Saw an exercise physiologist today. 12 years experience working with CFS Graded Exercise Therapy programs. Very friendly, happy manner that our girl loved. If you ask her she’ll probably tell you that the best part of the whole session was when her mother waved her hands about as she usually does when talking (pick the language teacher!) and knocked a box of tissues and a small clock off the table. Yeah hilarious! I myself am obviously totally used to being a klutz as just carried on talking whilst replacing the items whilst the two others in the room fell about. Aaah at least I can still entertain!
Anyway, back to the matter at hand. The EP, as I’ll call him, had our girl totally captivated to the extent that the yawning started much later than it normally would have in a sit down 1 hour session! He totally got that the yawning would happen and from the beginning told her to get up and move about whenever she felt the need. I felt very reassured from all his questions that he understood where she was at and that he would listen to her and only encourage, not insist. After the fairly supportive clinical pharmacologist visit last Friday and the holistic approach of the EP today I feel more optimistic than I have in months.
So, what else did we get from today other than support and acknowledgement? Well, our girl now has a bright orange folder….great colour for easy locating! Her homework for this week is to fill in a chart with what she does each day on an hourly basis and colour in each hour depending on whether it was an easy, medium or difficult activity for her. She also has a few more forms to fill in with detailed questions about her fatigue, her emotions and her physical function. No instructions on activity yet. It seems to be a very comprehensive approach to finding out exactly where she’s at before any recommendations are made.
Have to say the chart reminds me of all those years ago when we did controlled comforting with her when she was waking hourly through the night at six months. I remember I was sick with sleep deprivation but hated the process and cried more than her I think! Having the chart was the only thing that gave me comfort as I could actually see the improvement. So I guess I can totally see where this chart is coming from.
Today I feel very lucky to live in a big city where we can find expertise like this. It’s somewhat irrelevant that it has taken since February to find someone this helpful and that it was only through my research that we got here now and not in several more months time, if ever. Let’s focus on the joy of now and hope like anything that this GET does produce what it promises!
Oh, and in a side note, it turns out that 2 minutes on the exercise bike was too enthusiastic a plan. We need to start with walking and swimming. Good to know.
I should also just mention that the EP found our girl’s symptoms interesting..he said a mixture of chronic fatigue and some orthostatic intolerance. I was surprised that he found that notable…again we come back to the likely sub groups within the CFS diagnosis group? Anyway, the focus is on dealing with all the symptoms and not worrying too much about how she got them from what I can gather. He agreed that she has POTS (Postural orthostatic tachycardia syndrome) and said she’s likely to outgrow it, which was cheering.
Okay, I really must sign off now. A big thank you to all of you who are following our journey. I was really quite chuffed to see how many people had subscribed (you can easily do it by entering your email address above on the right and then you won’t need to check the actual blog to see if I’ve posted as every new post will come direct to your email.) You can’t imagine how much less lonely it makes all this to know people are reading. May your days be sunny and your chocolate delicious!