Self-care with Scleroderma

People living with scleroderma, whether limited or diffuse scleroderma, deserve to feel their best. Obviously there are the important things you need to do, like seeking treatment, taking the right medication and knowing your limits, but there is also a lot you can do outside of this, allowing you to enjoy your lifestyle and feel like the best version of yourself. Interested? Read on to find out how!

• Treat your skin right, beyond what it needs.

This point might be one of the biggest ones on our list, because as anyone with scleroderma knows, your skincare is so important. However, we want you to go beyond the moisturising creams. 

Yes, definitely invest in a calming, fragrance-free moisturiser (and use it after every time your skin gets wet), but don’t stop there. Go all out! Make yourself feel special and focus on all of you, not just the scleroderma. If you like baths, get some natural bath oils or epsom salts and watch a movie, or maybe light your favourite candle. Remember to keep the bath water from getting too hot, as this dries out the skin (and also, baths are never fun when you’re sweating!). 

Treating yourself to a massage or facial once every few weeks is also a great option, because nothing feels better than a relaxing hour-long pamper session. You should also feel lighter afterwards, as according to the article Managing Skin Conditions In Scleroderma, any sort of massage “will improve the mobility of the joints and help drain excess fluid in the face”. Massaging with an oil or moisturiser also decreases the dryness and itchiness of skin, making you feel great both during and after your session.

Invest in other self-care items that you can implement in your day-to-day life too, such as a heating blanket. This way, you don’t have to wait for those appointments or nights to feel special, you can have a nice moment in the middle of the day if you choose to do so!

• Connect with others.

Keep in touch with those you love, whether that’s catching up with a friend in person, or calling someone who makes you smile. We can get so caught up in our own busy-ness that weeks and months can pass by before you realise you haven’t spoken to a friend in a while, and we all know connecting with others makes everything better. Aim to call or text someone at least once a week to check in, and try scheduling in-person catch ups. Perhaps you could host a morning tea with you and a friend or family member, where they bring those tiny finger sandwiches and you make the tea. Anything works, really. As long as you get to spend some quality time with the incredible people around you. (Also, don’t forget to prioritise connecting with your partner and staying intimate. Plan dates, make it a goal to do or say something nice to them every day, even if that’s just leaving a sticky note with a heart for them to find).

Connecting with new people is also so important for our self care. You can join in-person events, like our scleroderma support groups, or do something that focuses on another aspect of your life, like joining a local book club. Also remember that in today’s world, everything can be virtual, so join online forum and talk to new people, or find a platform that allows you to help others from the comfort of your own home. For example, you could be a sighted volunteer through the company Be My Eyes, which connects you with others all around the world with visual impairments. Usually, you will get a FaceTime call to help someone find a dropped item, distinguish between food, describe pictures or help match colours and so much more! Be My Eyes say “90% of all calls are completed within a few minutes”, so this is a great way to connect with others and make a difference without having to commit too much time or effort. 

• Move your body in a way that feels good.

The best exercise is always going to be something you want to do, even if you can only manage it in small amounts. Exercise should always be about feeling good, both in your mind and body, so try different things until something sticks. However, we do have some fun exercise ideas that you can try, some that are even possible from your own home!

Warm-water swimming: this usually comes in the form of an exercise class and has great benefits, allowing you to connect with others while doing guided exercises without much thought.

Yoga: this is a great stretching exercise that builds your flexibility and strength over time, as well as having some evidence pointing towards breathing capacity. You can join classes, or look up tutorials online. As we said before, everything is virtual today, so try looking up some scleroderma focused tutorials online and follow them if it makes you more comfortable.

Tai Chi: similar to yoga, tai chi increases flexibility, strength and cardiovascular fitness. It is also a form of meditation, keeping you present and being aware of your body and its capabilities in slow, measured movements.

Dance: dancing is a great way to get moving, and doesn’t require you to do everything perfectly if you don’t want it to. Just turn on one of your favourite songs a day and let yourself feel the music. Swing and sway in any way that feels good for you, even if that’s a simple head nod and foot tap! 

Remember, while we’re encouraged to work out 3-4 times a week, this is a goal, and it’s not for everyone! It may not even be a possibility. As long as you are moving your body and feeling good, even just for five minutes per day, you will thank yourself.

• Eat right.

Everyone deserves to eat well balanced meals, because they give us more energy, fulfilment and strength. Research the best foods to make you feel good, or perhaps, if planning meals are your thing, get meal kits that bring all of the ingredients and recipes you need to your door. This way, you only need to spend time making yourself good food, and not have to spend time figuring out all of the details. Buying pre-cut vegetables is also a great way to save time and energy if you need, allowing you to easily get the nutrition you deserve with minimal effort. You can also make larger batches of food when you do have the time and energy to cook, and then just freeze the leftovers. This gives you amazing meals for the future that you only need to defrost and reheat!

• Be mindful.

One of the best things we can do as a form of self-care is practise gratitude and be intentional with our time. Getting a gratitude journal you can write in every day, or saying three things you’re grateful for first thing in the morning, have incredible impacts on our mindset, and set us up to have a better day. 

Filling your home with things that make you happy will also help having a positive mindset. Get a bouquet of your favourite flowers delivered to fill your home with colour, or perhaps spend some time crafting with a young loved one so you can put their drawings on your walls! 

Finally, feel the sun once a day (while wearing sunscreen). This might be in the form of an outing to the beach or just spending some time by an open window, but any time you can spend being intentional in the sun is also highly beneficial, warming our skin and grounding us. Try to take some time to be mindful with your breathing when you’re in the sun, and take some deep breaths to further be present.

If you have any more tips to self-care with scleroderma, or try out any of the ones above, let us know!

Disclaimer: Scleroderma Victoria in no way endorses any of the medications or treatments on our website. The information is intended only to keep you informed. We strongly advise that you consult your doctor regarding any medications or treatments of interest to you.