Yes, I Have MS Clubhouse Community

Come join the Yes, I Have MS Clubhouse Community! Over the last few months I have been running weekly talks for the MS community on the Clubhouse app which is an audio only social media platform. Every Tuesday at 7pm GMT I host a room which has a weekly topic related to living well with MS. We’ve discussed diagnosis, dating, depression, ambitions and achievements and so many other topics in between! The Yes, I Have MS Club is a safe space for members of the MS community and their friends and family to share experiences, ask questions and support each other wherever we are on our journey.

It has been such an incredible experience to connect with people from all over the world. My first talk started with having a conversation with the inspiring Laura Cariello who is based in New York and does Crossfit and takes part in triathlons! It then developed over the following few weeks to include people from the Netherlands, Germany, UAE, Saudi Arabia, Egypt and more! 

 

Running these MS Clubhouse talks is a huge step for me on my MS journey. From not wanting to talk to anyone with MS when I was first diagnosed, I am now connected with so many people from all over the world who understand what I am going through and who I can support on their journeys too. 

I realised how important running the Clubhouse room is when during the third talk that I ran, a girl from Egypt joined who had been diagnosed only 6 weeks earlier. She said that she was there because she wanted to find out if her life was over and what having MS actually means, as her neurologist hadn’t really explained anything to her. Reassuring people that having MS doesn’t mean that your life is over is what inspired me to write this blog and run the Clubhouse talks. Hearing her say that, brought it home to me that it is important to host these talks because I would have loved to have had a space like this when I was first diagnosed too.

 

There are also other members of the MS community running clubs with different focuses such as Multiple Sclerosis Mamas, MS Thrivers and MS Warriors Living Well.

Unfortunately, the Clubhouse app is currently only available in iPhones and you need to be invited by a current member. So, if you are interested in joining, please just drop me an email with your telephone number and I can send you an invite. I know that this isn’t the most inclusive way of running the talks, but there currently isn’t any other app to connect via audio available to a wide audience. If you don’t have an iPhone, sign up to my newsletter and I’ll let you know as soon as it’s available on Android too. 

 

Finally, I now have a Yes, I Have MS Club that you can join on Clubhouse and you will get notified whenever a room begins. Just join Clubhouse and search for ‘Yes I Have MS!’.

I really hope you can join one of the talks and please spread the word to the MS Community that these clubs exist and these talks are happening as they are such a great way of connecting with the MS community!

Enjoyed the post? Share the love on social media!


Miso Aubergines with Tofu, Sesame and Chilli

This recipe for Miso Aubergines with Tofu, Sesame and ChilliI dressing is from The Green Roasting Tin by Rukmini Iyer. I found The Green Roasting Tin recipe book on my mum’s shelf when I visited for Christmas and spent an entire afternoon pouring through the diverse array of recipes. I was inspired so much that I ordered my own copy the same day! 

 

The Miso Aubergine with Tofu, Sesame and Chilli dressing is now a firm vegan favourite and has made it into my regular routine of recipes. I also add green beans to the tray as well as spring greens just to add an extra veggie boost. Plus, I like to sprinkle some peanuts over at the end to give it a bit of crunch.

Miso Aubergines with Tofu, Sesame and Chilli 

Serves 4

 

Prep: 10 minutes

Cook: 45 minutes

 

Ingredients:

 

2 aubergines, halved lengthways

250g firm organic tofu, cut into 1.5cm slices

75g miso paste

2 tablespoons sesame oil

2.5cm ginger, grated

2 cloves of garlic, crushed

100g spring greens, thickly sliced

 

DRESSING

 

1 red chilli, finely chopped

2cm ginger, grated

2 cloves of garlic, grated

2 limes, zest of 1 and juice of both

2 tablespoons soy sauce

2 tablespoons sesame oil

3 spring onions, thinly sliced

 

TO SERVE

30g sesame seeds

Rice

Method:

 

  1. Preheat the oven to 180℃ fan/ 200℃/ Gas 6. Cut deep cross-hatches into each aubergine half, then transfer to a roasting tin along with the tofu.
  2. Mix the miso paste with the sesame oil, ginger and garlic, then rub this into everything in the roasting tin. Transfer to the oven and roast for 25 minutes. Then, rub the spring greens with 1 tablespoon of sesame oil, add them to the tin and cook for a further 20 minutes.
  3. Meanwhile, mix the chilli, ginger, garlic, lime zest and juice, soy sauce, sesame oil and spring onions together. Tip this dressing over the aubergine and tofu as soon as it comes out of the oven, then scatter with the sesame seeds. Serve hot with rice alongside.

And there you have it: delicious Miso Aubergines with Tofu, Sesame and Chilli served with rice and a sprinkling of chopped peanuts.

