So I’ve Been Diagnosed with Lupus…

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Story time! This might be a long one, with a bit of whinging so I will understand if you skip this post!

During the winter of my last year at uni, I became concerned when I started developing joint pain and swelling that would come and go in pretty much all my joints. The pain would often wake me up on a night, I couldn’t always bend my limbs when there was inflammation, and when it affected my knees it got to the point walking, standing up and sitting down would leave me in tears. This became worse over the months leading to spring, but naturally I went to the doctors before. My mum has arthritis so they ran some blood tests to see. At first I was told I had low vitamin D levels, (and “slightly anaemic”, which I’ll come back to) so I was told to take supplements and have another blood test in a months time.

The second blood test, when the doctor rang he sounded a lot more concerned and referred me to see a rheumatologist. Which was a little worrying. I made my rheumatologist appointment, but as anyone in the UK will know that’s around 6 weeks waiting time. In the meantime I got a very strange eye infection. Only one eyelid swelled up, there was no weeping or anything, but I went to an out of hours go who prescribed antibiotics. Then it came back in the other eye. This time I saw a doctor during surgery hours, so she could access my data. That’s when she told me my blood tests were showing symptoms of lupus, and she told me to go to A&E to get the eye seen to. I spent a lovely day having a CT scan, X-Rays and countless blood tests. (Shout out to the NHS staff for working such long hours but were always friendly and reassuring.) I also later had to have an MRI scan and saw a neurologist, then an ophthalmologist for the eye. I was prescribed steroid eye drops, and after it came back a couple of times the eye infection was finally sorted out.

By then my rheumatologist appointment had come up. With even more X-rays, blood tests (they once took seven vials and I fainted), and even a bone scan. This still took time, and from when I first saw the GP about my joints in January last year, the results came at the end of August and were inconclusive. The doctor had ruled out lupus, but didn’t know what was wrong with me. Problem was then I was making plans to spend a year in Spain, and with reassurance that I’d be okay I made those plans. They told me Spain would help my vitamin D levels, but I came to Burgos where the weather is similar to England… Oh well…

The joints were still unbelievably painful, so I was prescribed anti-inflammatory tablets which did not work 100%, but certainly eased the inflammation and pain. And off to Spain I went, occasionally experiencing inflamed joints but generally okay.

Until recently, when I fainted during a class. I’ve always had problems with fainting when too hot, dehydrated or if I haven’t eaten. My mum and grandfather have low blood pressure and suffer from the same so I always assumed it was that. But that day the fainting was worse than ever before, and an ambulance was called and I spent another day in A&E having blood tests, X-rays, but they also looked for a blood clot on my lungs, finding none but saw something wrong with my heart. It transpored that I was seriously anaemic (note: not “slightly”)  and had an iron drip administered straight away. Then I had to see a haematologist, who told me to take sick leave until he had found the cause of my anaemia. So lots of hospital visits and blood tests, and he noticed my kidneys were showing signs of infection. This combined with my other symptoms, he said I was showing markers of an autoimmune disease, and a year later I was looking at lupus again, only this time it was certain.

The biggest concern was my kidneys, and I’ve had a biopsy to see what damage has been made. I’m on steroid tablets and autoimmune suppressants to get rid of the kidney infection and to fight the inflammation around my heart. I’ve even had to have two blood transfusions while in hospital because my haemoglobin count became too low, as my bone marrow is affected which is what causes the anaemia and joint pain.

So what exactly is lupus? Lupus, or SLE, is an autoimmune disease, which the way I understand it, is that my body has too many autoantibodies that cannot recognise what is a virus and what are my organs, so it attacks the organs. It’s different for everyone with lupus, but can affect the kidneys, heart, lungs, brain, and skin. Kidney failure and heart failure are common problems that result from lupus if left untreated.

Thats the scary part. Lupus can most certainly be fatal if left untreated. 20 years ago little was understood about the illness, so if you were diagnosed you were basically given a short life span. Thankfully these days doctors understand it more, and although there’s no cure, it can be controlled and managed and most sufferers can expect long lives. So fingers crossed!

