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I am sharing my personal MS journey this MS Awareness Week, because I want other people suffering with this disease to know that they’re not alone in their experiences. There is plenty of hope, laughter and joy to be found alongside MS, and I hope that through sharing my story, I can help others find it. Early Symptoms I first noticed something wasn’t quite right when I began experiencing fatigue. I would struggle to complete tasks that were previously very normal for me; like mowing the grass and cleaning the car. Next, came leg pain on my left-hand side. I also began tripping up often, and once, while helping somebody push-start their car, I fell flat on my face as the car pulled away. These experiences were very out of character for me. My leg pain and tripping up continued to worsen over time, causing me to become increasingly anxious about what this could mean for my health. I was thinking, ‘could this be a trapped nerve… or even a brain tumour?’. My family insisted that I consult a doctor at this time. Diagnosis My GP initially diagnosed me with Varicose Veins, and I was simply prescribed stockings. I knew this wasn’t quite right, so I insisted on a second opinion. Looking back, I now really encourage others to advocate for their own health, and to never be afraid to ask for a second opinion. I then spent 4 nights in hospital receiving various tests, including a lumbar puncture, which was a long needle inserted in my spine to collect a sample of my cerebrospinal fluid. This sounds a lot scarier than it was; the procedure was actually very bearable, and I would encourage anybody having this procedure to try not to be afraid. I may sound crazy right now, but I actually had a good time in hospital. I met so many amazing people, including the person staying in the bed next to me: Colin Russel. Colin became a dear friend and helped me more than he ever knew… 8th October 2014 was the day I was finally diagnosed with Primary Progressive Multiple Sclerosis. I felt like I had been hit with a sledgehammer. I had so many questions, including ‘am I going to die?’. My consultant told me, no, I wasn’t going to die, but I would need to make many adjustments for my future. I was then simply told to go downstairs, pick up some booklets on MS, read up, and that I will see my consultant again in 6 months. The tears and tantrums followed shortly after. I wondered, ‘why me?’, and ‘what could I have done differently to prevent this?’. I began investigating HSCT (haematopoietic stem cell transplantation), among other treatments. This was my first mistake, as the sudden overload of information was incredibly difficult to process. Looking back, I would say take it slowly, and be wary of ‘Doctor Google’, as the internet can be unreliable. I managed to find a reliable source of information through MS Society and MS-UK. I highly recommend that others turn to these great charities, and do not feel afraid to ask questions. Denial For the first 2 years of my MS journey, I believed that I had been misdiagnosed, and experienced many more tears and tantrums. However, in hindsight, I now feel lucky to have been diagnosed with MS when I did. This is because my dear friend Colin also received a life-changing diagnosis of Motor Neuron Disease at this time. This brought us together and fostered an incredibly kind and supportive friendship that I will always treasure. Colin sadly passed away 2 years after he was diagnosed. I was with him on the day he passed, alongside his amazing family. This time was full of tears. Losing my friend was incredibly painful, and I really do miss him; however, I am relieved he is no longer suffering. Acceptance Acceptance came in a strange way. I was sitting outside my consultant’s office, waiting for an appointment. Across the corridor was a young lady who was called in before me. After about 30 minutes, an MS nurse came out and apologised, stating that my appointment will be late. I knew what was happening here; the young lady was being told some life-changing news. When she came out of the office, the nurses were carrying her. She was devastated. I remember this time for me so vividly. Was she also simply told to pick us some booklets and come back in 6 months too? This event was the catalyst that changed the course of my MS journey forever. From this moment, I decided to dedicate my time to helping others with the disease. Yes, I have MS, but MS does not have me, and I want to empower others to feel this way. Supporting Others (and myself) To achieve my goal of helping others, I decided to visit my local MS Centre, and began volunteering there as an operator for their hyperbaric oxygen therapy chamber. I’ve since gone on to become a ‘befriending volunteer’ with MS Society, an ‘MS Buddy’ with Shift.ms, a trustee for MS Action at the Marjorie Collins Centre, and a fundraiser for MS-UK. My volunteering has been the most impactful thing I’ve done to help me come to terms with my MS. I’ve found ways to uplift and support others who share my disease, which in turn, uplifts and supports me immensely. My MS diagnosis has allowed me to meet some amazing people, and has made me feel humble, and lucky to be part of a brilliant and resilient community. I am grateful for every person who has helped me get through this. To help manage my MS, I currently have Shiatsu, Bowen Therapy and Oxygen Therapy, and exercise at the gym and swimming pool twice a week. I feel lucky that I am still able to walk (albeit only for short distances) and have managed to keep the ever-present MS Fatigue at bay. I still have tears and tantrums, but they are a lot less prevalent than they were 11 years ago. The Future My personal goal for the future is to keep fighting and never give up. I see MS as a bully that tries to make me do things I do not wish to do. I hate bullies and will always strive to fight and rise against them. One of the most powerful ways I fight the MS bully, is by uplifting and supporting others who share my disease, which in turn, uplifts and supports me. Although it may have felt like it at first, my MS journey was certainly not the end for me; but the start of a new beginning. I, like so many others, found people who I thought were friends started to avoid me. I put this down to people not understanding MS or how to react when around me. This was difficult to accept at first; however, reach out to the MS community. I have met many new friends since my diagnosis, without having MS I would never have met. None of my achievements would have been possible without my amazing family and friends who support me in all my endeavors; whether I’m helping to clean my local MS Centre, or walking up skyscrapers to raise money for MS charities. The one person who has supported me most through all of the ‘tears and tantrums’, and empowered me to achieve everything I have, is my wife Lynn. Thank you, Lynn, for all you do xxxx Thank you for reading about my MS journey, and I hope you find it helpful for your own journey. Steve