 

Let me know if you try the recipe and how you like it!

 

Find more vegan recipe inspiration in my Veganuary 2021 Roundup.

Enjoyed the post? Share the love on social media!


Roasted Red Peppers with Olive and Capers from Zaitoun

This super simple and deliciously fresh vegan recipe is taken from Yasmin Khan’s beautiful book Zaitoun. My little brother Michael who is a massive foodie introduced my family to the Zaitoun recipe book and it has proved a huge hit! This Roasted Red Peppers with Olive and Capers recipe is ideal for a quick and easy midweek dinner or can be served as part of a spread alongside some of her other delicious Palestinian recipes like Hummus, Burnt Aubergine and Tahini or her Walnut and Olive Tapenade- yum!

Roasted Red Peppers with Olive and Capers

Serves 4 as part of a spread or a main with couscous and other vegetables

 

Ingredients:

 

4 red peppers

2 garlic cloves, finely sliced

4 medium tomatoes, finely chopped

2 tablespoons capers, rinsed and drained

30g pitted black olives, roughly chopped

2 tablespoons za’atar (or substitute 1 ½ tbsp dried oregano plus ½ tsp sumac)

2 tablespoons apple cider vinegar

4 tablespoons extra virgin olive oil

Sea salt and freshly ground black pepper

Method:

 

  1. Preheat the oven to 200℃/ fan 180℃/ Gas 6
  2. Cut the peppers in half, trim off any white pith and place them in a baking tray.
  3. Mix the garlic, tomatoes, capers, olives, za’atar, vinegar and extra virgin olive oil together. Season with 1 teaspoon salt and ½ teaspoon pepper.
  4. Stuff each pepper with a few spoonfuls of the filling, then cover the tray with foil.
  5. Bake for 20 minutes, then remove the foil and bake for another 20-30 minutes, until the peppers are completely soft and a little darkened around the edges.

And voilà, you have delicious Roasted Red Peppers with Olive and Capers to serve with couscous or some lovely warm bread!

 

Let me know if you try the recipe and how you like it!

 

Find more vegan recipe inspiration in my Veganuary 2021 Roundup.

Enjoyed the post? Share the love on social media!


Noor’s Black Lime Tofu from Ottolenghi, Flavour

Noor’s Black Lime Tofu recipe is taken from the taste sensation recipe book FLAVOUR by Ottolenghi. It is a celebration of vegetables and full of recipes that elevate humble ingredients like the carrot, mushroom or celeriac to show stopping centrepieces. 

 

I made Noor’s Black Lime Tofu a couple of times during my Veganuary experiment and it is my favourite recipe that I made during the whole of Veganuary! The simple pickled red onion is a flavour game changer and I’m now a little bit obsessed with pickling! I served the Black Lime Tofu with Thai sticky rice for an extra decadent twist and a sprinkling of peanuts to add a little bit more crunch.

Noor’s Black Lime Tofu

Serves 4 as a main

 

Ingredients:

 

1 tbsp apple cider vinegar

2 tsp caster sugar

1 small red onion, thinly sliced into rounds on a mandolin, if you have one, or by hand (60g)

600ml sunflower oil, for deep-frying

2 blocks extra-firm tofu (560g), patted dry and cut into 2cm cubes

2 tbsp cornflour

2 onions (300g), roughly chopped

6 garlic cloves, roughly chopped

60ml olive oil

2 tsp cumin seed, roughly crushed in a pestle and mortar

2-3 dried black limes, blitzed in a spice grinder to get 2 tbsp (10g- use a food processor if you don’t have a grinder, and pass through a sieve)(if you can’t get any black limes, subsitute with 1tbsp lime juice and 1 tbsp lime zest)

2 tbsp tomato paste

20g parsley, roughly chopped

250g baby spinach

Salt and black pepper

Cooking it up!

Method:

 

  1. Put the vinegar, 1 teaspoon of sugar, the red onion and ¼ teaspoon of salt into a small bowl and mix well to combine. Set aside to pickle while you continue with the rest.
  2. Heat the sunflower oil in a medium high-sided sauté pan on a medium-high heat. Toss the tofu in a bowl with the cornflour until well coated. Once hot, fry the tofu (in two batches) until crispy and lightly browned, about 6 minutes per batch, then transfer to a plate linef with kitchen paper and set aside.
  3. While the tofu is frying, prepare the sauce. Put the onions and garlic into a food processor and pulse a few times until very finely minced but not pureéd. Put the olive oil into a large sauté pan on a medium-high heat. Add the onion mixture and cook, stirring occasionally, until softened and lightly browned, about 10 minutes. Add the cumin, black limes (or regular lime zest and juice) and tomato paste and cook for 1 minute more.  Add 400ml of water, the remaining 1 teaspoon of sugar, 1 ¼ teaspoon of salt and generous grind of black pepper. Bring to a simmer and cook for 6 minutes, stirring occasionally, until thick and rich. Add the crispy tofu, parsley, and another grind of black pepper and stir to coat. Add the spinach in increments, stirring until just wilted, about 3 minutes.
  4. 4. To serve, transfer the mixture to a shallow serving platter and top with the pickled red ion (or serve straight from the pan).