And how does one get lupus? Nobody really knows. They think genetics play a small part, but that it’s mostly environmental. It turns out my blood type (B-), is susceptible to autoimmune illnesses such as lupus, but hormonal changes, particularly in girls, stress, infection plus other things can trigger it. It’s treated mostly with steroids, autoimmune suppressants and even chemo, and regular check ups throughout the persons life.

It’s going to be life changing, that’s for sure. It makes fatigue worse, I’ll be so often on medication, and sometimes general day to day life will be difficult. The joints still slow me down on painful days, to the point sometimes using stairs is awful. I’m now actually afraid of my own body, and every twinge will make me panic. I’ve been ordered off the pill, I might have to return to the UK early, and the doctors have even suggested postponing starting a masters in September. I don’t want to! I’ve had offers from all four places I’ve applied (Leeds Uni, York Uni, Queen Mary and IBEI in Barcelona). My heart is set on Barcelona but my dad is advising me that Leeds or York will be more ideal as I will be less than an hour away from home, and family. But I’m determined to not let this affect my life choices. The worst thing I can do I think is restrict myself and create regrets. It’s unfair to have lupus, so I want to make sure I still make the most of this one life we get (little cheesy). Chronic illnesses can affect your mental health, so that’s something I want to take care to not let it get me down too much. Plus I have more faith in the Spanish healthcare system these days… It took them 3 weeks to diagnose what the NHS couldn’t in 7 months!

Another thing that bothers me is, as it’s a chronic illness, it means the person suffers for long period of time, basically for life. Luckily normal life can be managed, and people might not even notice you’re ill unless you tell them. It’s known as an “invisible illness” for these reasons. Sadly that can mean people’s understanding may be limited. I’ve clearly had lupus for a while, and looking back the symptoms are more obvious. But some people just seem to think it’s not that bad, or “you don’t look ill” (cue that Incredible Hulk/Avengers meme: “that’s my secret…I’m always ill”). It’s been hard to explain to people that sometimes my joints hurt so bad I can’t stretch my legs out in bed. Luckily now I have a name to the illness, but even so during normal days if I need a little help or understanding it might not always be there… Generally I’ve been amazed by the support I’ve had, particularly in Spain. Friends here and back in the UK have been so good to me, I’ve never felt so lucky to know such good people. Family have flown out to see me, others are constantly asking for updates. Even work have been great at understanding, thank god! But sometimes people seem to not understand what pain I’m in, and I’ve come to realise the hard way it’s a factor that will affect relationships. Good thing is I can quickly suss out any guy who won’t be there for me, because I will clearly need a lot of support from time to time. Which I need to get from myself, and those I can fully trust. The medication is going to have unpleasant side effects: weight gain, moon face and more prone to infections. It’s not going to be pretty! But living is more important than prettiness, I have enough kindness and wit to win people over I think 😉 (Jokes I’m just going to get 10 dogs and a cardboard cutout of Johnny Depp…)

So I think I’m going to conclude now. This is mainly to get out what’s been on my chest and at the back of my mind for so long, and it feels good that I can finally focus on what it is that’s wrong with me and not what might be wrong with me. If anyone’s wondering why I chose a photo of me with Mr Bean, it’s because of this: That was taken two days before my biopsy, I was in Madrid with my sister and Dad. Taking it easy, but still able to enjoy myself. And, although it’s really a look of fear of the Spanish speaking Mr Bean, I like to think I look generally happy. Because although this diagnosis is getting me down, I still am happy. I’m surrounded by good people, in an amazing country and I have an exciting future to look forward to. And although during the time of the picture my kidney was hurting, and I was scared and troubled, it shows that life can still be enjoyed to the fullest. Mr Bean wouldn’t have realised I was ill, so being diagnosed with lupus is not the end of the world. Times will be hard, but times will be hard for everyone for various reasons. I’ve got some crazy adjustments to face, but I like to think I’m quite an adaptable person, so…*warrior cry*

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Why I don’t quite feel like an adult

I’m pretty sure no adult ever really feels like an adult, we kind of just guess and stumble our way through life, keeping secret from the kids that we have no idea what we’re doing. Especially when we’re having to teach/fix/organize etc something for the kid… Just last year my dad said to me how he doesn’t know what he’s doing most of the time. Oddly comforting, knowing that one of the people who raised me and has guided me through life is also a bit like “what the hell am I doing…”

 

My lack of feeling like an adult I partly blame not being settled anywhere yet for being somewhat responsible. When I don’t plan on living anywhere for more than a year it’s hard to invest in adult things like decanters, slow cookers and spice racks (although I do really want a spice rack one day…) Half of my belongings are in boxes (and my dad has recently moved house so even more things are in boxes) on a permanent basis.

