Navigating adolescent CFS

Desperately smiling and waving!!! August 6, 2012

Filed under: CFS Symptoms — parentingcfs @ 10:58 pm
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Hope is a wonderful thing. I wouldn’t be without it. However it does mean there is further to fall when things don’t go the way you had..well… hoped.

We increased our girl’s Florinef by half a tablet whilst waiting on the Midodrine prescription. Almost immediately she seemed to perk up and started showering and appearing out of bed without any encouragement. It’s only been 4 days but it was looking good. The real test as always is school and I admit I was really hopeful. But right now she is lying in bed barely able to move because she is so nauseous. She won’t be getting to school this morning. That’s the 14th day out of the last 16 school days that she’s completely missed..and there was a similar pattern in the last few weeks before the holidays.

I can’t help feeling it would have hurt less if I hadn’t been so hopeful.

I know it’s important to stay positive and I will snap back into it shortly but right now I just needed to let you know how it feels. I know it’s impossible to understand unless you too are on this roller coaster and I know things could be much worse but this is hard, really hard.

Smiling and waving, smiling and waving………


7 Responses to “Desperately smiling and waving!!!”

  1. Deborah King Says:

    Oh Annie, I am so sorry to read this. I have been there before myself and it is hard to believe it when it happens. It is only natural to feel desperately disappointed and defeated when recovery slips back. Let’s hope she will overcome this setback with the midodrine. When will that start? In the meantime, I am sending virtual hugs of support from the UK. Keep going. You and your lovely H are getting there even though the direction of travel is not a straight one with this illness. Keep your pecker up lovely lady.xxxx

    • parentingcfs Says:

      Thanks Deb. Don’t know when midodrine will start, will follow that up tomorrow. H is just catching up on Behind The Scenes at Downton Abbey…at least she’s out of bed! Is N still doing better on Florinef than she was before? Hugs back to you xxxx

  2. Charmagne Flanigan Says:

    Annie, Hang in there! While it is so hard to keep optimistic when the roller coaster of CFS has our girls in a low spot, it is the best medicine for all. My girls have had tough times like this too so I can relate to your dashed hopes, but keep smiling and waving! I will send you good thoughts from across the pond! Charmagne NY, USA

    • parentingcfs Says:

      Thanks so much for the good thoughts and for taking time to write them down! Yes I’ve returned to placid, smiley mum prototype..although probably still more onwards, onwards than smiling and waving just yet…. Encouragement and support from others makes such a difference, doesn’t it? Best of luck with your girls.

  3. Michelle Says:

    Annie, I really feel for you. I get so angry that although I know its a roller coaster I still allow myself to be let down, when I should be prepared. The good thing about roller coasters are when the lows have gone you get to ride the highs. Hoping she starts to feel brighter soon, big hugs xx

    • parentingcfs Says:

      Thanks Michelle. We must be gentle on ourselves I think as, as you say, it’s so easy to be angry with ourselves for doing something that is entirely understandable. And you are so right..the highs are something to look forward to. : ) Thanks for commenting.

  4. Sue Jackson Says:

    Don’t give up that hope yet, Annie!!

    As I’ve said before (hopefully not too many times!), we always experience some really bad, long-lasting crashes after school starts, just due to exposure to so many viruses (schools are major germ factories!). It is entirely possible that H has been down due to viral exposure and in that case, there is really nothing to do but wait it out until her immune system calms down a bit ans stops over-reacting. Sometimes in this situation we have found that antivirals like olive leaf can help or immune modulators like Imunovir (in fact I think Imunovir has helped to reduce these types of virally-triggered crashes quite a bit). But mostly, it is a waiting game…and believe me, I know how hard that is!

    I think the fact that she perked up, even temporarily, is a great sign and a reason for optimism!! Studies have shown that those with CFS whose symptoms vary, who have good days and bad days (or good periods and bad periods) have a higher rate of recovery than those who are the same every day.

    Hang in there – you are not alone!! So sorry I have been out of touch and not keeping up, but I have been thinking of you šŸ™‚


    Live with CFS

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