Three months ago I was summoned for an assessment to change to PIP. The assessment was performed by a woman who was rather like a large Rottweiler that one sensed had a hair trigger of a temper but was a bit unreadable; she seemed quite nice, actually, but underneath one sensed a potential for viciousness and although she didn't evidence it overtly, occasionally she would fire a warning shot across the bows in the form of a retort that she wasn't quite fast enough to stop. It felt a bit like one of those silent lifts of the lip a dog gives that makes one's heart skip a beat far faster than an audible growl!
She was very 'thorough' in that she asked me the same questions in ten different ways and at one point I felt so ill from it all I had to lie down. But she was very familiar with CFS and was open enough to volunteer information about it that my better half and I weren’t aware of. She was in part at least quite kindly but very much on the alert for scammers; she was actively looking for, and trying to elicit, being tricked. I guess that’s her job and she must have to deal with some real bar-stewards, so she’ll have developed a shell of granite and a no-nonsense approach that has all the finesse of a steam roller. But this meant that she didn’t ‘buy’ some of what I was trying to tell her, and dismissed some of the truths; for example, she didn’t believe that I absolutely can’t plan and execute journeys to unknown destinations, or that I find it difficult to marshal my thoughts in unfamiliar setting which causes a cognitive grinding to a halt, which in effect made me out to be a liar when I am most certainly not.
However, she recognised that I wasn’t able to even walk on my worst days and that most times I don’t go out even for a stroll, so she ‘awarded’ me the higher rate for mobility but the lower rate for care, even though I can't make myself even a sandwich most of the time, let alone a "simple meal". I can cope with the resultant ‘award’ but, oddly, I am left feeling uncomfortable that she didn’t fully believe me, for example about the planning of journeys or the cognitive crashing! Either I am super sensitive about being disbelieved or I am troubled that this might influence the outcome for a reassessment for ESA, which I think was due a few weeks ago but about which I have heard nothing.
But here’s the weirdest thing – since that assessment I have felt like I have relapsed even further; I think the stress of it all has affected me so much that overall I am worse now than before it, and haven’t been able to fully pick myself up even nearly two months later. I am more worried about myself, noticing that I seem to be deteriorating in some ways. For example, the pain in my every-bloody-where has got worse, my brain fog and forgetfulness is really worrying me and my heart rate has increased. Which is why I am here at this ungodly hour (been messaging and composing this since 3.30 a.m.!); pre-dawn and the darkest hours, etc.
I'm finding that my resting pulse rate is up from about 60 bpm pre-NDT/Levo only, to around 80, give or take a few. But at around 3 in the morning when I find myself waking up suddenly for no apparent reason it seems to get much higher. I've been down the Levo only, Levo + T3, T3 only (anaemic attempt at circadian) routes and could not find a consistent 'getting better' place, so I'm sticking to the Naturethroid, dropping from 2 grains back down to 1 and a half a day because the bounding, rapid heart rate is really frightening, especially coupled with the fear of atrial fibrillation; the "is it? isn't it? is it? isn't it?" seesaw is killing me!
My plan is to gently knuckle down and slowly read my way through the books I have amassed on this damned thyroid stuff, but have never read, and create a cohesive plan. The only problem is that the thyroid crap prevents me from concentrating for longer than it takes scramble an egg, which is why I have never read the s**ding books in the first place, hoping that the wisdom and knowledge contained therein will pass, by some magical form of nocturnal etheric osmosis, from the shelf into my brain. The whole brain/memory thing has worsened since the bl***y PIP assault. But, if I'm not experiencing the early signs of dementia, how come someone who can write all this keeps chucking food scraps into the bread bin rather than the peelie bin, or keeps leaving the gas on on the cooker, or can't recall what the hell she went upstairs for and wasted a make-a-cup-of-tea's worth of energy, only to recall what it was once back down at the bottom of the stairs but is now too tired to go back up the stairs to get it - twice? What the *$"~#?