My Daily Thoughts as a Spoonie

Today marks one year since the doctor confirmed that I have lupus. Happy anniversary to me! It’s had some ups and downs – A&E, multiple doctors, medicine increases and decreases, so many blood and urine tests, and countless colds.

But looking back, I’m so pleased things have gone well since my diagnosis. Things could be worse, they can always be worse. I have a fun life, amazing friends and a supportive family. I can laugh at lupus even when it annoys me.

Just for kicks, here are common thoughts I have regarding having an autoimmune disease:

Do I have to get up?

My bones hurt, how can bones feel pain?

Omneprazol before food…

I don’t feel like breakfast…

No Facebook, I don’t want to see photos of me before the prednisone

I used to hate those photos…look at my face now

You’d think after a while I wouldn’t choke whilst swallowing multiple pills at a time…

Urgh I want a nap

Argh, nearly forgot SPF

Should I bother with foundation, or rock the butterfly rash?

Do I have my keys?

What else do I need?

My right hip hurts again, is this normal now?

Did I take my meds?!?

Oh yes I did, they tasted horrible

Can I eat lunch yet?

*Taking notes* Did that really just take me 5 attempts to spell…

Is this brain fog, or am I just becoming stupid?

Oh my god what is that person’s name…

So proud of making a healthy lunch

I want coffee…

It’s been an hour since lunch, why am I hungry again?!

Need coffee…

Knee joints are hurting, need to stretch

I deserve a snack.

Want crisps. Can’t have crisps.

Need to remember to bring snacks with me. Carrots. Protein balls.

Need to make protein balls…

My stomach has become a bottomless pit

What shall I make for dinner?

Can it just be avo on toast? I’m sleepy…

Need to drink more water

Might actually fall asleep by 11…

Argh, nearly forgot my night meds

Why do I feel awake now?

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Feliç la Diada de Sant Jordi

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In England, today is our national day of St George. It is also Shakespeare’s birthday (and death day). We don’t really celebrate, but in Catalonia St George, or Sant Jordi, is also the patron saint.

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They use the story of Sant Jordi slaying the Dragon and rescuing the princess. She gives him a book to say thank you, and he gives her a rose. So, on this day men give roses and girls give books. Kind of an unfair deal in my opinion, but still sweet. Any day that celebrates books is okay to me. Plus, I love giving novels as gifts, if it’s one I’ve read and love, then to me it’s a very personal gift. Everywhere there were stalls selling books and roses, and the profits of the roses go to charity. A sweet way to not commercialise a holiday.

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Casa Batllo was also decorated for the day. It was also promoting blood donations and had a bus outside. I’m not allowed to donate blood in the UK, due to receiving a blood transfusion a year ago. I had that in Spain and I’m a rare blood type so I was hoping I could to return the favour. The person in charge seemed very unsure, and it was a long wait before you could even see the doctor to be questioned so maybe I’ll try another time. But if you can donate – do!

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Faro, Portugal

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The last stop of our trip was the southern town of Faro. The train from Lisbon was delayed and we had to deal with a creepy middle aged man leering at my friend, but anyway, when we got there it was simple walk to our hostel. Baixa Terrace Hostel was our least favourite – the room was cramped for 6 people, security seemed a little lax and we skipped the included breakfast the second day, but for a small and not so touristy town we got what I expected.

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Our main goal for Faro was to sunbathe on the beach. The Bus 16 goes every hour and takes you to and from the beach (and airport) in about 30 minutes for 2.25 euros.

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As a lupie warrior I had to be extra careful with sun-cream, but still ended up burnt. The beach was nice with soft sand and a few cafes and shops.

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The town of Faro was nice for a small place, and definitely more local than Porto or Lisbon. It had some great restaurants and cafes, both local cuisine and international. We ate Mexican and drank margs and were given free tequila shots at Taco y Tequila, but also ate amazing Portuguese food at A Venda, and the cafes provided great breakfast and snacks.

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Due to me being burnt my lovely friends decided that instead of revisiting the beach before our evening flight, we would instead explore the old town.

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After the trip my Dad decided to tell me that in Faro there is a “Chapel of Bones” which I am so disappointed to have missed.

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It is definitely a place you can explore in a day or two, but it was very friendly and a nice end to our relaxed trip.

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Our last snack before the airport was tea and the local natas – so good!

Faro was sweet, and Portugal was lovely. I’ve never visited the country before, but I am so glad I finally have.

Lisbon, Portugal

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The second destination of our trip to Portugal was the capital – Lisbon. We caught the train from Porto which was less then 20 euros for those under 25 (about 25 for those older), and took about 3 hours. Our hostel – Lisbon Lounge Hostel was a short walk from the train station we stopped at. This hostel was clean with nice social areas and rooms. We also took part in the family dinner for 10 euros, and the bar crawl for 12. THAT was messy but fun… The breakfast provided included crepes, something I had never experienced at a hostel before!

