Hello you lot, it's me, Vicky. 

Thank you for clicking on my JustGiving page where I am hoping to raise money for the MS Trust. I'm gaming for MS:PLAY to help The MS Trust ensure that the 130,000 people living with MS in the UK today are not facing MS alone.

Multiple Sclerosis is a progressive and incurable neurological autoimmune disease where the immune system mistakenly attacks the myelin sheath that protects the nerves. This damages the nerves and disrupts messages travelling along them, causing a wide range of symptoms and disability. 

I'll be doing what I usually do (prosecco, crisps & not a whole lot else) over at www.twitch.tv/benamation around 7:30pm BST on Monday the 30th May 2022 where my lovely friend and creative director Ben is helping me with this event. 

Oh yes, I will also be attempting to game. 

My story

I was admitted to the neurology ward of the Royal Hallamshire hospital in Sheffield on January 26th 2021 with what I now know is called INO (Internuclear ophthalmoplegia). I had woken up with the inability to see properly in my right eye a couple of days earlier, and constant double vision. I couldn't walk properly. I had an odd combination of buzzing palms and numb finger tips that had slowly been getting worse for a few months, and moving my neck sent an electric shock down to my thighs. All in all, not a good time. 

I had been under investigation since October 2021, when I was told that my fingertip numbness and palm buzzing was double carpal tunnel syndrome. After I developed (what I know now as) Lhermitte's sign in my neck, I was referred to an emergency physiotherapist (in person - what a treat!). I am so grateful to her as she took one look at me and said 'You need an MRI, immediately.' Urgent MRI of cervical spine requested, results came back 2 days later - 1 very large lesion and one smaller. The GP still refused to say it was MS as there are many things that mimic it (and I was given a list of terrifying 'could-be's') and referred me to the neurology department. Now, bear in mind this is at the HEIGHT of covid, we had just entered another lockdown, the NHS were overwhelmed, many resources and healthcare workers were being redistributed to help the pandemic, and things were looking dicey. I knew I was in for a long wait, and likely not be able to see anyone face to face. 

My body had other ideas. I had my first documented relapse on Jan 24th. 

Fast forward through the next 16 months - vaccines! more vaccines! Finally allowed to start treatment (Ocrevus)! Vile! Horrible new daily symptoms! Completely overwhelmed! Mental health took a nose dive! Got to rock bottom! Convinced I was dying alone and as a burden with no quality of life! Friends and family supporting! New connections made! Sun started shining! Stayed in bed all day! Found joy in games again! Dropped everything I picked up! Grieved! Still grieving! Drank a lot of prosecco! Cried and laughed! Googled MS and terrified myself! Laughed again! Woke up and hoped I could still walk! Reached out to old friends! Overanalysed every pain and twinge! Fell over more times than is strictly necessary! Found a new perspective! Thought about the future and felt utter dread! Learned about new medication hopes! 

Continued living! 

Why the MS Trust?

None of the positivity I felt would have been possible without the MS Trust, who provide funding to train MS Specialist Nurses. These nurses are the ones that call me back when I leave a panicked and tearful answerphone message, the ones who take the time to be patient and kind in light of incredibly difficult and heartbreaking circumstances. My nurses have the know-how and reassure me when I feel like everything is falling apart. They can make medication recommendations to my GP to help manage my symptoms, make referrals to other health care professionals, or simply be an ear. 

The MS Trust also provide free resources and publications for people affected by MS. They produced a very straightforward and compassionate guide to MS that I found invaluable, and their website has basically everything you want to know. Sadly, this is entirely funded by charitable donations with no funding from the Government or NHS. The MS Trust also seeks out areas where there are not enough MS Specialist Nurses and work with the NHS to fund and support nurses to be introduced into these areas. This means that less people will be left to manage MS without this vital service. 

From the MS Trust

An MS diagnosis can be devastating. You may feel lost, alone and uncertain of the future. The MS Trust is here for the 130 people who get diagnosed with MS each week. We are here on day one, and every day after. 

P.S. World MS Day is also on my birthday *eyeroll*