Starting to accept our girl isn’t going back to school anytime soon. The bed rest required by the illnesses of winter and the return of nauseous and intense fatigue have resulted in deconditioning that has eroded any strength she had. Terrible cyclical impact of this illness.
Our focus now will all be on getting her stronger and continuing to tinker with medication to try and get her feeling well enough to get her back on her feet again. We will try to get her stronger by yet again trying to establish a baseline of activity that does not cause her to crash. Feel more tired immediately after yes, but not so that she can’t do the same activity the next day. Before, we found any additional activity affected school attendance but since there is no school attendance to affect now….
If you could only see how determined our girl is to get better. She’s been quietly putting herself to bed earlier and earlier in the hope that will make her feel better in the morning. (It hasn’t helped….even with the rest that comes from lying there longer trying to get to sleep, even with the medication. She hasn’t complained – she rarely does – I just know from passing her room) And just now she’s done reclining leg exercises and a squat…yes just one from the girl who used to do 50 push ups etc. It’s exhausted her so much that when I asked her if she held on to something to do the squat she couldn’t remember. This is a cruel illness. How brave is it to do something hard , that makes you feel terrible, that only ‘might’ make you better?
On the upside, we are seeing a physiotherapist today who has experience with CFS and should be able to give us more guidance with exercises, which we can then take to our physiotherapist whom our girl trusts.
We also have an appointment with the new team at RCH next Monday. Our girl is currently struggling to see the point of attending the session. She’s beginning to reach the point of “Please, no more false hope.” This morning she said, “It’s horrible when you realise this isn’t going to go away anytime soon.” As always, her maturity has helped me too move on. I really want to get her to see the team though. Even if we only learn one thing it will be enough. I am puzzled by the logic behind scheduling a 3 and a half hour clinic starting at 8:30am for kids with ME/CFS though. Makes you wonder before you even get there…..
So, in conclusion, she may be not able to do all the things she once could and is missing out on so so much,but…..and it’s a very big but, she is still funny, kind, brave, ours and still here.
Bit of a teary smile today but a big wave!