you think it’s going to happen in your head and what your body actually does are two very different things. 
The grief of a progressive illness is different to the grief that gets somewhat easier to bear with time. This grief is one of constant loss. Just as you have managed to accept your situation you lose another part of your mobility and independence and the grieving starts again. It is without doubt the support of family, friends and the people around you that makes it manageable.
A couple of significant events happened shortly before I ended up in hospital for the first and second times, which firms my belief in the connection between the mental, emotional and physical. In the summer of 2017 I went back to Tokyo. The first time I’d been there was a trip of a lifetime with my then partner. It was an amazing trip but ended very messily on the last night with him out drinking all night. Getting through Narita airport with me having to be pushed in a wheelchair, 2 suitcases, large hand luggage, me sobbing and him completely wasted is not something I wish to repeat! A week later he ended our relationship. 
The trip back there was to reclaim for myself the city I had fallen in love with and it was an incredible and healing experience. There was a lot of grief to be healed. But a couple of weeks later I found myself unable to cope at home as my symptoms had progressed. I was in hospital for 11 days and slept and cried in equal measure. 
Then last year after a summer of depression which led to constant suicidal thoughts and self harm urges, for which I eventually took anti depressants I found a group called Gateway Women who support women through the grief of being childless not by choice. I discovered I wasn’t the only woman to not have had children because their partner didn’t want them – something I had felt huge shame and isolation about. 
There was a weekend workshop at the end of October which I signed up for and it really was life changing for me. To sit in a room with 15 other women who for all their own reasons shared my grief, shame and pain was just amazing. The weekend wrenched open the door of grief and recognition of what I had been through over the past 20 years in the most supportive and safe of environments but once again amongst all the tears was a very physical reaction.
I came home on the Sunday and by Wednesday evening was admitted to A&E as again I was no longer able to cope at home. My carers were unable to move me. It was actually a huge relief to be lying in a hospital bed! I was transferred to the Princess Royal in Haywards Heath and put on a five day IV course of massive steroids – the standard treatment for an MS relapse. It didn’t make much of a difference but once again I slept and cried in equal measure. I was absolutely exhausted. 
The physios and occupational therapists came to see me and quite quickly decided that my flat was no longer suitable for my needs. It was already on the market as I knew this was the case but it then meant I was technically homeless and ended up spending two months in hospital while a social worker tried to find me somewhere to live.
It still amazes me how quickly I went from working full time as an assistant head to being technically homeless in a hospital bed! I needed two carers to move me and a mechanical stand aid to transfer. A huge chapter of my life had come to an end. 
On December 20 I was found a bed in a nursing home in Saltdean. I moved in on December 21 so had Christmas in my own room! I am still living in the nursing home while the social housing officer looks for alternatives for me.
After Christmas my body was not a happy place. I felt full of drugs, institutional food, comfort and Christmas food and I was no longer exercising. It is still breaking my heart that I haven’t been in the pool since September and don’t know if I ever will. I desperately wanted to get everything out of my system and started looking at Youjuice as I had been getting salads and juices from there for a while. 
I attended a wonderful evening like this at Red Roaster and chatted to Anita at the end of the evening. We met a few days later and Anita took my health under her expert wing. I told her I felt toxic and she recommended the relaxed cleanse. And there began 10 days of the most delicious, healthy, nourishing natural foods and juices. I felt better almost immediately just knowing there was nothing processed going in. I also knew I couldn’t go back after 10 days to what I had been eating before.
Losing control of what I was eating was something I found very difficult about going into hospital. The hospital food wasn’t too bad and neither is the food at the nursing home, but it is very meat and two veg with a pudding, toast for breakfast and sandwiches for tea. Anita talked to me about it and I very much agree that it is such a shame that the places designed to help you recover from illnesses aren’t able to provide a modern, nutritional diet. It would be amazing to know what difference could be made to recovery times if patients were fed juices, plant based and fermented food during their stay. The staff at the nursing home are intrigued by my diet and jealous of it! They agree that it must be doing me so much good. 
