One of the most difficult things I have to deal with is that a 12 year old really has no concept of pacing. She spends most of her time – particularly in the last couple months – resting, unable to do much of anything on a daily basis. Unable to tolerate light or noise, dizzy and lightheaded whenever she stands up. Nauseated to the point of being unable to eat. Head pounding and joints aching. Bored silly; sick and tired of being sick and tired. Then a day arrives that she just doesn’t feel like being sick or impaired, so she conveniently forgets her limitations and pretends she is fine. And she carries on like she is the normal 12 year old she wants to be. That is fine and dandy until the bill comes due… And it always does, usually with a vengence.
This weekend was a prime example – we haven’t been to my parent’s house since Christmas.To stay at their house, Em has a long, narrow flight of steps she has to go up to get to the bedroom, not to mention the 2 hour trip to get there and all of the noise and activity once we arrive. She just hasn’t been able to make the trip in the last year as often as we normally do. But, going for Easter was expected unless Em was really bad. There were a few days prior to Easter that I really had my doubts that she would be able to manage, but she was determined to go. Can’t say that I blame her – she misses out on an awful lot of life, holidays should be exempt.
So, before we left, we had a brief but serious conversation about taking it easy: not making unnecessary trips up and down the stairs, sitting and resting, prioritizing and choosing what would be the most important activities. Saying no if she is unable to do something, etc. She solemnly agreed and I foolishly thought maybe this time she would pace herself through the weekend.
What does she do, the moment we walk through the door? Makes numerous trips up and down the stairs, takes the dog for a walk, goes over to the church (more stairs) to help with preparations for Easter service. I try to convince her to slow down, remind her that there will be a price to pay… But she is in I-am-a-perfectly-fine-normal-girl-so -leave-me-alone mode.
She went to church Easter morning (which was at the top of my list of priorities for the weekend, so I won’t complain about that). Went down and helped with children’s church. Not on my list of priorities for her and she ended up doing things that hurt her. She helped fix lunch. Again, I wanted her to go rest but when she sometimes gets in her head that there are things she must do and then she is impossible to sway. She got grumpier and grumpier through the afternoon, unsurprisingly. Being her chief verbal punching bag, I would much prefer she not push her body over the limit but I don’t get a lot of say in the matter!
By the time we were in the car, heading home, she was utterly miserable. As always, the bill had come due. Severe headache, dizzy, nauseated, severe joint pain – particularly her hips, knees and ankles, from all of the trips on the stairs. Tried to rest in the car, but couldn’t. Was even too miserable to fall asleep last night, although she got precious little sleep all weekend. It was around 2 before she fell into a restless sleep.
I suspect she will barely be able to walk for days and any improvement that she has made over the last couple weeks is gone. It is heartbreaking but she needs to understand that, right now, she is not a normal 12 year old and cannot get away with pretending she is. The price is too high: when she overdoes and looses ground, she ends up bedridden. When she is bedridden and unable to walk, she starts to decondition. The more she deconditions, the more she will be bedridden and unable to function. A nasty and common vicious cycle. It is vital that EDSers stay as active as possible – small progress, hopefully steady, is to be expected and, often, it is all that is possible. Frustrating but true and any attempt to cheat only leads to agony and setbacks.
“You have to go slow, to go fast” is a phrase my son has learned in Tae Kwon Do through the years. You can’t expect to perform at the highest level when you have just started and there is no shame in starting at the beginning. As apt as it is for martial arts, it also fits EDS, particularly when it comes to pacing. Pacing is a technique in which you deal with fatigue and pain by finding a baseline of activity that does not exhaust you. Maybe you start by just getting out of bed and getting dressed every day- whether you feel like it or not. (Believe it or not, this isn’t always as easy as it sounds.) Soon, this is easier and you add another simple task to your daily activity. You do those – and no more- until you build up your strength and can function normally. On the days you feel *good* it is important to resist the temptation to do more than your baseline, so you don’t over do and set yourself back. Slow and steady wins the race. Easier said than done, but it works. This is what Em needs to practice and accept.
But how do you make a 12 year old understand that? She understands it in her brain but not in her heart – she rejects the need for such a concept because she rejects the condition that makes it necessary.
Perhaps my answer is in what I wrote … ‘you have to go slow, to go fast’. It is probably something she needs learn over a period of time. She will need to have a great deal of guidance with until she can manage it on her own – she is a child after all and it is unrealistic of me to think she can even start to pace without me holding her hand. We will start slow and build her ability to pace until she internalizes it and makes it her own. I feel like I have already been doing this, but I will have to apply myself and find a way to make it work. There is too much at stake not to make it work.
As plans go, it is a good one. But plans aren’t always so perfect in practice – particularly when it applies to a 12 year old!
Our Life with Ehlers Danlos Syndrome 