Well my precious girl is home in bed for the 4th week in a row….. She’s been managing a few half days here and there but has been absent something like 70% of the time. The weather has changed and it’s possible her body is taking a beating from the viruses that are all around us. Her fatigue has worsened, her knees are sore and so is her stomach at times.
Her spirits are okay as, when she has made it to school, she’s still felt comfortable socially and she still pulled an 85% in a maths test.
There’s no doubt her fluid intake has lessened considerably as the weather has turned cold so the Florinef does not have as much fluid to source and hence help her body retain. Today she is making a conscientious effort to get that water in so we’ll see. One litre down already! Let’s hope the next few days bring a bit of a pick up.
Yesterday our girl had her first session with our phsyiotherapist friend who is also trained in yoga therapy. M has been incredibly generous with her time…listening to me rattle on about what I know about ME/CFS and what I wish I/we/the world knew over cups of coffee and sharing her understandings with me. It’s been so wonderful to have someone to chat with who has M’s skills, knowledge and empathy. She asked me for links to research and I bombarded her with 6 or 7 papers and yet still she smiles at me! As you can gather, I’m extremely grateful that yet another wonderful professional I know has been prepared to spend their precious time researching an illness so little understood, in order to help my child.
Yesterday M confirmed that our girl is NOT hypermobile. In fact she is pretty inflexible currently! Yesterday’s session consisted of some Q&A and a breathing session whilst lying prone and, at the end, extending her arms above her head. No more than 20 minutes. M is proceeding gently gently which is just perfect for us. She told our girl that any exercises could improve or worsen her condition, it’s a trial and error thing and everyone is different. By taking it gently we should be able to gauge which way we are going.
Today our girl has had a stomachache (one of the symptoms she gets when she’s overdone things) however it’s impossible to know if that is due to yesterday’s session or the fact that she was awake between 3am and 6 am last night. Or something else entirely! Suffice to say we will be persevering with the (gently gently) physical therapy for now.
Those of you who remember our girl’s sessions with an exercise therapist last year and how much she enjoyed the actual sessions but just couldn’t persevere with the exercise without losing energy for school and life, and our experiment with swimming earlier this year may wonder why we are at it again. The thinking is that maybe the exercise/no exercise debate exists because the level of physical activity that many start at is simply too high. That some people need to start with very very minimal breathing and stretching exercises..possibly even with their limbs being supported for them??? Especially those with hypermobility?? And that this extremely low starting point is very difficult to a) pinpoint and b) believe is enough when before the therapist’s eyes the patient seems to be coping? Maybe the therapy ME/CFS people need is more like what people get for recovery from a stroke?
I’m really just rambling here. I have no scientific qualifications! Would love other’s thoughts.
May your day be full of chocolate and strong cups of tea with friends! Just like some of my favourite days! Oh and please let me know if meditation/yoga with a focus on breathing has helped you at all x