Topic / Blog

Keep on inching

I wanted to share my experiences with you, because I felt it would be valuable if things aren’t going as well as you had hoped.

Katy

My name is Katy Deacon, I am a mother of two young, lively children and a wife to a wonderful man. I am also a chartered engineer, at one point being at the top of my industry and earning the title of young woman engineer of the year 2007.

I was diagnosed with MS in 2012, however my life had been changing for some time before that. I would like to share with you my experiences, because it may be useful for you and it will be very cathartic for me.

In the summer of 2011, I was out running with my husband when I felt my bowel give way. I had to duck into some bushes with tremendous embarrassment. My husband had to run back home, to pick up the car and come back to rescue me. I dashed from those bushes to the car with utter embarrassment, not understanding what was happening to me. Over the following weeks as I was walking into work, my bowel released again. So I had to clean myself up whilst being at work. To mitigate the chances of people finding out, I ended up starting work at 7 o’clock in the morning so I had time to clean myself up before everyone else arrived. I felt this warranted a trip to the GP, however the GP diagnosed irritable bowel syndrome and told me to look at my diet. 

In December of that year, my husband and I went to Kettlewell for our wedding anniversary. Kettlewell is around an hour away from our house, so it should be possible to get to Kettlewell without needing to stop to visit the toilet. However after a lovely weekend, we were returning home and needed to stop for the toilet nine times in one hour journey. My bladder had also failed.This time the GP suggested I had a UTI, however on further testing there was no UTI.

Over the Christmas break my walking became unsteady. And in January I went to the doctors with my husband for support, because things were happening that just weren’t reasonable. On reflection, my GP decided that a conversation with a neurologist was needed. So I was booked in to an urgent appointment three months later.

After many tests, of which you will understand the complexity, I was diagnosed with aggressive and rapidly evolving MS and offered steroids. My world turned on its head, and I struggled to learn how to cope.

My GP insisted I took some time off work, having found out that I was still working well for taking my steroids. During my time off I found Overcoming Multiple Sclerosis, and things became easier.

I have now been diagnosed for 7 1/2 years. I have had a second child, moved house, changed jobs and re-designed my house to make it wheelchair accessible. My mobility is now limited to using a wheelchair. My bladder is now controlled using an indwelling catheter. I control my bowel by colonic irrigation every evening. I suffer from temperature intolerance, requiring my environment to always be lower than 20° C.

During this summer I have really struggled with my mental health. My engineering mindset had always been to physically solve my problems and keep going. After seven years, I had run out of physical solutions, and I needed to recognise that there were other, emotional and behavioural changes that I needed to realise. I think that it’s very hard to cope with all of the changes that need to be made within an MS body, because the mental health element, particularly in my case, sometimes comes 2nd to the physical. 

One of the things I find really difficult with the OMS community is that everybody seems to be doing very well. When I am really struggling, it doesn’t help me to read about how well everybody else is doing. That sounds incredibly negative and I apologise if anybody feels cross by those comments, but sometimes I feel it’s useful to be honest.

So this is why I wanted to share with you, the incredibly difficult and challenging situations I’ve had to deal with. But, I also wanted to share with you the fact that it is possible to keep going. To keep positive. To keep your quality of life high.

OMS has provided me with the foundations upon which to live my life, in a positive, healthy and active way. I carry out all of the OMS pillars every day. And whilst somebody looking at me from the outside may look in pity because I am in a wheelchair, have a bag on my leg and I generally need somebody with me to help carry all my gear, they are not looking hard enough.

The reality is, I am an active member of my family, I put my children to bed, I read them stories, I garden with them. I am a senior Manager in my organisation, I am the data protection officer which requires intense and constant cognitive ability. I am a loving wife, and we go out regularly for date night, the theatre and for meals.

My wheelchair, stairlift, leg bag and cooling fan are all tools in my toolkit to keep my quality of life high. They are not negative indicators of a poor quality of life. They are actually proud and positive ways for me to continue my high quality of life. The OMS principals are the foundation to all of this. 

I have to carry out 40 minutes of physiotherapy in the morning and 40 minutes of physiotherapy in an evening. I do these exercises mindfully which helps me to keep my perspective, maintain my focus and improve my mental health.

I follow the diet, laid down by OMS, and have managed to have my own meal created on the menu of my favourite restaurant, which is fantastic.

I adapted the outside space at my house, to enable me to have a large raised bed to grow vegetables. This enables me to fulfil my love of gardening whilst also growing my own food.

The next thing on the list is to recruit a support worker to support me in my job. As I work full time, this person will help me move all my equipment between rooms, take notes for me in meetings and support me throughout my day. This support worker will be paid for by the access to work scheme run by the government. This is not something my employer has to pay for.

