I would love to hear your stories

[scarlet hannah]

Hi!

My name is Scarlet and I am a year 12 student who was diagnosed with MS last October. Because I am in year 12 I have been offered the opportunity to complete an EPQ (extended project qualification) which is where I choose a topic that I am interested in to complete an independent project on. As MS has recently become a very big part of my life I thought that this would be the perfect opportunity to find out more about it.

I would love to hear your stories from your diagnosis to more recent. I am especially interested in all your thoughts and experiences with MS treatment and research and how it has impacted your prognosis and lifestyles.

 I would love to hear from anyone who is willing to share, this doesn't mean you need to have MS, it can just be someone you know who has it. I am still interested in your side of the story. Please also urge others you know to get into contact with me because I would love to talk/interview as many people as possible. If you would like to remain anonymous in my project that is absolutely fine, I will only use the information you give me if I have your consent.

[Nick]

Hi Scarlet,

I must say that it really will be beneficial for you to do such a project. An excellent idea!!  Firstly finding out more about your own MS is good, secondly becoming part of a larger group (with all their diverse experience) will put things in perspective. 

Anyway I have written quite a bit about my own experience, most, if not all is to be found on this site. 

I'm an old bloke only diagnosed at the age of 54, so suspect this is rather different from your own experiences, anyway we do all have something in common here and there is a wide range of age group who post here. You may also be able to get some more information about different forum groups from other people more knowledgeable than me. 

my stories:

https://ms-people.com/forum/topic/13770-the-requested-gumption/

https://ms-people.com/forum/topic/13484-another-way-of-looking-at-it/

 

You can find other stories from different people in the "Spotlight" section of the website

 

Do write yourself as your perceptions of your situation will change over time and it;s good to look back at things. My first bit of writing went like this:

 

Roller Coaster

 

A summers day, the sunshine streaming down through the tall glass windows. Walking into that calm, cool and still room I was wondering just why there always seemed to be two people in attendance. It just seemed so strange. A pause , a calm hush. I remember that hush, the still cool air. We sat down and my young lady doctor told me in hushed tones the results from the scan. 

 

That was it, simple. I was neither angry nor sad. The problem was I knew it was serious but I knew nothing, absolutely nothing about those two long words " Multiple Sclerosis". 

 

That was a year ago and it has taken me that whole long year to get where I am today. 

 

Yes it is a very big deal. It's unlike anything else you will ever come across. 

 

It's the "what happened next" bit that's interesting and important. Something no doctor can ever possibly tell you. That part is rather special and very, very difficult to understand. Its special because once you do understand it you will have achieved a great deal in managing your own MS.

 

MS effects everybody differently and at the present time there is no cure for MS . This is very scary. In fact I think you could describe it as like being on one of those giant roller coaster rides at the fair. This particular one is also pretty dodgy in its construction and lucky old you will be the one and only rider who will ever attempt its twisted tracks. 

 

That's it! You can read up in all the books and on the internet about exactly what's been happening to you. However YOU are the one already on this crazy one man ride and whatever you do or learn is all pretty academic ! 

 

So how is it that a year on I am sat here in a cafe drinking coffee and laughing with my friends? Some of this is due,not to any secret wonder drug, nor the routine of seeing a neurologist and being prescribed medicines. Some of it is simply down to me coming to an understanding of my own particular "roller coaster ride" 

 

You too will need to understand this and a few simple steps may be of great help. 

 

Accept the fact that you won't " get over" MS. MS is a "Condition" Conditions are something you "manage" 

 

Do not attempt this ride "alone". You need people , some of the people you undoubtedly need are people who already live with MS. 

 

Understand that your life will change. How it changes will partly depend on what you do NOW.

 

I have found it a big step. I like many of you have done the classic. I tried to fight it. 

 

Its a big thing! I also knew best and didn't want to "get involved" with "anything like that" .

 

By God that first turn of the roller coaster sent me hurtling down at breakneck speed into the abyss! About halfway down I got lucky , I got introduced to a lady who had been living with MS for nine years. You know what , for a second that ride stood stock still. Talking to her for just five minutes changed the ride ! I carried on still falling down those rusty, rattling tracks. Now I had something to cling on to ... Like coming up for air . A big breath in and all of a sudden we are heading up into the sky and the light and looking around I could see for miles. Trouble is I'm still on board and what goes up must come down , right? I can still see for miles but I'm scrabbling about thinking "Oh No!, where the hell is this thing going next". Clank, clank, clank........slower and slower now as the ride nears the top. Just time to think. "Its just a ride right?" My new friend laughs at me , then she's gone , that can't be right can it? Over the top and hurtling into the depths . This time I'm still scared, sure , but I have a little smile across my face . "Dam cheek her laughing at me like that" I think, what's next? 

 

Well what's next is that you get used to the ride. Nobody said you can't live on a roller coaster, your very own one at that! Thing is, its YOU that takes on the scary bits , you can make the humps feel a little less steep. More nice straight flat bits! You find out where you are, who you are and what you CAN still do. 

 

Just like those experienced roller coaster people who sit in the front seats. Who knows what you might end up doing next!

 

Anyway Hope you liked it.

 

Nick