the Lyme Diaries: One Day at a Time

March 19, 2015

Happy Thursday friends! Last week in my Thursday Health Thoughts post I shared about the long winding road to healing with Lyme Disease.To be honest it was one of the most difficult posts to write just because it is hard to come to terms with how long of a journey that this is. At the same time I received numerous emails from Lymies asking how to emotionally handle the journey. I don't have any "wonderful" advice, as I have shared numerous times on here and on instagram how difficult this journey truly is, but I have learned a few tips that I wanted to share today. One of the biggest pieces advice that I give to anyone who has been diagnosed with a chronic or serious illness it to take one day at a time. Here are some thoughts on how to handle the rough days and how to take the long winding journey to healing day by day. 

  1. Be upfront and clear with your limitations – no matter the response. This was  definitely one of the hardest lessons for me to learn because at the beginning I wasn't even sure what was completely going on with my body let alone trying to explain it to others. In addition when I first started expressing what my limitations were to those outside of my family I did not receive the support that I was looking for. I won't lie. There have definitely been tears behind the scenes. I remember last summer when I had really wanted to see some friends and knew that their visit would coincide with a dentist treatment that would sideline me for a couple of weeks. I tried my hardest to express this but it wasn't understood. The day after the dentist treatment (when I was very sick) I received a text message stating, "we would love to see you - just to say a quick hello and give a hug". I replied back it wasn't possible and reminded them of what I had stated before but the text message I got back was anything but supportive. In fact it turned the tables on me that we hadn't been able to see each other in a while despite the fact that I tried to set up times before this appointment. I share this story simply to say that I do get it. It can be difficult when there is a lack of understanding. Despite this I am so glad that my family and doctors have continued to encourage me to keep politely but firmly stating limitations and barriers and overtime I have learned that those that love you will support you and understand these limitations in your health journey.
  1. Accept help
  1. Find specific things that your family and friends can do to help you. The difficult thing with a chronic or long term illness is that many people do not know how to specifically help you. A friend of mine who struggles with extreme back pain due to a surgery that went wrong finally took her friend up on her offer to do her laundry. She realized that this allowed her friend a way to help while also helping her accomplish a task that caused her pain to flare up and could literally put her in bed for days. Personally, I have been so grateful for my dads help in taking care of Scamper with his litter. There is no way that I could change the heavy litter and this has been a blessing to me!
  1. As hard as it is be vulnerable with your tribe and the people in your code. This prevents lots of awkward issues from occurring down the road. A "funny" story that one of my friends shares is that when she went to meet her boyfriend's family for the first time she was embarrassed to share with them (ahead of time) her food allergies. She asked her boyfriend not to also. Due to this when she arrived she then was embarrassed to have to share that the meal that his mother had spent a day making included all of the foods she couldn't eat. My friend had this happen a number of years ago and is happily married to this man and loves her MIL but as she says, "it would have saved me a lot of embarrassment if I had just been vulnerable at the beginning instead of after I arrived". No matter what it is that causes you to feel vulnerable whether it is sharing about food allergies or whatever take the risk and know that those who love you will support you throughout this journey.
  1. Be the best friend and family member that you can be while understanding that you are not the same person that you were before illness changed you. Send birthday cards, connect with people on facebook and other social media connections, and make phone calls when you are able. Stay connected to your tribe as best as you can. I get it. I really do. There are so many birthdays and anniversary's and special occasions that I miss because in "crazy sick world" time elapses and morphs. Do the best you can. Those that love you will accept that you are still you.
  1. Understand that this is just a season. So many people that I meet who are chronically ill or are going through a health crisis used to be the people that were the ones that were coming to the rescue and able to do things for their friends. Unfortunately illness can change that but coming to terms with your illness, adjusting and adapting to a new way of living, and finding a new path will only be a season. Take one day at a time realizing that this is not forever.
  1. Be patient and Choose Your Timing Wisely. Understand that your true friends and family do want to understand the health lingo even though often they have no idea what words means. Give them a chance to understand. Sometimes you have to explain things a thousand times but remember these people really do care and want to understand. (Side Note: Pick times that are appropriate to try and talk about serious health things. You might want to talk about it the moment that your hubby gets in the door from work, but it might be best to wait a few moments. *smiles* In our day of "instant technology" it can be easy to just start sharing everything over a text message. Sometimes, this really is not the best way to share things. *smiles* You get my point. Be patient and choose your timing wisely.)
8. Acceptance. For every person this is going to mean something different but Amy Charmichael was right:"In Acceptance lies peace".

9. Let friends go who are not willing to walk this road with you. It is a sad reality but as I have shared before on the blog, it is a reality in "sick world". Sometimes people just can not handle sickness. I remember at the beginning of the journey (about a month after I had been diagnosed with Cancer) I had a guy (who I had been a friend for over ten years) tell me that he "just couldn't handle it". Sometimes it is less dramatic than that with people who just stop calling, stop returning messages, or just "drop off the planet". Friends, it is okay. Yes, it does hurt, but if we focus on that alone we can miss the immense blessings of others and the unexpected blessing of illness. Wish them well, let go of bitterness and walk the road in front of you with dignity. Stick to the Code. {Yes, I did feel like I was talking about a Pirates of the Caribbean movie right then. *smiles*}

10. Do the best you can to attend and be present for important events. Even if you don't look or feel the best people love you not what you look like. I remember attending a dear friends wedding a couple of years ago. I looked anything but "good". Imagine my surprise at learning that people love you and really don't care. In our society we often think that we have to "look a certain way" to enjoy events or people will pity us. Your true friends and loved ones are going to be glad to see you, wheelchair or walker and all. Do the best you can to attend important events. People love you and want to see you. 

11. Choosing to be Happy is a form of Courage. In one of my most read posts I addressed the topic of answering the "but you don't ACT sick" statement. Throughout this journey I have learned a very important lesson. Choosing to be happy and to find the joy in everyday is a form of courage. To me it is a way of saying, "take that Lyme Disease and Cancer". To me it is choosing to live. 

Do you have any tips for taking "one day at a time" when fighting a chronic or serious illness? Please share them in the comments! I would love to read them!

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