Navigating adolescent CFS

Winterland crash and gentle gentle PT June 5, 2012

Filed under: CFS Treatments — parentingcfs @ 6:32 am
Tags: , , , ,

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


6 Responses to “Winterland crash and gentle gentle PT”

  1. Ainslie (Robbie) Says:

    Hi Annie, Obviously I have no qualifications either in this area but just wanted to encourage you in all your efforts to help your percious girl. I noticed in a recent magazine that a lady called Rachel (not sure of surname) is walking from I think Sydney to Melbourne to raise awareness and research funds for CFS. Apparently she had CFS and was in bed for 10 years and now looks amazing and is doing this incredible walk. Have you heard of her? Hope you have some success with the Physio. Gently gently sounds like a good place to start! Love you all xx

    • parentingcfs Says:

      Thanks Ainslie. Yes I do know of Rachel and that article thanks. She is amazing and it sounds like she’s had a lovely walk. It’s always great to hear the positive stories and the other parents and I share any we hear for pure enjoyment. I look forward to seeing what our girl chooses to do with her life when she is fully well again. Thanks so much for your comment, encouragement and support. It helps so much to know of all the people who care about our girl. Love to you all too. xo

  2. I’m sorry Annie, this isn’t going to be what you want to hear but I followed a similar path with exercise, down sizing it to stretching (pilates style) and then to supported stretching. I wanted to believe that exercise therapy in it’s mildest form would help but it didn’t. You know where I ended up. 😦

    Obviously I don’t know if Harriet and I have the same illness. I could be comparing oranges to strawberries. Netherless, I guess I’m nudging you (gently) to seriously consider that ALL the exercise stuff that doctors and most people in health care preach is not correct for me/cfs sufferers. We need treating before rehabilitating.

    It’s not all bad new though, lately I have started on oxygen therapy and that seems to be turning things around a bit. I’m able to sit up in bed, still bed bound but tolerating more ‘activity’. I think it’s simply a matter of getting O2 to the cells that need it for ATP mitochondrial production, during or after activity/exercise so that I don’t switch over into anaerobic exercise. (this is my super simplistic, non medical take on it at the moment).

    Also it helps bring my face colour back to pink when it goes greyish pre crash.

    Basically I was told to exercise when parts of me were oxygen deprived. (My blood oxygen is normal, it seems to be more about tissue/brain o2).

    I suspect everyone with me/cfs would benefit from o2 even if it was just occasionally after activity or at the beginning of a PENE inspired crash. Getting doctors to understand this presents it’s own challenges.

    I will eventually blog about this but reading your post made me want to share it sooner.

    🙂 thinking of you two.



    • parentingcfs Says:

      Hi Sarah. Lovely to hear from you as always. I hear you believe me and perhaps I should have stressed more that our motto with the physio really is “First do no harm” and we will not pursue anything that brings a bad reaction….I’m totally terrified about making her any worse I promise you! Our friend is really just focusing on breathing right now and if that’s all H can do, so be it.

      Really interesting to hear about the oxygen…I’ve heard it mentioned a bit lately…and the impact on face colour. I guess that’s partly why we are trying to see if we can improve H’s breathing to get more oxygen in…. I understand what you say about exercsing when oxygen deprived too…t all makes sense. Getting through a school day on a normal campus is a massive amount of exercise for H.

      Hope oxygen and IVs keep you improving Sarah.
      Annie xo

  3. Keena Says:

    Hey there. So sorry that your daughter is in crash mode right now.. I know the feeling. I went on a 7 day trp with my mom and now I cant seem to get out of bed. Please let us know how the gentle exercise is doing. I hesitate to exercise b/c I am scarred that it will send me over the edge but yet I have voices(mostly my mom) stating that I need some activity in my life. I do bowl 2x a week and some days that kills me, but to add anything else just scares me. I pray that H is doing better and can attend school. It just kills me that she has to deal with this disease at such a young age. take care and God Bless

    • parentingcfs Says:

      Thanks Keena. Hope you are out of bed soon. So glad you managed the trip with your mom though. Bowling twice a week sounds like plenty to me. Really my daughter is just experimenting with breathing right now. Please listen to your body….moms don’t always know what they are talking about…I certainly don’t!!!My daughter managed a full day Friday but now has a ful blown cold so we’ll see what the week brings. School being v supportive which is a great help. Best wishes

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s