Becky’s Story: Living with MS

In 2008 whilst living in Leeds I woke up one Sunday morning with my left leg feeling very heavy and numb, initially I thought I had just slept awkwardly. After a couple of weeks things hadn’t improved so I telephoned NHS 111 who advised me to make an emergency appointment with my GP.  By this time my left arm had also started to feel numb.  I made the appointment and saw a  doctor who initially was a little abrupt at me being at an emergency appointment but I guess outwardly I looked extremely healthy.  After examining me and carrying out a few tests she told me that she thought I might have Multiple Sclerosis.  If I’m honest, I wasn’t entirely sure what MS was but a diagnosis of this magnitude, delivered fairly brutally, was pretty terrifying.  I was told to get to Leeds General Infirmary straight away, where a neurologist would be waiting for me.   On arrival I had various tests and was booked in for an MRI scan a couple of months later.  Eventually I was called back for the MRI results, by which time my symptoms had all but cleared, but was then told by a neurologist that all of the results were consistent with my having relapsing and remitting MS. Initially I was fairly blasé, I had very few symptoms and despite friends and family telling me how sorry they were I wasn’t overly concerned.

I then went onto develop a problem with my eyes, my vision was perfect but the MS was making it feel as if things were moving all of the time, it’s hard to explain as it’s a very strange feeling, this has never cleared up.  As I began to realise the seriousness of MS I became scared and started to have panic attacks, the first was while I was driving, It was an awful feeling, I thought I was going to die. I became anxious to the point that I hated even going to the supermarket, on train journeys and struggled socialising; I only felt safe being at home.  Incredibly the MS remained fairly stable for three years, which I think was largely due to moving to Northamptonshire and forming a solid base. The only issue really, was the anxiety that I felt.

After going through a previous ectopic pregnancy and a miscarriage my daughter, Isla, was born in April 2011.  I was looked after by Northampton General Hospital who were obviously aware of my having MS, they were terrific and monitored me closely. I loved being pregnant, I felt well throughout and finished with a beautiful healthy baby girl.  Towards the end of 2012 I went abroad for a winter break to Gran Canaria, the flight out was very early in the morning and with preparing for the holiday and getting up so early I was pretty exhausted by the time we boarded the plane.  We arrived to sunshine, checked in and looked around what was a fabulous hotel.  I decided to text my parents to let them know we had arrived safely but I had trouble texting, my left hand and arm felt heavy and wouldn’t move normally.  I thought it was strange but took no notice.  Over the next 24 hours my left leg started to feel heavy and was dragging when walking, I just put it down to tiredness.  After 48 Hours I was completely paralysed down my left side.  We called for a doctor who thought I’d had a stroke as the left side of my face had dropped as well so I was taken to hospital by ambulance.  After many scans it was realised that I hadn’t had a stroke it was the MS. I was given a course of steroids to take and went back to the hotel. Naively, I thought the steroids would work fairly quickly and decided we would stay until the end of the holiday.  I was in a wheelchair unable to do anything for myself; My parents flew out but I was ultimately totally dependant upon my then husband.  Isla was only 18 months old at the time so I couldn’t even help look after her which broke my heart. I was still in a wheelchair when we returned home. 

On my return, I saw a neurologist at Northampton General who explained that there was a very large lesion on my brain, one of the largest he had seen, which was very uncommon. The lesion had caused me to have the severe relapse.  He decided to refer me to The John Radcliffe Hospital in Oxford where I initially saw Dr Jacqueline Palace, Consultant Neurologist, who specialises in unusual cases and has a reputation which is quite exceptional.  She recommended that I was placed under the care of one of her colleagues Professor Gabe De Luca, Consultant Neurologist.  I was recommended to begin taking a disease-modifying drug which would hopefully help reduce the amount of relapses.  I was nervous of this as it meant that I would have to inject myself every day. It was also recommended that I begin regular physiotherapy treatment to try to restore some mobility, as I was still wheelchair bound.  Despite having been told at Northampton General that it was unlikely I would be able to walk for at least a year or maybe never again, I began to get feeling back in my left leg and arm after a couple of months.  It seems this was down to the steroids reducing the lesion on my brain combined with regular physiotherapy. I began to walk again; I cannot put into words how amazing that felt; It was a moment that I will never forget.

My physiotherapist, who visited me at home, suggested that attending The Reach for Health Centre might be good for me.  I imagined it as being a ‘gym’, full of fit people and a place I could not have faced in my mindset at that time.   My family were keen for me to give it a try so I made an appointment, mainly to keep them happy.  I was nervous and  conscious of my laboured walking and also that I had to use a walking aid.  I had an assessment and was told that a number of people with MS attended the Centre and that they were confident that the team could improve my condition.  When I was shown around I was surprised by the friendliness and relaxed atmosphere, the feeling of compassion and care was so evident. The mixture of age and the varied health conditions of those attending took away any feelings of self-consciousness. I started attending once a week in 2013 and now love it so much that I try to come in five times a week.

Physically I am now so much stronger, my walking has improved immensely and I walk without a walking aid.  I believe that exercise has to be good for you no matter what condition your health is in and can only help you to overcome the worst of any serious illness and help contribute to keeping it at bay.  I also generally feel stronger mentally, I do have some really low days but coming to the Centre gives me such a lift, the care, friendliness and good humour has such a positive effect and I always leave in a much better place mentally. I regularly remind myself of how lucky I am to be able to walk, a luxury I didn’t have for a while and something that most of us take for granted.

My hopes; For my MS to remain stable. I want to keep up my exercise, I am certain that it is helping and definitely making me physically and mentally stronger.  

My fears; My greatest fear is that the MS hits hard again and I lose my mobility, I am absolutely petrified of losing my mobility and independence.

 I naturally have bad days as anyone does but I truly believe that with positive mental determination and a belief that you can overcome your illness, this contributes hugely to keeping well.

The Reach for Health Centre is the best and only place to come to if you need physical health rehabilitation.  It is just totally unique, I wish that every town could have a similar Centre as so many people benefit.  It has made such a huge change to my life, I have made so many friends, some of whom will be life long friends.  It is truly such a special place full of amazing and inspirational people. The team are just incredible…they make such a difference to so many lives and always show kindness, compassion and support to every single person that walks through the door.  I am now proud to be a trustee of The Reach for Health Centre. I will do anything I can to help The Reach for Health Centre; I truly believe that it has saved me in a way and made my life so much better!