Tag Archives: fibro fog

A Futile Fibro Flare-Up Day…

Temp| 8°C

Still can’t think beyond the pain. My brain is zoned out.

I’m in no shape of, or for, anything.

Done naught but a few words in Daylio and Jouney Journal, then blindly and mindlessly poking around the internet a little.

Somehow, it’s now 5:30pm. I have no idea how that could have happened. I wanted extra meds to help play Skyrim. Guess that didn’t work out.

It’s horrible outside. Cold, rainy, high Humidity. The isobars are decent-ish at 1016mb. I’m so cold… But I can’t move, and in too much pain to do anything about it… 😣🤕🤨🥺


There are a few emails on my system now that I haven’t read. Refused to read. There’s 2 about the Boots thing, 1 about the Ubisoft problem with Assassin’s CreedUnity (the downloads run at 3mb/s & then the game won’t load anyway), and 1 from Sophie the OT regarding people coming here to install my shower.

I’m too scared to read them. Or, more specifically, I’m way, way, way far too way into OTT & TMI to cope with facing them or processing them, let along answering them…😟😣😢

I don’t know where the “Me” who used to jump at all correspondence, had Zero outstanding emails in her inbox, is avoiding messages and has nearly 7,000 “unread” emails in her inbox 🤯😫😟… 💔

… I could really do with her right now… 



I’m in 9.95 Pain… I can’t think past it, or of anything else, and my mind is blanking to try and deal with it…

  • I’ve been rushing around checking into, and booking, Premier Inns…
  • Mentally preparing for the crapload of Appointments we have to deal with and somehow manage through in May, including 2 big hospital appointments far enough away to require overnight accommodation…
  • I’ve had to deal with the last minute Car Tax thing and go out to do it, causing this latest flare up of agony (because I don’t have a shower)…
  • My glasses got snapped in half, and I had to circumvent my immense panic and Dragon of Disappointment long enough to get new ones.
  • I’ve had a good couple of mini-ish Meltdowns caused by other people…
  • My Catheter came out after only 6 days, and at 10:22pm, of all times… Late at night is *never* good; at least the nurses are great 👍🏻 🙂🤕
  • I’m even more exhausted because my mattress was being mean to me, and causing several nights of extreme pain and nightmares.
  • I flipped the big Hypnos mattress with Dad, and had to empty and redo the bed with Sara.

 


There’s been too much stuff, way, way, way too fast. Too much pain. Too much chaos. Too much… everything-too-much-on-top-of-everything-else.


 

NB: I think the new Food Plan is going to have to go in the bin, for today. There’s no way I am eating between 6pm and 7pm when I am like this. I’ll need at least 6:30pm meds to have kicked in, as well as an extra mini-dose of Oramorph, to manage to eat anything.

Before 8pm, food has no  chance of happening. 😖🤕😣😔

 

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Anxiety & Chaos — The Antithesis of the Aspie Mind…

Anxiety and Chaos rules my mind. It feels like it’s been long buried under mountains of agonising pain, sorrow, grief. Fibro-Fog, medication, and more and more Chaos and Anxiety. I can feel my mind still there, calling, struggling to be freed, to be heard… yet, there seems to be so little I can do about digging it back out.

As long and all this overwhelming Anxiety and Chaos rules me, rules my life, is forced upon me – truly, it seems that no matter what I do to prepare against it, it floods and breaks through my defences and laying siege until I can do nothing more against it. – it will Rule me. It overwhelms me. Then, it eventually takes over me. My life. And now, it just simply continues to do so… because I have only so many spoons at all, and that number is barely above Zero, and none of those spoons are even remotely strong enough to fight against the sheer mountain of things that continue to suffocate me every minute of Every. Single. Day.

With no Short Term Memory to speak of, and pretty much no Long Term Memory to fall back on (although, thankfully, the odd one can be brought out with certain triggers, unfortunately few and far between), it’s like I am nothing and no one.

