Quotes for the Nomad in You

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This is purely beautiful. I wrote a post a while ago about the difference between being a travel and a tourist, and I feel like this quote sums it up. Life shouldn’t be about existing inside a bubble, unaware of how other people live their lives.

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Do I love Kerouac. The Beat generation experienced the world in a way anyone scared of living in a box wishes for. This quote I use as the lock screen for my phone – I first used it when life wasn’t going smoothly, and it gave me encouragement to look at. So now I always like to have it to look at whenever I need.

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This explains the feeling you get when you’ve been living away from home for a while – be it a different city, country, or even continent. You still identify with your home, but it doesn’t feel like your home any more. And neither does your adopted home. But you wouldn’t change it, because although it can feel out of place, you are free.

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Can we all just appreciate the fact that Rupi Kaur exists, and is the voice of inspiration and reason for women everywhere? This quote hit me because I used to feel like my perception of love was finding a home in someone else, but it is even better to be reminded that the home I make should be my own – both literal and figuratively.

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I have no idea as to the origins of this quote, but when I cam across it randomly on the internet, I felt like it described me perfectly. Because yes, if I could have this as my life I would be grateful, and happy. Friendly reminder to not waste your time on books that are mediocre, or you’re only reading because you feel like you should – but read the books that you want to, the ones that engage you. The ones that leave you feeling inspired, whether it’s an all time classic or something largely unnoticed by others.

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3 Years, 3 Faces

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Okay so in the last photo I had been drinking so it’s not the most flattering…

But this is a comparison of my face from 2015, 2016, and 2017, all from around the same time of the year.

In other words, pre-diagnosis of lupus, when I was on about 40mg of steroids, and nowadays when I’m on 10mg.

I like looking at the contrast between non moon face, utter moon face, and nearly gone moon face. It is partly just to freak me out about how big my face got, but also to remind myself that it isn’t, or hasn’t been, permanent.

I used to think I wasn’t very vain, or fixated with my physical appearance. Then I realised it was because I’ve always been more or less comfortable with the way I looked, and when that was taken away from me by prednisolone my self esteem just crashed. It’s silly to be so preoccupied with how my face looked different – but being unable to recognise myself in photos was a shock, and when you’re only 22 and you felt like you had already lived your best looking days, it can feel like a huge loss.

Chronic illness takes away a lot of things – self esteem, carefree days, quality of life, as well as your health. It can also change things such as your physical appearance, way of life and even goals and ambitions. The impact isn’t just on your body in terms of organs or symptoms, but it impacts you in that you see life and yourself through a different lens. Even when you appear normal to others. And not being able to recognise your own face, or feeling like it’s a face that isn’t yours, adds to this. Your sense of personal identity changes.

So I increased my use of make up, got extra layers in my hair, avoided contact lenses so my glasses could frame my face, felt silly getting dressed up feeling like I shouldn’t have bothered, avoided guys so I didn’t fall into the fuckboy trap when I was feeling low, admired how my more confident friends could just expect guys to like them, and only took selfies with filters. When one random classmate once told me how beautiful he thought I was I nearly cried (we were both also drunk). Then I got pissed off with myself how grateful I was to hear that from a random classmate, when it should be me telling myself that. I also had to deal with being unable to fit into some clothes, and losing what little muscle mass I had.

Anyone on it can tell you – prednisolone is a bitch.

I didn’t have any sudden revelation or overwhelming acceptance of who I am, sad to say. I got through it knowing it wasn’t a permanent fixture, and now my face is nearly back to normal, so I’m experimenting with contacts again, wearing less make up, and I can squeeze into my tight shorts and trousers again. Actually I’ve lost too much weight so now I’m having the opposite problems in life… I’m never happy…

This isn’t a post to give enlightened words of advice. It’s mainly just me saying “look how big my face got! And look how it’s pretty much back to normal!” But hey, maybe it can just be a friendly reminder to myself and anyone else struggling with prednisolone. It’s not permanent. And all those frustrating feelings you have, the times you want to cry, or have, we’ve all been there. There is a huge community of people who understand completely.

It’s hard for anyone when we live in a world that is image obsessed. But it helps remembering that your personality will always be awesome because you’re a fighter, a listener, and a sympathiser.

