Optic Neuritis | Animated Symptoms with Shift.MS

Shift.MS did a great series called Animated Symptoms just before Christmas which brought each symptom to life from real life stories in the form of brilliant animations.

Here is Kirsty’s experience with Optic Neuritis and I’ve written a little about my experience below.

 

MY EXPERIENCE: Six months in to my MS diagnosis I experienced my first relapse in the form of Optic Neuritis. Optic Neuritis is the name for inflammation of the optic nerve. This is the nerve that carries messages from the eye to the brain and my messages were well and truly confused.

OPTIC NEURITIS ONSET: One day I woke up one day to a blurry patch floating around in my left eye, as if something had flown in to my eye but no amount of blinking was making it any better. Over a two or three day period the blurry patch grew bigger and bigger and this was shortly followed by a sharp pain at the back of my eye every time it moved it from side to side. I tried resting it, closing my eyes, laying in a dark room… nothing was working. I decided a trip the the opticians was in order as I was yet to connect the blurry eye sight with my MS diagnosis. The opticians said they couldn’t see anything wrong with my eye sight at all but given what I was describing and experiencing he sent me to Moorfields Eye Hospital. Hours later I was essentially told that this was clearly Optic Neuritis (Inflammation of my Optic Nerve) and had been brought on by the MS and unfortunately was just something which would get better with time.

STEROIDS: After approximately four days living with the blurry eye and reoccurring pain I caught up with my GP and my MS Nurse who decided it was best I start a course of Steroids. 500mg a day for 5 days. THIS. WAS. BRUTAL. I actually don’t know which was worse, the Optic Neuritis or the treatment for the Optic Neuritis. (I have since found out that everyone reacts differently to them so please don’t let me put you off if this is an option you’re considering.)

The story of my experience with Steroids starts with how bloody AWFUL they taste. I had to coat them in chocolate to be able to take 5 x 100mg tablets in a row. I felt like I’d swallowed a monster. Initially they made me feel incredibly sick and nauseous, but this soon turned in to a burning rage, an aching from what felt like all my bones and joints. I experienced a headache like never before stemming from indescribable tension in my shoulders and as the tension rose the tremors set in. I lost around half a stone over 5 days and it was just the most awful experience everywhere in my body EXCEPT for my left eye… the dust seemed to have settled and the inflammation reduced. Clear as day, I could see again.

The effect that optic neuritis can have on your sight varies from person to person. It can range from blurred vision to a complete loss of sight so it’s really up to you and your MS Nurse / GP to weigh up the options on how to best treat it.

One year later the side effects of steroids were clearly a distant memory and something of the past because when Optic Neuritis returned, this time in my right eye, I was right back on the Steroid rollercoaster of hell. I learnt my lesson when it returned for the third time (back in the left eye) and decided to just ride it out which took approximately 3 weeks to fully return to clear vision.

It’s been 4 years now and my eye sight is doing just fine (touch wood) but at least I can use my past experiences to inform me on my decision if or when it ever returns.

Have you every experienced Optic Neuritis? If so I’d love to hear from you to know how it may have differed from mine or Kirsty’s experience.

P x

Anxiety | Animated Symptoms with Shift.MS

Animated Symptoms is a campaign Shift MS. ran just before Christmas but I feel like these videos are such a brilliant way of explaining and visualising symptoms that I’m going to continue sharing them. In particular the ones which I’ve experienced and can explain how I’ve personally been affected.

This is the second video I was a part of in the series and here I talk about how MS affects me and my anxiety…

MS doesn’t necessarily CAUSE anxiety, however because I ALREADY experienced a little social anxiety, it seems to have been magnified since my diagnosis as I’m that much more aware of these invisible symptoms. At times I’ve felt awkward yawning constantly in social events once they go past 9pm (I’m not a night time person!!) or I’ve not quite been able to get my words out due to Cognitive problems and as a result I become very aware of my surroundings and begin to feel more and more anxious.

Here’s the video to explain a little more…

 

Do you experience Anxiety, MS or no MS? I’d love to hear from you if so just to understand how it manifests in different people and whether you’ve found a way to manage it.

P x

Fatigue | Animated Symptoms with Shift.MS

MS fatigue is one of the most common symptoms of multiple sclerosis. As well as being one of the most common symptoms of MS, fatigue is often one of the most easily missed.

