Hey Michelle,
Apologies for not responding sooner. I’ve been very symptomatic and the computer screen time doesn’t help sometimes.
I’m sorry to say it like this but there is no magical fix or treatment or cure. I say this because we all individuals and so are our individual triggers. What could have minimal impact on me could be a key trigger for another. For me, I know that the hypothalamus has been damaged, the management of which is difficult to pinpoint. Again, for me, I have a range of ‘tools’ such as medications of varying dosages and type, sleep, relaxation techniques, hydrotherapy, alternative therapies etc I can use to try and manage around it all, sometimes these tools are effective, sometimes they are not. Some medicos like to use the simplest theory or what I call the ‘A+B=C theory’ or Symptom (A) + Symptom (B) = Diagnosis (C). But for me that’s way too simple, for me it’s more like A+B-C/DxE√F….. And everyone of them is variable, so trying to equate all of that can be a huge challenge. I find that if I can look back and say “Well, yesterday I did x,y,z and burnt myself out in the process and I’m paying for it today…” I can be somewhat more accepting. I suppose I sort of bargain with myself, but I tend to get REALLY frustrated with myself when I can’t see a cause/reason. Or when my ‘tools’ are not effective. My home has refrigerated airconditioning and when it gets really hot, I hibernate inside. Before I got the ducted airconditioning, to try and keep myself cool I’d go to the local shopping centre. The problem I had there was all of the fluorescent lights the shopping centres use would often overwhelm me.
I ‘try’ to regulate everything I possibly can from my diet, my medications, my sleep, my activity, my light and noise exposure (both external ie the sun to artificial light ie TV/computer screens). It all has an impact for me. I have often compared this management like trying to juggle bowling balls. I just know I’m going to get smacked in the head by one of them.
There is also a management tool known as the ‘Spoon Theory’. In very basic terms, spoons are equivalent to energy and lets say I have 10spoons for the day. The process of getting up, having a shower, preparing breakfast uses 4 spoons, that leaves me 6 spoons for the rest of the day. If I don’t budget my spoons out carefully, by 12noon I can easily exhaust all of today’s spoons. Now, I could use some of tomorrow’s spoons, but in doing so I have less spoons for tomorrow. I could keep using the next day’s spoons, but come Friday I’m so exhausted, with no spoons left, I’m lucky to be able to even crawl out of bed. It really can be a balancing act sometimes.
Personally, I was brought up in the church and me and that bloke God aren’t on talking terms. I’d be cursing him rather than anything like praise.
Michelle, just know you are not alone on this journey and anybody who tells you it’s easy or simple has NEVER been in this position themselves. We know this because we live it too.
Merl