Brand new days

Lucy Reeve is a Clinical Specialist Occupational Therapist, who has worked for the NHS for 26 years in Rheumatology and Pain Management. She also has scleroderma herself, so she fully understands the impact of this condition on daily life. We talked to Lucy about how making a few small, positive changes can actually make a big difference in improving wellbeing and quality of life.

During these unprecedented times, taking care of ourselves is more important than ever. It may sound overly simple but making a few changes here and there really can help us all to feel better, both physically and emotionally.

As we move ever-closer to a ‘new normal’ many things still feel very different, and it is increasingly clear that to help to stay well, you sometimes need to become your own therapist! Living with scleroderma can make everyday activities challenging, and what we do each day has a massive impact upon our health and wellbeing. By making a few simple changes that help to raise the quality of each day, you can improve your quality of life.

Make notes

Begin by keeping a daily journal, including typical symptoms, when they occur, what helps and what can make things worse. Look at your home environment, relationships, work, diet, sleep and exercise. By identifying what our own ‘normal’ looks like, we may find it easier to manage our situation. Ask yourself:

• What does a typical day look like?
• What is your current routine?
• What do you spend your time doing?
• What are your priorities?
• What are your exercise habits?
• What is your sleep pattern?
• Do you have periods of relaxation?

At the end of each day, consider the following, to see what you would like to change:

• What worked, and what didn't?
• What did I learn today?
• What will I do differently tomorrow?

Pacing and planning

Sometimes we stop doing tasks because of pain and fatigue, or the fear of making things worse. This might help in the short term, but if you do not keep active then you will quickly lose strength and stamina.

People often wait until they feel fairly ok, push themselves to their limits and then need several days to recover. We call this pattern ‘Boom and Bust’. 

In fact, we can actually achieve more by maintaining consistent activity levels, so try to do a bit more on your bad days and a bit less on good days. Always stop before you need to: don’t wait for the pain or exhaustion to set in. 

Having a daily routine is great for wellbeing and helps you to feel more in control. Try to plan your days and weeks to include a variety of activities, with regular changes of position. Break everyday tasks into manageable chunks: don’t hoover the whole house, just do a room a day. Always include regular, short rest breaks so you can constantly recharge your battery!

Prioritising

Nobody has endless amounts of time or energy; and when you have scleroderma your supplies are much more limited than normal. You are working with a reduced ‘budget’ so you need to spend it wisely. So how do you spend your time?  Are some things not really that important? Are there things that somebody else could or should do? Letting go of the ‘old me’ who used to be able to do everything can be hard; but making a few adjustments really could make life easier.

Environment and equipment

Is your environment making your life easier or more difficult? Is it organized and easy to clean and maintain? Do you have things at the right height and easily accessible?  Do you need anything to change?

There may well be equipment or gadgets that could make life easier, or help you to maintain independence. Ask for a referral to an Occupational Therapist if you would like more information.  

Keep moving

However you look at it, exercise helps. As well as boosting your physical health, it also increases the production of feelgood endorphins (our natural pain killers), helps reduce stress chemicals and relieves anxiety. Research has found that 30 minutes of low-intensity exercise three-to-five times a week can help to boost mood, energy and mental alertness.

Exercise can be any activity that you enjoy and gets you moving, including dancing, gardening, dog-walking or just doing housework in time to music.

Eat well

Whilst maintaining a healthy diet is important, having scleroderma can mean that the gut often seems to have a mind of its own, which can make this more challenging. If necessary you can request a referral to a gastroenterologist or an NHS dietician.

Take up a hobby, or learn a new skill

We all need an absorbing passion that drives and sustains us. A long-term health condition can lead to a growing list of things that we ‘can’t’ do, and these losses can reduce our quality of life and impact on our identity. Consider the things that you normally love to do and see if there are similar alternatives. Getting absorbed in a creative activity can be hugely beneficial for our physical and emotional wellbeing, and there are plenty of free, online resources.

Have fun!

When we are pushed for time, the things that we enjoy often slip to the bottom of the pile. Sometimes it takes all our efforts to do the bare minimum, but it is the things we love that actually give us energy and lift our mood.

List the things you really enjoy and when you do what you love, try to slow down and really take in the moment. At the end of each day write down three things that you enjoyed, and remember that sharing these experiences with someone else can make them even more powerful.

Smiles and laughter

You will certainly not always feel like doing it, but sticking a false smile on your face tricks your brain into thinking that you are happy, and lifts your mood. Just smile for a few minutes to notice the difference it makes - and other peoples’ reactions as well. If someone smiles at us, we smile back!

Laughter releases happy hormones within the body, reduces the chemicals related to stress and even helps to relieve pain! It also brings an emotional high that can allow us to see our problems from a different perspective. 

The ‘Joy Jar’

Start a ‘Joy Jar,’ and whenever something lifts your mood or makes you feel grateful, simply write it down and stick it in the jar. Then, on a bad day, you can read through some of these to remind yourself that even when times are tough, wonderful things still happen.

Alternatively, buy a beautiful notebook. Every night, take a few minutes to write down the things you are grateful for in life, no matter how small.

First aid box

Create an emergency feelgood collection of things that you know will help when you are struggling. Pick out your favourite movies, books, snacks (chocolate!), or your hot water bottle and fluffy socks, all ready to snuggle on the settee. 

Relax

Set aside some time every day for relaxation.  Find a technique that works for you, or simply make time for yourself. Relaxation calms your mind and your body. It reduces pain and muscle tension, helps us sleep better and can even improve digestion!

Write it down!

Writing down our thoughts and feelings helps us to process them, reducing stress and anxiety. It also helps in gaining perspective and resolving problems. Writing it all down gets those thoughts out of your head and onto paper so that your mind feels less busy, which can be very therapeutic!

Accepting ‘It is as it is’

It is human nature to fight against certain situations in life. Feeling upset or frustrated about our health can create distressing thoughts and feelings that are also hard to deal with.

There are many situations that we cannot change, and learning to work with ‘what is’, can be extremely hard. Sometimes we get trapped in circular thinking, constantly asking ‘Why?’ - Why has this happened to me? In fact, the most helpful question to ask is ‘What Now?’ 

What could you do now that would help? What is the most useful action you could take? Can you make changes to your diet, or call your specialist nurse for advice? Small steps can make a big difference.

Be kind to yourself

Try to develop some self-compassion. Often we self-criticise, and give ourselves a hard time. You have to live with yourself and if you treat yourself badly then life is going to be much more difficult. When you have health problems you need support and encouragement from everyone, especially yourself! So, try to treat yourself the way you would your best friend. If you would support them through troubled times, then try to do the same for yourself as well. If we are going to make things better all round, treating ourselves well is a great first step.

If you would like any more information about the support services that we offer, please contact us, and we will be very happy to help you,