The perks of having lupus

Okay, so it’s not great having an incurable, life threatening, life changing disease that can control your life and ambitions, affect your relationships and can make day to day life a struggle. It actually sucks. It’s even worse when you feel like people don’t understand, which is a top complaint from anyone living with a chronic illness. It can affect your mental happiness as well as your physical well-being, and I see this from blogs I’ve read, vlogs I’ve watched, and the occasional forum/tumblr post ect.

BUT.

Sometimes I’m left wondering if these lupus posts are benefiting anyone, especially the writer. The ones where it seems to be nothing but ranting about having lupus and all the complications that come with it. Now, I love having a good rant. It’s part of the reason I started this blog in the first place, and I like using it so I don’t have to offload so much of my lupus worries onto my friends. I know they’ll listen, but sometimes I want to pretend everything is normal again with them.

But I’m a firm believer that if anyone focuses too much on the negativity in their life, they themselves will only feel negativity and that’s not healthy. I like to focus on the good aspects of things, and when you’re stuck with something for life, this is really helpful. So can good come from lupus? Only if you make it so.

Friends/Family Support

This I have found to be the most important, and what has really helped me deal with the diagnosis. From the blog posts  I’ve read, it gives the impression that often there is a complete lack of understanding from your closest circle. They don’t mean to be so, but no one really “gets it” unless they have it. It can make people with lupus feel alone, and in some cases people have lost friends because those people just didn’t care. Luckily, I have experienced almost the complete opposite. Sure, there have been a few friends who never bothered to ask me how I was doing when they knew I had been in hospital and had to quit my job. And that hurt. But that was only a handful, instead I have never felt luckier or more appreciative of my friends, both old and new, who really were there for me. And I don’t think I could ever thank them enough. I was also cautious to tell new friends I have made since my diagnosis, I didn’t want that to be one of the first things they learnt about me. But when I told people, I never got any of the comments, like “but you don’t look sick”, or “maybe you should try changing your diet” that seems to be expected. Instead they were fully understanding and supportive straight away. So yeah, lupus sucks. But you realise people are there for you, and that you’d go mad without them. And you love them even more for just being there.

Doctors take you seriously

Before diagnosis some lupus patients are suspected of hypochondria, but I’ve found since being diagnosed, no matter what complaint you go to the doctor with, they cannot ignore it “just in case”. Which is pretty good really. Even if I’m worried I’m wasting their time, they’ll never let it show. Even whilst studying in Spain, I’ve had trouble with the bureaucracy and it’s affected my access to healthcare, but they wouldn’t let me be unable to see the doctors I need (thank god). I know a lot of people have complaints about doctors, but they know what’s important and their main job is to make sure you’re okay. So you can go into an appointment knowing they will pay attention to you, and that whatever you say will be taken into account.

Kicks you into well-being

I liked to think I was pretty healthy before I was diagnosed. Always ate healthy: fresh produce, and home made meals by yours truly (so it was annoying when I was undiagnosed and suffering that so many people just assumed I wasn’t eating properly). I even joined the gym (until I got so ill I could barely drag myself out of bed let alone to do a session of zumba or cardio). But with lupus a healthy lifestyle is more important than ever. I’m now even more conscious of what food I buy. I make sure I’m getting all the necessary nutrients, I make packed lunches of pasta and salads for long days at university instead of buying god knows what at the cafeteria, and although I’m not a gym bunny yet, I make sure I stay active by walking most places. Your body is a temple, even if it is under permanent restoration. When your health becomes your number one priority, you realise how delicious healthy eating can be.

A weird kind of invincibility

There can be times when you feel totally vulnerable. Your body is in constant battle with itself, and the littlest infection puts you at high risk. But despite facing constant setbacks, the overload of pills you take each day allows you to live each day. Every achievement becomes so much more meaningful when the odds are against you.

You appreciate things more

Time with friends, time with family, concerts, walking about in the sun, late nights and long days. These are a few of my favourite things (or at least what I appreciate more knowing they take a toll on me more than they used to). The fact you can still live a normal life despite the doctor appointments, hospital visits, tests, medication and general “approach life with caution”, means every good moment is a lot more meaningful to you.

An excuse to nap

Because who doesn’t love to nap? At least now I can have a nap and not feel guilty.

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Geneva, Switzerland

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When a friend asked me if I wanted to accompany her to a weekend in Geneva, how could I say no? I had never been before but I had been told Switzerland is insanely beautiful. So the day after we got back from Sevilla we met again in the airport, for a new adventure.

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Although cold enough for coats, the weather was sunny and glorious. It was a pleasure to walk around the city, take in the sights, and relax in the wintery sun.

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We researched what food the Swiss are famous for: unsurprisingly it was mainly cheese and chocolate. If you ever visit, do not say no to fondue. It is hardly healthy, as served with potatoes and bread and not much else, but it is the best thing for any cheese/carb lover. We had it twice, the first night we went traditional, but on my last night we tried goats cheese fondue which was amazing.

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It is a city of scenery: we were surrounded by the mountains, and the lake was a beautiful clear mirror. The parks were heaven to relax in, and the architecture was as beautiful as Parisian architecture.

