You Know You’re a Spoonie When…

Disclaimer: I know some people don’t like the term spoonie, because they find it belittling or that the spoon theory doesn’t fit their experiences. I also find it is not the best metaphor for my fatigue, because to me it sounds like you can plan and manage your energy resources whereas sometimes you can’t. But anyways, I like it as a term every chronic illness warrior recognises and can use. Also these are from my own experiences, but as any spoonie knows, everyone has a different experience.

Your pharmacist knows you, and treats you like a special customer

I’ve been given a nicer bag to carry my meds home in, and even trusted when the card machine wasn’t working to come and pay another day.

You start to learn about your specialists life

My specialists in Spain in particular, I learnt about my rheumatologist’s bad back, and his personal life. Frankly, it helps being on chatty terms with your doctors.

You eye up fancy pill boxes on Amazon

I have a bog standard one for am and pm, but you can get some with nice patterns and that look less like pill poxes. I’m thinking of buying one with a zip, as sometimes my current box can open and meds go everywhere when travelling.

You follow fellow spoonie blogs

It’s great to know there is a huge community out there, especially if you can’t make it out of the house. They are funny, relatable, touching, and eye opening to other people’s struggles.

You need to rest after breakfast

I hate waking up and knowing it’s going to be a tough day for fatigue. And that I struggle to be functioning before the afternoon, because I’ve ended up resting after breakfast or a shower and can’t move.

You’re at hand with medical advice when a friend is ill

And often painkillers or other at hand, you walking pharmacist you. In Spain I was the one friends would ask about registering at the doctors, or getting vaccinations.

You have doctors numbers saved onto your phone

And when, like me, you spend time in different places (or countries), the list is divided by location as well as type of doctor.

You’ve given up on webMD

No point worrying yourself when you’ll be seeing the doctor soon enough and can ask them. Plus with so many tests, anything concerning will pop up in the results.

You have gone over to someone’s house just to nap

Not on purpose (usually), but sometimes you get there and realise you cant keep your eyes open. They usually offer you a bed to lie on.

People always seem surprised at the amount of meds you take

And the “you must be rattling!” joke often follows.

You have days you are sick of being sick

Sometimes I can be at the pharmacy, the waiting room, or just as simple as taking my meds in the morning, and I get a sudden urge of being done with lupus. Find a cure already, I’m tired of having it being the biggest, most controlling thing in my life. Then I get on with my day, because there’s no point moping about things out of our control.

But you’ve also forgotten what “normal” is

This time next year I could be on next to zero meds. Which as exciting as that sounds, it’s also scary to think that could be a reality again. No funny side effects? Potential discharge from specialists? Is that normal life? Not to mention your daily aches and pains are so natural to you, you almost welcome them like an old friend. My dodgy joints are mine, I know how to take care of them.

And so many more…

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Snapchatting a Spoonie Day

I’ve been back in the UK since Monday, and have been feeling pain in the chest since, which at first I thought were asthma related, but it felt similar to pericarditis (inflammation of the heart), so I went to the GP this morning.

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Sending a random snapchat because I was sulking about being back in the doctor’s waiting room.

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But then, to be on the safe side, the GP sent me to the ambulatory department of my nearest hospital to run some tests for inflammation and/or blood clots.

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I decided to continue the snapchat story, partly because I was bored, by myself and attention seeking, but also so I could document glimpses of what an unexpected trip to the hospital could entail.

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It was mainly waiting for tests – blood tests, EGC scan, and a chest x-ray

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And a cafeteria bought lunch for the waiting room.

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4 hours after my GP appointment I was free to go – nothing to worry about, they suspected the flight home may have triggered some pleurisy (inflammation of the lungs), but it should clear up in a few days.

 

Although it can feel a little strange, knowing I have pains and something not quite right, but the doctors don’t seem concerned anymore, it’s better than having something much more concerning. And now I am home, with TV, cups of tea, a bath, and cuddles with my dog planned for the rest of the day.

Tips for being a student with lupus

I feel really lucky that four months after my diagnosis I was able to begin my masters degree in a foreign country – not everyone gets that pleasure. Often lupus forces people to quit school or university, with hope of maybe returning when things are a little better.

