Navigating adolescent CFS

And so we go on….. February 2, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 1:06 pm
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So sorry for the long absence. As those of you on Facebook would know, somebody who takes joy in such things hacked into my good friend Nicole’s hugely successful blog Planning With Kids. As Nicole hosts my little blog it was also affected. However all fixed now and it is safe to return!

So, 22 days since my last post. What has been happening? Well may you ask! It’s one of those confusing times and the rollercoaster ride continues. The Florinef is evidently still improving our girl’s life significantly. However, it’s a little harder to tell at the moment as we’ve been adding exercise back into the mix as per our prescribing doctor’s advice. He tells us the Florinef helps her feel well enough to exercise and this latter is ultimately the answer. As you may remember from previous discussions on the topic, this is not all doctor’s advice and there is certainly extensive anecedotal evidence out there that exercising with CFS has caused long-term worsening of the person’s condition. So we continue to navigate the minefield in a way that seems to work for us.

Firstly, a happy coincidence. The local indoor pool, barely 500m from our house, has finally reopened. As you know, our girl was a great swimmer before she became ill. She has missed swimming immensely but rarely felt well enough for the effort required around the trip to the pool as well as the actual water immersion. However on 26th January, our Australia Day celebration was a family trip to the local pool. Our girl was so delighted to be there, and hopeful of no post exertional symptoms, she swam 275m. (We stopped her then) Andrew and I watched her with a mixture of pure delight and, in my case at least, anxiety! She swam with joy, like a seal, and I thought my heart would burst. This illness sure helps you find joy in the small things.

During the swim I kept an eye on her heart rate (taking it manually) and immediately afterwards we had her lie flat on a bench, as per doctor’s advice, to help her body continue to move the blood without her physically pumping her legs as she had just been doing…. and so, I assume, return her blood pressure to resting level less suddenly and thus reduce post exertional symptoms.

She pulled up fine, and on a high, that afternoon and evening. The next morning she woke tired, rated herself a 4 (first time since starting the Florinef) and chose to bathe rather than shower as didn’t fancy standing upright for that long.

By the afternoon she had rallied and was keen to get back in the pool. I suggested she muck around with a friend rather than swim laps. She did so and in the process probably did about 4 laps((100m). I got her out of the pool after an hour. The next morning she pulled up tired again and with a slightly sore throat. We repeated the hour in the pool with a friend. The following day she had a very sore throat and intermittent bad stomachaches and increased fatigue. I suggested she not go to the pool that day. Impossible to tell whether the symptoms were related to CFS’ reaction to the exercise or viral. She still had the same symptoms the following day so we didn’t go to the pool again.

The next day was Tuesday. She felt slightly better and met a friend at the pool and spent an hour with her as before. The timing was not great as the friend had a squad session starting immediately afterward and our girl was hit by a huge wave of despair that she couldn’t participate in her beloved activity. Fortunately we had one of her best friends booked in to stay the night. The following day she was tired from chatting until late and still had a sore throat. Stomach seemed to be less of bother.

Which brings us to yesterday. We went to the pool, just her and I and her younger brother. (He is loving all the trips to the pool and, somewhat surprisingly, is also doing laps, as he is doing the Kids’ ‘TRY’athlon for the second time in March. Unlike his sister he hated swim squad so it’s great to see him enthusiastic about swimming.) Our girl was a little down still about how CFS has impacted her life but was glad to be in the water again. She wanted to race us all but was afraid of the consequences. So we worked on a system of 1 or 2 laps, then a break, to stop her heart rate getting too high. We also hit on the happy idea of her coaching her brother and I on our swim technique and we had a lot of fun with that.

Last night she was very nauseous at bedtime but today the stomach hasn’t been mentioned. She still has a sore throat. We are off to the pool again shortly.

The immediate dilemma here is that now we’ve added exercise into the mix she has less energy again and school starts in 4 days. Should we stop exercising to give her the best chance of managing a full school load (minus Physical Education) or focus on the long term full recovery we hope for from the careful exercise therapy? At this stage I am inclined to keep her out of the pool Saturday and Sunday.

Such a long post but I know there are many out there who are interested in the details…and it really helps me clarify my thoughts by writing it all down!