Fatigue is so hard to explain because it’s not an obvious symptom to look at and can often come across like someone is tired, or maybe even seem exhausted or lazy.  Here is the Shift.MS #12DaysofXms video Dean shares his experience with Fatigue and he explains it SO well…

 

MY STORY WITH FATIGUE:

Fatigue has been one of my main symptoms and one which I’ve struggled with for a long time. I’ve found ways to manage it now

There was one occasion where I had experienced a particularly busy day at work on a photoshoot which had required an early 7am start and long travel times. I had committed to going to a Christmas party in the evening which the activity I found out upon arrival was Ice Skating followed by a meal in town.

I started to notice I was feeling pretty exhausted after the long day on the train journey to meet my colleagues when I couldn’t quite concentrate on holding a conversation. It was as if I was staring blankly at the group which they spoke at me. I then noticed it again when I was Ice Skating as my legs were, as Dean describes, ‘wading through snow’ just to get around the rink.  I made it to the dinner table in the restaurant and as the meal went on my eyes just became heavier, my words felt like they were slurring and coming out in slow motion and I was certain I was about to face plant the table any minute.

I ended up sitting at the table in complete silence contemplating how I was even going to make it home and wished there was some way I could by-pass the 1 hour commute and miraculously end up tucked up in bed! At 11pm I excused myself and began what felt like a mission to travel the lengths and breaths of Europe, aka. Central London to Hertfordshire. 2 Tubes, 1 Train and 1 Car ride later I was home.

I had 5 hours sleep instead of my usual 8 and that episode of Fatigue had a knock on affect for the rest of the week. It acted as a huge reminded of just how important it is to go at my own pace, rest when needed and simply don’t do too much.

I’d love to hear your stories of fatigue so please go either comment below or go to the Say Hello! page 🙂

P x

Cognition & Thinking | Animated Symptoms with Shift.MS

 MS symptoms can be so varied from person to person and really hard to explain, so this series of animated videos from MS charity Shift.MS are just genius! Over the 12 days of Christmas Shift MS will be releasing these brilliant Symptom Animations; each one explaining someones experience with a particular symptom, with a little animation to really visualise these usually invisible experiences. 

I’m so fortunate to have been able to be a part of this project as I know how many people this is going to help. As someone who has lived with MS for almost 6 years I’m still learning every day what all the different symptoms look and feel like.

This is perfect to share with my family. friends and colleagues too so they have a better idea of what I mean when I’m talking about my MS.

Here I share my experience of how MS affects my Cognition and Thinking… I mean I sounds like I’m experiencing problems with Cognition while I’m speaking in the video!! 

 

I’m going to do a post each day for each of the symptoms Shift MS have posted and tell my story and experience of that symptom. So tomorrow will be Fatigue as it’s incredibly fitting given the busy day I know I’ll be having tomorrow! 

Let me know what you think, I’d love to hear your experiences with cognition or problems with thinking straight? It’s one I’ve definitely had to learn to manage and one of the most frustrating invisible symptoms for me. 

P x

Create Your Mindset With This Simple Values Exercise.

Opportunities come in different shapes, forms and disguises. They present themselves in the strangest ways and sometimes the most dramatic or stressful circumstances and end up being a huge turning point in life.

I truly believe that everything in life can change with the correct mindset. When I was diagnosed I kept saying to myself “MS is an opportunity.” “MS is your OPPORTUNITY”. I thought to myself and realised that I was looking at this difficult time from a different perspective. So the most important thing I could do in that moment was to define and create my mindset.

Screen Shot 2018-09-13 at 18.08.50.png

But how do you just decide what is right for you? Start by defining YOUR VALUES. What is it really matters most to you? What motivates or drives you? What guides you? How would you spend your time if you could do whatever you want every single day for the rest of your life?

This got me self evaluating life never before. I started by highlighting the TOP 5 MOST IMPORTANT VALUES, the rules or non-rules I choose to guide me in life.

And so I began…

  1. Self-Care
  2. Curiosity
  3. Kindness
  4. Resilience
  5. Happiness

I then started to look in to what each of these looks like, what are the behaviour of these values?

1. Self-Care

  • To respect myself from the inside out. To look after myself. My body, my mind and my general wellbeing.
  • To find a sport, a practice, a physical activity that I ENJOY and exercises my body in the way it needs.
  • To exercise my mind the way I exercise my body. Look after my mental health.