 

So here is a list of things that I regard as adult things, but are things I’m not very good at…

 

Owning a Clothes Horse

My laundry is current drying on clothes hangers in an open wardrobe. No joke, but hanging clothes this way actually helps with not ironing. Because that’s something else I don’t do… But one day I should really invest in one (as opposed to stealing flat mates as I have done in the past), because they are bloody useful things.

 

Spring Cleaning

I hate cleaning, I really do. I can understand why people love a spring clean, because it feels great to be in a fresh and clean room. The outcome is great, but the process is so boring I usually do it in halves. Start cleaning, then I get bored halfway through and usually distracted, so the rest has to wait.

 

Mornings

Teenagers are supposed to sleep in til late, and adults are supposed to grow out of this. I have not as of yet, and I’m pretty sure I don’t function properly until 11am/noon. I expect if I have children one day, their early bird nature will force me to become a morning person, but until then I will sleep half the day away.

 

Baking

This is something I want to pick up, but haven’t gotten around to. I love cooking, that I can do, but the last time I baked was a Christmas cake my dad bought that came with all the ingredients pre-prepared in a box. Three years ago. Oo I also once baked a earl grey cake with a friend. Two years ago. I also currently have a packet of mug cake in the cupboard. Yes, the kind you make in the microwave.

 

Talking on the Phone

I’m pretty convinced this is something all adults hate. I will avoid it as much as possible (family and friends excluded). This also includes ignoring the phone when unknown numbers ring. Because it’s usually sales people anyway… But making appointments, ordering take-aways, customer service… always better if can be done online! Also in Spain when they call me and start speaking in Spanish I get confused and then they start yelling at me as though that’ll help me understand, then they hang up. It’s terrifying.

 

Asking my Dad for Advice

Before any decision like what job to take, what to do with one’s future, or whether it’s okay to cook chicken that’s been a few days opened in the fridge, I always ask my dad first. (I’m pretty sure most of my texts to him whilst I was at uni were “Is it okay to eat…?”) I could be 50, and he’ll be in his 80s and I’ll still be asking him for his opinion/approval/advice. So shout out to him for answering all my questions, both stupid and serious, with all the patience in the world.

Best Places to Wine and Dine in Burgos

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Perhaps one day you will find yourself in the cold, northern Spanish city of Burgos. I’d certainly recommend a visit: its cathedral is a UNESCO World Heritage Site, and its second main attraction is a fascinating Museum of Human Evolution, and its certainly pretty enough to make you want to spend the day taking hundreds of photos.

 

But, as with any place you visit, in my opinion one of the most important things to consider is the food. Where to eat? Where to stop for tea/coffee? Nobody wants to force down second rate tapas, when the patatas bravas of your dreams are just around the corner. So I have compiled a list of my favourite places I have visited throughout my time here. And even though I’ve visited some of these places many times, I still had to double check a few names (I’m definitely a know by sight, not by name person).

 

Cafe Espana

Calle de Lain Calvo, 12

I thought I’d start with the cafes I’d recommend, and no better cafe to start with than one I fell in love with almost straight away, and have since recommended it to nearly everyone who will listen. It’s one of the oldest cafes in Burgos, founded in 1912, and I love it simply because it has a HUGE selection of delicious teas, all served loose leaf in teapots with adorable vintage teacups. It also have a wide variety of coffees to choose from, and alcohol if you fancy. It even does coffee and tea liquors. That’s right: tea with liquor. I’ve had their Irish tea a couple of times and it is surprisingly delicious. Also on the menu are amazing cakes, and the staff are super friendly. On Sundays it does live poetry I am yet to attend, and sometimes has live jazz (not sure what day though).

