Well, here I am, four months into taking LDN and I’m up at 1.30am on a Saturday morning after having taken the dogs out this morning (as in Friday) on the electric tramper free to hire for us crips at the Country Park along the Ribble Estuary, which is an important widening mudflat just inland from the mouth of the river; it fills to the brim with water at each tide that ebbs to reveal deep gullies in wide expanses of thick, greyish-brown stinky mud that the bird life (including herons and snowy egrets and other more exotic fayre – like Lapwings, for god’s sake) seems to go mad for. And which, when they return to the car, sets like concrete knickers around the dogs’ goolies every time they get the chance of a ‘plowt’, as they say where I come from. And not a flat cap or a whippet in sight (my Bertie is a Golden Retriever cross and Wisley a Patterdale Terrier on stilts). So that was at around 10.30am.
Thereafter I didn’t really stop. Felt like I was made of hollow, boiled spaghetti, mind you, but kept going all day. And I’m absolutely knackered now, but having been intoxicated all evening I am lively still but distinctly mellow. Not yellow, though. My liver’s fine.
I’ve lost a stone and a half on an eating plan of my own devising (developed over the last 25 years), and I’m aiming to walk 20 minutes a day – because 30 minutes knocks me back to sleep for a good couple of hours.
So I've been doing alright.
However; three weeks ago my final increase in the LDN went up to 4.5mg, the optimum advised on the LDN information website and links. As some of you may recall, I have experienced an exacerbation of symptoms/relapse from 24 hours or so after each dosage increase, lasting for between 3 and 5 days until the next surge wipes it away. Not last time.
It was earlier this week when I realised that I still felt ill after the final increase, as in fluey, achy or in horrible pain, somewhat nauseated, woolly and weak. I was puzzled and troubled. I had experienced the most amazing leaps in recovery when I started this LDN part of the journey, particularly in the sleep area where insomnia or poor sleep dogged – nay, blighted my nights and therefore my days. Post starting LDN I had read three books, one after the other, completed the front of my cabinet (to the most encouraging of support, I might add) and felt like I had begun to come round from a deep and terrible sleep. But for the last three weeks I’ve felt … well, crap. Not in the same league of crap as a few months ago, before taking the LDN, but crap as in I felt I’d slipped back a few weeks in the ‘I’m climbing out of this hole’ trip.
I got to thinking about what we suffer when we are so badly let down, and even damaged, by the medical profession. Iatrogenic illness, they call it. Well, medicine may not have caused our initial dis-ease, but currently it fails dismally in alleviating it and often serves to worsen the symptoms, as badly trained medics may further damage trauma victims by wrongly handling them.
So the first thing I realised is that my body is damaged. From all the years of lying around, unable to move; from all the weight gain; from all the anxiety and depression, treated by antidepressants and therapy instead of a simple tablet of desiccated thyroid gland; the brain fog, and the fatigue, the crippling languor that, rather than being simply tired feels like one’s life force is slowly draining away through the souls of the feet, leaving one vaporising inside into a ghost of oneself. There have been days, days when I have felt, quietly and with a gentle regret, that I was dying and leaving a life only ever half-lived, a husband bereft and alone.
So it was with huge excitement that I experienced a surge of betterness for the first three months or so of the LDN. But it’s slowed. I now realise that someone who has been so ill for the last 10 years has racked up some damage to her body. Similar to someone in a terrible car crash. They go to hospital, are sent to the Intensive Care ward. They look desperately ill, until the day when they are well enough to go onto the ordinary ward – they look so much better. And then comes the wonderful day when they are well enough to go home. How fantastic they look as they walk out of hospital and get into the car to go home.
And that’s when they, and their family, realise how damaged they have been, when the cumulative impairment becomes apparent. It’s then when they get some concept of the real road to recovery. And that’s where I am now, where LDN has brought me to. Home.
Now the fight back has to begin afresh; the fight to get better as opposed to not dying.
I get tired, sure, fall asleep on the settee for a couple of hours, yes, but I rarely feel that terrible draining of life force nowadays. Actually, not quite so true, come to think of it. I’ve nearly felt it for the first time since taking the upper dose of LDN over the last three weeks. Which brings me on to my next point.
I came to the conclusion that beneath the fat and the myxoedema and the porridgy flesh here and there, the places that have sagged in a way that might give a wee sporran a run for its money and the parts where the skin looks like it could do with a bit of an iron, I’m actually quite a wee thing. I’m now down to 5’ 3” – I’ve lost a half an inch along the way (and I am definitely going to have a mini facelift when I’ve lost the next 4 stone, *&%”+ those that would say that this face has been earned. This face has been imposed. The earnings I’ll keep). Therefore my true body mass, since fat is comparatively inert, needs less LDN than my husband's - who is slim, b****y-well.
But I digress. I’m quite little under all this effing fat. So I dropped the dose of the LDN, despite the nagging doubt instigated by the instruction that “4.5 mg is the optimum, 4.5 mg is the optimum” as quoted by those who quote Dr Bihari. God rest his soul (why it is that all the best and most innovative and dedicated doctors just die on us?). I’ve gone down to 4.0 mg for the last four days – and I think I feel less crap; after all, I’ve been busy all day, and thoroughly enjoyed my evening of intoxication, custard tarts and Aero (not together), and the Masterchef final followed by a dessert of Blithe Spirit. And the farting, which I'm only experiencing as a result of going quite dietarily mad this evening, is a much undervalued activity: one forgets quite how satisfying it can be.
Maybe, I decided, I’d been trying to run before I could totter. So I’m going to wait a couple of weeks to see if I should hold at this dose of LDN at 4.0 mg or drop again. But, I suspect … I think ... I’m over a bit of a plateau in improvement and back on the upward slope, only at a more gently incline this time. Still – what a trip! In every sense!
So, what's the time now? AAArgh!
Off to bed, said Zebbedee. Lah lah lah laaah laaah, lah lah lah lah laaah laaah ...
) [and no pun intended] they wait for the space between when I'm putting the hose back and just before I get the towels, and manage to open the patio door, go into the kitchen (or preferably the lounge, particularly on the settee) and shake themselves vigorously. Try getting little spatters of river mud, that a hose has simply loosened, off a ceiling!
) My husband can only manage 2 types - the SBD and the 'sound the Trumpets'! It's odd, though, how annoying I find his! 
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