Little Lupie Essentials

Coffee

Not the healthiest of options/recommended by doctors and nutritionists, but let’s face it, with chronic fatigue and the days when just getting breakfast or taking a shower can drain you of all energy, a good strong coffee is needed and well-deserved. Other options like herbal tea, gentle exercise (maybe just a walk!) or even water can help loads and tend to be recommended more, but never feel bad for opting for a quick fix.

Smoothie

The days I’m feeling worse, and when I’m facing my tenth cold of the year, I like to have a smoothie a day to get my fruit intake (and eat plenty of vegetables too!) and my vitamins. It feels like a great health boost immediately. Store bought ones are fine, but if you can make them at home even better as you’re fully in control of the ingredients. I like adding things like coconut water and chia seeds along with as much fruit as I can cram into the blender. Trying to adjust my taste buds to enjoy more veggie based smoothies, but it’s a slow process.

Hand Sanitiser

Because germs = infection when your immune system is terrible. Always recommended to keep in your bag/pocket just in case.

List of medication at hand

I keep the list of medication I take (and the dosages) on a piece of card behind my ID. Fingers crossed it never gets to the occasion I’m unconscious and medical staff need to see it to know what to do, but it’s always good to be prepared. I’ve also let friends know I have it, as I don’t expect them to know my medications but it’s good they know where to look if needed. For some medication like steroids, it is so important that doctors and nurses know you’re taking it and what dosage in case you can’t tell them.

Dry Shampoo

I can never find this in Spanish shops and it drives me mad – especially as the water in Barcelona is so hard my hair needs a wash practically after one day. Personal complaints aside, I’ve never had the issue where I feel too tired to shower, but some people do so a can of dry shampoo is always worth having at hand to freshen yourself up when a full shower will take too many of your spoons.

Hot Water Bottle

Always a great comfort to have on winter nights, but the heat can also help when the joint pain is bad. When I was undiagnosed and could barely move my fingers for the swelling and pain, I used to clutch my cups of hot tea which helped with the pain and eased my fingers into straightening out rather than being claws – but a water bottle is so much more efficient.

Diary

When I was first diagnosed my mum bought me a notebook to use as a diary for tracking my symptoms, pains, and writing anything down to ask the doctor at appointments. I also use it to keep track of when I need to renew prescriptions. It really is useful to track your symptoms, so you can tell when things are worsening and keep an eye out for flares. And writing down things before and after doctor appointments helps you to remember important (or silly) questions and answers.

Face Cream with SPF

SPF is essential to prevent flares and reduce the risk of skin cancer (thanks immunosupressants). Even during autumn/winter time, when most of you is covered up by layers, it is still important to make sure that your face is still protected. Best to use SPF 30 or higher, as I was told off by one doctor when she found out I was only using 15. Plus, it’s an anti-ageing remedy so really you can’t lose.

Maxi Skirts/Dresses

The annoying thing about having lupus in a warm country/when summer is coming is that you want to enjoy the sun, wear pretty summer clothes, but also not get ill. And my legs when not pale are still covered in bruises thanks to the medication giving me delicate skin. So how to dress comfortably, but also look good? Long skirts. I think maxis look great on anyone, not just tall people. It’s an instant way of looking glamorous without even trying, and you’re better protected than when in tiny shorts.

Lube

Not trying to raise any eyebrows, but it has been reported that women with lupus tend to have problems with dryness *down there*. And dryness = pain. A lot of lupus websites recommend to help with intimacy to discuss things with your partner, and sometimes to just enjoy cuddles etc. Which is great advice for when you’re in a committed relationship with a nice human being. But when your single? Let’s be honest – communication and taking it slow isn’t always on the agenda. And guys aren’t always the most clued up about how foreplay is kinda necessary. Anyways, it’s handy to have a bottle of lube nearby.

Being an Expat: Expectations vs Reality

Living abroad is an amazing experience and adventure. You develop as a human being, and have amazing stories to tell your future grandkids/anyone who will listen to you brag. But it’s not what films and books always describe it to be, or how your family and friends imagine your cool new life. You’re still human, who misses home comforts.

Expectation: You’re a suave, sophisticated jet-setter. A coffee to go in one hand, and your passport in the other.

Reality: Flight delays, dodgy wifi, forever looking for a plug socket. You look and feel messy, and scowl at those who treat flying like a fashion show. At least you know how to dress for comfort.

 

Expectation: You live in a cute, traditional flat.