Noor's Black Lime Tofu with Thai Sticky Rice

And there you have it: the tangy taste sensation that is Noor’s Black Lime Tofu!

 

Let me know if you try the recipe and how you like it!

 

Find more vegan recipe inspiration in my Veganuary 2021 Roundup.

Enjoyed the post? Share the love on social media!


Veganuary 2021 Roundup

I finished Veganuary on Tuesday 2nd February.  This is because I didn’t start Veganuary until January 2nd due to being rather hungover (oops!) on the 1st and fully unable to cook omnivore food, let alone get my head around veganism! 

So why Veganuary?

So, my vegan journey began on January 2nd 2021. My reasons for doing Veganuary this year were two fold. 

 

Firstly, I have become more mindful of my carbon footprint and the impact that it has on the planet. I wanted to do Veganuary so that I would be motivated to search for and try out delicious vegan recipes that I can incorporate into my normal cooking routine. Just by not consuming meat and eating plant-based products instead can have a hugely positive impact on the environment as well as our health. 

 

Secondly, I was intrigued to see whether following a vegan diet would have an impact on my MS symptoms. I have previously tried the Overcoming MS diet which is basically veganism but with seafood and replaces all oils with linseed oil. For me, it was too restrictive and made me miserable, so after 6 weeks of following it I stopped. However, according to medical research, vegans weigh less than omnivores and suffer less chronic diseases, so I thought it was worth giving it a try to gradually move towards a more plant-based diet. 

What I ate

I love cooking and so during Veganuary I ate mostly homemade food rather than processed or shop bought items. However, what I realised early on in January was that it is still easy to be an unhealthy vegan if you don’t think about what you are eating.

 

For about the first 10 days, I ate whatever I wanted and got really excited when I found out that lots of foods were vegan (ginger nut biscuits, certain flavours of crisps, Green and Blacks dark chocolate with ginger...the list goes on!). At first, I ate whatever I wanted and didn’t think about the calories, but about half way through January I decided to try to lose weight as well as following a vegan diet.

 

This meant that not only did I start exercising, but I also began to watch what I was eating and so stopped snacking on all the ginger nut biscuits just because I could!

Favourite Vegan Recipes

I found some really lovely vegan recipes and not all of them were in dedicated vegan cookbooks. At the beginning of Veganuary I collected together all of my cookbooks and highlighted any vegan recipe that sounded nice and that I thought I would have a go at making. By the end I had a list of about 45 recipes to try so I could have gone vegan for a lot longer without getting bored!

 

I mainly used 3 cookbooks:

This is a gorgeous cookbook not just because of the cover and the photos and stories inside, but also because of all of the deliciously authentic Palestinian recipes that writer Yasmin Khan has collected on her travels.

 

Middle Eastern cuisine is great for vegans as traditionally it doesn’t include much dairy and her recipe for hummus is the best that I’ve ever made (I add a teaspoon of Ras El Hanout into mine to spice it up!). I also enjoyed her Burnt Aubergine with Tahini recipe. Both dips served with pitta and veggies made a delicious vegan lunch!

 

One night for dinner though I cooked her Roasted Red Peppers With Olive and Capers and served it with couscous and it was so tasty!

Roasted Red Peppers with Olive and Capers

My little brother must have been psychic because he bought Ottolenghi’s new book Flavour for me for Christmas along with some of the magical ingredients needed to bring Ottolenghi’s incredible flavoursome dishes to life. This newest recipe book from Ottolenghi is not a vegetarian or vegan cookbook by design, but does focus on bringing out and celebrating the flavours of vegetables, so there were lots of exciting vegan options inside. 

 

During Veganuary I made The Ultimate Traybake Ragu which was so rich, it was incredible that it didn’t include any cheese or meat, as well as the warming Portobello Steaks and Butter Bean Mash.

Ottolenghi Ultimate Traybake Ragu- heaven!

However, my favourite dish and a new firm favourite of mine was Noor’s Black Lime Tofu. The combination of crispy deep fried tofu paired with pickled red onions and deep garlic and lime paste is heavenly.

