Another hour plus with our lovely exercise therapist yesterday.
In the car on the way I asked our girl what she would be answering when he asked her how her week had been symptoms-wise and she replied with a four letter word starting with ‘s’. This actually was good to hear – not that I would encourage her to swear at any time – but I knew then she wasn’t going to gloss over the reality! I’m always alert to this as she is the kind of kid who wants to make others happy and that’s something we’re trying to unlearn a bit.
The EP made me feel better as always. (Yeah he’s not just good for our girl!!! Also for her protective mother!) He agreed we would cut back on exercise this week and continue to try to work out a school and exercise level where she can work without getting worse. Unfortunately for this, but fortunately otherwise(!) school holidays start next week so we won’t be getting a realistic picture of whether the new schedule is manageable until school starts again.
Our girl wasn’t as sparkly as usual as she was feeling pretty low and she admitted today she was zoned out for a lot of yesterday’s session. I’m so thankful at times like this that although she has this illness whilst still a child at least she has someone around her who’s still inclined and has (made) time to look after her. And she doesn’t have to earn her own living….lovely Dad does that bit (I can’t work at the moment as she is home 70% + of school time). I read of young adults with CFIDS who’ve returned home to live with parents and other people who are out there trying to make it on their own…or, worse still, parenting others with their limited energy/concentration skills and whilst in varying degrees of pain. Hats off to you guys and may today bring some happiness in whatever form.
Looking back on the week I could see it had been a busy one, on top of the exercise and rather too busy weekend I had also forgotten about the evening trip to see Julius Caesar at the theatre…ooops. It made it unclear as to whether the crashing was from 15 mins on exercise bike or other activities.
New insights from the EP:
1) I mentioned how hard it was to know what was causing her to crash due to the possibility of the time lag being up to 3 days. He said some research had actually shown it can even take up to 5 days but…and this was really helpful…. he was fairly certain in our girl’s case the crashes were happening same day or within 24 hours. This confirmed both my daughter and my observations. It is just SO helpful seeing someone who has seen so many CFS cases (12 years experience) and can make statements like this. When I’m not torturing myself that she shouldn’t be doing any exercise at all I feel we are VERY blessed to have this expertise available! (It would be too simple if I wasn’t torturing myself about something!)
2) I asked his opinion of Florinef to raise/stabilise our girl’s blood pressure. We got into a conversation about licorice root which I am now going to see if we can add to the supplement intake whilst waiting for the next few weeks to pass. If I can find any form of it that doesn’t taste like licorice! Yep you guessed, the girl can’t stand licorice!
Yesterday before we went to the EP she did 15 minutes on the bike for the first time since Friday and she’s gone downhill again today after feeling slightly better yesterday. Although I never want her to feel worse at least this does seem to confirm that 15 minutes on the bike is too much. We shall go down to 10 and see if we can get a baseline happening.
We’re slightly hampered in our ‘manipulations’ of her condition as her little ribcage is too small for any of the 3 heart rate monitors we’ve tried to sit snugly in the right place and get a reading! Will have to stick to manual readings (yes! in this day and age! surely there’s an iphone app????!) This will be a new skill for us but no doubt we will get very used to it! It’s just very unfortunate as it means I have to be involved with her activity when really we’re aiming for self moderating. ( And less scenarios where Mum may be told to back off , not more!)
Anyone know of heart rate monitors made for kids? I guess they must exist for hospitals…..
Hope the sun is shining where you are. Or it’s raining if you prefer that or are in drought!