Why am I doing this blog?

Why am I here, why am I writing a blog about my experiences with a disease that is known as the unknown disease where nothing really makes sense, every day is different, every person has different symptoms, experiences and different effects of MS, the reason I am here doing this blog is for many reasons, the first is to show the power of talking, being honest and open, in the early stages of my symptoms where I had no idea what was happening to me, my body or my mind I told my family, I told my boss, so when it came to support I got it because they were aware of what was going on with me, I remember I was supposed to be doing a presentation in front of a team of engineers which I was getting anxious about, not sleeping because of stress and worry over things going on with my body which I spoke to my boss about and he got another member of the team to cover for me. With the numerous doctors and hospital appointments my mum and dad either attended or drove me to them to give support and to take away the worry of getting to them, I told my friends after the very first indication it maybe MS to not only give them a heads up but to also take away the worry of “what will they think” if the diagnosis is me of having MS, because you do, your faced with a life changing medical situation where your entering into the unknown and the first thing you think is “what are other people going to think about me” which you can’t get away from because your heads all over the place and your conscious thinking kicks in, talking and being open and honest takes away all this unnecessary worry and another great example of this is when I attended 1-2-1 CBT (cognitive behavioural therapy) sessions through my work who set up after I asked for help with my mental health concerns, this was brilliant and I learnt so much through fight or flight, different techniques on how to handle difficult situations, not to jump in and loads more, I went and sat with a complete stranger opened up about everything, home life, relationships, work, MS, and to be honest this did keep me on the straight and narrow and without this support I honestly do think I would be in a not so good place now, don’t let things build up talk to someone, I find it good to express myself in how I’m feeling and what I’m going through, even if this is just on the phone, through a text message or even writing it on a computer and publishing it to the whole world, the thing is my MS nurse told me it could take up to 2 years to get fully over the fact that I have been diagnosed with MS but I’m 5 months on since my full proper diagnosis of MS and I think I’m there already for the simple fact is I’ve learnt about it as much as I can, I have attended MS coffee meetings, I’ve attended a MS gym and spoke to the people that run it, I’ve carried on with my CBT and even attended a mental health awareness seminar but the main turning point I experienced is when I done 3 press releases for the MS Society and dealt directly with Sam at the press office there and they got published on their Facebook and main internet site but I didn’t tell anyone or show what I had done, for this I don’t know why if it was the effect of the just been diagnosed syndrome or I didn’t mind sharing this with the whole world just not with my family or friends, but one sleepless night I just decided to do it and released them onto my Facebook profile, and do you know what, I fell straight asleep and woke up to a continuous bleep on my phone where I was getting likes, supporting and well done messages, private messages of support and open hearted story’s about what they had been going through about different medical situations, the response I got was phenomenal and I sighed with closure and happiness as whatever was holding me back was eliminated and I could get on with my fight back. The worst thing I could of possibly done at the start was put in internet search engines things relating to MS, my head was down my confidence was at an all-time low and I was at the start of my grieving of the fact that I’ve got MS, well forget about all of this you can’t predict MS, no one can predict anyone’s future but you can talk, you can talk to people that also have MS, you can talk to MS charity’s hotlines who are absolutely brilliant, you can visit MS charity’s and discuss any issues and concerns, you can read other MS peoples experiences and even BLOGS!!!!! Because this helped me massively knowing there are other people out there in the same scenario and it’s not just me that has this or that or thinking this or worrying about that, there is an estimated 100,000 people just in England who have MS out there in the same scenario who are left to fight this alone, there is not enough support for MS patients, there is not enough MS nurses, we have some top MS charity’s in this country who are taking the brunt of this responsibility as there isn’t anywhere else to turn, the NHS has said 100 people get diagnosed with MS in England every week, so if I can write something or share an experience that helps someone else who is going through the same scenario or worry I am doing my part in the MS fightback.


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