I found The Green Roasting Tin on my mum’s shelf when I visited for Christmas and spent an entire afternoon pouring through the diverse array of recipes. I was inspired so much that I ordered my own copy the same day! The book is split in half with vegan recipes at the beginning and vegetarian recipes in the second half. What is great about the book is that each section is divided into how long each meal takes to cook, from quick dinners to slower cooks. The highlight for anyone living a busy life is that each recipe requires one roasting tin that you pop in the oven, which means that you can cook delicious, nutritious and healthy meals every day without having to slave over the stove!

 

During Veganuary I cooked many different recipes from this book...Rukmini Iyer is my new food hero! From the Quick Thai Okra with Oyster Mushrooms and Coconut Milk to the Simple All-In-One Daal with Roasted Shallots, Coriander, Pomegranate and Cashews and Oven Baked Ratatouille, I now have a list of new firm favourites that have been repeated since finishing Veganuary.

All-in-One Daal

My absolute favourite though is her Miso Aubergines with Tofu, Sesame and Chilli. Served with brown rice and a sprinkling of peanuts this is true comfort food for me. The sesame, lime and chilli dressing that you add at the end gives it a zesty tang and the slow roasted aubergines with miso and ginger are decadent! I like to get as many greens as possible into my dishes so I also add a handful of green beans along with the spring greens suggested in the recipe.

Favourite Vegan Products

While I like to cook from scratch as much as possible, life doesn’t always work out that way! Business commitments, hobbies, friendships and feeling really tired at the end of a long day all conspired to challenge my commitment to Veganuary and eating well.

 

However, I did find some pre-packaged vegan products that I really liked and that I could turn into a really quick and healthy meal on the days when I wasn’t feeling so creative in the kitchen.

 

Vivera Southern Fried Plant Nuggets

 

These are tasty vegan nuggets essentially, but they are relatively low in calories and are super tasty. Served with a salad, some sweet potato wedges and homemade low-fat tzatziki, I would now choose eating these over meat equivalents any day.

 

Naked Glory BBQ Tenderstrips

 

The same goes for the Naked Glory BBQ Tenderstrips. They come frozen which is really convenient and means no waste. They cook from frozen in a frying pan in 10 minutes and can be added to a salad, a sandwich or used in fajita-esque meals. Again, I really like them and they have become my healthy kebab replacement when I get that dirty craving on a Friday night!

 

Sainsbury's Love Your Veg! Red Pepper & Chipotle Falafels

These falafels are really tasty and not dry at all. I used them as a meatball replacement and rustled up a 10 minute-take on a tagine using chopped apricots, sultanas, red onion, harissa and a can of chopped tomatoes with a teaspoon of sugar. Cooked down for 10 minutes or until sticky, served with couscous, this was a super quick and healthy evening meal. 

Sainsbury's Red Pepper and Chipotle Falafel served with apricot tagine, rice with dill, vegan yoghurt and chopped almonds

The results

The results of my Veganuary experiment are as follows:

 

1.I feel really proud of myself for committing to something and seeing it through.

2. I now have an amazing list of new vegan recipes that I have continued to incorporate into my normal cooking routine.

3. My breakfasts and lunches are all vegetarian or vegan and at least 2 of my evening meals each week are vegan.

4. I lost half a stone by the end of Veganuary. However, I would like to caveat this by saying that I started to exercise and do HIIT sessions half way through January that had a big impact on my weight loss. I also really started to watch what I was eating half way through the month. So, I wouldn’t attribute the weight loss just to following a vegan diet, I would attribute it to being more mindful of what I was eating and how I was moving as a whole.

Did you do Veganuary or do you permanently follow a vegan diet? I’d love to know about your experiences and if you have any top recipes or tips, please share them with me by leaving a comment!

Enjoyed the post? Share the love on social media!


Sign Up To The MS Register

If you live in the UK and have MS, then you can (and should!) sign up to the MS Register. The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK. 

 

When you sign up you will be asked to complete a series of questionnaires designed to help researchers understand more about the realities of living with MS including physical and mental symptoms and wellbeing. Then, every 6 months you will be invited to complete the same set of questions to monitor and gather data on the progression and management of your MS.

 

Data captured by the UK MS Register has been used by researchers within Swansea University, across the UK and even in Europe to answer important questions about living with MS in the UK.

 

Participation is completely voluntary, but I feel that taking part is extremely important for giving researchers the data and insights they need in order to develop a cure for MS and also for health bodies when making decisions about services and treatments that should be made available to those people living with MS. 

You can find out more and register here: https://ukmsregister.org 

Enjoyed the post? Spread awareness on social media!


