I thought it was the dish that ran away with the spoons?

Well, in the nursery rhyme it is but for me it's POTS!

Click this for an explanation of POTS

And this for an explanation of SPOONS

Tuesday, 7 September 2010

Blogging still no simple task! But I'm doing really good today!

It is so bizarre I don't know WHAT is going on! Now, when I press new post, I get the box you post in appear for a second, then it disappears into a white page! In order to be able to write in it, I have refresh the page and then VERY QUICKLY move my cursor to where the stop X is on google chrome- which just so happens to be at the opposite side of the page and only appears for a few moments. It took me three attempts just now but I have my page. WHY it is doing this though, I do not know.

Today I felt better than I have felt in AGES. More like my 'old self'. The self I am forgetting in all honesty. Because I am getting so used to feeling ill, and it being my normality, that when a day like today happens, I realise how bad I'm used to feeling and how, because it's my new baseline, I don't really see it as bad anymore. It's bad compared to what normal used to be, but compared to how bad I can sometimes feel, it's okay. If that makes sense!

So yeah, today- peculiar! I had a terrible night! I had tinnitus worse than ever, I was too hot, my neck was killing me, my lower back was aching into my siatic nerve, I just could not get comfy! So I was awake for hours until I took a piriton (which I usually take every night as they help me sleep more restfully but I didn't bother last night as I felt sooo tired I didn't feel like I needed it, but then as soon as I lay down I was like wide awake!).
So, after that I was expecting to feel rubbish but by mid-afternoon (mornings are still entirely meh) I actually felt clearer in my head. I hadn't realised how foggy and fuzzy I constantly feel in my brain until I felt it today like this fuzz had been lifted away, allowing me some clarity. And then what happened was I became what I call 'chirpier'. Talking fast and animatedly instead of being a bit like a robot, only replying when I have to, only using short sentences, because talking is just too much effort. It's rotten how this disorder changes you when you think about it! I was always very 'bubbly' before it and whilst I don't think anyone would describe me as dull, I certainly feel like it has vastly dulled my personality due to the mental fuzz and constant unrelenting fatigue.

I don't know what it was that caused me to have such clarity after such a terrible night's sleep. I don't know whether an 8th of a 50mg atenolol could do such a thing. I'm not taking one tonight anyway and will see how I feel tomorrow. I am HOPING it's the liquorice root. I did notice when I first started taking it that I had a dramatic improvement in many symptoms, but sadly it didn't last and I got frustrated and went back to the Drs for more meds. That's when I got the florinef and so I stopped taking the liquorice. Now, I wouldn't expect to go from feeling crap most of the time to feeling good all the time, but if indeed it is the liquorice root that gave me this improvement, maybe I'll be able to stay off the florinef and use that instead for as long as it works. If at all possible, I prefer using herbal treatments as I just feel safer with them, due to them tending to have less side effects.

I am also taking motherwort for palpitations, it's great for those. It has the added side effect of making me sleepy in a nice, relaxed sort of hazy way, so I tend to take it at night only, but I'll add in an extra dosage in the day if I'm having any particularly bothersome tachy episodes.

If I can manage my symptoms with just these and the occasional small dose of beta blocker and experience more days like today and more times of feeling like my 'old self' I will be over the moon!


  1. It's sad that feeling ill when you've been ill for so long, feels normal. So when you're feeling good it's a shock because you forget what good feels like. I hope it's because of the change in meds and the inclusion of the supplements. I hope you are feeling like your old self when you leave for vaca!

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