So Anita began delivering juices and amazing food every couple of days. I am eating beautiful salads, breakfast protein bowls, kale chips, beetroot, butternut squash, spinach, celery, nut butter, cashew cheese – everything fresh, natural and delicious! Oh and not to mention the raw banoffee pie and raw chocolate! Plus I am addicted to kimchi and fermented cabbage. I told Anita I didn’t particularly love beetroot and her response was ‘I don’t care’ and then she proceeded to get me drinking a beetroot and garlic shot every day! And no, I still don’t like drinking beetroot and garlic but I do love the other immunity shots and the juices are packed with so much goodness and flavour.
Knowing I had control of my diet and the potential benefits of the ingredients gave me the confidence to talk to my doctor about stopping the antidepressants. They had really helped but I had felt for a while that I was in a much better place emotionally and he agreed that I should reduce the dose and then stop. It was definitely the right decision and I have had no recurrence of the dark feelings of depression I had been through. 
My emotional strength and physical resilience are definitely returning. The toxic feeling I had before I started eating Anita’s food was gone within a week or so and now I have no desire to eat anything processed. I have also started taking CBD oil which seems to be having a significant effect on the spasms I experience at night and when I’m tired. The carers have really noticed how much more flexible my body has been over the past few weeks and I know that that is down to what I’ve been putting in it.
The lack of exercise and reduction in my mobility means that I have put on about a stone in weight over the last year. I know I’m probably not going to get back to where I was before but it has really been getting me down. I shared this with Anita and she asked whether I would like to do a seven day juicing diet. I leapt at the chance! I was expecting to feel hungry all the time but actually it took a few days before I really started thinking a lot about food and even then I only craved kale chips! I must confess to only lasting six of the seven days, partly because I had a lunch date on day six.
I love the feeling of control and detox but my energy levels took a bit of a dip, probably due to my level of inactivity. When Anita turned up one day with a nut butter, cacao nib, date, banana, cinnamon and almond milk smoothie it was like heaven in the bottle! Juicing really heightens your tastebuds and awareness of texture. It’s a unique experience and one I’m very glad I took on. And most importantly it made me feel much better about myself! 
I broke my juicing diet at a reunion with the women I had met on the childless women weekend and the first thing I had was a glass of Prosecco! I did have the vegan options from the menu though!
So, as of this week I am eating again but having juices instead of at least one meal a day. I feel great. I have lost some weight but I’m trying to be less concerned by that than how I feel about myself. I have to keep reminding myself that I am still very much in the middle of perhaps one of the most difficult periods of my life so far.
Last week I sold the majority of the contents of my flat and went into work to finalise my ill-health retirement. On Friday this week I have to go back to hospital for two operations which are going to put me out of action for probably another month or so. I still have to decide whether to make the nursing home my permanent home with my somewhat crazy neighbours and amazing care, or look at the other options which might offer me more space and independence but neither are easy decisions. I am waiting for a referral to a psychotherapist and once I’m back on my feet (so to speak) I need to seriously research ways of building exercise back into my life and hopefully get back in the pool. I’ll never know what my body can do unless I try and do it!
I feel ready to look after myself and I’m so pleased and grateful I have been able to make a start with my diet. It is the best investment I have made in myself for a long time and would much rather have a good diet than prescription drugs wherever possible. There is the dual benefit of feeling better emotionally knowing you are eating and drinking well plus the nutritional benefit of the ingredients themselves to support good mental and physical health. Anita believed she could help me and I am convinced of this now.
I will continue to believe strongly in the link between my mental health and physical health and look after them both accordingly. Once my life has calmed down a bit I will make a concerted effort to build meditation into my life. At the moment it’s in the self blame box of something I should be doing but I’m not, but I will get there.
Overcoming MS is no different to overcoming any challenges in life. You just have to keep going, look after yourself and use all the support around you. You never realise how much you are loved until you ask for help. Back in October I couldn’t see the point in carrying on. All of my worst case scenarios were coming true. But six months on I am starting to rebuild my life, starting with my diet and talking to you has been a step on that journey so thank you very much for listening.