Dating With MS

So, full disclosure, I wasn't dating with MS for very long as I met my fiancé about 6 months after my diagnosis. However, I still went through, what I imagine, are all of the common fears that a single person experiences when diagnosed with a long-term illness: will anyone be able to love me?; will they run a mile if I tell them about my MS?; will they stay with me if my symptoms get worse?; and the list goes on…(*yes, I’m face-palming my 27 year-old self for ever having had these thoughts!*)

 

Obviously, while these fears are completely understandable, they are also completely unfounded if you are with a kind and compassionate partner. And, to be honest, if they’re not kind and compassionate, then they are definitely not the type of person that you want to spend your life with anyway!

 

However, the actual reality of dating with MS, especially as an “invisible illness”, did bring up some potentially tricky scenarios such as when to share that I have MS, who do I “have to tell” and being able to explain what the future might look like when I had absolutely no idea myself! 

 

So, in this blog I want to share what I learned from dating with MS. Are you sitting comfortably? Then I shall begin...

You get to choose who you tell

I’ve learnt that there is a balance to be had between feeling “open and honest” and “hiding” my diagnosis. Just because you don’t tell someone about your MS diagnosis doesn’t mean that you are hiding it or lying about it, it just means that it doesn’t have an impact on your relationship with that person and it isn’t a piece of information that they need to know about right away.

 

For example, not everyone needs to know that I got so drunk on my year abroad that I fell out of bed onto a concrete floor and broke my rib! It’s not a story that I lead with when meeting people, but if you talk to me long enough, it will probably come up in conversation– just like my MS!

There is no “right time” to tell someone

Who you tell about your MS diagnosis and when you tell them is completely up to you. There is no right or wrong time. 

 

Some people prefer to be upfront about their diagnosis from a first date, others prefer to wait before sharing their diagnosis with a potential partner. Whatever you choose to do is perfect.

 

For me, I never mentioned my diagnosis on first dates. It wasn’t really a conscious decision and if anyone had explicitly asked me, “Do you have a long-term illness?”, I would have said, “yes”. However, as that isn’t the best first date chat, unsurprisingly it never came up in conversation! 

 

For a long time I didn’t want to be defined by my MS and so, for me, I didn’t think that it was the most interesting or important thing that anyone needed to know about me and so I didn’t share my diagnosis when I first met people. 

 

I definitely agonized internally over this choice when dating because I wasn’t sure whether I was being deceitful or whether it was wrong, but there really is no right or wrong to it. I was still trying to come to terms with the MS diagnosis myself and what it might mean for my life, let alone trying to explain it to a potential partner. So being kind to myself and giving myself time and space to work out whether the person I was dating merited me being vulnerable and sharing my diagnosis with them was the best decision for me. 

You don’t have to have all of the answers

When I told my now fiancé about my MS diagnosis he surprisingly didn’t have many questions. I word garbled, in between tears, that I had MS and described what MS was and that I didn’t know what the future held and that I completely understood if he didn’t want to continue seeing me (poor boy didn’t know what was happening!). And then he said, what can only be described as the perfect response: “Well none of us know what the future holds, at least you know what you’re dealing with.” And in that moment I realised that he was absolutely right. 

 

I had been so worried that he wouldn’t be able to handle the uncertainty of my MS (mainly because I still couldn’t handle it) that I’d never even stopped to consider that everyone’s future is uncertain. It’s not something that human beings like to think about as we love having control, but the truth is that none of us have control and everything in life is uncertain. This can seem overwhelming, but it is also liberating and if I had continued to date other people, I think that this would have really helped me to be more confident when sharing my diagnosis.

The right person will love you for everything you are

WARNING: I am going to be soppy here.

 

My fiancé Jon is the best man on the planet. FACT. You might have a wonderful partner, I’m not denying it, but he is the absolute BEST (I’m happy to argue this, just leave me a message in the comments ;p).

 

He doesn’t love me in spite of my MS, he loves me for who I am completely and that includes my MS. He is my champion and my cheerleader. He tucks me up in bed when I’m tired, and blows on me to cool me down when I’m flushing. He also holds me to account when we work together on our businesses and calls me out when I know I’m being a bit pathetic. 

 

He was there when I stood up in front of 200 people at my Landmark Advanced Course graduation and declared that I am more than my MS. Having spent 3 days fully focused on self-development sitting in a conference hall for 12 hours having only slept about 5 hours each night, I felt amazing and powerful because I had been more interested in the work that I was doing than in my symptoms or fears surrounding MS. I realised that if I’d been able to do that for 3 days, then I could do that in my normal life as well and that was how I intended to live my life from now on.

 

When I sat back down, Jon turned to me and said that he was so proud to be my fiancé. And that is the person that you want to be with, whether you have MS or not.

Best Man On The Planet!

