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.

https://www.dailymail.co.uk/health/article-7317591/Why-multiple-sclerosis-sufferer-Nina-left-rot-old-peoples-home-just-46.html

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!

https://www.aligolds.com/

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.

https://www.youjuice.co.uk/

https://twitter.com/syndicate_ktchn?lang=en

http://www.silobrighton.com/

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. 

https://ninaisinhere.home.blog/2019/02/23/youjuice-juice-cleanse/

https://ninaisinhere.home.blog/2019/02/12/the-cbd-oil-voyage-of-discovery/

https://ninaisinhere.home.blog/2019/01/28/im-a-childless-mother/

https://ninaisinhere.home.blog/2019/02/10/being-your-own-valentine-%f0%9f%92%9a/

https://ninaisinhere.home.blog/2019/01/20/youjuice-relaxed-cleanse/

Youjuice Juice Cleanse

Day zero

https://www.youjuice.co.uk/

I have been nourished by Anita’s food and juices for about a month now and am hooked! The 10 day relaxed cleanse ended up not stopping.

https://ninaisinhere.home.blog/2019/01/20/youjuice-relaxed-cleanse/

However, I am still struggling to lose weight which is getting me down. Being in a wheelchair and unable to exercise easily and regularly is extremely frustrating. The normal recommended calorie intake isn’t suitable for my level of inactivity.

I’m going back to hospital in under two weeks for a colostomy and surgical catheter operation and I really want to make the most of controlling my diet before that is taken away from me again for a while.

My life is in a much better place and after discussions with my doctor I have stopped antidepressants completely now which has certainly brought back a wider range of emotions (which is what I was ready and hoping for) but I’m finding it quite exhausting.

Anita isn’t concerned by my weight but wants me to feel good about myself and so tomorrow I begin a seven day juicing diet and I can’t wait! She delivered two day’s worth this evening and the fridge is full of goodness. Let the juicing begin!

I did down a sneaky L1 juice (cucumber, alfalfa sprouts, spinach, parsley, apple, lemon, broccoli and ginger) before bed – I couldn’t wait!

Day one

I slept late today as I’m hoping lots of sleep is going to bring my energy levels back up a bit. I had only eaten an apple and had the L1 juice yesterday evening so managed a good fast as well. I didn’t feel hungry at all so really enjoyed a refreshing clementine, ginger, orange, lemon and echinacea shot and L1 juice for late breakfast.

However, I have spent the last month always looking forward to the next meal because it was some of Anita’s food so I’m having to re-adjust my brain a bit not to think about food. The good news is that eating Youjuice plant-based food has stopped me craving food and getting really hungry. I just eat because it’s a meal time and the food is amazing.

I didn’t start feeling hungry until about 2pm but then fell asleep until four and had an R2 juice (beetroot, apple, carrot, ginger, lemon, celery and parsley) when I woke up. The hunger pangs had gone again and I finished my day at 9pm with a clementine shot and a large bottle of L2 juice (spirulina, apple, pineapple, kale, celery, lemon, cucumber and avocado).

A much-needed very lazy day and I haven’t really missed food at all. I have, however really enjoyed the feeling of being super healthy!

Day two

I still wasn’t feeling hungry when I woke up so was really happy with a sunshine breakfast of a clementine shot and an R3 juice (carrot, apple, ginger and lemon).

Lunch was an R2 juice. My stomach rumbles every so often but it doesn’t feel particularly odd not having eaten. It’s that satisfying rumbling you get when you’re on a diet and you know it means you’re cutting down! A friend gave me a tip of chewing the juice before swallowing and it’s great!

I had an R2 juice at lunchtime and then the wonderful Anita arrived mid afternoon with a joyful delivery! She fed me an R3 juice immediately, then restocked my fridge with a generous amount of juices for the next couple of days and instructions to drink plenty.

As a major treat I have two bottles of almond milk, nut butter, cacao nib, cinnamon, maca root, date and banana smoothie. And yes, it is as amazing as it sounds! I had one of them plus a ginger, lemon and apple shot with an R3 juice.

I am really enjoying juicing so far!

Day three

I finally felt hungry today! Not until later in the day but by 6 o’clock I really was hungry.