As an Aspie, who once remembered everything and anything just about, this fact is near killing me inside. I still don’t know what to do with it – the grief and frustration of going through this, being forced to live without something embedded into me, that was an intricate part of me… Quite often, it is all too overwhelming. Even the inability to control my environment was entirely reliant on this… and without it, Anxiety and Chaos reign entirely. It is painful and frightening, and there seems to be nothing I can do about it – and I feel this because I have gone through everything I can think of over these past Five Years this has been happening to me…

I physically cannot move – my condition leaves me with only the shoulders and arms and what is above it; pretty much nothing else is movable by my own conscious will. I must remain on the floor whilst upstairs because my chair (or any chair) cannot fit up here; the house is too old and the landing is far too narrow to accommodate one. This means that I remain next to useless up here – unable to move or control my own environment in my bedroom. Despite assistance, there is no way to keep it sane without someone perfectly able-bodied to take things out and put them away as required. Whilst I may be able to retrieve something, putting it back may cost too much spoons, or be too difficult – or worse, I might forget.

I have been numbed by the sheer and exhaustive amount of confusing and destructive emotions that keep washing over and drowning me. I do not like emotions – actually, I loathe them, and wish they did not exist. And, quite frankly, there are definitely far to many of them. It’s a cornucopia of horror that I flail at, until I fall victim to my terror and end up falling and drowning beneath them all. “NT” people have called this dead numbness “depression” – but I’ve studied psychology for years, and what I have has never quite been fully described by that theory, and it does not fully cover what it is that I experience.

I am TMI (Too Much [Sensory] Information) when it comes to all these emotions – and all are fuelled by my two arch enemies: Anxiety and Chaos. I literally cannot live like this – I barely even exist like this. To live, to participate in… well, something, anything… to do what I love again… That would be Everything.

So, by that measure, it seems that right now I would have nothing…?


What Am I…?


It feels like it has been a long time since I knew what it meant to be “me”.

What am I now? Not much, it seems.

Curiosity is lost. I have no desire to read or learn – because I just can no retain any information anymore. I feel exhausted just picking up my Kindle, magazines, or iPad for anything other than fooling around with it. I shouldn’t – and quite frankly, I’m not even sure why.

I am immobile and housebound. Under a required house-arrest because the off-the-rack wheelchair makes me so ill it’s insanity itself to even attempt to sit in it anymore.

My strange neuropathic paraesthesia / (numbed?) Fibromyalgia /  Hemiplegic Migraine thing going on, that no one can actually explain, keeps me prisoner in its claws – I can’t walk, sometimes barely crawl, my fingers don’t work very often, and I can feel so terrible (paraesthesia, spasms, feeling like I’ve been filled with cement, brain-fogged, unable to eat or move) that I simply can do nothing but stare at the TV. Not really watch it, just stare at it.

I am badly overweight and struggling to even move, let alone try to be any kind of active. I do try – a lot. But the windows of opportunities are so sporadic, they don’t really count. So I don’t get to do the things I love(d)much anymore – Pilates, Yoga, dancing. I do them as much as I can when I can, and it’s literally quite the relief to be able to do at least something, no matter what it is. Another part of my past that I can touch occasionally, and feel something that brings great comfort and familiarity. There aren’t many of those left now.

I have so little control over limbs and key muscles. There’s no diaphragm, no pelvic floor, very little use of my right leg at the best of times, and on occasion my right arm too. I can barely feel my tummy except in one space in the very centre. I can’t sing, have to use Gown-up Huggies (or lady-pants, as Tena likes to call them), and I am a slave to the weather and air pressure (check your isobars if you feel really rubbish – I just stop working once it dips below 1020mb, and I fall apart and can black out in 1015mb or less).

Dignity is gone. I quite often have to crawl, or worse, be reduced to attempting to “commando crawl” because my arms and legs dont work properly. I need help to clean myself, shower, brush my hair, change, go to the bathroom on bad days. And the Grown-Up Huggies don’t help, either.

I lost the ability to drive. I can no longer cook. I have a robot I was so excited to make sitting around in parts. I have courses I wanted to learn that have sat around gathering dust, after only managing a small handful of them before falling too ill to carry on. I can no longer go horse riding. The list of books and magazines that keep going unread hurt me deeply. I feel like I live in loss and missed opportunity, and it’s quite frankly heartbreaking.

