Bring on the good days

How do you feel today? We all have good days and bad days, as well as everything in-between. How we spend our days can have a major impact on our health, and by taking some steps to raise the quality of each day, we can also help to boost our wellbeing.

Begin by focussing on yourself. Keep a daily journal of typical symptoms, when they occur, what helps and what doesn’t. Understanding what is ‘normal’ for you is key in helping you to manage your situation.

Environment and equipment

Our environment can make a big difference to what we can comfortably achieve. Ask yourself, is everything organised, and easy to clean? Are things easily accessible, e.g., with cupboards at the right height? Does anything present a problem, and if so, what do you need to change?

Equipment is also important, and using the right things in the right way could save a lot of time and energy. There might be a simple gadget, such as a perching stool for the kitchen, that would make things easier, especially if you are often in that space.

Fatigue: are you a hare or a tortoise?

Fatigue is a common feature of many long-term conditions. Of all the symptoms that come along with scleroderma, fatigue is probably one of the most difficult to live with. It can stop us from doing what we want to do; however, the danger is that if we do stop, it is very easy to fall into a negative cycle.

Fatigue may make us feel that we cannot carry on, so that we slow down and stop. However, if we do less and less, the body can quickly become deconditioned, lowering our limitations even further so that we can no longer do what we used to. This is a vicious cycle, because we may end up not wanting to do anything at all; and then face more pain and restriction as a result.

People sometimes behave like the hare from the story of The Tortoise and the Hare. We rush about with a long 'to-do' list, and we hate to be limited in what we can do. We then fight against our fatigue and keep pushing ourselves until we have to stop. However, the tortoise from the fable was very different to the hare. He simply plodded along, doing what was necessary at a pace he could manage. He ended up beating the hare, because he did not need a long period of rest. The moral is about doing less, more often.

Planning and pacing

On a ‘good day’ when we feel ok, we may be tempted to overdo it to get things done. This can then exacerbate the fatigue so that we need time to rest and recover (the ‘bad days’). This pattern is called ‘Boom and Bust’. 

Instead, try to aim for consistent activity levels on most days, to achieve more in the long term. This means doing a bit more on the bad days and a bit less on good days. Always stop before you need to: if you wait for the pain or exhaustion, you have done too much. 

Plan your days and weeks to involve a variety of activities, and change your position regularly, even just for a stretch.

Pace yourself, breaking tasks into manageable segments.  Do not vacuum the whole house - do one room per day. Exercise in bitesize chunks, such as walking on the spot whilst waiting for the kettle to boil.

Having a daily routine is good for your body and helps you take back control. If you have a ‘best time’ of the day, this may be ideal for more challenging tasks, that require more energy or concentration. 

Prioritising

No one can do everything, especially with limited energy. Ask yourself: how much can you do without being pushed to the limit?

Consider your energy level as your ‘budget.’ Then, look at the best ways to spend it. It is easy to keep using it all up on work or the mundane; however, it is the aspects that add fun and enjoyment to your life that will help restore your energy.

When you review your ‘to-do’ list, ask yourself: should I do it, dump it, or delegate it? What could you leave out, and what can be done by someone else? Always keep the elements you enjoy and that add value to your life. Letting go of the ‘old me’ who used to try to do everything is hard; but making some small changes could make life easier.

Small steps towards better days

What we do every day has a massive impact on our health. There are many simple, positive steps that can add value to the everyday, and help make each day even better.

• Keep moving

Any exercise helps. It boosts your physical health, increases the production of feelgood endorphins (our natural painkillers) and relieves anxiety. Keep it simple with anything that gets you moving, such as walking the dog or just doing housework to music.

• Have fun

It is all too easy to forget the things we enjoy, however these aspects actually give us energy and lift our mood, so losing them comes at a cost. Make a list of everything that gives you pleasure or makes you happy, and always make time!

• Relax

Set aside some time every day for relaxation. Find a technique that works for you – there are plenty of free resources available. If you don’t want to use a specific relaxation technique, just make time for yourself. Relaxation calms the mind and body, reducing pain and muscle tension and improving sleep quality, so it is well worth a try.

• Accept ‘It is as it is’

It is human nature to fight against certain situations, but there are many aspects of life that we cannot change. Learning to work with ‘what is’ can be extremely difficult. Sometimes we get trapped in circular thinking, constantly asking ‘Why has this happened? In fact, the most helpful question to ask is: ‘what now?’ What can you do now that would help? What is the most useful action you could take?

• Make a ‘Joy Jar’

A ‘Joy Jar’ is a collection of things that make you feel good. Each time something lifts your mood or makes you feel grateful, write it down and stick it in the jar. A telephone call with a friend, flowers in your garden … anything and everything! Then, on a bad day, you can look through them. Even when life is tough, there is still joy out there.

And finally...

Self-compassion is key to looking after yourself.

Living with health issues may mean that you need to allow yourself to do things a bit differently, and you do not need permission to seek help. We instinctively know what is helpful and what isn’t, so consider this in planning your day. Often, when we need to take care of ourselves, it is easy to lack compassion, self-criticise and unwittingly turn into our own worst enemy. Ask yourself: would you behave this way to your friends? We all need support and encouragement from everyone, including ourselves! If you would support someone else during troubled times, the first rule is to remember to do the same for yourself.