I started the day with a large bottle of L1 and a ginger shot. At lunchtime I had a small bottle of R3 and L1.

I went off piste a bit this afternoon at Redroaster coffee shop and had a coconut, pineapple, chilli and ginger juice which was lovely but tasted quite sweet!

I was so happy there was another bottle of the smoothie in the fridge as it really satisfied my hunger pangs. I had half of it along with a large R2 juice. I must admit I did struggle to drink the juice. I wasn’t really feeling the beetroot this evening!

But all in all feeling good. My energy levels are picking up again and I love the fact that I haven’t eaten for three days now. It feels good…

Day four

I started the day with a large bottle of L2 and a ginger shot. I really noticed how densely packed with fruit and veg the L2 juice is this morning. My tastebuds are quite heightened and I was very aware of the texture of the juice. I think it might be the spirulina.

I missed food for the first time today – I wasn’t really hungry as such but really fancied Anita’s crunchy kale chips. I can’t stop thinking about them!

I had a small L2 juice and the other half of the smoothie for lunch and then a large L2 and a large R2 later on.

I must confess to feeling a little juiced out by the end of the day today but along with that still feeling good about just juicing.

Day five

A bit of background to the week I’m having this week; I am selling my flat and don’t know yet where I’m going to be living. I am therefore selling pretty much everything from my flat and spent yesterday receiving and responding to messages from Facebook Marketplace for over 12 hours! My friend was in the flat receiving buyers and sending them on the way with my belongings. It was successful but absolutely exhausting!

Today, I went back to my place of work to meet my line manager to discuss my ill-health retirement. It was nice to be back and see some of my colleagues, but it was another day of goodbyes and clearing my desk.

By the time I got back I was absolutely exhausted. Quite a couple of days! But beyond the exhaustion, the juicing has given me a buzz and a real feelgood factor. Physically it has been an interesting week as well. I started taking CBD oil a couple of weeks ago and there has been a real reduction in the spasms, particularly at night. I really feel that juicing and CBD are doing me good. My body is calmer and stronger.

https://ninaisinhere.home.blog/2019/02/12/the-cbd-oil-voyage-of-discovery/

Today I had a pomegranate, ginger, apple, lemongrass and beetroot shot plus an R3 juice (carrot, apple, ginger and lemon) first thing.

In the middle of the day I had an R0 juice (carrot, beetroot, coriander, red pepper, cucumber, lemon and Himalayan salt). Medicine as much as a meal!

In the evening I had a C2 juice (butternut squash, chilli, turmeric, orange and grapefruit), which really picked me up after my exhausting couple of days.

Day six

I started the day with an absolutely delicious R3 juice and a pomegranate shot. But I knew that I was going out for lunch with friends and had made the decision to eat some food. I did feel guilty that I hadn’t made seven days of juicing but also had a feeling that my body was ready for food again.

I chose a spring vegetable soup at lunch and was immediately disappointed that it was nowhere near as good as any of Anita’s soups so didn’t enjoy it very much. I was very full very quickly. But I didn’t have any dramatic reaction to food again. Just a tinge of regret that the juicing was over.

Anita brought me another delivery this evening and once again have a fridge full of joy! Still plenty of juices but a breakfast bowl and couple of salads. Plus amazing smoothies! Oh, and as it’s Friday Anita brought me raw pizza which was gorgeous.

So, today after the breakfast juices I have had soup, a bottle of number three smoothie and a generous slice of raw pizza. I’m stuffed!

So, my juicing diet is over and I am so pleased I did it! I have realised how nutritious juices are and how the body can adjust to not eating food. It felt good to have the control and lose the dependence on constantly thinking about what to eat next.

I have had no ill effects from stopping the antidepressants and my mood and self-esteem are good. The juices can only have helped.

I feel it was an important part of my detox journey and I feel differently again about food. I am going to really enjoy eating again but I’m even more set on vegan, natural, raw food making up the majority of my diet.

My tastebuds are more refined and I am more in tune to what my body needs. Chatting to Anita this evening she was definitely right not to have put me on a juice diet from the start and she also explained because of my lack of mobility my body processes food around the body in a less efficient way, which makes perfect sense and would explain some of my lack of energy.