My memory has gone, particularly STM (Short-Term Memory). The long term memory went a long time ago, and has never really returned. There are people, places, things, occurrences that I have no idea about. Today I forgot how a General Election worked when you went to vote. I’ve been voting since I was 18… I hate to count how many polling stations I’ve been to in the subsequent near two decades hence. I should have known it, but I did not. People tell me things and have conversations with me, and I have no idea ten seconds later that it even occurred, let alone what was said. I’ve given up being disturbed by that – it happens too often now… it’s another unfortunate “new norm”.

The small things can really get you. I feel really put out I can’t now go to the cinema, because I can’t use my chair – I’ve spent ages looking forward to seeing the new Wonder Woman movie for months, and now I can no longer go. I feel awful I cannot cook my own food. I can’t even make my own tea, and the hot water dispenser is actually in my room (because once upon I time I actually could).

My ability to play games is sporadic, and I don’t enjoy it half as much as I should, could or would without this rediculous situation that I find myself in. The same goes with conversing with my friends, almost entirely losing my ability to actually speak to anyone – because it’s contra-indicating my ASD something rotten. I can’t fixate on anything but fear anxiety now – so there is no room for my usual crazy obsession about Mass Effect and Dragon Age. This might break my heart more than anything else.

I keep asking myself “What can I do?”… But there doesn’t seem much on an answer. I can sit… sort of. That causes problems in and of itself. I can stare at the TV… which I hate. Sometimes I can hold a conversation. On rarer occasions it might even be intelligent. I sit here thinking… and I struggle to think of anything more. That does not make me feel very good at all…

 

 

I’m waiting – constantly waiting – for it to “get better”. It doesn’t get better. It never get better.

For some reason, so far it’s only become worse. I really wish it would stop doing that.

Right now, it’s just existing in limbo, waiting to see if a new, proper, chair might allow me to have some semblance of an existence, in being that I get some respite from my incarceration here, get some perspective in going some places where I can take myself along. There’s always hope, and I really do hope to god this time I get some respite from all this by being able to “walk” myself about, to go for a “walk”, to make it to places that I can’t go now. Certainly couldn’t go in that other chair.

I’m trying to do good in waiting for it. Trying to get stronger arms and core. It’s not going too well, because despite it being June, no one told the weather, and the isobars and temperatures are through the floor – and we’re being bombarded by gales, rain, and storms. Fun. So far, for the last two weeks, the isobars haven’t risen above maybe 1010 or 1015mb. Next Tuesday (it’s very early Friday morning right now) it threatens to get to at least 1021mb. Hopefully, this time, it’s telling the truth. The last time, it most certainly was not!

If this weather doesn’t improve neither will I. I will still do as much as I can, but it won’t be the same, because the extent it makes me feel utterly terrible to the point of passing out can render it impossible to do anything. It seems so rediculous to be enslaved by something so rediculous, but there it is.

I hope I shall get some sleep sometime tonight – it’s 4:06am and I feel too wired to be able to sleep. I don’t even know why – if I did, that at least would be a start! I guess as an Aspie, that kind of thing is probably always going to elude me, but I do try my best to work it out. I could be anxious – it’s general election night. Or it could come from the fact that mornings can be harrowing after disturbing dreams/nightmares and being awoken badly in the morning – frankly the last two days have been extremely traumatising (no, I’m not kidding nor over-playing it… more like the opposite), and I do not have it in me to even begin to deal with a third day of such things.

Of course, I might not be anxious. It might be from a lack of being able to expel energy, thus never feeling tired. It’s hard to expel energy when you can’t move. It might be from the “pain” – and by that I mean feeling the intense sensations of Paraesthesia, which may as well be pain. It hurts, I suppose, but in a very different way to before, or what I’ve ever been used to before. So I just call it “pain” because it’s a shorthand that other people can easily understand, more metaphorical than literal.

I think the problem is I honestly don’t know if it’s all of them, any of them, or none of them. I wish I did, so I could do something about it. As it stands, I have no idea how to help myself, which is really annoying.

