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.
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.