 

Cafe Ibanez

Paseo Del Espolon, 16

Truth be told I’ve started boycotting this cafe because they stopped stocking chai tea, which was why I frequented the place. I don’t think they miss me, but unless you’ve a craving for chai tea it is still an excellent cafe for different beverages and sweet treats. It has the perfect location by the river, and I love it for always playing smooth jazz in the background. Its atmosphere is very relaxed (even if the service is typically Spanish slow), and it is also reportedly the best place in Burgos for churros. I’ve had them (during my first month here when I tried to order a muffin and ended up with churros somehow), they are good!

 

Mis Caprichos

Calle Santa Clara, 13

Owned by a Frenchman, this is the perfect place to go to when in need of wine and cheese. Although it is south of the river rather than extremely central, it is still worth venturing to as it has a bright atmosphere, and who can resist an excellent choice of wine, cheese, and more? The owner too is a friendly guy, which makes a place all the more welcoming to visit (plus I like seeing the owner present in a bar/restaurant, to m it shows they really care for the place and delivering a good time to customers).

 

La Parilla

Calle Huerto del Rey, 18

If you fancy tapas that is basically delicious meat, look no further. This Argentinian style bar does amazing tapas and pintxos, and although it looks swanky and the food is great quality: the price is extremely satisfying too! I’ve had both tapas and proper meals there, and although I’d recommend the tapas over the meals for quality, I’ve never been disappointed. As well as beef it also does pork and seafood based dishes, and vegetarian options can be found.

 

La Mejilonera

Calle de la Paloma, 33

This place is usually crowded, which is annoying for finding a seat or even a space to put your food and drink, but it also means it’s a place popular with the locals for a reason. I like coming here for their patatas bravas, or their mussels (tried, tested and approved both the mussels with the bravas sauce, and with hot butter). It’s cheap, with good wine, and the food is served very quickly but still very enjoyable.

 

Viva la Pepa

Paseo del Espolón, 4

One of my favourite restaurants in Burgos. It has a good choice of international and vegetarian dishes for those who are maybe less keen on morcilla, chorizo and jamon based dishes (those are still available of course). It also has excellent choices for the typical Spanish Menu del Dia, my favourite dishes include a salmon wrap and their Wok style dishes. They also serve a-maz-ing smoothies and frappes, and the restaurant itself is light and airy with friendly staff.

 

La Favorita

Calle de Avellanos, 8

A rather fitting name, this restaurant is pricey but sitting down to eat is worth it! When I have eaten there before with my mum and her partner, one waitress took the time to explain to us the different meats from a pig (with free samples) and explained the menu to me in simple Spanish so I could translate. It’s that level of kindness that I think characterises the Spanish.

 

Gaia

Calle de Fernan Gonzalez, 37

An unusual choice for me, because this is a vegan restaurant and usually the word ‘vegan’ has me running far, far away. However even the keenest meat eater will enjoy the amazing food here. It’s only open Mon-Fri during the lunch hour, which can mean a long queue and maybe you’ll be asked to come back in half an hour or more, but for 10 euros you receive a 4 course meal that changes regularly, but never disappoints. The owners have created their recipes from their travels and local dishes, and its a small but friendly place with a cosy atmosphere.

 

Casa Ojeda

Calle de Vitoria, 5

I dined here once when I first started living in Burgos. Unbeknownst to me at the time it is one of the fanciest restaurants in Burgos. Whilst I felt like the platos combinados I shared with a friend left a lot to be desired, the tapas we also ordered were perfect. It was also the first time I tried to Burgos morcilla (black pudding), and it was sooooo good. It was a very relaxing place, with friendly staff too which always helps to meal to be enjoyed more. Not as cheap as some other places to eat, but worth a visit! (It also has a delicatessen next door which always leaves my mouth watering).

 

So there are my places to wine and dine in Burgos! There are a few more places I considered adding to the list, but these are the places that have left me with the best impressions. Of course, sometimes it is fun to ignore any guides or recommendations and just discover for yourself 😉

 

On a totally unrelated note, does anyone have any tips for increasing memory on WordPress media? I have quite a few photos to upload from recent trips and no memory left 😮 And of course I can’t have my blog from now on a pictureless scene, how boring. WordPress recommend upgrading to Premium but that’s about £50 a year and I kind of like having a blog for free…. Any help much appreciated!