 

 


Saved By Tea….

Yes. Literally.

But not that nasty plain black tea. Pukka tea. The ingredients in it are so potent and effective, it eased what was a nightmare of a massive spasm attack that just would not go away, no matter what I did.

I went into a mass of unrelenting horrible spasms for hours and in desperation I had one of their teas – Lemon, Ginger & Manuka Honey: Ginger root with licorice root, eldferflower, fennel seed, tumeric, verbena, and of course lemon and honey, because ginger was a key anti-spasmodic in my massage oils. I was so exhausted and in so much pain from them it was a Hail-Mary – and then Mary really came through…

Within half a cup the horrific spasms I’d been having for hours diminished. I was able to relax(ish), breathe, be [my] normal again. It was amazing… and it stayed away. I topped it up later with Serene Jasmine Green tea and was able to play more of my game than I had in a long time.

I’m still astounded and relieved that there’s so much good stuff put into that Pukka that it knocked the spasms sideways and they didn’t come back – nothing has done that before. It certainly wasn’t doing it with anything else, and I was trying everything, but they relentless, agonising, contorting, and I could barely breathe because they were constricting my ribcage and diaphragm too. Then I managed to get just half of the tea down me and there was just a complete 180 on the symptoms they finally relented – truly amazing.

img_0886Today (as in the next day) I’ve used Ginseng Matcha Green tea and then the Ginger one a bit later to see how that deals with my symptoms. The Ginseng Matcha is to substitute for my second coffee of the day and it’s given me a clearer head, helped with focus, and seemed to have allowed me to eat something, which isn’t normal for this time of day. They’re not quite to my taste, since I really dislike ginger… but if it can do that, I’ll drink anything.

I still can’t get my head around the fact a cup of tea can do that… but then again, why should it not? Way back in the day, it used to be normal – before “Western medicine”, all “old” medicine was just that – flowers, foods, whatever, boiled into easily-drunk teas, oils, “potions”, etc. Ayurvedic medicine is overlooked too much in favour of “Western Science”, which is a terrible tragedy. It should at least be a option, and still probably cheaper than what the NHS pays for all these terrible chemical pills the pharmacies make and overcharge for. It may not be for everyone, but then neither is all the Western chemical pharmacy drugs…

I can’t imagine there aren’t other people around that are like me – allergic, hyper-sensitive, or [effectively] contraindicates almost all drugs for one reason or another. I’m intolerant or allergic to almost all drugs it seems – I can hardly take anything without becoming terribly ill, far more so than I am without it. As bad as things are, they’d be so much worse if I took everything the docs wanted to give me. Instead, it would have been a lot nicer if they could have sent me to see someone who was an Ayurvedic practitioner, or at least a prescription voucher for Pukka/Holland & Barrett/Whole Foods… Then I’d probably would have felt a lot better a lot sooner.

For me, this has been an eye-opener in what I should be doing and consuming to help myself. That I should concentrate more on the massage oil and aromatherapy recipes, on getting the right things inside me, whether through eating, through tea, through supplements (etc), through to presuming I can only help myself by relying solely on Courvoisier VSOP because there’s nothing else (and if I’m going to consume something that tastes like evil, it should have more benefits than simply turning my brain off and threatening eventual jaundice…).

 

 

 


Neuropathic Esential Oil Recipe

After three years and four months of enduring terrible pain, this condition suddenly and inexplicably changed. It was slow, but it felt like happened overnight nevertheless… it was gradual and I didn’t notice the severity of this constant change until it became a complete “180”.

Suddenly, it seemed like out of the blue the intense chronic aching pain I had endured so long vanished – changing entirely instead into numbness and the worse electrical pain I’d ever felt… Intense. Sharp. Unbearable.

It was suddently like I had been covered in “magic cream” and then hooked up to the worse TENS machine ever made. I can barely feel anything much on my skin other than the vague pressure of contact (maybe like through a thick wetsuit or something… but it does remind me of how having the Magic Cream felt). My right leg went almost completely dead, dragged and didn’t respond. My right arm also became quite weak and unmovable. I had to do things with my left hand again – which isn’t easy! – and the intensity of the tingling, prickling, buzzing, burning, electric shocks, numb-like pins & needles, and the most extraordiarily awful spasms that were all absolutely unbearable. Quite frankly, I wanted that pain back. At least that was vaguely treatable.

