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!
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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:
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.
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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:
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.
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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:
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.
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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.
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.
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!
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!
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Tour Leading With MS
I took on the challenge of tour leading with MS in 2017 when I returned to the job after a 4 year break. Travel is my passion and sharing my love of different destinations has played a big part in my professional life.
I spent my first summer at university living in Valencia in Spain and working as a tour guide and pub crawl leader. By day, I would share the culture and beauty of historic Valencia with tourists through walking tours and tapas tours. By night, I helped them get very drunk in the best bars and nightclubs that the city has to offer– shoutout to Radio City in El Carmen!
Running Pub-crawls in Valencia!
Running Pub-crawls in Valencia!
My first job after university was working as a tour leader in South America for the UK based travel agency Journey Latin America. It was such a fantastic experience to get paid to show people around my favourite places in the world.
Not only did I get to revisit lots of incredible sites that most people only see once in a lifetime, such as Machu Picchu and Iguazu Falls, I would also get weeks of “downtime” between tours. Used this downtime to explore new places by myself. Some of the highlights of my downtime were spending 3 weeks living on the Galapagos Islands, relaxing in the paradise that is Ilha Grande in Brazil and exploring the ancient cultures of Northern Peru. It was an incredible year and I loved it!
The Galapagos
Lake Titicaca
Machu Picchu
So, unsurprisingly the place that I most wanted to go back to after my MS diagnosis was South America. Having decided that I was quitting teaching early on in 2017, I began to plan a 3 month backpacking trip. It was only when I talked to an old colleague at Journey Latin America who mentioned that they might be looking for an ad hoc tour leader to lead a couple of tours that I considered combining work with travel again.
Of course, I had a few concerns about tour leading with MS: would my symptoms be ok? Would I get enough sleep? Would I be able to manage my stress levels? But I really had nothing to worry about.
What I realised, as I had done during my summer of travelling in Malaysia after my first year of teaching, doing what I love and being happy helps to minimise my MS symptoms. I love tour leading and I relish the challenges that it brings: thinking on my feet when the bus breaks down or there’s a strike or road blockade (welcome to Bolivia!); helping my passengers learn about each country and making special efforts to share hidden gems and experiences with them. To many people, this would be their worst nightmare, but for me, it is what feeds my soul.
As such, I barely experienced any of my MS symptoms during the entire 3 months that I was away, but that’s not to say that I wasn’t ill for the whole 3 months...it is South America after all!
The Andean Flamingo Tour
I ran two tours of 3 weeks each with 3 weeks downtime in between. My first tour was the Andean Flamingo which started in Lima before jumping in altitude to Cusco and Machu Picchu and then travelling overland to La Paz via Lake Titicaca. We then journeyed even higher across the Uyuni salt flats and slept at 4000m above sea level one night.
Now, it was this that made me pretty sick which came as a complete surprise as I had lived and travelled at altitude many times before. For the first time ever I experienced not being able to sleep because, as my breathing slowed down, there wasn’t enough oxygen in the air. Every time I would start to nod off my body would wake me up!
I also spent the whole of the next day vomiting my way across the altiplano which was not so fun! None of this was related to my MS though and it was all bearable and easily treated with coca tea, plenty of water and some electrolyte drinks.
The Andean Flamingo finished in the Chilean capital, Santiago. I love Santiago as it is extremely cosmopolitan and I even managed to find Korean food which made me very happy!
Machu Picchu
Cusco Street Art
Me and My Llama
Downtime 1- Challenge time!
During my first 3 weeks of independent travelling I revisited one of my favourite places in South America, which is Pucón in the Chilean Lake District. I wanted to go back to Pucón as I had never been there without a tour group and I wanted to have time to explore at my leisure.
I also wanted to climb the Villarica volcano which is 2,847m high. This was a challenge that I had set for myself to see if I could still push myself physically, even with MS. I’m not going to lie, it was absolutely one of the most terrifying things I have ever done in my life! Not because of my MS, but because I am petrified of heights and we climbed up most of the volcano in the snow with wind howling around us!
Reaching the top felt absolutely incredible though and the views were breathtaking. We even got to slide back down the volcano on little trays, controlling our speed with an ice pick (!). I felt so proud to have climbed to the top as not everyone in our group made it. In fact, it was an all female group that reached the top which felt pretty special.