The big reveal

I eventually told my fiancé about my MS diagnosis after about 5 weeks of dating. It wasn’t exactly planned and I ended up sharing my diagnosis with him because I thought my heart was going to beat out of my chest from anxiety of not telling him. It was the right time for me and lifted a weight off my shoulders.

 

Either way, remember, it’s your choice how and when you tell anyone about your diagnosis.

How do you find dating with MS? Let me know in the comments below!

Enjoyed the post? Spread awareness on social media!


#ThisIsMS Day 2020

International MS Day is 30th May every year and last year the theme was #ThisIsMS. Normally, my mum and I would do something together, but obviously last year was somewhat different.

 

During the pandemic many charities were losing lots of funds and so the 2.6 challenge was created. My mum is the queen of fundraising (she raised over £10,000 for the British Heart Foundation a couple of years ago!) and so she came up with our very own 2.6/26 challenge for us to complete to raise money for the MS Society.

 

So, instead of being together, we completed thirteen #ThisIsMS activities each. We spent the day apart, but came together on Zoom at the end to share what we had been up to throughout the day (and drink our new cocktail creations!).

 

The challenges were:

1.Write a poem

2.Draw a picture

3.Do a craft – knitting, sewing for 26 minutes

I combined these 3 to create this jazzy creation:

4. Bake a cake

I made my Nana’s decadent (read calorific!) chocolate fudge cake.

5. Find your favourite photo of us and post on Facebook

This is my favourite photo (that I have on my computer!) of my mum and I jumping in the waves off the coast of Valencia...pure fun!

6. Do 26 minutes exercise

26 minutes of Ashtanga Yoga to finish off the day.

7. Create your desert island disc song choices (8), luxury and book

I really enjoyed creating this list and reminiscing about all of the amazing memories that go with each song.

  1. Life on Mars, David Bowie- my dad used to play this on vinyl on many a Sunday morning when I was growing up and it is one of the most incredible pieces of music that I’ve heard.
  2. American Pie, Donn McLean- car favourite from my mum’s 1980s mixtape
  3. Dreams, Fleetwood Mac- I inherited a tape from my parents as they had 2 copies and I never stopped playing it!
  4. Better Together, Jack Johnson- the soundtrack to the summer after my GCSEs
  5. Hysteric, The Yeah Yeah Yeahs- what freedom and travelling sounds like to me.
  6. Waka Waka, Shakira- my guilty pleasure that brings back happy memories from China
  7. Chan Chan, Buena Vista Social Club- the soundtrack to South America and Cuba, of course!
  8. You and Me, Meute- the best gig I’ve ever been to!

Luxury- Lindt Salted Caramel Dark Chocolate
Book- 100 years of Solitude in Spanish

 

You can have a listen to the playlist here.

8. Create a new cocktail

My cocktail was a primavera (spring) mojito with spiced rum and elderflower cordial instead of sugar syrup... was very nice indeed while catching up with my mum about our 2.6 challenge day!

9. Take a photo of something unusual from today

This was my beautifully unusual stripy and fluffy tulip that had been flowering since the beginning of lockdown in my balcony. It made me smile every day that it was flowering.

10. Recommend 13 books each

These are my all time favourite books!

  1. Shantaram by Gregory David Roberts in which a convicted Australian bank robber and heroin addict escapes from prison and flees to India.  The perfect book for travelling! It is a tome of over 900 pages that will keep you entertained for hours!
  2. Cuentos de Eva Luna (Tales of Eva Luna) by Isabel Allende. 23 short stories embodying every kind of human emotion told by the prostitute Eva Luna to her lover in bed.
  3. Daughter of Fortune by Isabel Allende...notice a pattern appearing?! An epic journey from Chile to San Francisco with links to China, this novel was made for me!
  4. House of Spirits by Isabel Allende… last one, I promise, but she is my favourite author! The story details the life of the Trueba family, spanning four generations, and tracing the post-colonial social and political upheavals of Chile.
  5. Wild Swans by Jung Chang.  A family history that spans a century, recounting the lives of three female generations in China from the era of warlords, through the cultural revolution and ultimately Mao’s death.
  6. The Sacred Art of Stealing by Christopher Brookmyre. A foulmouthed bank heist love affair set in Glasgow...one of my favourite books!
  7. Wolf Hall by Hilary Mantel. The first in her trilogy about the rise and fall of Thomas Cromwell in the court of Henry VIII.
  8. The Godfather by Mario Puzo. The novel that brought the Corleone family into our lives. If you enjoyed the film, you should definitely read the original book!
  9. The Girl With the Dragon Tattoo series by Stieg Larsson...I could not put these books down!
  10. Marching Powder by Rusty Young. A non- fiction book that reads like fiction.  It is based on the true story of a British-Tanzanian man, Thomas McFadden, who was apprehended in 1996 at La Paz airport in Bolivia with five kilos of cocaine in his suitcase and incarcerated in the notorious San Pedro prison. Unsurprisingly this falls out of many a South American backpacker’s bag!
  11. Memoirs of  Geisha by Arthur Golden. The novel, told in first person perspective, tells the story of a fictional geisha working in Kyoto, Japan, before, during and after World War II and ends with her being relocated to New York City. I must have read this book at least 4 times.
  12. I Capture the Castle by Dodie Smith. I loved this book when I was a teenager and wanted to go and live in a castle and drink green creme de menthe too! The novel relates the adventures of an eccentric family, the Mortmains, struggling to live in genteel poverty in a decaying castle during the 1930s.
  13. Suite Francaise by Irène Némirovsky. The two stories in this novel were supposed to be part of a five part suite, but tragically the author was detained in 1942 for being Jewish and was murdered in Auschwitz. Her daughters kept the manuscript and it was finally published in 2004.

