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.
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.
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.
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.
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.
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.
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.