I, however, am a stubborn individual, so when I was warned by multiple doctors that I should probably put my studies on hold, well, I knew I didn’t want to put my life on hold for a year. Luckily both the doctors and my parents decided to do their best to support my decision. But to gain my degree, and not end up in hospital having a flare up again, or be forced to drop out due to lupus – I knew I had to be extra careful. And there are a few simple ways to manage this.

Time management is key

With university comes deadlines – multiple deadlines. And with students comes the infamous procrastination. Many find that they work best close to the deadline – the pressure they feel makes them excel. But if you have lupus this is a really bad idea. Stress is one of the main triggers for a flare up (and who likes to be stressed anyway). So make sure you write assignments with enough time to relax about them, and go over them to edit. Always plan ahead. A few friends have thought me weird for always getting work done way in advance – but honestly I’ve always been one to keep on top of work, and knowing it will benefit my health gives me even more incentive. Not to mention when I was first being tested for lupus was when I needed to finish my final undergrad assignments and dissertation – if I had left all that to the last minute I would have submitted late and possibly submitted average work due to the stress of hospital visits. Something best to avoid!

Limit nights out

And with student life comes amazing night life. However, the heavy drinking and late nights can take a toll even on the healthiest body. So although it can be hard to say no, especially at first when you don’t want to say no to new friends, it is better to save your energy for the more important social events. After a particular heavy weekend I started getting chest pains like pericarditis again, so lesson learnt – the tequila shots aren’t worth it. You can still have fun, whether it’s sober fun or ending the night with chicken nuggets at 4am fun, just make sure you don’t let it become your life. Friends will understand, even if you say it’s just to save money.

Prep food at home

A healthy diet is one of the best ways to look after yourself. I aim to have a diet high in vegetables, protein from oily fish and legumes, iron rich leafy greens, fruit, and a little bit of dairy. My snacks I try to keep as low in salt as possible, and I limit my chocolate intake. I also avoided buying lunch from the university cafeteria. It wasn’t the most appetising, which helped, but I could predict it was high in salt and low in nutrition. It’s better to learn to make easy salads and pastas, with quinoa and couscous, at home to take to classes. And always have easy but healthy go to meals, such as beans on toast or scrambled eggs on toast (I do like toast) for when you’re super tired but need to get something to eat at home. Stay away from ready meals.

Keep in touch

Friends and family, wherever they are, want to know that you’re doing okay. They can help keep an eye on you, but also they can be there to talk to and complain to, because they know what you’re going through. Touching base is always healthy from time to time, especially if uni work and health issues can become overwhelming.

Let your tutor know

Always let your university know if you have an illness that affects your daily life. Some unis offer perks, like free printer credit or something. But it’s also important to let the university staff who are a main point of contact know that you have an illness that can flare up and interrupt your studies. If you need to push back deadlines, it’s best to let them know in advance this could happen just so you know the protocol, and they know it’s not coming out of just not getting your work done on time.

Story – I missed a day of classes when my medication made me ill and I had spent the night before with my head in the toilet (lovely mental image). I only found out towards the end of the semester one class I missed was in fact a graded seminar. My professor was only willing to give me a 0 for that grade with a doctors note, something I found unfair. So I contacted my personal tutor who spoke to head of studies, who argued my case and got my grade changed. I think it helped I had told both these tutors at the start of the year that I had lupus and it may affect my attendance/grades, so it didn’t come out of the blue, as though I was trying to play the ill card to fix a bad grade. With chronic illness you have to be prepared for its unpredictability, and let others be prepared.

Let your friends know

I didn’t do this right away – I wanted people to get to know me first before finding out I spend a lot of time with doctors and have a rather delicate body. But when I did tell them they were 100% supportive, and it felt like a relief that I didn’t have to feel shady about rushing off to appointments after class anymore. It’s such a huge part of your life, sadly, so it’s good to let the people you see the most know what’s going on. People want to help, and just knowing they understand helps you get through the difficulties lupus throws at you.

 

With good support and a little bit of common sense, if your body is doing okay it should be possible to throw yourself into studies and also have an amazing experience – like every student deserves.

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.

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.

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?

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.

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.

