My MS story. Please don’t read this if you are easily upset or sensitive. I am not trying to scare anyone but share my honest experiences. I was first diagnosed with MS when I was just about to turn 23. I remember going to the opticians as my eye had been playing up, at first I thought maybe I have heat stroke like I had seen a friend have previously and it was affecting my vision. After the gentleman looked in my eye he told me that they were both perfectly healthy. He asked me had I any genetic diseases in my family such as diabetes or multiple sclerosis? That was it. The moment I knew. I called my aunt and said I think I have MS. The next day I was in the eye hospital and they were confirming my worst nightmare. They told me I had optic neuritis and that it had a high chance of fully recovering. I broke down in tears with the nurse, who said what’s wrong? I said, you don’t realise what this means to me! Both my parents had been diagnosed with MS when I was a child and had sadly passed away in my teens, my father Kevin when I was 13 and my mother Joanna when I was 18. As children both my sister and I had coped reasonably well with the desperate situation that unfolded as we grew up. We have vivid memories of the issues and arguments, carers and nursing home and eventually the disablement and loss of mental functions in our mothers case, but had still managed to hold our lives together with the help of our mothers family. Anyway I digress. With this back drop, my natural inclination when I was diagnosed was panic. Everyone to panic stations. My family are particularly good at this. I remember distinctly asking everyone at the time please don’t leave me? My initial reaction was of the final outcome, sat alone in a wheelchair waiting to die with no one coming to visit you and loosing all you friends and family. I was desperate, please don’t leave me. After this initial desperation. I entered a phase of my life of strategic analysis. By my calculations I had worst case scenario maybe 3 years of walking left and maybe 6 to 7 years to live. I entered an extremely short term-ism mindset. I thought alright I need to make the most of this, forget the future. No point investing in pensions because I will be dead by then. I still feel that way to a degree if I am honest though I am starting to think slightly more medium term to account for the possibility I may still be walking and need something to do! Anyway my solution was, I need to see the world. Australia, New Zealand, Thailand, Japan and Fiji and about 5 grand later and I was back again in the uk. I made a lot of mistakes in this period, for example doing a pgce to earn money and not doing a PhD what I really wanted to do, but then I thought a PhDs is 4 years, I’m not going to last that long! The next phase was trying to come to terms with symptoms. I would sometimes spend 30 mins staring at my leg watching. it spasm. I think the spasming has been the worst symptom so far. It is benign, and has no effect on my life, it is not painful but just a little strange. The problem I have with it is it is a constant reminder everyday that I have ms as it never goes. Something twitches every couple of minutes every day for my whole life. If I am out and about I don’t really notice but as soon as I sit or lie down still then it becomes really apparent. During a relapse of symptoms, there is a combination of pretending it isn’t happening, trying to act as normal and pull together but also the biggest fear in the back of my mind is what if this doesn’t get better this time, what if this is it and I will have this symptom for the rest of my life. This is particularly severe when it is a new symptom I have not felt before. At the moment my whole right leg and buttocks has gone numb. The irony is I just spent 600pounds on a new bike and I am thinking, am I ever going to get to ride this! Sometimes I think surviving is the name of the game. Happiness is a bonus, but true happiness comes from the fact your still getting up in the morning and getting by. I don’t know if that’s true but it comforts me none the less. 3 years on since my optic neuritis. I can still walk and do most things. I do get tired more easily and get cold very easily, my circulation isn’t good. I have been on interferon for 2 years and tbh the injections are getting me down a bit. I dread doing them so it means I don’t look forward to 50 % of my days. But they aren’t killing me and there is a chance they are keeping me walking! You never know. I don’t really think doctors know much about ms, it’s such a mysterious disease. It don’t think it will be cured in my lifetime. You don’t have to be a scientist to know that any issue with the central nervous system is extremely hard to fix. But I suppose hope can keep some people going and anything is possible. It is an amazingly complicated thing dealing with a diagnosis like ms. It affects your whole life unfortunately. Nothing will go back to the way it was. It affects your relationships, your outlook, your motivation and interests, not even mentioning the clinical impacts. Ultimately when it comes down to it, when shit hits the fan and your in your own thoughts in bed at night, it is down to you alone. My nan always said in reality we are all alone. Only you know really 100% how you feel. People can support you in certain ways, remove some obstacles such as money problems, add to you life care, security, friendship, love. They can help you with these. But no one can have ms for you. Like frodo and his ring in lord of the rings, that is your burden to bear and only you can deal with the impacts it has on your psychology and emotions. The progress of your disease, I believe is not in your hands. Many people try and convince you otherwise, eating vegetables and drinking white tea will cure you! Oh simple then great. I personally feel that if a group of world leading neuros don’t recommend these things then I won’t take them as fact. Remember, however your mindset to a certain degree you do have control over. That is something you can cope with and have control. Be aware that external factors have an influence on your mindset and you may need to alter these too if possible. So if eating vegetables and drinking White make you