When you’re living with a very rare disorder such as atypical hemolytic uremic syndrome (aHUS), with its host of potential symptoms, you may find it difficult to stay motivated. Here are some ideas that may help spur you on.
Stick to times you’re most productive
aHUS can cause shortness of breath and fatigue. To have a productive day, you should try to follow your personal body clock. You don’t want to set yourself up for failure by trying to accomplish a task when you don’t have the energy. There may be times during the day or night when your symptoms are more manageable. You know your body better than anyone, and sticking to your body clock can help you stay motivated.
Breaking tasks into smaller goals can help ease stress and promote feelings of accomplishment, particularly if you’re burned out from dialysis sessions. This strategy, in turn, can lead to greater accomplishments and an overall better sense of wellbeing. Perhaps you’re reorganizing and want to move several small items to another room and reconfigure your set-up. Depending upon how you feel, why not spread the task over two or three days? Then reward yourself with something you like to do.
Developing and maintaining a support network is important for physical and mental health. Positive support from friends, family, peers, and colleagues can make you more resilient and help you stay motivated.
There are several organizations that offer patient support, and information on the latest developments pertaining to aHUS. Some of these organizations are:
- The aHUS Foundation
- The aHUS Alliance
- The American Kidney Fund
- The National Kidney Foundation
- aHUS Canada
- The National Renal Complement Therapeutics Centre
Make time to rest
Constantly dealing with symptoms such as hemolytic anemia and possibly seizures can be tiring. So schedule time each day to rest or relax, and appraise your family or caregiver. When resting, focus on nothing except relaxing your mind and body. This is important for your emotional and physical health.
Unwind with music or a book
Music can be restorative when you’re feeling down. Turn on your favorite sounds and get lost in the moment. One song may move you spiritually, while another may help you relax. If you need to get moving, an upbeat tune may be just the ticket.
Likewise, a good book can lift your spirits. Or it can introduce you to another country or culture, and maybe motivate you to learn more.
You may find yourself constantly dwelling on what’s wrong. To counter this tendency, make a list of things aHUS prevents you from doing, then a list of potential workarounds for each limitation. If you experience confusion or brain fog, for instance, ask your partner or a friend to keep track of your appointments. Retaking control incrementally promotes optimism.
If you’re feeling up to it, and the weather permits, get outside. Having a seat in the sun by some water or flowers also helps relieve anxiety and depression. If you can’t go out, consider opening a window and letting fresh air in. If birds are singing, that’s a bonus.
Last updated: Sept. 21, 2020
aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?