Reality: Same as any flat share. Kinda scruffy if you go for the cheap option, and your flatmates can be a strange bunch.

 

Expectation: You practice the language all the time.

Reality: They know you speak English. And they will use English with you. It’s manners, but you wish they would test you more.

 

Expectation: You learn new, local dishes, perhaps buying your ingredients in local shops and market stalls.

Reality: You get excited finding home products in the supermarket. Baked beans? PG Tips? Worcester Sauce? Bring it.

 

But really, it is a cultural experience like no other, and you’re grateful for the amazing opportunity you’ve been able to have.

30 Things About My Invisible Illness You May Not Know

In celebration of World Lupus Day, I have answered these questions that were originally used in blogs for invisible illness week. They’re a bit of fun, and a good way to show how living with chronic illnesses is different for everyone!

1. The illness I live with is: 

Systemic Lupus Erythmatosus. An autoimmune disease in which your body can’t tell the difference between a virus and your own tissue and organs, so attacks everything. It causes things like joint pain, fatigue, hair loss, anaemia, nose and mouth ulcers, rashes, and can lead to serious organ complications.

2. I was diagnosed with it in the year:

2016.

3. But I had symptoms since:

I first developed serious joint pain that affected my day to day life a year and a half before that, but some symptoms such as Raynauds Phenomenon I had for years before.

4. The biggest adjustment I’ve had to make is:

Being organised. No lie, I’ve learnt not only do I have to memorise all the names of my medication, but also the dosages. I need to keep all my medical records safe to take to every appointment. I keep a little notebook to keep track of symptoms, prescriptions, and any questions to ask doctors. I used to love just winging life and playing everything by ear. Not anymore.

5. Most people assume:

I have no idea. That I’m unusually pale? Bright red cheeks from being embarrassed for no reason? Lazy? Probably lazy.

6. The hardest part about mornings are: 

When I wake up and my entire body aches and feels too heavy to get out of bed, or I find it impossible to stay awake for more than five minutes. I have to slowly move my limps to gradually get myself out of bed, or quickly check something like Instagram just to help wake myself up and feel reconnected with the world (on these days even looking at Facebook feels like too much effort).

7. My favourite medical TV show is: 

Scrubs. Because a comedy with little life lessons is always fun, but I did get into House for the lupus references. Last two seasons weren’t much though.

8. A gadget I couldn’t live without is: 

Erm my mobile phone but that’s nothing to do with lupus. Does my pill box count? Helps keep me organised and the days I think “Did I take my medication?!”, well I can find out.

9. The hardest part about nights are: 

When the medication is keeping me up until about 6/7am, and I have a busy day the next day to get through.

10. Each day I take:

10 pills & vitamins. Gradually reduced from over 20, so that’s something!

11. Regarding alternative treatments I: 

Natural help such as diet adaptations and herbal teas I fully support, or anything that helps the person feel good. I also advocate things like drinking water if you have a headache etc before taking minor medicine. But never in replacement of the actual medicine that is needed to stay alive.

12. If I had to choose between an invisible illness or visible I would choose: 

Invisible. I’m grateful I can still feel normal and hide it. I have extra respect for those with visible illnesses as they still define themselves on their own terms and live their lives to the fullest.

13. Regarding working and career: 

I worry if one day my lupus becomes worse I’ll have to quit a career I may love. Having a career to be proud of is a huge life goal of mine, so I would hate to have a job I love but that makes my lupus worse.

14. People would be surprised to know: 

After first being diagnosed I got scared, angry and upset a lot. I tried to maintain a positive attitude to not freak others out, and to help myself deal with it better. Nowadays I can laugh at jokes about lupus, and wish there were more.

15. The hardest thing to accept about my new reality has been: 

The way I feel it defines me even when people don’t know I have it. It has altered my appearance to the extent I am uncomfortable with it, sometimes I want to yell out how these chubby cheeks aren’t usually me. I also have to be extra cautious – will a night out with friends make me feel worse? Will a cold hospitalise me? Also how I have to plan my future around it – certain countries I may not ever be able to live in or visit because of the insurance/vaccinations, or that I really should stick to doctors I know and who know me. I have to put lupus first to be able to enjoy life to the fullest – I miss the carefree days that should come with your twenties.

16. Something I never thought I could do with my illness that I did was: 

Begin my masters degree in a foreign country only 4 months after being hospitalised and diagnosed – I thought I’d be stuck taking another gap year and hating it.