My mother went looking for alternative options, given I needed something that would work better than “conventional” treatment. I’ve always responded better to naturopathy – so essential oils for this was probably the answer… And thankfully it was.

I have found the following essential oils had beneficial properties that helped with neuropathic pain. Certainly with mine. This has been tweaked a few times, getting better and better (for me), and the results have been extremely positive – all things considered.

With this combination, I have fewer symptoms, and they’re down to “bearable” now. My right leg moves a little and my right arm works better. The numbness that comes from keeping my hands up for any period of time is reduced – particularly withe the Patchouli and Frankincense. I can even feel a little bit more on my skin.

Now none of it is “back to normal” or perfect by any means, but it’s better than it was. And when something is so unbarble you’re passing out, anything is better than that. To be able to have even a little more function in my right arm and leg is fantastic (a little is better than none, after all) and it also means

I will also be adding Basil x10 to it today, to see if it helps with the “brain fog” that comes with neuropathic conditions. I hope that it will help me to think more clearly, to be able to put down more short-term memories, to be more alert, focused, in charge of my own thoughts and decisions, to be able to use my mind again – even if, again, it’s only a little.

 

Essential Oil for Spasms (& “Paraesthesia”)

Oils + Total Drops per 30ml/1floz:

     

  • Sandalwood x16

  • Clary Sage x10

  • Peppermint x10

  • Juniper x20

  • Frankincense x20

  • Majoram x10

  • Orange x8

  • Wintergreen x10

  • Patchouli x5

 


Lost…

A Question of Sanity

 

There’s often  the question posed when someone has to deal with chronic illness, one that appears after some time has passed, which is, Who am I

In this case, I feel that everything that I have ever identified myself with has been taken from me. The list covers everything that I’ve enjoyed – leaving me to ask that very question… because now I don’t know if I could even begin to answer that question anymore.

The worst thing is the lack of focus… if you don’t count the singing, that is. Focus has been the driving force in my life – from reading incessantly to obsessively playing games, tinkering with computers, writing music, and – yes – singing. And that’s the top 5 of quite a long list. It was never great since the fibromyalgia reared his pain-creating head – however, since moving to the Snowdonia area, it’s vanished. Permanently. And with it, everything that is what I see as being a key part of “me”.

The thing that hurts most (… if you don’t count the singing…) is the reading. I can’t read anything anymore – not books, magazines, online articles… even listening to audiobooks isn’t possible. My filled Kindle is going unused, my stuffed Audible apps go unheard, my magazines pile up ignored, and all break my heart because I have loved reading almost since before I could walk and now I can’t. Each time I attempt to do so, I have no recollection of what I’ve read. Instead of reading I skim over the words and take none in.

With focus, my curiosity has gone. This used to be my favourite thing – reading, playing, singing, travelling, driving, listening, studying… just learning was my favourite thing to do… and focus was the main tool for that. Maybe it’s because I can not longer move, so I can no longer explore. Perhaps it’s purely biological – not enough sleep basically messes with your mind rendering concentration, sense and memory almost useless. Or it’s the medication… but I do imagine it’s all of the above and then some. How to change it and get it all back…? That is the question.

I did appreciate what I had at the time, but still… I didn’t quite realise how much I was going to miss it all until it was gone. It’s disconcerting and frustrating. It makes me feel sad and lost. I want them back, and I’ve been trying lots of ideas as to how to manage that, but it’s not working. Particularly with sleep, which I seem to be getting less and less of now.

I used to be quick, intelligent, curious, focused, multi-faceted and even at my previous worst I found things easier than I do now. It’s even taken me quite literally hours to write this short blog, due to fatigue, loss of focus, pain, and lack of any ability to concentrate my thoughts into something vaguely coherent. Because of this I’m left continuously bored and upset, not to mention annoyed because there’s so many things that could be done and I cannot undertake any of them.