The clean, healthy feeling of detox can’t be beaten. I wanted to lose some weight and feel better about myself. I’m not even really interested in whether I’ve lost weight. I continue to feel stronger physically and emotionally and my amazing Youjuice journey continues 💚

The CBD Oil Voyage of Discovery

I have had MS for 17 years and I’m now unable to sit, stand or walk unaided. I use a powered wheelchair to get around and a stand aid plus 2 carers to for transfers.

I take 10 mg of baclofen in the morning, 10 mg at lunchtime then at night I take 30 mg of baclofen, 8 mg of tizanidine and 10 mg of amitriptyline all for spasms and nerve pain.

The tizanidine knocks me out and helps me get to sleep although I still have broken sleep. From early evening to mid morning my spasms are worse. If I wake up in the night the first thing that happens is a spasm goes all through my body from my toes to my hips, sending my legs into rigidity. One or both of my feet wobble when this happens as well. My hands clench and my arms spasm into full stretch with pain through my left shoulder.

My left hand is permanently clenched and my right hand is rapidly following suit. I don’t have much pain when resting but my left shoulder is very painful when moved and the range is very restricted.

When I am transferred out of bed in the morning the carers bend my knees and they snapped into a painful spasm around my knees which then eases off.

I also suffered depression in the summer and was prescribed sertraline 50mg which helped considerably. I have been on a lower dose for a week and have another week of taking it every other day and I will then stop taking it. My circumstances have changed so much in that I no longer work and I am living in a nursing home. This has greatly reduced my stress and the depression has lifted.

I saw my MS nurse last week and discussed the possibility of CBD oil with her. She told me she couldn’t recommend I take it but had heard nothing but positive about it from other patients and certainly wouldn’t recommend I didn’t take it!

So, I have bought CBD oil 250 mg oral drops of 2.75%. I have decided to start with five drops three times a day.

Day one

I have just taken my first dose but discovered it is impossible to tell how many drops went in my mouth! But anyway, I’ve started so I’m happy with that. I would be over the moon if the spasms reduced and I felt less pain in my shoulder. I am also hoping for a balanced, positive mood. If I could cross my fingers I would!

I’ve had a very sedentary day today (aka lazy!), but my body has felt very relaxed.

Emotionally it has been quite challenging and a few tears have been shed so I’m not sure it’s the best day to judge on that level.

I’ve given up trying to count drops so I’m just squirting oil from the dropper in a most unmeasured way! I’ve taken 3 doses.

Looking forward to seeing how I sleep tonight….

Day two

I didn’t sleep brilliantly last night and still had quite a few spasms. However, I do feel that my body has been more relaxed throughout the day and it’s now early evening and I haven’t had spasms yet which is great.

Although my emotions have been very up-and-down today I have been feeling quite strong and positive and definitely not falling back into depression.

So far, so good…

Day three

Sleep last night was still broken but not in a stressful way and I still felt quite rested today.

Emotionally much more stable today and I am feeling generally calm and relaxed.

I did some exercise this afternoon for the first time in a long time which felt great. I used the physio bike which pedals for you, so nothing too strenuous!

I really do think my spasms are reducing in intensity and frequency. My left hand definitely feels less tense. Really pleased so far.

Day four

Sleep was much the same last night – still broken, but I do feel the spasms are reducing although definitely not gone.

I had a crazy busy day today and was out and about all day but I had energy and my body felt mostly comfortable.

I had a gentle shiatsu massage today, which on top of yesterday’s exercise is helping me feel good about my body.

Day five

Thankfully, today was a lazy day. I had quite a lot of spasms this morning but the pain in my shoulder is reduced.

I have managed to keep the routine of taking the drops three times a day and there are definitely no ill side-effects.

Emotionally, I’m feeling good and physically fine too. I slept for nearly 2 hours this afternoon – I was tired! I had some crazy dreams though…

Day seven

My mood has been good for the past couple of days and I feel very relaxed. However the spasms in the night and the morning have been really quite bad. I have now run out of the CBD oil so have ordered a new one of higher strength as I feel I need it.

