Earlier I wrote about what swimming has done for Meghan. The thing that saved us. But it has also been really hard, too. Doctors aren't sure why, but it seems that a lot of people who have POTS are highly motivated to do well in all that they do. They are often those who, before their illness, couldn't relax, nerves on edge, and always doing something. That is definitely the case with Meghan and several of the people we have met along the way. Meghan's motivation to do well this high school season was often above and beyond - and she allowed herself no room for failure.
Our team is pretty typical - a mix of families who want to win at all costs, those who just enjoy the sport, and those who want to win but also find "team" just as important. Meghan was sidelined with POTS for 2 years before we found a plan and some hope with her IVIG treatments. Not a cure - but life changing hope. She was incredibly determined and down right stubborn when it came to practicing when we finally determined she could return to swimming in August. She was supposed to take it easy to start. Ease back into it - maybe swim a few days a week. Her doctors initially worried about taking steps backwards. I was afraid she was taking on too much. But once the season began, she down right refused to listen or cooperate. Her coach was patient and understanding - he did his best to help me as she argued with him as to why she was still in the water when he had already told her she was done for the day. She pushed back against everything that was contrary to her goal - which was to be like everyone else.
Eventually I gave up. I couldn't fight her anymore - it always ended in tears and frustrations I can't describe. Except for 3 treatment or treatment recovery days, she completed every practice. Her practices included one early morning each week (leaving our house at 4:45am) in addition to every weekday afternoon and Saturdays. I allowed only one early morning practice a week instead of two. That was the one thing I would not budge on - for the sanity of all of us. She was barely able to function at the end of a normal day let alone one with morning and afternoon practice. The chronic fatigue POTS patients feel is made worse when they aren't able to get adequate sleep. One of the nights, I held her ipad so she could study for a test because her arms were too tired.
As the season progressed and the physical demand was increased, she always rose to the occasion. But the physical and mental demands of school and swim did take a toll, and the stress on her body made her tics that occur at the end of an exhausting day, more prominent. It was hard to watch and experience. Sometimes the repetitive tics caused her neck or her back to hurt. Sometimes her stomach. She did not care. I tried to reason with her nightly about how she needed to take care of her body and her nervous system. Her response was always the same. She was fine. And on the surface to others, it always seemed fine.
Her big meet was conference and she swam faster than we all expected. She had stepped back into a world where it is hard to take a week off, let alone 2 years. And she was happy - but also disappointed - all she wanted was a chance to swim at state. She eventually realized she had missed her chance to swim on a relay by one and it seemed too hard for her to deal with. Overwhelmingly so. I told her she couldn't swim anymore if she couldn't handle the ups and downs and disappointment that go along with it. Eventually she pulled herself back together and continued practicing with the hope of being chosen as an alternate. As the week progressed, still unsure who would be the alternate, she was told one of her teammates (family, she calls them) had given up her spot on the relay so she could swim instead. The relay was back to back with one of her teammate's long events and she knew how hard Meghan had worked for the chance.
We have had to deal with those not understanding or believing Meghan is sick with an invisible illness. Or families so caught up in their own agendas they don't seem to care or even notice what's happening around them. But just when you think you are alone in your fight, something like this happens.