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Pacing yourself while living with sickle cell

Tola Dehinde

Often, people living with chronic long-term pain can get into a cycle of overdoing things on a good day and doing practically nothing on a bad day. Over time, the good days become less and less as the bad days become more frequent.  Living with sickle cell has meant that I have had to learn how to pace myself. When I don’t, I usually suffer the consequences of not doing so and this is all because of the fact that a sickle cell crisis could flare up unexpectedly.  Learning how to pace myself has helped me tremendously in the last few years.

Anyone living with sickle cell needs to understand how to pace themselves. The reason I say this is because studies have been done over the years confirming the association between pain and activity limitations.  Most people that I know living with sickle cell like to push through the pain that they might be experiencing as a result of a complication from a sickle cell crisis. However, doing so can cause flare-ups in terms of bringing about a sickle cell crisis itself, making things worse regarding the complication that one is living with. It equally worsens fatigue, which leaves one debilitated, demotivated and possibly depressed.  This could result in one being unable to do anything for days or weeks. If one doesn’t pace oneself, the pain could come earlier due to increased sensitivities in one’s body, which ultimately leads to a decrease in one’s overall activity levels.  This is why it is essential not to overdo things on good days.

Research has shown that pain is highly predictive of any physical task, social activity, and emotional stress.  This is why it is important for one to pace oneself no matter the deadline that one has to meet. Pacing oneself will make a big difference between falling ill or meeting a target.  When one paces oneself, it means one is listening to one’s body and also one isn’t ignoring tell-tale signs of fatigue. It also means adjusting things where needed and knowing one’s limits.  If one is in pain constantly, then depression will set in because chronic conditions like sickle cell and pain are interrelated.

When one paces oneself successfully, one is able to create a good balance between energy and activity levels; it increases confidence, maintains motivation, reduces pain and increases endurance levels in terms of muscular and cardiovascular systems.  If one lives with pain daily, it will affect one’s quality of life as well as physical and social functioning.  If one is constantly unwell, then one’s physical and social interaction will decrease.

In order to know what pacing means to you, you need to know how much activity you could do before a sickle cell crisis occurs, which is called knowing your baseline level. For example, choose an activity; it could be sitting, standing, or walking. Note the limit of time you can comfortably do this activity and your baseline will be half that time.  By using a baseline for your abilities, you can organise your activities to time and not to pain, and this gives you more control. You can then carry out tasks that previously caused you discomfort with more ease. Initially, you may find it hard to limit yourself when you are pain-free, but using a baseline leads to improved tolerance and achievements when used with goal setting. Living with sickle cell can lead to a reduction in carrying out daily activities and this could be because the activities increase pain in the body.

Goal setting is about identifying what you can do and work towards achieving that goal. Goal setting has been shown to be a powerful way for people to improve their quality of life and sense of control. It is important that whatever goals you set yourself, they are personal, meaningful and make you feel good.

Knowing your threshold as regards pushing yourself is different from person to person and will depend on how severe sickle cell crisis manifests itself in your life.  Acute and chronic pain ruins quality of life more than any of the sickle cell-related complications, a study found out.  Pain is not simply the result of a biological process, but it is influenced by social activities.

 Why pace yourself?

  • Pacing is an essential technique for mastering chronic pain and often involves taking a break before you fall ill.
  • Pacing may reduce the severity and duration on flare-ups.
  • Pacing may reduce feelings of frustration and low moods through repeated pain crises.
  • Pacing may reduce the risk of medication dependency and any adverse effects from it.
  • Pacing may also reduce the risk of losing physical conditions.

If you don’t practise pacing, psychosocial stress and negative mood will set in.  This is why it is vital to practise pacing in order to have a positive mood and also have an active lifestyle that will destroy the negative effects of being in constant pain that affects quality of life and functioning.  Moderate to severe anaemia is a common feature of sickle cell and may lead to fatigue and weakness, resulting in poor performance and reduced physical as well as cognitive functions.

There are three elements to pacing: taking frequent short breaks, breaking up tasks into smaller bits, and gradually increasing the amount you do in the long run.

 Reference – www.nhs.uk

If you would like to get in touch with me about sickle cell, do so, via email: [email protected]  And do check out my blog:     https://www.dailylivingwithsicklecell.com/    My book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com

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