Two years after her mum was diagnosed with MS, Sian Spence received the same diagnosis. Here, Sian shares her journey and what's she learnt along the way.
The purpose of me writing this is mainly for myself, but as time has passed, I have decided to share my story in the hope that maybe it will help people, even if it helps just one person. The best and most simple advice I could give anyone is, that on that day of diagnosis, no matter how hard you might think life is going to get, it really does get easier.
So, let us rewind back to the year 2014. For me, this is where my journey began. At the beginning of the year, I had some stressful life changing decisions to make and I had been experiencing ‘tingling’ in my fingers, I also had this strange sensation when I bent my head forward and lifted it back up, I felt quite dizzy. I went to the doctors, but this was put down to nerve damage from a recent car accident I had. However, that was soon forgotten, or at least put to the back of my mind. I have now learnt that this is a symptom of MS.
That year I also dealt with some difficult news, after some bouts of illness, lots of investigations and appointments, my mum was diagnosed with relapsing remitting MS.
Sitting in that room with my mum and brother, the world really stood still. So many thoughts going through my head. Is she going to die? What even is MS? Can I get it? I really did not have the first clue about what was going on, or what I could possibly do to help her. However, a few years later I looked back on that day, and in a strange way, it helped me to cope with my own diagnosis.
Fast forward to 2016, the year I got married. Again, another stressful time! But don’t get me wrong, I also really enjoyed the planning process. There were lots of stressful things to think about, who sits where? Will everyone I care about and love actually come? Will the weather be good? You know silly questions. But it all built up. I got a little anxious about it all, but the day was amazing. At the beginning of the year, I was experiencing lots of headaches which my wife and I put down to the wedding preparation and planning. Again, something I’ve now learnt is quite common with MS. I went to the doctors as it went on for quite a number of weeks and I was given Amitriptyline. This didn’t really seem to work. But I took it, because well the doctor told me to! Then one evening, Sara, my wife, was in the bath, and I went up in the loft. Whilst I was at the top of ladder, I felt dizzy, and next thing I know, I am on the floor.
What followed next, was quite comical (I must laugh about things, else I’ll cry! Laughter really is the best medicine). We lived in the top flat of a three-storey building. Sara called 999 and her dad to come watch the boys. Sara asked Finley (8) to read a book to me, to keep everyone calm while we waited, then sent Jake (10) down to flag down the ambulance. When they arrived, the paramedics were tasked with safely getting me down the stairs. Goes without saying that they did an amazing job, getting me down without hurting me. At the hospital, they did a few tests, scans etc. but they could not find anything wrong. I guess they didn’t really know what they were looking for. All I really experienced was a fuzzy head and tingly hands.
Later in June 2016, I was experiencing more headaches, but the pain began to limit just to my right eye and was hurting whenever I looked in a different direction. I went to have my eyes tested at the advice of my wife, but nothing was really found, except a dark patch, which I was told was nothing to worry about. Following that I woke up on a Monday morning, I rubbed my eyes, and then just rubbed my left eye. It was then I realised I could not see out of my right eye. To begin with, I did not do much. I mean I was scared, but I didn’t really know what to do or say. I managed to get a telephone call appointment later on with the doctor. During this time, our niece Parker (3 months) was in Southampton hospital with her own health issues. So, I had gone to my brother’s house to gather some bits and bobs for him and his family with my mum. Whilst I was there, I simply said to mum “Hey Mum, I can’t see out of my right eye, is that normal?” to which she responded in horror and sat with me whilst I had my telephone appointment. Whilst on the phone, the doctor decided it was best that I came in. Later on when I walked into the doctors office, I wasn’t scared or worried. In fact, I found the whole things quite funny. Again, my humour as well as my wife’s has really saved me. The doctor got me to read from the eye chart on the wall, I could read it almost perfectly. He then told me to cover my left eye and said, “read it now”. I did, well I tried, but this time. I couldn’t see a single thing. The doctor kept saying “are you sure you can’t see anything” I got a bit annoyed at this point. I literally could not see anything when I covered my left eye.
So, what followed next, all happened quickly. My dad took me to the eye specialist at our County hospital. I saw a very nice lady, who looked into my eye and told me it was ‘Optic Neuritis’…. I mean what the hell is that! Everyone around me had done some Googling, including me. And the biggest result was MS. So whilst with the ophthalmologist, my Dad said “her Mum has MS” At the time I was like “Dad shut up!” but I’m glad he did, because in a way I was fast tracked through the system. A few days later I was back at the same hospital having my very first MRI! What a scary experience that was.
Then it was July 2016. D-Day. Judgment Day. Worst Day of my life etc. whatever you want to call it. It really was the day my life changed forever.