Day eight

My new 5% Hemp Bros oil arrived today. I had 3/4 dropper at lunchtime and another before bed. It tastes great (cinnamon) and I’m glad to be back on it to see how I feel. It’s a bigger bottle too so I won’t run out so quickly. Let’s see…

Day eleven

I’ve been taking the oil twice a day – morning and evening. I must confess to not feeling great. The spasms at night are really quite bad. I’m waking up at three, four, five, six and the second I open my eyes I am in painful spasm.

I’m also pretty exhausted during the day. I have a feeling coming off the antidepressants and everything going on with my life (selling and clearing my flat, starting the process of ill-health retirement amongst other things) is catching up with me.

I think from tomorrow I’m going to try three times a day and see how that goes.

Day thirteen

So, last night I only woke up once and didn’t suffer painful spasms. Could it be down to the CBD oil? I am sticking with three doses a day and keeping my fingers crossed…

Day fifteen

Well, I am in no doubt that the CBD oil is helping reduce my spasms. I have slept better and my spasms are fewer and less painful.

I have decided to try capsules rather than oil from a dropper as I’m finding the taste a bit much. The Hemp Bros oil does have a good cinnamon flavour but I’m finding even that a bit overpowering. I have ordered some superstrength capsules from Healthspan. They’re vegan which is fantastic.

I actually missed a dose today because I was out and about. Hopefully I won’t notice too much tonight.

Day sixteen

The missed dose did seem to make a difference. I didn’t sleep as well and had more spasms again which supports what I thought about the oil working.

10 days later

The super strength capsules from Healthspan arrived (15mg) and I was so much happier just swallowing a capsule.

However, the spasms at night and in the morning night have been getting worse. The second I open my eyes my body goes into a huge, painful spasm. Yesterday morning I decided I’d had enough. My sleep was broken and stressful. I had a little bit of the Hemp Bros oil left so took another dose of that. I couldn’t believe it but instantly felt my body relax.

I went straight back online to buy some more but discovered it was no longer available! I messaged them and they replied saying a competitor has accused them of marketing it as CBD oil on Amazon (which they are not and which everybody else is doing the same – calling it hemp oil for Amazon).

So, I went to Holland and Barrett and bought 2 30ml bottles of 5% CBD oil (it was on half price special offer!). I took another dose before bed and have just had a spasm free night and woken up this morning again without spasms. It doesn’t have a flavour – just a slight herbal taste. Hopefully I’m not going to find that overpowering at all.

Plus, my low mood brought on by the cancellation of a long awaited operation lifted yesterday evening as well.

So I can absolutely conclude that I need 5% oil from a dropper for it to work. And I am over the moon. I will be taking it three times a day from now on. It’s taken a bit of experimentation but I really am blown away by the results.

Being your own Valentine 💚

At this time of year when the focus is on whether or not we are loved enough for cards and roses, should we not be checking in on ourselves first?

My need for self-care actually came from having to surrender to full physical care. It took away the control I had over my ability to exercise and decide what I was going to eat and drink.

The hospital, the nursing home and my MS were in charge of my medication and diet after my symptoms had progressed.

Once I had my strength back I felt very strongly that I wanted that control back and I knew that looking after myself meant sorting out my body the best I could!

I felt toxic. Post-hospital and post-Christmas was a combination I wanted out of my system. I was full of drugs, institutional meals and comfort foods. My body was craving fresh, unprocessed food. I was piling on the weight and did not feel good about myself at all. I turned to Anita at Youjuice for help.

https://www.youjuice.co.uk/

https://ninaisinhere.home.blog/2019/01/20/youjuice-relaxed-cleanse/

A month later and I’m feeling great! That decision to take back control and invite someone who understands the effects and benefits of particular foods on the gut, immune system and mental health have helped me rediscover what it means to look after myself and be looked after. Good food, fresh air and surrounding myself with friends and family is the love I need.

I may be single this Valentine’s day but I am stronger, losing weight, coming off the antidepressants and finding energy for the world and people around me.

In the words of the indomitable RuPaul; ‘If you can’t love yourself, how in the hell you gonna love somebody else?’

‘Can I get an amen?’

And if you’re concerned that self-love involves self-denial think again! Raw banoffee pie is about as indulgent as it gets. Happy Valentine’s Day 💚