Good morning lovelies! I hope you all had a wonderful weekend.
This weekend was a busy one for me; particularly yesterday. My family decided to have a Sunday beach day, so we drove to the Buffalo Canoe Club beach on lake Erie and stayed with close friends of ours who have a house on the beach. I was very skeptical as to whether or not I was going to be able to make it; I felt naucious and just plain exhausted yesterday morning. However, one of my mother’s friends at the beach house suffers from chronic fatigue syndrome; she has been wanting to talk to me about what I am going through and all that she has learned over the years from her own experience with chronic illness. It turned out to be a beautiful day and I am so glad that I pushed myself to go. I learned a lot from our friend and she definitely helped me to feel less alone. Everything that she was telling me about and how she feels a lot of the time I could relate to. One of the main lessons that she shared with me that I wanted to share with all of you is the importance of structuring your day and how imperative that is…especially when dealing with illnesses such as Dysautonomia, POTS, chronic fatigue syndrome, etc.
At their beach house, they have people coming and going all summer long. They have many visitors and family and friends staying with them. That being said, this factor does not stop Jill (our friend with the illness), from doing what she needs to do to take care of herself. Her daily routine does not get interrupted just because there are visitors. In fact, she told my mother and I to arrive at around 11:00 am because that is her best time of the day to talk and visit with people. She told me that it is around that time that she goes for a swim. She then comes in for lunch and lies down for a rest around 2:00 pm. In fact, she took me up to one of their guest rooms and had me lie down with her because I was shaky, dizzy, and just unsteady.
Jill told me that the key to battling this illness is figuring out what you can and can’t do in a day, and deciding what activities and events are worth experiencing pain and paying the price for later, and which ones are not. As it turns out, going to the beach with my family yesterday was an activity that was worth feeling sick later for because I had the opportunity to connect with someone who shares the same experiences as I do. I definitely did pay for that good time. I have not had a day that long and packed for a very long time, and I returned home with a sunburn and an awful headache. I lied in bed crying because of the pain. Despite how tired and horrible I felt, I would not take back the experience I had at the beach yesterday for anything. I am so glad that I went, and that is part of what dealing with this illness is all about: figuring out what experiences are worth partaking in and what are not, and scheduling your day so that it is fairly predictable and you have a better idea of what to expect and what you are able to accomplish.
So plan for your days and do not feel guilty about sticking to your schedule. Do what you need to do for youself-don’t worry about what anyone else is doing or what they might think.