I’m beyond fatigued….
I wouldn’t want to try and guess how many people with hypermobility Ehlers-Danlos syndrome have had to…
Not everyone has the healthy mind or body required to hot desk it at work! I.E. scramble for a desk each day and potentially end up having to take ‘your share’ of the naff positions…
When loved ones ask how I am (fortunately for me this is rare – and that’s because they know enough to not ask), I might answer with “not as bad as yesterday” or “oh you know… how are you?”. Sometimes I’m blatantly honest, yet simplify it, “I’m really struggling lately” (they probably don’t know…
Is an Obsessive Compulsive Personality Disorder holding me back? I’m pretty sure the answer is yes. One key area I recognise as my biggest personality issue (which affects many but particularly two crucial areas of my life) is regular occurrences of intense frustration over others’ “inadequacies”. Their …
A few pics taken inside the Tower of London
I’ve recently addressed my failed PIP application at Mandatory Reconsideration stage and I wholeheartedly believe – in fact I know, based on the Government’s Department of Work and Pensions’ own official guide
UCHL (University College Hospitals London) has potentially become my lifeline to physical recovery (to a degree). ‘Rehabilitation’ is the keyword used by a…
I’ve been home from holiday over two weeks now and feel as stressed as before I went! But that isn’t to say I’m lost in a bad place. I’m actually just very busy and a lot of this is involving learning techniques which are designed to help someone like me in the long term.
Like clean crisp sheets (mmmm, so lushious) on your own bed (so deliciously cosy), I’m all set to embrace a fresh start which I’ll fully own, wholeheartedly appreciate, and totally indulge myself into.
Grogginess is a side-effect of what ‘normal’ people would call ‘too much sleep’ – but I need more sleep than average due to multiple chronic conditions…
I’m hoping to get my fitness levels up again one day, not that I was ever fit before! …
Due to recent health symptoms leading me towards a new diagnosis – not least because they fit together with pieces of my medical history meaning the puzzle has seemed to all piece together nicely – I’ve had reason to question my Dad over family history. Most upsetting for him has been talking about his brother and best friend, my Uncle Peter.
I’ve reached a crucial milestone – and I’m going to spend some of the energy I was using on finding my diagnosis on….
A very strange day. On the plus side I’ve received a letter from UCL hospital saying I’m on the waiting list of a specialist there despite them routinely not accepting
I’d just read this page of the book (see pic above) the day I had my latest Neurology consult (two Mondays ago) and it reminded me to explain to the neurologist that ‘I’m not neurotic’, ‘I don’t need or crave the attention’, ‘I have ambitions on hold’, ‘I want to get better’. In all my visits she’s done
I’ve often been told I think too much. But recently, on reading a paragraph of a memoir written by an award-winning journalist, I realised I don’t think too much at all – I FEEL too much.
In the prologue of Decca Aitkenhead’s recently published book ‘all at sea’, she says, “For most of my life I have…
That fateful night (previous blog post) wasn’t the most traumatic experience I’ve been through, but it has been the most medically confusing few years since – the most fatigue and pain I’ve ever faced. Also very expensive! I’m stuck working only part-time, with no way of advancing my career; I cannot afford this! I’m not lazy!…
The first I knew about the robbery was an almighty, violent yank on my bag. It was across my body and it stayed there – so it wasn’t a simple grab ‘n’ run which he would have hoped for. That’s assuming he was desperate (for whatever reason) as opposed getting kicks out of the attack. Not succeeding in one grab, this was to be the beginning of years of pain.
Been thinking a lot about my baby boy lately, having met a very brave woman recently who also lost her son at less than a year old, and also after a long illness. Her experience
If I say I have M.E. (now more commonly called CFS – Chronic Fatigue Syndrome) rather than the diagnosed-two-years-ago Fibromyalgia (FMS), I think it’ll mean more to a lot of people. Well, at least
It’s now two and a half months since coming off Lamotrigine (the first anti-seizure drug prescribed to me), and it’s paid off as it’s given me the opportunity to work out what my seizures are. To recap: I saw my neurologist
Fibromyalgia syndrome (FMS) isn’t limited to pain, fatigue and insomnia (referencing the current NHS leaflet). There’s a whole plethora of symptoms which are common amongst those given the
The week before last I stopped taking Lamotrigine – cold turkey. My head quickly went mega fizzy (so an increase) but the zappiness went away (I’ve read about “brain zaps” on anti-seizure meds – and that’s what it was – so distinct!). By day 3 the fizziness was 1 min on, 1 min off, sometimes more, sometimes less, sort of thing – along with constant intense tingling in at least my hands and fingers. The sensations were the same as experienced when taking the drug, but on the drug they would kick off almost exactly 3 hours after each dose – which I would take 3 times a day instead of the originally advised 2 times a day (agreed over the phone by my neurologist) in order to minimise these side effects (which I now assume were beginnings of withdrawal). At day 7 off of them completely, it
Yep, a GP I usually avoid at my local surgery shared that gem with me. I was in his company for a quick re-referral to an Orthopaedic surgeon after the first attempt had gone array, a year after being mugged and still with a leg injury – it had nothing to do with Fibromyalgia. This is the same GP who declared my daughter ‘worryingly underweight’, after, wait for it…..
It’s trending higher than World Poetry Day. But as it’s its own arena, fair dos.
Apart from props and time, to write you need a head clear of noise… and a house clear of clutter/chores… and an understanding family. But mostly, dedication’s what you need (link to
“For most of us, it takes years — years — of practice to achieve a kind of basic fluency.”
I feel like I’ve finally found my fluency, on writing my own m
My Nan moved into a nursing home a few weeks ago, something she thinks as temporary, no matter how many times she’s corrected. We try to avoid the subje
The wisest and kindest words ever said to me. Not that it was only a much-needed ‘excuse’, and I mean an excuse to my inner peace not to others, it was more a wakeup call. She too wasn’t as sorted as she had appeared to be, and it was normal. I think she was a troubled
On Monday evening I joined a celebration of this guy’s life, Jonathan Ollivier; a talented dancer who was suddenly and tragically taken from his friends and family, including two young sons, in a road accident. Monday’s show
don’t expect there’ll be many readers of my memoir, should I finish it, should I share it. My story is minute in this big world which is hurting in ways I cannot comprehend. I’m sure I’m a victim of my own self-
After the mini drama of Epilepsy and realising it’s just an extra thing to manage… back to the daggers smashing into my muscles: worst – thing – ever, for me, right now. But
Meds start tonight! It was an enormous relief to hear it’s ‘only’ seizures, with no brain damage or tumour seen on my MRI. Brilliant! With my list of symptoms resembling almost exactly a comprehensive list of MS symptoms
As the pains pierce, and then the twitches (fasciculations)… well… twitch, my muscles are really rather exhausted – and so am I! That’s all through my body, extremities to trunk to head – but not all at once THANK GOODNESS. My belly churns and my eyesight blurs, both adding to my mind tick-tick-ticking as I…
What I mean by the title Beginning at near the end is maybe most of my struggle is about to be over; and maybe, hopefully, I’m close to receiving a diagnosis which will explain years of cognitive issues.