Keep on inching

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