I have to admit that when we have a week of no medical crisis we all fall asleep at the wheel. The energy that Chronic Lyme disease requires, not just from the patient but also the family, makes it very difficult to function when there is a lull in full alert medical watch.
Bronwyn tends to just rest it out as each new crisis takes so much out of her that when the opportunity to shut off comes about that is just what she does. Tending to her three step-children. Yes folks on top of all the medical devastation she is raising her instant family. Always trying to involve the kids in taking care of more of the household chores, and more responsibilities. Three boys ages 10 for the oldest and 8 for the twins. They embrace helping her out with her medication routines every 4 hours. (See image in posts below)
As a mother far away, phone contact and skype are what holds us together through the distance, but that doesn't make it any less difficult. It takes all my energy in support that it is hard to keep up with other things. I'm just too tired all the time. After work my own body and brain shuts down. Week-ends I catch up with household chores leaving little time for other things. My drawings of expression of what Lyme disease is doing to us is all I can muster. It somehow calms me and allows me to meditate through the fearful thoughts, and hang onto the positives. I know the pieces I'm doing are telling our story visually.
Chronic Lyme disease is a horrible disease and not just something you live with. It slowly takes out pieces of your body until you are fighting with little reserve left. We must start fighting for better blood testing to catch this monster before it goes unchecked for too long. As a society we must also get our governments to educate ALL our doctors on Chronic Lyme disease, as they do not have the tools or knowledge to even recognize it when they are dealing with patients with multiple health problems. Because Lyme disease is a great imitator it allows the bacteria to invade your body, while medical teams treat a disease that is not the source of the health issues. For example, Lyme disease can also look like ALS, MS, Parkinson's, Alzheimer's, and many others. Please read: http://canlyme.com/just-diagnosed/testing/common-misdiagnoses/ before your doctor labels you with an illness that is not the real culprit.
insist on being tested for Lyme disease before accepting any diagnosis. It is the only way as a society we will be able to protect ourselves while demanding better care for what the real problem may be.
Bronwyn tends to just rest it out as each new crisis takes so much out of her that when the opportunity to shut off comes about that is just what she does. Tending to her three step-children. Yes folks on top of all the medical devastation she is raising her instant family. Always trying to involve the kids in taking care of more of the household chores, and more responsibilities. Three boys ages 10 for the oldest and 8 for the twins. They embrace helping her out with her medication routines every 4 hours. (See image in posts below)
As a mother far away, phone contact and skype are what holds us together through the distance, but that doesn't make it any less difficult. It takes all my energy in support that it is hard to keep up with other things. I'm just too tired all the time. After work my own body and brain shuts down. Week-ends I catch up with household chores leaving little time for other things. My drawings of expression of what Lyme disease is doing to us is all I can muster. It somehow calms me and allows me to meditate through the fearful thoughts, and hang onto the positives. I know the pieces I'm doing are telling our story visually.
Chronic Lyme disease is a horrible disease and not just something you live with. It slowly takes out pieces of your body until you are fighting with little reserve left. We must start fighting for better blood testing to catch this monster before it goes unchecked for too long. As a society we must also get our governments to educate ALL our doctors on Chronic Lyme disease, as they do not have the tools or knowledge to even recognize it when they are dealing with patients with multiple health problems. Because Lyme disease is a great imitator it allows the bacteria to invade your body, while medical teams treat a disease that is not the source of the health issues. For example, Lyme disease can also look like ALS, MS, Parkinson's, Alzheimer's, and many others. Please read: http://canlyme.com/just-diagnosed/testing/common-misdiagnoses/ before your doctor labels you with an illness that is not the real culprit.
insist on being tested for Lyme disease before accepting any diagnosis. It is the only way as a society we will be able to protect ourselves while demanding better care for what the real problem may be.