I woke up this morning feeling terrible. I forced myself out of bed got “half dressed”, went downstairs to get the celery juice my husband made for me, and got on the treadmill.
The first 15 minutes I was thinking to myself “this is a terrible idea, I am too weak to walk and will make myself worse”. I kept going.
At 15 minutes my body seemed to start adapting to being upright and moving and I started to feel stronger. I walked until I felt better. And it worked.
I kept going until I hit 2 miles at just over 1 hour of walking.
It felt great to push and great to accomplish a 2 mile walk with what could of been a terrible start to the day.
Reality of Pots Syndrome
5 minutes after getting off the treadmill and stretching it hit me. I was crashing. I collapsed to the floor and just laid there for a while trying to snap out of it.
You have a good day and get excited, then you have a bad day and spend the whole day trying to figure out what you did wrong.
Living life hour by hour
You have a good hour accomplishing great things followed by a bad hour of depression and debilitating fatigue. You start to think, was that “good” hour of worth the price I am paying now?
There is a cost to accomplishing milestones. Take the video below as an example. I had just taken a HUGE step forward and traveled from France to Madrid by MYSELF. I have not traveled alone since getting sick, it felt both great and horrible all at the same time. I was exhausted.
There is a cost to living. There is a cost to washing your hair and brushing your teeth. You have to make decisions every day on how you are going to spend the little energy you have. And then learn to not beat yourself up when you constantly feel like you are doing everything wrong.
I remember when I was completely bedridden (for 4 years) thinking to myself. If I brush my teeth, then I won’t be able to eat breakfast. If I was my hair, I won’t be able to mentally keep myself strong because the pain will get 100 times worse and I will break.
There is a price to pay for every activity you choose to do that day. I guess you just have to decide what price you are willing to pay? Sigh…
How are you guys doing handling the ups and downs?