This week, I have travelled down to South Croydon, a journey of six hours but thanks to my leg bag it wasn’t a problem at all. I was travelling to speak at a national conference outlining the improvements I have made to my organisation and share with national colleagues the benefits that these improvements have made. It is always interesting to speak at conferences in a wheelchair, it makes people see those with disabilities a little differently, I hope. Anyway my presentation went down very well, and I’ve been asked back again next year.

I hope that this short extract of my 7 1/2 years with MS has provided a different perspective on how it’s possible to live a high-quality life by following the OMS principles. Those of you reading this with fear of your diagnosis, I am with you. However I also wanted to share that it is possible, and OMS helps incredibly, to realise your life goals even though you carry around the MS label every minute of every day.

Watch: Katy's story of hope

Personal story
Hide commentsShow comments

Richard Buttress (not verified) (not verified)

Thank you so much for a brave and moving article. You sum up much of how I feel about having ms and how OMS helps me to cope and remain positive

Rosie (not verified) (not verified)

So grateful for your blog Katy. I’m in a similar situation with my MS and reading others stories and how well they’re doing made me feel like ‘an outsider ‘.

Kath Silvestre (not verified) (not verified)

Hi that was really good to read as, as you say it is quite difficult to read of nothing but success stories. I was diagnosed 4 years ago and follow the OMS protocol. My main problem is cognitive disfunction & tiredness. 2 years ago I had to give up my job as a teacher as it is all too difficult for my brain to cope with, let alone the physical demands on being in charge of 30 teenagers. I haven’t yet read about anyone else struggling to maintain cognitive function & would love to do so should anyone read this who is in the same situation as me. Thank you.

Andrea (not verified) (not verified)

Hi Kath,
I too had to give up working as a mainstream primary teacher. The stress of being newly trained, in new schools and not understanding my own condition all led to being so fatigued at the end of a school day I couldn't even put sentences together. I left for 2 years and worked as a TA (which I didnt like!)
I'm now in my 6th year working as a peripatetic support teacher for children with sen. This job took a while to find then took a while for me to get a post. Now I adapt my days and have strategies to cope with the fatigue and cognitive load. I'd be happy to share these with you if that would be useful.

Kate McQueeney (not verified) (not verified)

Hi Kath, I was a lawyer but had to be 'medically' retired because of cognitive and memory issues. That was 5 years after diagnosis. Now another 5 years on I have had a stroke and a brain aneurysm repair and my cognitive issues are worse. However I am trying to learn new things and constantly keep my brain active to try to form new pathways to replace dead ones but it is very difficult.

Linda Williams (not verified) (not verified)

Katy, possibly one of the most motivational articles I have read for some time. I heartily congratulate you on this honest account, and wish you well in your endeavours. Thank you

Andrew lorrain-smith (not verified) (not verified)

Thanks for the inspirational honesty, Katy. If the mind stays as positive as yours, you'll keep moving forward, giving the body no option but to follow - dragging its various support mechanisms behind it. Well done Katy and well done OMS!

Philip (not verified) (not verified)

Katy hi,
I too suffer with mental health, undoubtedly brought on by this dreadful condition.
I like you cope quite well day to day. However my mood can plunge in half an hour, making me not want to be here.
It worries me immensely.
Keep up the good work, you are truly inspiring.

David (not verified) (not verified)

Hi Katy
Thanks for sharing your story. As inspiring as it is to hear OMS stories that are full of completed marathons and wonderful recoveries, I have never felt as moved reading an OMS as I did reading yours. I think your story is truly inspirational and I am so grateful to your for sharing.

Rachel Cuthbertson (not verified) (not verified)

Katy, great to hear your story and that you are doing so well. My diagnosis was similar to yours and I too use a wheelchair for most of my mobility. I have a Science degree and suspect my approach to trying to overcome the difficulties I face is similar to yours. I was diagnosed 5 years earlier than you and my disease seems to be in a holding pattern and has been for the past 6 years, a huge bonus considering the speed of progress initially. Thank you for sharing your story it means a great deal.

faith Holland (not verified) (not verified)

Wonderful to hear from you Katy . We were at Ammerdown in 2014 and I found you inspirational then and your recent blog is even more inspirational.
I've fallen out of love with OMS recently, especially since we went to Edinburgh in the summer. My hopes after the retreat were too high and I now see unrealistic. Although recovery was what we were led to believe was possible. I keep to the programme but decline is on on going and steady, although NOTHING compared to what you are going through
I'm delighted that you are keeping on with the programme. and I wish you, Scott and the children all the very best for the future
Love to you all
from
Faith xxxx