All in all it’s with sadness that I watch our wonderful summer come to a close. I’m so grateful for our beautiful girl’s improvement and the lovely warm weather we’ve experienced here in Victoria. Now onto the next exciting stage – the reality of high school. We must be hopeful.

(A postscript – if you are reading this for information about your own illness I strongly recommend you read Sue Jackson’s comment below, she confirms some of the things I was feeling as I wrote this post and reminds me that any exertion counts as exercise for CFS sufferers. Thanks Sue. Also a reminder that I am just recording our experience not making any recommendations about what others should do.)

Best wishes to all and let me know your thoughts below x


7 Responses to “And so we go on…..”

  1. Sue Jackson Says:

    It’s so wonderful that she has been able to enjoy the pool…and a sleepover, too!! Wow, that is amazing for a kid with CFS.

    As for how to manage her activity level with school re-starting, I think you need to be VERY careful. What these doctors who prescribe exercise don’t understand is that for someone with CFS, EVERY bit of exertion counts as exercise for us – and that includes all daily activities. So, showering counts as exertion and going to the store counts and playing with friends counts and school is a major source of exertion. It all counts and it all adds up.

    For instance, since I started treating my CFS/OI with beta blockers, I have been trying to exercise a bit – short, slow walks, 10 minutes of yoga, and very brief bouts of weightlifting/muscle strengthening (all while monitoring my heart rate!). So, now I can take a 30-minute walk or go to the grocery store without crashing the next day. However, I can NOT both take a walk and go to the store in the same day or I will crash. You have to count ALL activity when trying to fit in a little exercise. So, you have to think of “exercise” in a much broader sense. Walking around at school will likely be all the “exercise” or exertion she can handle in a single day.

    Personally, I disagree with your doctor and think you should not worry about formal exercising and just focus on helping her get to a point where she can live her life again without crashing from normal daily exertion. In that way, she will gradually and naturally improve her stamina over time. Continually pushing beyond her limits can result in a severe relapse.

    Having lived with CFS for 10 years myself (plus 8 years for both of my kids), I can tell you there is one hard and fast rule that everyone with CFS must live by: listen to your body. ANY CFS symptoms (sore throat, flu-like aches, fatigue, etc.) in the days after an activity means you did too much and you need to rest. We have learned to never, ever continue to be active when crash symptoms are present – you are only sentencing yourself to get worse that way. That sore throat is a sign that she needs to rest and get off her feet. There is no doctor in the world who can tell you how much activity you “should” be doing. You just have to pay attention to what your own body is telling you and adjust your activity level accordingly.

    So, based on our years of experience with kids and school, I totally agree that she (and you) should carefully limit her activity level in the days before school starts. Once she starts back to school and gets an idea of how much activity she can handle, then she can expand her exertion level a bit. It all comes down to listening to her body – feeling fine means you can be a bit active (within limits); any CFS symptoms at all mean you need to rest and give your body a chance to recover.

    Hope this helps a bit…we are thrilled that she is doing better and are rooting for her!!


    Live with CFS

    • Annie Says:

      Sue, as always you say exactly what I need to hear and help me crystallise my thoughts and plans! Harriet is very pale and tired today and I had to talk her out of going to the pool, she just loves being in the water so much. She agrees with taking the weekend off too so fingers crossed and I’ll let you know how it goes from here……
      Hope you enjoyed your Chinese and have nipped that potential crash in the bud. Thanks again for all your wisdom and I wish you an empty house…you know what I mean!

      • Sue Jackson Says:

        Oh, good 🙂 I was feeling so crummy when I left that comment, I was worried that I had been too pushy or offensive somehow. Glad it was what you needed to hear. And, obviously, it worked out well – so glad she is in school this week!!

      • Annie Says:

        Your comment was perfect and I think v timely as I had been planning to rest her only the weekend but she needed that extra day. Thanks!

  2. Sue Jackson Says:

    In fact, I think I will take my own advice. I have been really achy and have a sore throat this afternoon, so I think I will ditch my plans to cook dinner and order in Chinese take-out instead! Even after 10 years, I have to keep learning this lesson over and over…


  3. Marita Says:

    I’m glad you were able to get back to the pool again and your daughter could do some swimming.

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