feel better then why not! I think my new resolution is not to let my ms get in the way of something. Resting is needed sometimes, but not too much. It probably is better to be busy and get a good nights sleep after. I think I am guilty to much of saying, no I don’t want to do that as I my ms is playing up. Expectation Is also a really hard thing to balance. Before I was diagnosed I thought I could do anything if I put my mind to it. Afterwards I thought I don’t deserve to have any ambitions because there would be no point as they would be unfulfilled. There is a constant tricky balance between taking care of ones health and resting but not letting ms hold you back. It is extremely tricky line to tread. Balance in life has never been my strong point tbf. I do think that since I have been diagnosed I have become a bit more selfish and defensive. It is natural when you feel backed into a corner to defend yourself and I kinda feel that way at the moment. I also have no faith in god anymore. I always thought before I was diagnosed that I was a good person. I always tried to do what was right and felt that with my childhood I had had my fair share of bad luck. When I got my diagnosis I felt like there cannot be a god because how could he do this to me after all I had been through? I feel in a way smited by god as the worst thing in my eyes as a 22 year old that could ever happen to me has just happened, and I did not feel I deserved the punishment. So I don’t believe there is a god, and if there is then he is certainly not a just one. I worry for my mental health in the future. My problem is my images of my parents decline in ms are so vivid. I can remember the sounds of old people in nursing homes screaming for help, the smell of people who can no longer help themselves function and the sights of people confined to one room. I know this is really negative but this is what I experienced and sometimes when something happens with my ms this is the future i jump to conclude. At the moment I have coping mechanisms, but if I delve further into this reality I worry whether I have the strength inside of me to carry on and cope. Something inside of you has to say, I want a future, whatever it is like and want to hack this out to the end. Many people with ms sadly loose this and I can see why people enter this dark place. I have been there myself sat in the bath tub with extension cables and a toaster, not going through with it thankfully. sometimes I suppose you have to stop worrying and just live for today. Death comes to us all sooner or later and most people will have to deal with this consequence sooner or later. When I think back to that day it saddens me. What if I had killed myself there and then. It would be such an unnecessary waste of life. All the things I have done since then, you would not believe. I have had so many great memories. It makes you think about all the potential life and memories stolen due to depression and extreme mental illness. It is one of the hardest illnesses to deal with probably. One piece of advice that is important. Do not take relationships for granted. My sister can’t cope with my ms, understandably. I could quite easily push her away by talking about it all the time. But it is better to keep the relationship positive. That is one advantage of seeing my parents dealing with ms. It has taught me in a sense the affect it can have on people around you. sympathy is temporary. You can’t believe that just because you have ms your problems are more important than other peoples, even if they are. Because they never see it that way. To anyone, except in some cases the unconditional love of a mother or grandmother, their problems are always the most important problems to themselves. If you try to force you problems are more important on someone else then You will drive them away. People will still leave you, even though you have ms. Trust me as many people left my parents towards the end of their lives. Relationships are still a give and take thing, both partners and friends. Anyway I don’t have much more to say now except sometimes talking things through is the best thing you can do, that is why I am writing this right now. Get it off your chest, I am a big advocate of counselling. Remember the only thing you can really control in this life when it comes to ms is you mindset and how you approach each situation. Use this power to its full advantage
Lighter than you for sharing your story. It choked me and made me realise a few things. It was hard to read but very thought provoking. You are very strong xxxx
Hello lighter I found your stories very moving and I’m so sorry you have had to experience so much loss . It makes perfect sense to me that when you were diagnosed that you would have felt forsaken by god. I had the experience of feeling forsaken by God (as the child) but for different reasons but basically it all comes down to the same thing: a way to explain unbearable suffering to ourselves. I don’t really know what to say other than thank you for reminding me that this is a journey that at times take us to very painful places, but a journey it is, and you seem to have acquired considerable wisdom about the power each one of us has to choose how we experience it by our mindset. It doesn’t mean it doesn’t hurt but we are capable of becoming stronger in ourselves. Take care X Sarah
Hi Lighter, i was so moved by your post (in tears here) im glad things arnt as bad for you as you first thought, so sad that you lost your Mum and Dad to MS…Lots of love Mac
Thanks so much for the responses guys. Was having a bad moment and felt like I needed to get it off my chest somehow. This forum is a great place for people to speak and everyone is so supportive, it is fantastic. it is a journey you are right Sarah, of ups and downs. I suppose I just need to make the most of all the positives in life. Some of my ups are I am engaged to a beautiful, kind girl, I have travelled the world, have a loving family and I have now applied to some PhDs so fingers crossed will another positive soon. So i have lots to be thankful for too. Sometimes **** happens! But together people are always stronger and get us through to the good times 
thanks again guys for the support xx