I would like it back – all of it. I would like to ease the hyper-vigilance, stress, hyper-anxiety, fatigue and exhaustion, insomnia… but it’s a vicious circle when all you can’t do the very things to help you relaxed because you are far to anxiety-ridden to be well enough to do them. So I can’t really relax. And so on… I see the world only through my mind, my ideas, the data that learning and reading offers – without those things, the world makes even less sense than it usually does, which in turn makes the stress even worse.

I hope that some of the ideas implemented might work – if not individually, then in tandem. I could then perhaps I could get back to me.

 

Or at least to sleep.

Lost...


Five Stages of Misery…

Five Stages of Grief In Chronic Illness…?

 

It seems logical to go through it when you have a chronic illness… Grief is loss. With long-term chronic illness, you lose a lot, if not all, of your former life. You are thrown into a new one… one you didn’t ask for. One that is difficult, painful, traumatising, miserable… one where everything you once knew is no longer there. It’s all gone. Maybe even people have gone.

One day you were living your normal life, then one day – poof – it’s all gone. Everything is turned on its head. Upside down. Your world has imploded. Nothing will ever be the same again. Maybe you’re not dead, but it’s the death of your life. Grieving is surely inevitable… no?

Perhaps you get there – to Acceptance – quicker if you know what it is? Why this is happening.

It is difficult to accept an illness that remains undiagnosed and you don’t have a name. There is nothing to accept. There’s no answer.

So, you never get to that last stage. Not until you have something to accept.

 

Kübler-Ross Model:

  1. Anger
  2. Denial
  3. Bargaining
  4. Depression
  5. Acceptance

 

I feel three out of the five, oftentimes all at once: Anger, Depression, and Denial. They’re strong things to go through. I’m also really sure that the Aspergers in my brain is clouding everything more than normal. I have no idea what someone without it experiences – we’re all different – but being emotionally-incompetant cannot help one jot.

Let GoFibromyalgia, and other chronic pain, tends to come with a lot of emotional side effects, and the neuropathic pills adds to that. “Fibro Fog” turns up in patients with Fibromyalgia, then one of the more common symptoms of Pregabalin, at least, is various kinds of memory impairments.

I imagine the “Fibro Fog” turns up because dealing with so much pain is too much for the brain and mind to cope with, so it shuts down. It’s a fuse box with a switch that gets flicked – you can’t turn off one thing on its own; the brain has an “all or nothing” psychological reaction to such things as trauma… and that much pain is trauma. So it shuts down everything in the head, and “Fibo Fog” turns up, leaving the mind incapable of functioning.

Add Aspergers to that – where, basically, the mind is all you have to manage life and the world – and you have a volcano of confusion and frustration to contend with. I deal with things through my mind; I have no proper emotion, and what I do have doesn’t make sense and scares me. Makes me act out. Turns me into a terrified six-year-old child again. With every meltdown, the world stops, my brain disintegrates, and everything falls apart into a horrific nightmare that I can’t seem to wake up from… at least on my own.

 

Moving On?

My EQ is through the floor and somewhere past the centre of the earth. I don’t know how to cope with it – those three things. I don’t know if that is what I really feel either. I know I’m scared. Terrified. I now grieve for the things that have gone – I deeply miss everything that I’ve lost. ASD doesn’t allow much room for being able to deal with changes in any way. Taking everything away from someone like that is never going to end well… Usually in meltdowns. Which is what happened. Is happening. What keeps happening.

Tests In LifeIt’s been a year and a half, and I still can’t adjust to it. I have no answers. No help. I’ve received no therapy. The only medical intervention has been an MRI scan focused only on one small section of my spine. No other diagnostics has been carried out, unless you count some blood tests about a year and a half ago to try and rule out rheumatism.

It’s no wonder I’m stuck circling three of the Five Stages.

Answers are important. Knowing what’s wrong is important. It might not stop anyone going through the stages, but it probably helps you go through them faster. Acceptance is important to reach. I want to get there… but I have no idea how, especially since I have no clue as to what I am accepting.