Also being able to travel (albeit short trips), but I managed three trips in two weeks, just had to sleep a lot in between them.

17. The commercials about my illness: 

Well they don’t exist. I wouldn’t mind seeing some advertisements for lupus charities, even just to see some in doctor’s waiting rooms.

18. Something I really miss doing since I was diagnosed is: 

Being spontaneous. Every time I make plans, whether it is a day out, a trip, or a party, I have to think about how it will affect me and my energy levels, and will I need to recover sooner than I will.

19. It was really hard to have to give up: 

Instant noodles. They have no nutritional value so they’re one of many foods I do my best to avoid, no matter how easy they are to make. And oreos make me feel terrible. Also drunk cigarettes (don’t judge me!), they make my breathing awful the next day but try explaining that to me after a bottle of wine…(and don’t start on how I should cut back on drinking…)

20. A new hobby I have taken up since my diagnosis is:

Blogging about lupus? It’s funny seeing how my blog has changed and evolved along with me. But I am glad lupus hasn’t prevented me from my old hobbies of travel and photography.

21. If I could have one day of feeling normal again I would: 

Go sunbathing. I miss having a decent tan and I am done with people calling me pale. I do go anyway, but I always feel horribly fatigued for a few days afterwards, to the point I struggle to focus on anything. I would also eat alfalfa sprouts because although I have never eaten them, now I know I can’t I really want to try them. But first and foremost I would go and donate blood – I can’t because of my blood transfusions but I would love to have the opportunity to give back.

22. My illness has taught me: 

Life is tough, but people are tougher. And the people that matter will always be there for you. And that fully vegetarian/vegan meals are a delicious energy boost.

23. Want to know a secret? One thing people say that gets under my skin is: 

“Urgh I have a cold”. No, sorry, but I don’t feel sorry for you if you constantly complain (complain a little, colds suck, but don’t ever not bother to ask how I am then expect sympathy for the sniffles).

24. But I love it when people: 

Just say little things that they probably don’t realise make me feel cared for, e.g. when they ask if I want to sit in the shade, and I didn’t realise they knew I have to avoid the sunlight. Or ask how my doctors appointment went, or wish it goes well for me. Little gestures mean everything.

25. My favorite motto, scripture, quote that gets me through tough times is: 

My favourite musician Frank Turner has a song called “Get Better” which I listen to when I’m down about lupus. He sings “We could get better because we’re not dead yet” which plays into my odd sense of humour – we fight this illness every day and win.

I wrote a post about Maya Angelou quotes which I feel apply to lupus.

Rupi Kaur has a simple poem with the lines – “and here you are living despite it all”, which I think can apply to anyone, including us lupies.

Also when I wrote about post after being diagnosed someone commented to give me the quote by Kurt Vonnegut which I thought was a lovely gesture and so I treasure this quote:

“Be soft. Do not let the world make you hard. Do not let pain make you hate. Do not let the bitterness steal your sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place.”

26. When someone is diagnosed I’d like to tell them: 

The only direction is up. Things will be okay. Things will even be normal. You can reclaim control over your body.

27. Something that has surprised me about living with an illness is: 

How many things I took or started to take for being normal, are actually the result of lupus, and that it’s not normal to put up with. Or the days I have slept 10 hours, drank one or two cups of coffee and still wonder “WHY AM I SO TIRED?!” Then I remember. Oh, hey lupus.

28. The nicest thing someone did for me when I wasn’t feeling well was: 

Friends baked me apple pie and visited me all the time in hospital. My old work coordinator took me to every hospital appointment and brought me food. Distant relatives and friends of parents ask after me. An ex boyfriend’s mum has left me Facebook comments wishing me well (which is sweet because her son was never the most supportive when I was ill and we personally don’t stay in contact). My parents and grandmother flew to Spain to be with me when I was in hospital. Other friends invited me to visit them, or sent me cards from their homes in the UK, Norway or Canada. To say I am lucky is an understatement.

29. I’m involved with Invisible Illness Week because: 

Well I’m not, this is for fun. But anything to raise some awareness!

30. The fact that you read this list makes me feel: 

Supported. Especially if it’s by anyone I know (hellooooo). If it’s read by anyone else with lupus I hope you can feel a sense of familiarity, or a sense of not being alone. It’s why I enjoy reading lupus blogs – it’s a community of fighters.