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My favourite thing about Lisbon was the views. This one is blocked by some port wine sangria of ours, but the hilly nature of Lisbon provided us with some amazing spots to enjoy our drinks.

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We only had two days in Lisbon so spent it exploring the city, however also recommended is to take a day trip to the nearby Sintra, which also offers amazing sights.

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Again with the drink and the views… The local cuisine of Portugal is heavily focused on cod. The street our hostel was on seemed to consist of nothing but cod restaurants. Also a necessity to try is the local natas – an egg custard tart that goes amazingly well with cinnamon.

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Before our train to Faro we went up to the castle. 5 euro entry for students and 8.5 euros otherwise. The views from the castle were incredible. The castle itself was small and there was little information, but it was fun to walk around. Also worth getting there early, we did and got in easily but when we left the queue was reaching all the way down the street.

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Lisbon is a very small capital, you might even forget it is the capital. But the people were for the most part friendly (like in all the cities), and also like the other cities it was super relaxing to wander around and just enjoy the atmosphere. It has been on my travel bucket list so I am happy to have ticked it off, but also would happily return one day!

Porto, Portugal

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I am just back from a 6 day trip to Portugal with two friends. It was a beautiful break between deadlines for uni (although now I have to knuckle down again!). First stop was Porto, which was possibly my favourite city we visited. It was small but picturesque, a perfect long weekend getaway.

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We stayed at the Bluesock Hostel which is a stone’s throw away from the river, and very centrally located. It was a good price for a clean and modern hostel, not much of a kitchen but a decent continental breakfast. The rooms and bathrooms were fine except for the plug sockets not working very well.

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Porto is famous for its wine – port. So we went on a tour of the most famous cellar – Sandeman, for only 10 euros you gained some knowledge and sampled two of its wines. You also should try a porto tonic – port wine with tonic water!

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Everywhere we went the views were amazing! One thing we didn’t get to see was the Livraria Lello bookstore, because the queue was loooong and we didn’t realise you had to pay entry (4 euros). Disappointing because I was looking forward to getting lost in there, but I always love a reason to return to somewhere I love.

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Porto is also famous for it’s local sandwich – the francesinha. It is made up of many kinds of meat including beef, ham and sausage, and then topped with cheese and tomato sauce. Served with chips and sometimes an egg. Will not lie, it was not my most favourite of things to eat. It left me feeling quite ill after. After trying we then discovered a cute tearoom with desserts which suited us much more.

I loved Porto, I also got to see a friend from my Burgos days who was also visiting, which was a great surprise. It was chilled but evidently also knew how to entertain. A great start to our week!

Who says lupus can’t look good? HA..

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Currently half way through a trip to Portugal! It is super sunny and warm so I’m applying suncream a few times a day, and I bought this “stylish” hat to protect me from the suns rays and avoid becoming ill ill, as the sun can leave me with extra fatigue and joint pain and I need to enjoy my time with friends! The hat has been squashed and I look ridiculously but oh well. Never take yourself too seriously, except for your wellbeing.

Nomad Songs

Every life, every moment deserves an awesome and fitting soundtrack.

Although I think calling myself a nomad is a little pretentious, and not true, I haven’t really lived at “home” in a long time. Nowhere I can think of as permanent, and when half of my belongings are in boxes somewhere in Yorkshire, and I am in Spain, and in a few months time I’ll be somewhere else, at times I can feel a little lacking in roots. But I don’t complain, I love the feeling of freedom and being able to decide my life on my terms.

Although I am expecting to be living at my Dad’s for a while after graduating whilst I job hunt (he seems thrilled), I like the idea of getting work experience in different places before I find a city to truly call my home. We can dream..

Or alternatively, I will just save every penny and save my free time for travels.

A while back I wrote a post Wanderlust Playlist for a soundtrack to accompany the love of travelling. But nomad is different, for a nomad is more of a permanent wanderer who never stays in one place for too long. These are songs which I feel encapsulate the moments anyone feels like a nomad, for any reason. I like songs that suggest home can be found anywhere, in the people we meet. To me thats love (friendship, romantic, familial etc), and thats what makes any nomad or wanderer feel safe and happy.

Home – Gabrielle Aplin

House by the Sea – Moddi

People Help the People – Birdy

Hopeless Wanderer – Mumford and Sons

Wanderlust – Frank Turner

I am Disappeared – Frank Turner

Home – Phillip Phillips

My Silver Lining – First Aid Kit