View From The Summit
The Ascent
Villarica Volcano From Pucón
After Pucón I crossed the border into Argentina and spent a few days hiking around the lakes of Bariloche before heading to Puerto Madryn for a spot of whale watching and penguin colony visiting.
Finally, I arrived in Buenos Aires with a few days to enjoy the city and catch up with old friends before beginning the next tour.
Penguins at Punta Tumbo
Spring in Buenos Aires
Hiking Around Bariloche
The Pato Andino Tour
The Pato Andino tour is such a fantastic tour that winds through the Andes and takes in some of South America’s wildest landscapes.
We started in the Argentinian capital, Buenos Aires, and indulged in lots of steaks, before flying to Salta in the extreme North-West of Argentina. Here we had the pleasure of indulging in Argentinian wine during a day trip to the vineyards of Cafayate after winding through the Quebrada de las Conchas.
Our journey continued across the Andes and across the border into Chile and the town of San Pedro de Atacama before we traversed the stunning landscape of the Bolivian altiplano and the Salar de Uyuni. Thankfully this time I wasn’t ill!
The rest of the tour was pretty much the reverse of the Andean Flamingo and took in La Paz, Lake Titicaca, Cusco, Machu Picchu and finished in Lima.
La Quebrada de Humahuaca
The Salar de Uyuni
Sunset in Lima
What I learned from tour leading with MS
Both tours that I led were gorgeous and with fantastic passengers. It was quite poignant for me as I had finished my first year of tour leading after university quite abruptly due to family issues. So having the chance to return to South America to not only tour lead again, but also tour lead successfully with MS, meant the world to me.
It was even more empowering and reassured me that I had made the right decision to quit teaching. Tour leading with MS made no difference to my ability to lead successfully. In fact, because I was doing something that I loved and that brought me joy, my symptoms were almost non-existent. I was running around cities, walking lots every day and spending quite a lot of time at altitude and my body was strong. My experience of tour leading with MS has inspired me to continue to create a life and job that I love, because being happy and minimising stress levels helps me to manage my MS.
What brings you joy? Do you find that travelling or being on holiday affects your MS symptoms?
Let me know in the comments below.
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The pros and cons of running a business with MS
There are many pros and cons to running a business with MS. When I left teaching in 2017, I set up my own business as a freelance social media manager. Since then I have developed my skills and now offer full digital marketing services including digital marketing strategy, social media management, social media paid-for advertising, as well as blog writing and copy editing services too.
I am still freelance, but have developed close working relationships with other agencies and freelancers who I work with on a regular basis. I am even branching into the Chinese markets to support Chinese businesses to reach an international audience! I’m really excited about this as it means that I can put my Chinese degree to good use and my understanding of the different cultural nuances gives me an edge.
Alongside the digital marketing business, my fiancé and I also launched a Destination Management Company (DMC) for South-West England called Velius Travel. Velius Travel delivers private, bespoke, luxury travel for visitors to the UK in multiple languages. Having welcomed our first Russian group to Bristol in January 2020, everything was looking very promising. However, the minor issue of a global pandemic put somewhat of a spanner in the works!
In the meantime, we are in the process of pivoting and setting up an online shop instead, so I’ll keep you updated on how all that goes!
As you can see, I am generally pretty busy and spin lots of different plates and I do love it! However, it isn’t always sunshine and rainbows running a business for anyone, let alone someone who is living with MS. So I want to share with you what I think are the pros and cons of running a business (or businesses!) while living with MS.
Pros
Can create a routine that works for you
I love running my own business as it gives me the freedom to pursue and create the life that I want. I know how much money I want to earn and I know how many hours a week I want to work. So, I have created a business plan that enables me to do that.
Very early on in setting up my business, I understood that working full-time was not going to work for me. Working full-time hours doesn’t give me the flexibility to work when I feel good and take breaks or a day off when my symptoms are flaring. It ultimately doesn’t give me the time to take care of myself which is essential to managing my MS.
