There are a lot of sleepless nights with lupus. It feels as if I spend many of my nights awake, and my days trying to take naps to catch up. For someone who was blessed with the nickname “The Hurricane,” this is a huge transition. Going from being someone who was always on the move, to a person who barely wants to move, has been a difficult transition. I’ve struggled with feeling useful after being unable to keep up the pace I once maintained.
Being less active has been one of the most difficult parts of coping with my diagnosis. Going, doing and being was a very big part of who I am, or was. I initially thought I was out of shape when I started to have a more difficult time completing a flight of stairs. When I could hardly walk and talk at the same time, I just felt useless.
Most people feel a sense of a small celebration that permission to rest and relax has been granted once the workday ends, or the weekend rolls around. But fatigue has those of us with lupus doing anything but celebrating the feeling that rest and relaxation needs to happen. We spend our lives wishing we had the energy that everyone else has during the week and makes them so happy to get to the weekend.
Many of us have been told to go home and collect disability, which only exacerbates the feeling of uselessness. In many societies you are viewed as a burden if you are unable to work. It is something we have bought into. It doesn’t matter that you may have worked for decades before you were sent home to rest; all that matters is the present.
Prior to being sent home and told to go on disability, I was a hyper-workaholic. Perhaps it was time for me to take a seat, but doing that has been a difficult transition, so I have found some things to help me feel more useful;
- Share awareness about lupus. Going on social media and sharing not just the diagnosis, but how it is affecting life, profession, family, finances and the mental (as well as spiritual) fallout) of the diagnosis is something many never think about. Lupus often is misdiagnosed for years, and sharing the symptoms you may have experienced before or after diagnosis may help someone else seek treatment. The first time someone thanked me because what I shared online was helpful, I was humbled. Sharing information and your experience online can be very useful for others to know the symptoms, and understand what you going through.
- Start a support group. I started a support group and help administrate a second group. Helping with support groups has helped me feel useful, and it also helped further my understanding of what other people with lupus go through.
- Start an online business. This way you can work from anywhere. I started a business teaching others how to take what they did in their traditional jobs or hobbies, and translate that into an online business.
- Keep busy. There are lots of things you can do to keep yourself busy. Youtube has lessons on language. Skillshare, Udemy and Amazon Video offer quick courses to learn business knowledge that you can start from home. If you’re going to watch TV, it can be more than just entertaining. It also can help you learn something new.
If you ever felt like you were too busy to learn something new that you were curious about, or to take up a hobby, now may be the time to try it.
I’ve been making online videos for years, but never had the patience or the time to edit them. I recently sat down to do this because my editor became too busy. Through this, I discovered that editing videos is creative and calming. I even rebuilt my own website. I’m pretty proud of that because before I wouldn’t have had the patience to sit and make editing either a website or video happen.
What types of things had you considered before, but were too busy to do? Photography, drawing, crocheting? Maybe it’s time to take up a hobby.
Just because we were sent home to battle our illnesses and can no longer work a traditional job, does not mean we are not useful. Things we once looked at with curiosity, but had no time to do, may be our sanity savers. Explore new things; what you learn may surprise you.
Note: Lupus News Today 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. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.