11. Contact 13 people each and let them know you are thinking of them

This was a such a nice thing to do, especially during lockdown as it was a lovely way to connect with friends and family to let them know I was thinking about them.

12. Recommend 13 films each

My list of recommended films included:

 

  1. Amelie
  2. Inside Man
  3. Lord of War
  4. Five
  5. Y Tu Mama, Tambien
  6. Priceless
  7. Forrest Gump
  8. Pulp Fiction
  9. Up In the Air
  10. What’s Eating Gilbert Grape?
  11. Blow
  12. Into the Wild
  13. Crazy Stupid Love

Ideal viewing during lockdown!

13. Create a photo blog of each of the above and put on social media and email to all who sponsor us.

It was such a great way to do something positive during lockdown. We managed to raise £390 from 23 amazingly generous sponsors!

 

We will have to come up with a new challenge for this year too! Any ideas? Please share them with me in the comments below. 

Enjoyed the post? Share the love on social media!


What I Learned From Seeing An MS Psychologist

Being diagnosed with MS isn’t just about dealing with physical symptoms, it can also have a profound impact on your mental health. There is a higher prevalence of depression in people with MS, so making sure that you have a good support system in place and access to mental health professionals like an MS psychologist is essential.

 

I’m a patient at Southmead Hospital which is part of the North Bristol NHS Trust and the MS team there is fantastic. One of the huge benefits of being a patient there is that they have a dedicated MS psychologist. If you are diagnosed in Bristol, they have a team who guide you through your MS diagnosis in the first few months including a physiotherapist, psychologist and MS nurse. 

 

I was actually diagnosed in Salford and moved to Bristol, so I didn’t benefit from the “onboarding” process. However, after a few consultant sessions during which I would cry (a lot!) my consultant told me about the MS psychologist and asked me whether I would like to have some sessions with her. I had never talked to a mental health professional before as I didn’t consider myself to be struggling with my mental health on a daily basis. However, it was clear through the conversations with my consultant, that while I was dealing with life on a daily basis well, there were clearly underlying issues to do with my MS that I wasn’t processing. 

Meeting the MS Psychologist

I had the sessions with my psychologist at the Brain Centre at Southmead Hospitalwhich is where I go for all of my MS consultations. She was warm and welcoming and I felt very comfortable talking to her during the 6 sessions that we had. 

 

All of the sessions were very focused on my MS diagnosis, so there was no “tell me about your childhood” cliched psychology moments! The purpose of all of the sessions was to help me identify how I really felt about my MS diagnosis and work out how to move forward without crying when I thought about what my future with MS could look like. 

What I Learned From Seeing an MS Psychologist

1. I was really angry

Through my sessions I realised that I was really angry about having MS. I felt like it had stopped me taking advantage of an incredible job opportunity and that many choices had been taken away from me. Ultimately, being diagnosed with MS felt so unfair and I was full of a rage that I hadn’t even been aware of. 

 

This anger meant that I was constantly battling against my MS and every time my symptoms flared and I ended up in bed, the experience was twice as bad. This was because not only did I feel like my life was being put on pause, but I was also getting angry about it and this was having a hugely negative impact on how I felt about myself and my future.

2. I was experiencing a huge loss

When being diagnosed with a chronic illness, there is a grieving process that you go through for the life that you had and the possibilities that the life without illness offered. It was an important realisation for me as it helped me to understand my feelings around my MS diagnosis and gave me an awareness and appreciation of the different phases of emotions that I passed through. 

 

My lovely mum has said to me that it takes 5 years to grieve the loss of something, whether that be a life or a relationship or another kind of loss. I can definitely see that now I am in my fifth year of living with MS, I am definitely on the other side of the grieving process. In fact, I feel like I’m thriving and that anything is possible again, but it has been a long journey with many ups and downs and twists and turns along the way.