So, my working day routine looks something like this:
6:50 am Wake up
7:20am Go for a walk (aiming for approx. 10,000 steps) with a flask of coffee
9am Shower and breakfast
10am Start work
1pm Lunch break (this can range from anywhere from 30 minutes to 2 hours depending on my tiredness and concentration levels)
3pm - 6pm Work
Obviously, this varies, but it gives you a pretty good idea of what a working day looks like for me.
The important thing to know is that this isn’t what all of my Monday to Fridays look like. Some days I don’t work and other days I work for a few hours. It's my choice.
Obviously I have deadlines and tasks to complete for clients, but by communicating clearly and managing deadline expectations, I continue to maintain excellent working relationships with them and give my body the rest that it needs.
View of the Bristol Downs on my morning walks
View of the Bristol Downs on my morning walks
Can react to how your body is feeling
Reacting to how your body is feeling is so important. When I was teaching, my MS symptoms were the worst they’ve ever been and that was because I couldn’t listen to my body. There were non-negotiable deadlines and responsibilities that I had to meet which meant that I couldn’t have a nap, or sleep longer, or just not go to work and so my MS symptoms persisted.
Now, running my own business, I have created a flexible work environment that allows for rest. I have learned how to manage my workload to minimise stress. All of this means that, not only do I generally have much less severe MS symptoms than when I was teaching, but also when my symptoms do get worse, I can listen to my body and give it the rest that it needs.
There’s no one telling you what to do
Now this is a big one and for me and can be both a pro and a con of running a business with MS, or not!
In terms of managing my MS it is definitely a pro as it means that I can negotiate deadlines with clients and that I am fully responsible for creating a project timetable that works for both parties. Obviously, if I fail to meet deadlines that would be a problem (I don’t!), but what it does allow is for me to be the mistress of my own destiny. Once the timetable has been agreed, I then get to decide when I complete the work- on which days and at which time.
On a professional level, not having anyone telling you what to do can be a con if you let it, as it means that responsibility for completing any task lies solely with you. There is (probably!) nobody shouting at you to do something, particularly if it is to do with your own business development. So learning how to be self-motivated and have integrity to myself was a sharp learning curve when starting my businesses.
Can earn more and work less
When you run your own business, YOU decide how much your skill set and time is worth and which clients or customers will be right for you and vice versa. It requires you to be confident in the value that you bring to a client and being ok with a client saying ,”No,” if your fee is too high for them. It takes really believing in what you are worth to understand that while they might be saying, “No,” that doesn’t mean that you aren’t good or that they don’t value what you can bring to them; it is just that they don’t have the right budget to afford you and that means that they also weren’t the right client for you.
It does take time to work this out and internalise it, but when you do, magic happens.
I now earn 50% more than when I was a teacher and probably work 50% less hours. I intend to increase the amount that I am earning over the next few years with the development of the online shop and (hopefully!) the return of the travel business too. However, I don’t intend to hugely increase the amount of hours that I work. Again, I’ll keep you posted on how it goes, but that is the possibility that I am creating for my life!
I have time for walks with friends
I have time for walks with friends
Cons
These cons apply to anyone running a business, but are particularly relevant for anyone running a business with MS.
How I feel sometimes!
How I feel sometimes!
No sick pay
Not having sick pay is a daunting prospect when facing a relapse. Struggling to get out of bed, struggling to concentrate and knowing that you have work to complete is not a great situation to be in.
I know that this is one of the biggest reasons for staying in employment and I completely understand why. Equally, I have experienced a huge reduction in the severity of my symptoms since leaving employment. To be honest, I had no time off when I was teaching due to MS, it was always the odd day here and there with the flu! So not having sick pay never really factored into my decision of setting up my own business.
Moreover, planning for it and putting contingency plans in place can minimise the risk to your business if you do have a relapse or your symptoms flare.
If you don’t have a team, you are the weakest link
Not having a team is something that I am very aware of and is one of my business goals for the next year. Like I’ve mentioned, I already have systems in place to ensure that not having a team doesn't affect the work that I deliver for any clients. However, not having a team not only means that you are the weakest link, but it also puts a cap on your business growth potential as there is only so much work that one person can do.
As Allen F. Morgenstern said, “work smarter, not harder.”
