Due to the complexities of your case…

I have three hospital appointments coming up in one week. That’s a big deal. The standard routine looks something like this: wake up, get up, eat, get dressed, wait for Chris to get everything ready like loading the wheelchair in the car, drive an hour or more to the hospital, find a wheelchair friendly route from wherever you end up parking, which can be quite far to the door, enter, see receptionist, wait, then usually see nurse, wait, see consultant, wait, go for whatever test is ordered, wait, see consultant again, trek back to the car, eat, drive home and usually around 6-7 hours later, collapse and complain about being too tired to eat dinner.

Apart from the hassle and fatigue of doing all that in one day when I’m already tired and hurting before I’m finished getting dressed, there’s the additional considerations we have to take into account. I can’t get dehydrated, I can’t skip regular mealtimes and at the moment those are every 3-4 hours, I can’t get too hot or too cold, I can’t breathe in city air for long and I have to conserve as much energy as possible and if we miss anything, very bad things happen. If we get everything right, I’m still so exhausted by the end of it that a bump in the road in the wheelchair or car dislocates joints and getting them back in particularly in a moving vehicle isn’t easy or always possible. Sometimes we pull over, sometimes we just wait it out until we get home. The next day is spent in bed and the day after that I can gingerly move from the bedroom to the living room and back to the bedroom, just about. I’m tired and hurting more for the week. Three appointments like those in one week is very bad news.

I’m rather annoyed that I have to drive 35 miles for a fetal ECG, spend 4-6 hours at an appointment, see two consultants and then four days later have to do it all again at the same venue for my ECG and echo, particularly as all of it is overkill. I already know what’s wrong with me, I already know what the results will be, I understand that double checking is the safe thing to do and that new doctors are panicky and want as much information as they can get, but the strain of all the additional appointments to tell me everything I already know is not helping the situation. I’m hitting the burnout point of specialist appointments and tests again that tell me nothing new. It’s not helpful, it’s not reassuring, it’s just tiring and stressful.

I’d really like it to stop now, but as long as my obstetrician is scared by the risks, I’m not in a position to object. I’ve lived with all this for a lifetime and I’ve been under her care for less than three months. I can’t blame her for wanting as much information as possible from as recent sources as possible. It feels like a waste of time, but in the million to one chance that one of the tests pick up something new that may turn out to be vital, I can’t object much either. I may feel like I’m wasting everybody’s time, including mine, but there is something to be said for playing it safe, even when that comes with a bunch of tiring days out at the hospital. And so I don’t complain, I’m nice and pleasant and co-operative. I while away the time in waiting rooms and I spend days recovering afterward and I put up with it. Because it’s the sensible thing to do.Maybe part of getting older is learning to take less chances just to avoid a little effort. And maybe it’s realizing that apart from the few idiotic doctors that shouldn’t be practicing medicine, the rest are actually on your side, trying to help and increase your odds for all kinds of things as much as possible. Letting them do their job is the right thing to do.