Sara and I made the 45-minute journey to the Poole Hospital. We sat in the waiting room, not really saying much to each other. We didn’t have too. We’d talked about what might happen for weeks before hand. We’d also discussed on many occasions what the diagnosis might be, the main one, was of course MS. But a brain tumour was thrown in the mix. I was honestly, really scared. I don’t get scared often, but I was. However, if it wasn’t for my mum’s diagnosis two years before, I wouldn’t have got the answers so quickly. So, as I was sitting there which felt like an eternity, I was getting more and more nervous, then came two words, I really wasn’t ready for “Mrs Spence”. It was my turn.
Then came the words ‘you have MS’. I sat there, looking down at my feet and cried. He explained what would happen next, and then we left. We left the room and I felt a bit angry at the man who seemed to very casually deliver me life changing news. I kept thinking ‘oh he was so rude’ ‘oh he could have been a bit nicer, rather than sitting there watching me cry like a baby’ but you know what looking back on it, it wasn’t his fault. He was doing his job. What more did I want him to do, jump over the desk and hug me? I was only angry because he was the poor guy that had to deliver me that diagnosis.
I felt so overwhelmed, we walked round the corner, sat down and just cried together. I’m so grateful that I wasn’t alone, and that Sara was there by my side. Then we had to make the 45-minute journey home, we didn’t say much to each other, I think Sara cried more than I did. Sara dropped me at my Mums as she unfortunately had to go to work after that. You have to remember that these experiences effect your partner too, they too have questions, worries and fears. You definitely have to learn to work together as a team. My head was spinning. Still filled with the same questions that I had when mum was diagnosed. Will I die? How will I cope? Will I be able to walk? What is going to happen to me? For me it was very much a struggle of ‘what if’? and not knowing what is going to happen. I’ve always been a planner and like to know exactly what is going to happen and when. Of course, as soon I walked in, she hugged me. We talked and shared experiences. This is why for me, in a strange way, it was nice that mum had been diagnosed before me. It had made it easier for me. Easier to understand in some ways.
Sara and I discussed how to tell her children, my step children and that it was best to tell them sooner rather than later. I didn’t want to make it a big deal, but I wanted them to understand. So, I sat them down and told them, the best way that I could. Then I was faced with questions. Questions I couldn’t really answer. But the one that will always stay with me was, a question I had asked myself. Are you going to die? Now MS doesn’t kill you, but it does slowly break down your nervous system. Trying to explain this myself so soon was a bit difficult, so Sara simplified it for them calling them spots on the brain. But I am pleased to say that four years on, they understand a lot more and how it can affect me.
So four years on from the day of diagnosis, things have changed. I finally gave up smoking, a habit I had for many years although I still need to exercise more and eat better, I find it hard to find the motivation and I am having problems with my legs at the moment. I now really do live each day as it comes. I spent too much time worrying about everything that it changed my mood and personality. When the truth is, I have no idea what is going to happen in the future no-one does. My memory and concentration have worsened and I do find that difficult to deal with at times, but Sara and I have learnt to laugh about it and not take it too seriously and that helps me.
To anyone that has been diagnosed recently, please don’t spend too much time worrying. Spend time on yourself, talk to people. Don’t push people away. I’m really lucky that I have an amazing support around me, an incredible wife, who never misses an appointment and does so much for me. My wonderful family. The amazing NHS - has always looked after me and I have an amazing nurse who makes me feel comfortable when we meet, always listens to me and does the right thing, really does go above and beyond.
We all have good days and bad days, but I’ve definitely learnt not to dwell on those bad days. I still very much hate change and not knowing what’s going to happen and this lock down has taken a lot of energy from me, from dealing with all the new measures in place and learning to understand them, also battling my way round a busy supermarket. But I’m learning every day. I am learning how change can be incredibly hard for me, but with patience and understanding, I can get there. Change is physically and mentally exhausting, which I do feel is something people don’t understand when it comes to MS. How really fatigued you can feel, even at the smallest of things. I’m sure people think I’m being silly most the time. For example if plans have changed, originally we are supposed to meet at 8, but someone changes it to 7 then that can really mess with me. Sometimes though, I don’t even know I’m feeling overwhelmed or exhausted, until Sara points this out. It’s really important for me to take a step back, and I’m so lucky that I have Sara there to help me.
I’ve also learnt not to really care what people think and to put myself first. I recently had a splint fitted to my right leg. I absolutely hated it at first, but Sara suggested giving him a name. Which really helped. Now I’m not sure what I’d do without him. I cared too much about what strangers would think, but honestly it really doesn’t bother me now. If it helps me, then why should I care. But it’s just breaking that barrier, it’s not easy, but with the right attitude, enough support anyone can do it. Although I have come a long way, my journey isn’t over yet, but I won’t let MS slow me down.
Since being diagnosed I have followed the MS Trust via social media. I’ve found it a very helpful platform and quickly realised I wasn’t the only one. The MS Trust provides so much information that I have found helpful, and I love hearing other people’s stories and realising I’m not alone. I chose to do MS: Play because I like to game in my spare time. I wanted to prove to myself that I could still “game for hours” like I did when I was younger. I wanted to give back to the MS trust, as they have done so much for me. I plan to do MS: Play every year.