2. Curiosity

  • To explore and discover. To travel.
  • To Listen / Watch / See and Experience. To always learn more.
  • Say yes to new opportunities. Feel the fear and do it anyway. Don’t be afraid to try new things.

3. Kindness

  • To be compassionate, considerate, nurturing and caring towards others and to myself.
  • Talk less. Listen more.
  • Show gratitude.

4. Resilience

  • Bend rather than break. Be dynamic and flexible.
  • See the positives, the opportunities and the learnings in any situation.
  • Know your strength. Don’t quit. Just keep going. “He who says he can, and he who says he can’t, are both usually right.”

5.Happiness

  • Enjoy life. Enjoy living. Live in the present moment for the present moment is all that is.
  • Know what you love, what makes you happy and do MORE of it.
  • Make good choices, for yourself. Not others.

These are my top 5 values that matter most to me and the way I live my life. This set of VALUES keeps me focused, keeps me true to myself and are the foundations to my MINDSET.

Have you tried building a Mindset based on your values? I would love to hear from anyone else’s experiences or views on this. How does your mindset affect you life?

Here are some examples of values to get you started…Screen Shot 2018-09-13 at 18.14.47.png

Remember to also look at what those values look like to you. What behaviours do those values come with? Of course you can still go through life being Kind or Forgiving if you don’t pick those ones but here you are simply choosing your top 5 MOST IMPORTANT values.

Doing this exercise brought me so much clarity on what is really  important to me in order to live my best life so I really hope this can help you in the same way.

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P x

RAISING AWARENESS

Since I was diagnosed I have tried to link up with many MS charities and organisations simply to raise awareness and get involved with the ‘MS Movement’.

Early on in my diagnosis I turned to Shift.MS, an organisation set up FOR people with MS BY someone with MS. I suppose it’s a bit like Facebook for people with MS and you can meet and connect with other MSers, all over the world. It’s great for targeting the younger generation as there is a stigma that MS only affects much older people.

The most common age of diagnosis is between 20 – 40; Hardly old!

I did some work with them on a couple of videos 9 months after I was diagnosed which were really interesting. It’s weird (and rather cringeworthy) looking back at myself then as I can see how conflicted I was; I came across as strong but I know that the person I’m watching now was fragile and scared inside and had a long road of ups and downs to come.

The people I was filming with had all had MS much longer than I had and there was a point where I started crying and had to stop filming when they were talking about wheelchairs.

“I was 22 years old and contemplating the possibility of soon being in a wheelchair.”

Shift Ms produced  a series of short films ‘GALLOP’; exploring the life changing events of diagnosis and then ‘BELONG’ which looks at people in conversation discussing their different perspectives of living with MS. They then asked 6 real ‘MSers’ to share their experiences of diagnosis and discuss some of the issues raised in Gallop and Belong.

A lot of the people who know me now have never seen these before so I thought I’d share them now:

GALLOP BY MSers – MSers discussing their diagnosis

BELONG by MSers – MSers talking about coming to terms with their MS.

 

P x

Greatness Exits In All Of Us

I almost don’t even know where to start. I have so many things I want to share and talk about. I’ve told myself to stop thinking and talking so much and just do it!

This is a great video I have watched time and time again of one of my great inspirations Will Smith; it’s a great place for me to start in expressing exactly how I feel about life.

I’ve pulled out a few key QUOTES which really resonate with me…

“GREATNESS IS NOT THIS WONDERFUL, ESOTERIC, ELUSIVE, GOD LIKE FEATURE THAT ONLY THE SPECIAL AMONG US WILL EVER TASTE, IT’S SOMETHING WHICH TRULY EXISTS IN ALL OF US”

 “The only fear you have to fear is fear itself”

“HE WHO SAYS HE CAN, AND HE WHO SAYS HE CAN’T, ARE BOTH USUALLY RIGHT”

“I want the world to be better because I was here. Your life will become better by making other lives better.”

“The first step before anybody else in the world believes it, is that you have to believe it”

“YOU HAVE TO BELIEVE THAT SOMETHING DIFFERENT CAN HAPPEN”

“There’s a redemptive power that making a CHOICE has, rather than feeling like you’re an effect to all the things that are happening.”

I must have watched that video like a hundred times! I’m Obsessed. I try to make this my approach to EVERYTHING.

BELIEVE IN YOU!

P x