Personally, I don’t just want to build a team because of having MS. I want to build a team so that I can focus on developing a business that can grow. By not having me at the centre of the business I am creating the possibility of growth, being financially independent and starting a family while still being a contribution to my clients and future customers and suppliers. This is something that I’m really passionate and excited about and I can't wait to make it happen in 2021!
The Volare Marketing Partnership Team
The Volare Marketing Partnership Team
I’d love to know how you find working or running a business with MS. Are you looking to make a change in your career or start a new one?
Let me know by leaving a comment below!
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My MS Body Mission
It happened- I am technically obese.
Now, I don’t feel obese and I don’t think I look obese– I’m still pretty ok with the way I look and I still feel attractive. However, the fact of the matter is that my BMI is currently 30.6 and that has tipped me over from being overweight to obese according to the NHS. This is not the MS body that I want, or have had in the past.
Me Now
Me Now
This is something that I don’t want to be and certainly not something I would normally want to share with anyone, BUT there is power in being honest with myself and declaring to the world that enough is enough. Also, I am now on an MS body mission!
Weight gain
Putting on weight has crept up on me since I stopped teaching 3 years ago. During the first year after I stopped teaching I put on 1 stone. This is not surprising given that I went from being on my feet 7 hours a day and running up and down 2 flights of stairs to get to my classroom at least 6 times a day, to sitting on my bum aaaaallll day. Plus, I only have to walk 3 streets away to get to my office. This created the perfect storm of sedentary life and even though my diet didn’t change, my weight shot up.
Taking action
I have taken action to reverse this continued increase in weight: I’ve done Slimming World (it works if you stick to it!); I started running (I do it for a bit and then have ended up with no energy for months!), but I’ve never been able to find a diet and exercise regime that I could stick to.
Between January and March 2020 I lost a stone and was feeling pretty good. I could fit back into my clothes comfortably and I felt like I was making good headway towards my goal of losing 2 stone in total.
And then the Covid pandemic hit.
Lockdown life
At the beginning of the first UK lockdown I found myself actually being far more active than usual. As we were only able to leave the house for exercise, I got into a really good habit of walking 10,000 steps each day and really enjoyed it.
Everything was going really well until May 2020 when I am 95% sure that I had Covid (it was when they were only testing if you went into hospital). I was in bed for about 10 days and it took me 7 weeks to get my energy levels back to normal. During that time I couldn’t exercise and completely gave up on eating well.
Eating and drinking whatever I wanted felt like the only thing that I had control over. This made it very easy to justify eating and drinking EVERYTHING. It also didn’t help that a very lovely lady called Kitty who lives on my street made cakes every other day for the entire street during lockdown– delicious but deadly to a diet! Not only did I put on the stone that I’d lost at the beginning of the year, I also put on another one.
Healthy, not skinny
Now, I’m not sharing this because I think there’s anything ‘wrong’ with being the weight that I am. There’s no judgement about it, the only thing is that it is officially “not healthy.
I’ve realised that my problem with losing weight is that I’m actually happy with how I look which has meant that motivating myself to lose weight purely out of vanity hasn’t worked (and nor should it). What I’ve been missing is really getting clear on why I want to lose weight.
Through a recent coaching seminar that I’ve taken part in, I’ve created the possibility of being healthy, not skinny. I don’t really care how much I weigh, but I do care about being healthy. The reality is that the amount that I weigh right now is not healthy. I want to be healthy to manage my MS, I want to be healthy to avoid future health problems and I want to be healthy so that my body can nourish a baby in the near future.
My MS Body MIssion
So, I declare here and now that I am on a MS body mission: a mission to be healthy and strong. My mission is to weigh 11 stone 2 pounds by the end of 2021. This is the official healthy weight for how tall I am and it is also the weight that I have felt the most comfortable, confident and fit being (I last weighed this in July 2017).
Me in 2017
My challenge in achieving this mission is finding the right diet (I’m currently testing out Veganuary) and also working out an exercise routine that pushes me enough, but also doesn’t floor me. I’m looking for an exercise regime that I can consistently maintain, rather than something that risks putting me in bed for weeks and undoing any gains that have been made.
I would love to hear how you keep fit and stay healthy with MS.
Any tips and advice is much appreciated! Please get in touch in the comments below.
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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
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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!
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