3. I was fighting my MS and that is much more exhausting than acceptance

Because I was so angry when my MS symptoms flared, I was fighting it rather than accepting it. This is a really hard thing to do, especially when you’re at the beginning of your diagnosis as there is rage and anger. However, my MS psychologist used the analogy of my MS being like a ball. At the time of attending my sessions with her I was pushing against the ball and using lots of energy fighting my MS and rejecting it. So not only was I exhausted by my symptoms, but I was also exhausted from fighting against them

 

Instead, she suggested that I try to look at my MS as a friend that I care for and carry with me. So instead of pushing against it, I carry it at my side and we move through life together which uses a lot less energy than fighting. Of course this makes sense, but I found this quite hard to accept as a concept as I was still in a place where I didn’t want to accept it! 

 

Over time and having attended different coaching courses I have now got to a place of acceptance. While MS is something that I live with and which is part of me, I am kind to it, because I am kind to myself. I listen to what my body needs which could be sleep, it could be exercise, it could be more water and I give it what it requires. This isn’t even something that only people with MS can benefit from, it’s something that we can ALL benefit from as listening to our bodies and giving them what they need is essential for looking after our wellbeing. 

 

I am now calm on days that my symptoms flare and instead of fighting them, I take action to make sure that I have the time and space to rest.

Outcomes of talking to an MS psychologist

Therapy and coaching are not magic pills that fix everything overnight. What they do give you are the tools to help you deal with life, moment by moment, and face the challenges that occur with power and integrity. 

 

Moreover, my tangible results after six sessions of seeing an MS psychologist were that my results on the anxiety and depression scale improved hugely and I no longer cry in my consultant appointments! Result! 

 

I also want to say that I now talk about my fears, but truthfully, after my coaching course, I no longer have fears in any part of my life which you can read more about here.

Have you been offered therapy sessions as part of your MS treatment? How do you feel about your MS at the moment?

Please comment below and let me know.

Enjoyed the post? Spread awareness on social media!


My MS Symptoms

This is just a quick post so you have some context for where I’m writing from in terms of my MS symptoms and experience. 

First relapse

I was diagnosed with Relapsing Remitting MS in May 2015 when I was 27. In June 2014 I had experienced numbness and a loss of feeling starting in my feet which crept all the way up to my waist. I began to have problems with my balance and I couldn’t walk or stand up for more than about 10 minutes without my feet and legs hurting and feeling extremely heavy. When I was at work, I would stand up to walk across the office and realise that my shoes had fallen off my feet and that I hadn’t even noticed because I couldn’t feel them.

 

After about 1 week the numbness receded from my waist, but persisted in my legs and feet. This lasted severely for the whole summer and meant that while I was travelling in Spain I had to have regular breaks and rest in the afternoons (hello siesta time!)

 

Over the following few months, my symptoms got milder but were still present every day and would sometimes get worse. The numbness ended up being pretty consistent beneath my knees, but would sometimes get worse and it would creep further up my legs, and I would feel more exhausted.

Second relapse

A second relapse followed in March 2015 that affected the left hand side of my torso and spread down my left arm to my hand. My left hand and arm felt very heavy and it was exhausting to type on my laptop. This relapse lasted about 1 month, and the numbness in my torso and arm receded, but has persisted intermittently in my left hand.

Ongoing symptoms while teaching

During my two years of teaching in 2015 -2017 my residual symptoms in my feet, legs and left hand persisted strongly on a daily basis. I had no days without symptoms of some form and the stress of teaching one day even led me to losing the feeling down the centre of my forehead. However, this lasted for less than 24 hours and so wasn’t classed as a relapse.

Ongoing symptoms while being self-employed

When I stopped full-time teaching in July 2017 my symptoms improved significantly to the point that I have days without symptoms or when they are barely noticeable. 

 

Between September and December 2017 I went to South America and worked as a tour leader again which involved being very active and my symptoms were mild enough or non-existent to not bother me for the whole 3 months.

 

Since being self-employed, my symptoms have improved a lot and while they do fluctuate in severity, I have many more days when I don’t have numbness and when I have energy, versus days when I do not. What I class as a “bad day” is when I get that full body exhaustion when my whole body feels heavy and I can barely drag myself out of bed. My head feels foggy and I struggle to concentrate on any task. The numbness will spread up to my knees and my left hand and some of my lower left arm will feel numb and very heavy. 

 

So this is a complete representation of my experience of MS until now. If anything changes, I’m sure I’ll write about it elsewhere, but I’ll also update any major changes in symptoms here.

How are your MS symptoms? What do you do to manage them?

Let me know by leaving me a comment below.

Enjoyed the post? Spread awareness on social media!