I wanted to help patients and my friends by sharing some helpful tips about Scleroderma, an autoimmune disease in which the body attacks itself by destroying its own cells and functions. The effects of Scleroderma
are quite severe and can affect a patient’s daily activity and living, both severely and abruptly.
Many people do take for granted the ability to do every day activities. For some patients, it has become a task. Having observed someone I have come to know recently with Scleroderma
, it has made me more aware that we need to balance rest and activity, more so when our body
is not functioning at its optimal level.
Balancing rest and activity is the ability to engage in both the necessary or desired activities of life and to obtain adequate sleep or rest. Knowing your limit is also essential to determining when you have had enough of one thing. We have to set more realistic goals and knowing and defining what we are capable of, will help us to do this. Small steps at a time are better than big steps and overdoing it. As we take our time to accomplish small realistic goals we give our body enough time to handle the stress and recuperate.
So, here are seven tips for achieving the desired balance;
- Balancing rest and activity requires us to set a limit to how much activity we can handle without feeling overwhelmed. It could be difficult from the beginning and an activity-rest chart is a great way to start.
- Sufficient nutrition will give our bodies the adequate energy reserves for desired activities. We should all have and follow personal nutritional requirements or diets which suit our unique conditions. It is recommended to consult a dietitian or nutritionist for our particular body types and medical conditions.
- Assistance is often hard for many of us to accept. While we wish to maintain our independence by not receiving help from anyone or anything, it can save us from being injured or getting tired too fast. It can help us reserve more energy to enjoy leisure activities, hobbies, our kids, house chores, shopping, sports, and all other activities that we like to partake in. Most important all of the activities mentioned is our activity of daily living (ADL). Nothing is wrong in accepting help. Think about it this way; our fingers are at the end of our hands to make picking things up better. Had they not been there we would not be enjoying all of the things we would have been doing with them. Ambulation Aids are a great resource and help many to move around better, save energy and, prevent a lot of injuries. These can include devices like bracing, canes, walkers, and equipment modification for activities of daily living (ADLs). Consult your physician and community nurse for help with finding a satisfactory ambulatory aid to make moving around easier.
- Determine what makes you tired and weary. Rate them on a scale of 1-10 and list them from highest to least exhausting. This will help you figure out what will need to be done first and when to rest, before and after. It also helps you figure out whether you need help or not, either from someone or from a device.
- Monitor you sleep and rest patterns. See if you are getting enough sleep and rest and set aside a designated time to get rest and sleep. Personal wearable health devices and fitness trackers are becoming more ubiquitous and can help you monitor both your sleep and activity levels.
- When doing activities monitor your heart rate. We necessarily do not go around checking our pulse however we can notice when our heart starts beating really fast. We should slow down or completely stop and breathe; catch your breath.
- Breathing exercises will allow our cells and vital organs to get the adequate oxygen needed when we are fatigued from activities. Increased activities might necessitate the need for extra and supplemental oxygen, found in portable devices. Supplemental oxygen can help those who have increased oxygen demand. You can use a portable finger pulse oximetry to monitor the demand for oxygen; it shows the oxygen desaturation levels in our blood. It is a small apparatus that can be carried in our pockets and handbags.
Janice John Mitchell RN, ORRN