Lights, Cameras, MS Action

Friday was a very eventful day. I took a very late lunch at work and popped across the road to the Royal Victoria Infirmary (RVI). I now work less than 5 minutes walk from the hospital, which is super handy for any of my appointments or sample giving. 

Carmel, one of my fantastic MS Nurses had asked me a while ago if I would help with a MS Society project. We would be filming a video for the National GP website about what it is like to be diagnosed with MS and the different stages you can go through in the process of diagnosis and how long this can take. I was honoured to be asked to be involved and really excited to have the opportunity to contribute to something which will hopefully benefit others going through this time and those doctors who are supporting them. 

After getting myself lost on hospital grounds (this is me after all), I found my way to the room where I was to wait to be filmed. Here I finally met Cheryl, a lovely lady who I have spoken to so many times when ringing to make appointments with my MS Nurses or to ask them a question about a possible symptom. It was great to be able to put a face to the voice! 

After a little chat, I was asked in to sit amongst the bright lights, have a lapel mic put on and get ready to be interviewed by Dr Duddy one of the MS consultants at the RVI. 

I was of course like a fly and whilst sitting there could not stop looking at the big, bright light next to me. A little ironic really when we started talking about the bright light symptom that had occurred with my eyes that led to my diagnosis! 

As I repeated the various symptoms and situations that led to my diagnosis, I realised how many times I had said I just laughed that off, I probably should have taken it more seriously. The heat and shooting pain down my left leg was not shingles. Triple vision so I couldn’t see the heights of the curbs was not an inner ear problem. Losing the feeling in my left leg was not me sleeping on it funny. Bright lights in my eyes was not a migraine. Luckily these were all temporary symptoms but the temporary nature had meant I hadn’t taken them as seriously as I should and my GPs didn’t put them altogether either to see what they really had meant. 

Hopefully my story along with the others filmed will help GPs to see the importance of bringing ‘random’ and ‘separate’ incidents together to see the whole picture and encourage them to refer their patient to the MS experts to get the answer whatever it may be. 

On Thursday evening I had received a random call from the Evening Chronicle (my local newspaper) to ask for some details about my diagnosis, my running challenge and the support I am receiving from so many wonderful people. I was thrilled to have another opportunity to raise awareness about the condition, the amazing support I have received and the fantastic work of the MS Trust. 

So straight after work I legged it home on the bus to meet a photographer from the Evening chronicle to take some photos to accompany my story about taking part in the Great North Run and 10k run, with my fantastic virtual running partners as part of my challenge for the MS Trust. I have never done anything like this before and it was against the clock as light was fading (not the best for shots apparently). I managed to pull on my MS Trust vest (any opportunity to raise awareness of the MS Trust in case it helps someone!) but didn’t have time to put on some running bottoms so there I was springing around the street in my leggings (trying to convince myself they could look just the same as some running tights – the gentleman looking on in confusion from the bungalow didn’t seem convinced…) whilst trying not to do anything to my darned knee!

I hope that the article shows people you can live a full life with a diagnosis of MS, if not it may cheer up someone’s day looking at the wally running in the dark in her leggings with a spare pair of trainers in her hands…Any kind of diagnosis will never change you from the idiot you always were!

I felt like after a very busy week at work, it had been a really positive end where I had hopefully helped spread the positive message about living with MS. 

On Thursday night I had baked four sponge cakes and whipped up a huge bowl of butter cream icing ready for Paul to work his magic on Clara’s birthday cake. Free the photographer left Paul for busy with th icing and created the cake in honour of Clara’s favourite person at the moment. 

You’ve got to love Buzz Lightyear. He’s brimming in confidence and is always sure that things are possible. His most well known catchphrase ‘To infinity and beyond!’ is definitely something to inspire you even on the toughest days!

Paul as always did a great job on the cake, I contributed to the decoration by producing a blue Saturn-like planet complete with ring which subsequently knocked the other planets off their wires and took Buzz with them. I like to think I was being helpful, Paul’s expression may have suggested otherwise…

After it was all over, Paul and I sat down with our dinner to watch a random episode of Elementary (the US take on Sherlock Holmes which is actually quite good). Unfortunately the side story of this particular episode was a break down in Captain Gregson’s relationship as his girlfriend seemed to suddenly go cold on him. Then came the dramatic climax as she sobbed and told him that she had been diagnosed with MS and it meant her life was only going in one direction and she didn’t want to do that to him. This was confirmed by Dr. Joan Watson who, whilst looking very serious, said it was a cruel disease that  took the life of those diagnosed with it down a horrible path. 

As this drama was being played out on screen I laughed at the irony of our random choice of programme, I cried as I was reminded of my fear when 2 years I had to break the news to Paul and  then I was overwhelmingly frustrated at how MS was still being portrayed. As Paul pointed out to a very quiet me that they didn’t mention any treatments or methods of management of this condition and this is exactly why me and my amazing Support Team are doing this challenge. To show that MS does not mean the end. 

There may be challenges along the way but ones that we can face. Life can still be as positive and as happy as it has always been, it just may be different to what you originally thought. Life is full of wonderful opportunities if you are willing to grasp them with both hands!

3 thoughts on “Lights, Cameras, MS Action

  1. Oh Lucy! What a busy and emotional roller coaster of a day you had. You are doing a fantastic job. I didn’t know the symptoms MS. It’s weird how we do tend to just shrug things off and assume it was something minor that will just go away.
    I hadn’t realised that you plan to do the Great North Run, or have I picked that up wrong.
    I was reading an article about someone who has been deemed unsuitable for stern cell treatment, so went Mexico for treatment with positive results. Is that the treatment you had?
    We have been walking again this week. We went to Richmond in N.Yorkshire. A little more sedate than some of our recent walks. On Monday we are off to the Lakes and have some mountains to climb, weather permitting.


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