Just realized that Day 30 of May’s posting did not go out. So here it is.
Having a support system is essential to healing from any chronic illness.
The most important is support from family. It’s really difficult to watch someone you love suffer and it’s extremely difficult to be a care taker.
When someone in your family becomes sick it changes your life too. It changes the lives of everyone in your family. When you become sick you are not be able to do what you could before. Your spouse or significant other and your kids are extremely affected that. So one day you go from having a normal life together and the next you can’t even get out of bed. So of course your loved ones step in to help but when it’s a chronic illness it changes your lives dramatically. It’s not like having a flu where you are feeling sick for a few days, stay in bed and then you’re better and back to normal. It’s very different and very difficult on everyone when an illness becomes chronic. Chronic usually meaning longer than three months.
It’s hard on the sufferer because they feel guilty that they are no longer able to function normally. And it’s hard on all the family members when that person isn’t doing what they used to do. So what do you do as care takers?
- First and foremost you must care for yourself. Remember taking CPR classes and they say to check the scene to make sure it is safe before you step in to help. If you run to help someone and injure yourself in the process you are no good to them. You can’t help. So think of it this way. If you constantly taking care of someone and wear yourself down you may become to sick to continue to help. So to all care takers out there. Please remember to take care of yourself too. Please remember to take care of yourself mentally and physically. We get it! We understand if you need to go out and distress with friends or go out and exercise to keep you healthy. We get it! We need you to be healthy. We are of course disappointed that we can’t go out but we want you to do what you need to stay healthy.
- Educate yourself as much as you can about the illness. The more you know the better you can help. We try to learn as much as we can but we are operating in a comprised state. We can’t remember everything. But if you know everything we know you can help tremendously.
- Go to doctor appointments with your family member. Lyme brain can make someone very forgetful. So having another person at a doctor visit to help interpret and remember what the doctor said is really important.
- Ask how you can help. Be specific. We don’t want to be a burden. We were once very independent and it’s really hard for us mentally when that changed. We want to be able to make our own meals, prep for our treatments, sort out pills to take, drive ourselves to the doctor and clean up after ourselves. We don’t want to be dependent on anyone. We don’t want to have to “ring the bell” from bed when we need something but we have to. We need you!
- Don’t be mad if we can’t go to every family function. We get exhausted putting up a front and pretending we feel fine when we are not. We don’t want the have to leave early with our driver or lay down in a back room because we don’t feel well. So most of the time is better for us and less stressful to stay home.
Sadly, many people with chronic illnesses don’t have family support. I’m lucky I do! So thank you to my primary caretaker Chris and my sister for driving up to help.
Support from friends means so much to us. Many of us have lost friends along the way because that person just didn’t get it or couldn’t accept it. You realize who you true friends are and the ones that doubted you or judged you really we not a true friend to begin with. So thank you to all the good friends that stay by us through think and thin. We love you and need you!!
We don’t want to constantly cancel plans. We don’t want you to stop inviting us places even though we frequently can’t go. We still need to know you are there and that you still want us in your life. Yes we get jealous when you are posting on Facebook about fun adventures and vacations but we don’t want you to stop your life. We want to be able to pick up where we left off when we are better. We are temporarily living vicariously through you. So keep the posts coming!
Lyme sufferers are constantly dealing with medical professionals that not only deny our disease but also don’t believe our suffering. We often feel bullied by physicians. We are constantly told that there is nothing wrong with us and we need a psychiatric help. We trusted the medical community in the beginning and try to continue to trust them but unfortunately they fail us so finding a good team of MD’s is difficult. We just want them to believe us and acknowledge that our suffering is real. We want every medical doctor too know that Chronic Lyme Disease is real. We want them to believe that our weird or uncommon symptoms are not made up. We want them to believe us when we say we are debilitated with pain. We are tired of being treated like addicts. We are tired of being judged. We are tired of the fact that the medical community has lost site of their oath of helping patients.
And I personally would like every medical professional to live in my shoes for one month! Not one day! One month! You can not understand this disease unless you live in my shoes! So stop judging me!
But don’t give up if you haven’t found the support you need. Your team may include a Naturopathic Doctor, Acupuncturist, Massage Therapist and/or Personal Trainer. So, keep searching for the right team and you will find that there are still some good compassionate people that believe your suffering is real.
Chronic Illness Warrior
When you have a chronic illness you have to put yourself first. If you don’t you will never get better. You have to say no to things if you know in your gut you don’t have the energy to do it or know it will cause you to suffer physically if you say yes. But putting yourself first is not being selfish. You need to take care of you!
We can’t spend time and energy around people that are negative or judgememtal or that generally stress us out. We just can’t. We need our energy to heal. We don’t need added stress taking up space in our brains so we will eliminate people from our lives. It’s ok. People come into your life for a reason but that doesn’t mean they need to be in your life forever. Yes it can be sad but necessary to move forward in life and get better.
Remember who is on your support team! Try and remember that your family and friends don’t want to see you suffering. They want the person you we’re back just like you do.
No one will ever completely understand what you go through no matter how much you explain it. No matter how much they see you struggle they still do not feel what is happening inside you. Accept that! They can’t. They never will. Let them ask a million questions and answer them the best you can even if it sounds stupid or judgmental. The family and friends in your support system believe you and are just trying to learn more.
So thank you to all my wonderful family and friends that have stayed by my side in sickness and in health!