It is hard to find accurate statistics on Lyme Disease, but a 2014 study revealed that 40% of adults with Lyme are unable to work full time. For those that are able to work, many modifications must be made to accommodate pain and fatigue, to manage stress levels, and to allow for rest when necessary. See JAN (Job Accommodation Network) for more information.
Of the 4 adults we have given financial gifts to, 3 are unable to work outside of the home. Without a steady income and benefits, affording Lyme Disease is a challenge, if it is even possible at all. This leaves people trying to reinvent themselves under circumstances that are less than ideal. I find it interesting that 2 of these 3 are artists sell their work. Grace is self employed as a photographer which allows her a great deal of flexibility in setting her schedule. She is only 20 and not fully independent yet, but my hope is that her art will allow her to make a living on a schedule that accommodates a healthy work/health balance.
These are the things I remind Grace, and will continue to remind her of, when she is tempted to go beyond what her health will allow:
Be Your Own Advocate
Whether it is a social gathering or a client with a job offer that is too demanding physically, it is always okay to be your own advocate. The tricky thing about chronic Lyme is that you can say yes to something a month away and then as the event gets closer you realize you are not feeling well. In this case, I advise her to adjust her days leading up to the event and after the event to free up time to rest and recover. People must realize that what is a “normal” event, like a party, or a day trip, or a photo shoot, can take days or sometimes weeks to recover from.
It is okay to say "No Thank You"
Turn down a job? Most of us would never give that advise. But if the job is one that will have you on your feet for 8 hours, climbing stairs, sitting in uncomfortable chairs, limit your access to food and water, not allow for multiple breaks, or be too much of an emotional stress, then yes, it is okay to say “no thank you”.
Your Health is your Wealth
If you do not do what your illness requires than you risk losing the ability to work. Lyme Disease has a huge range of symptoms. Some people can work through them and others simply cannot. Assuming you are able to work in some capacity, it is imperative that you treat your body kindly. Take your protocols. Set timers to remind yourself if necessary. Hydrate your body! Build rest breaks into your day regularly.
Hopefully you love your work and it is not a burden. Either way, be in balance between what you expend and what you take in. Be kind to yourself by removing toxic thoughts and people from your life. Bring in beauty and love and light through simple sensory things like essential oil fragrances (which create health through raising your natural frequency), music that brings you joy, food that is delicious and nourishing, friendships that build you up and prayer/meditation that grounds you.
Our life with Lyme is just that, our life with Lyme. This disease looks different for different people. Some people require major life adjustments, others require minor ones. When I created Partner in Lyme it was with the goal of providing money to help people heal in body, mind and spirit and some of our awardees have used their money to improve the quality of their life which in turn, allows them to work more productively from home.