Lupus Beauty

It often feels like lupus and beauty do not go hand in hand. Before I was diagnosed I was rather okay with my physical appearance. Never 100% happy, always finding faults, but I felt like I could talk to guys with confidence and enjoy taking a selfie from time to time (priorities…)

All that changed when I was put on a lupie’s worst enemy – steroids. You gain weight on your belly and back, but most annoyingly your face. I’ve always had a wide face, but it became super wide. I couldn’t, and still can’t, fully recognise my face in the mirror and photos, and I wonder if it will ever go completely back to normal.

Not to mention the other things – what I thought were rosy cheeks turned out to be the butterfly rash, and so when people comment on my red cheeks now I know it’s not a cute feature but my skin being attacked by my immune system. Not so cute.

And what I thought was a normal amount of hair to fall out, well that turned out to be not so normal either. I had noticed my hair was thinning, and now this is a feature that comes and goes. Currently my hair is the thinnest I’ve known it to be. And it used to be so thick my ballet teacher would complain how it wouldn’t easily go into a bun.

Even the necessity to protect myself from the sun makes me self conscious about my pale skin – whereas before I took pride in having long legs now I don’t like to flaunt them in a skirt (well, it is winter at the moment).

So, at 22 it sometimes feels like my best looking days are behind me, and that lupus has taken from me what little self-confidence I had. Not great when you’re still starting out in life, meeting new people, and determined to have fun.

It seems daft to place so much importance on looks, but there’s no denying everyone thinks about it, what they like, what they would change. Even though I know I just have to be patient and wait step by step for my steroid dosage to be reduced, and it already has, it’s no fun knowing that a sudden flare up can take all that away again.

In the meantime, I’ve experimented with different ways to help give my confidence a boost. Cheap methods, because not all of us are Gwyneth Paltrow and her bizarre methods.

Aloe Vera Juice

Not the drink you can buy on the go, but the juice you can have a tablespoon of or add to water. Three times a day, it’s mainly used to help the digestive system but I read that it also works with thickening hair, so I first tried in in the summer and it really seemed to help. And a boost to the digestive system I don’t think can harm a lupie.

Olive Oil/Coconut Oil

Also helps with frizz, which my hair has never recovered from, but using one or the other as a heated hair mask before washing can help with the overall quality of your hair. Also great for cooking with.

Herbal Tea

A friend recommended to me nettle tea to also help with my kidney problems (now in total remission!), but I dare say any herbal tea (white is the healthiest) can help with all sorts of problems, including fatigue and acne. Much better than coffee, and also very comforting if you’re having a bad day.

Green Primer

To help counteract the redness of the butterfly rash, a green primer is best for this. I’ve started wearing more make up since my diagnosis in an attempt to feel pretty, but now I’m starting to reduce the days I go for a full face, because I’ve always been lazy. It’s good, however, for when I want to play around with make up.

Contour Kit

I bought one in the belief that it would reduce the appearance of a moon face. It hasn’t really, but that might just be because I’m terrible at applying make up. So this is not a definite recommendation, but I feel that playing and experimenting with make up can help with confidence, because like picking an outfit – make up should be fun.

Face Cream with SPF

SO, SO important when sun sensitivity is an issue/medication increases risk of skin cancer, but a decent face cream is a must have for anyone. The average person can get away with a low SPF – 15 maybe, but everyone should use one to avoid too many wrinkles. I use SPF 30 to keep my skin soft and protected.

Hair Cut

A decent haircut by a good hairdresser can help lessen the obvious moon face, and deal with hair loss. Plus a new hair cut will make anyone feel good about themselves. I always say I only have two good hair days a year – the days I get it cut.

TREAT YO SELF

If you’re feeling down, just think “fuck it” and do whatever makes you happy – be it a new outfit, cake, or a stiff drink. The best way to get over self conscious days is to not obsess, instead distract yourself.

But of course, its always important to remind yourself that lupus does not take away any of your awesomeness. It can feel like it sometimes, whether it’s your looks, independence, identity etc, but it never fully will. Underneath all that primer, oil and medication, the real you never goes. Flaunt that part of you, and those who matter won’t care if your face is poofy. Mainly you.