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Top sights: the cathedral was a interesting mismatch of architecture, and of course seeing the United Nations was inspiring. We couldn’t go on a tour as it was the weekend, but that is something on my bucket list!

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There are also many museums: we saw the museum of historical art, but the Watch museum was highly recommended, and there was also a Voltaire museum and Red Cross museum which I would love to see if I return.

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A few tips: Before you leave baggage claim at the airport there is a machine next to the train ticket machine which provides free bus tickets from the airport. Tbh no bus driver ever checked any ticket, but it is useful to have just in case.

Everyone knows Switzerland is expensive. Meals, either lunch or dinner can cost between 20 and 40 francs, and that’s if you pick the cheap options. So booking accommodation in which you can cook, or buying breakfast and lunch to eat in the beautiful parks is a wise option as it costs about a tenth of restaurant prices.

Usually when I visit an expensive European city I budget about 50 euros a day, francs are nearly the same rate but even double this was cutting my budget fine. I remember once meeting a guy who claimed he spent £18 on a hot chocolate in Switzerland. Wherever he went it must have been the greatest hot chocolate in the world, because you shouldn’t expect to pay more than the equivalent of £5 for a hot drink. Still expensive, but not unbearably so. Plus the coffee tends to be pretty good.

Geneva isn’t large – the bus system is good, but it is easy to walk around and impossible to get lost. It was the first time in nearly two years I travelled to a city that I haven’t lived in the country, (in other words not the UK or Spain) so I was excited to experience it again. And to try and remember my high school French, but I still kept saying “si” instead of “oui”…

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I fell in love with Geneva. It was so relaxing, and beautiful, and a definite recommendation to anyone. In general the locals were friendly, we felt very safe even when walking home (together) late at night, waiters and waitresses were very accommodating, and our Airbnb flat was great and in a brilliant area for both bars and peace and quiet (and also had a cat!)

My university is organising a study trip to Geneva to see the United Nations. Although I don’t think I’ll return so soon, it is definitely a city I’d be more than happy to see again.

Sevilla

I have visited and written about visiting Seville before, and just less than a year later I found myself retracing my steps in the city with new friends.

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We had just finished with exams so it was a welcome, relaxing break to chill and enjoy ourselves.

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We explored the cathedral, climbing to the top and exploring the grounds.

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Walking around a park, I came to a happy little nostalgic remainder of last year.

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We then visited the beautiful Alcazar, which is always worth a visit.

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After being in Catalonia for so long, it was nice to revisit Andalucia and the south of Spain!

Weirdest Food I’ve Tried

Chicken Hearts

A delicacy in Brazil, and popular at their barbecue restaurants. I won’t say I particularly enjoyed it – the texture wasn’t to my liking, but the smokey flavor it was given was pretty good.

Snail

Only a recent try, something I’ve avoided until a friend was eating them and offered them I was surprised by how delicious I found it – I dare say it was nicer than mussels, which I was expecting it to be similar to.

Absinthe Chocolate

Someone was sharing them on a college trip to Prague I made. Not my favourite addition to chocolate, after all it was absinthe, but fun to taste. However I think if I was liquor in my chocolate I’ll stick to the classics…

Homemade Chilli Vodka

My parents were having a party, and someone bought a bottle of the stuff from a pub they worked in. Urgh. I only had a sip (I was young and being watched by my parents…), but it burnt like nothing I have had before. The spiciest thing ever.

Croquet Madame

Not a weird food, after all it is cheese on toast, but when I visited Paris with a friend we chose this and Croquet Monsieur because it was cheap and sounded French. The fact that the Croquet Madame gets its name for the egg on top still makes me laugh to this day.

Snacks around the World

The best thing in life is food. I don’t know anyone who doesn’t love eating, and trying new flavours can be one of the best experiences in life. Sometimes our travels are also defined by the food we try. When I first visited Brazil my dear Granny asked me to write her a letter about my experiences – my letter mainly consisted of me describing the food I had eaten. Not what she was expecting…

Sometimes a country and its memories can be defined by the food we buy on the go during our exploring. There are many tastes that take me back to specific places, but these are snacks that I would recommend to anyone if they find themselves in the country!

Spain – Tortilla

When the Spanish serve a delicious warm slice with a chunk of bread…. who cannot love the extra carbs? Any typical cafe should be able to serve one, but as well as trying the original you also have to try one with the many flavours they add – ham, cheese, pepper…the list goes on.

France – Croissants

Obviously. One trip to France I ate so many I still don’t like them as much as before, but they are a staple to try if you’re visiting the country. Any pastry snack really from any bakery is sure to deliver.

Italy – Gelato

Gelato is heavenly. Is there anything else to say?

USA – Donuts

Another snack I over indulged in thus ruining my appetite for a while. Years of watching The Simpsons has led me to believe it is the best place to get donuts, and you have to try Dunkin’ Donuts.

Brazil – Cheese Balls

Such a simple concept, but so good. And I’m fairly certain these are what most people fall in love with when visiting the country. I’ll admit it was not the food that I adored about Brazil – most of it is far too salty or sugary for my liking, but these my carb/cheese loving self felt like they were made for me.