Honestly I’ve been reading and learning so much this last week I don’t even know what subject to blog on! So I’ll try to post a few times over the next week to catch up!
Our week has been rollercoasterish again. School for 2 periods Monday morning (There’s 5 per day), 4 periods Tuesday, no school Wednesday or Thursday (despite her desperation to get there she had to acknowledge she couldn’t do it and /or would pay later) and hopefully a full day of school today (she’s nearly made it!)
So the winter slump continues and continues to puzzle me. I like answers and am not good at giving up looking for them.
I also love the power of communication. A friend of mine started a rumour about the Prince after concert at the conference he was at recently. He did it just to see how long it would take for the rumour to get back to him. 🙂 It didn’t take long. This wonderful world of the internet has opened up communication enormously as we all know and, for chronic illness sufferers and their carers, is such a sanity saver that we wonder how previous generations coped. And don’t tell me face-to-face support groups because then and now that is often just too hard for many reasons. And now, I can talk in cyberspace with a mother whose child is participating in a groundbreaking study in the U.S. and start looking into it as a way to possibly help my child before the study is even finished or published. It is this kind of unification and speedy dispersal of information (along with some fabulous and dedicated scientists) that is going to solve the ME/CFS puzzle.
Anyhow, I digress and must address that subject at length some other time!
Seratonin. Yes. For a while now I have been feeling that my precious girl was lacking a resilience that was caused by more than a lack of energy. No doubt she doesn’t have enough energy for tricky social interactions (and what social interaction doesn’t require careful steering when you are speaking of 12 and 13 year old girls??!!) but there’s more to it. I know I am her biased mother but our girl really is a lovely human being, extremely empathetic and kind…to others. Some of that kindness is lacking in the way she assesses herself. Yes, she’s practically a teenager so she sees many flaws in herself but….. Anyhow,turns out her seratonin levels are so low they barely register. Who knew? Apparently this is not uncommon in ME/CFS sufferers. Do you think maybe this something that a doctor could have mentioned… I found out via Mr Google. Is it because doctors are scared that if they mention it we parents will think they are saying our child’s illness is psychological when we know it’s not? Maybe? Is it because they simply don’t know this ? I don’t know. Is it because the problem of dispensing the only tool they have…anti depressants..outweighs the benefits? What about some Vitamin D testing?? That can severely affect mood, right?
We are trying to boost our daughter’s levels with supplements now. Until now we have limited pill taking to the Florinef, salt and melatonin. And the odd dose of fish oil. This is partly because, prior to the Florinef addressing many of the OI problems, our girl couldn’t swallow much without gagging, however gamely she struggled. My heart bleeds just thinking of her gameness through all this now 18 months of illness.
I realise as I type this that there is a danger that someone reading this might think this discovery of mine means my beautiful girl’s illness is ‘all in her head”. Believe me, if that were the case I would be running with it and using every drug I could lay my hands on. This seratonin issue is again all linked in with the dysfunction of the autonomic nervous system and we are slowly slowly addressing as many parts as we can in an attempt to break into the cycle of illness that is circulating through her body.
I will post more about the supplements and other things soon. Meanwhile I’m interested in your experience boosting seratonin and Vitamin D if you have any? Oh and of course any other lovely comments you may have : )