What is it that’s making me this way? Can it be treated? Can it be cured? Is it long-term manageable? Will I always be unable to walk and need a wheelchair – or will I get better? Or at least be able to walk a little, even with a cane – maybe with the dog again? Can I do anything to make it better? Am I doing something wrong, that’s making it worse?  Something is making it worse… Unless it’s just progressing to whatever horrible conclusion it’s going to…

Just… what is it? What is making me like this? I need answers… I need to accept this.

 

Circles In My Mind…

So I keep circling. I have nowhere else to go. I’m not doing the Bargaining thing… it’s very pointless to try and compromise with an omnipotent being. So I’m stuck with the other three. One at a time, two maybe, and too often all of them all at once.

I can’t make sense of it. It’s all a jumble, everything all mixed up. Circling and spinning and jumbling. Kinda the reason why I asked for therapy over a year ago… but nothing turned up. After a year and a half, there’s nothing. I have no answers; I have no closure. Not even a real diagnosis. Not even my GP accepts the “Fibromyalgia” right now, because it’s a “diagnosis of elimination” and, frankly, nothing has been eliminated except a slipped disc. Sort of. Not even MRIs catch those sometimes. As a diagnosis of elimination goes, that kinda sucks. The Pain Clinic’s attempt at “eliminating everything” kinda stopped at one MRI and poking me once in the spine nine months before I saw them again. Somehow, I don’t think that completely qualifies.

I’m lucky; I have a GP that wants real answers and cares that I get better. Or at least have answers. He’s a good doctor.  I don’t expect to have a different diagnosis, but I want to know it’s definitely that. Not anything else. That everything else really has been eliminated. I suppose no one wants to have the wrong diagnosis, to have the wrong treatment – or worse,  no treatment.

I already went through that once with the depression/Asperger thing. I’m not willing to accept the first thing someone says.

 But until I do get something that is as concrete as possible, I really don’t know how I’m going to get to Acceptance anytime soon, or before… But somehow, I really want to try.

 


Applying My Mind

I finally have something constructive to do for someone else – work, if you like. Unpaid and a volunteer role. One that is fun and somewhat challenging, so I’m pretty happy about it.

I have offered to help a friend – my best friend – with her (first of many, hopefully) application for a new job. Her current one is getting a bit rubbish, and she’s been doing it for over 15 years, so it’s time for a change. An inter-departmental change, but a change nonetheless. Where she will be appreciated a lot more than she is in the office and department of the organisation she works in right now.

Editing, ghostwriting, and having to stuff a ridiculous amount of key details into 250 words or less for each of the five answers required – actually my idea of fun. A challenge that involves editing and writing – very fun! I’ve taken her statements, the details of the examples she has given for each one – lengthy ones stuffed with every detail I could get out of her – and now I need to get all that information into the condensed version to go into the application form. A challenge for the kid who could never even stick to the 1000-word limit on essays in school, whilst everyone else seem to struggle to get over 50…

Like a lot of people with dyslexia (undiagnosed, but obvious – back in the 80s, few kids were ever even tested, let alone diagnosed with such a thing) she finds it difficult to write these things. She can speak brilliantly and can knock-em dead in an interview, but getting those interviews can be difficult. She knows what she wants to say, but can’t write it, which is where I step in.

I hope I will be able to do my friend justice – after all, she deserves the best chance to shine in a pile of identikit printouts on someone’s desk. She’s good at her job and deserves to be appreciated for it somewhere where people have a combined IQ of above double-figures. The problem is my medication for the… whatever. Pregabalin has helped in a lot of ways by muting some of the pain, but it has also affected my brain, my mind, my focus, my concentration, my perception, my memory – all the things I hold… held?… most dear. I have little else except my mind, and it has taken some of that away from me. On the other hand, the pain screaming in my brain takes away all of it, so you have to prioritise these things. But the fibre-fog, the Pregabalin haze, or whatever this problem with my mind is, is seriously detrimental to me and is preventing me from managing basic things – the one thing I don’t want to do is have it become detrimental to the work I’m about to do.

I’m hoping getting my concerns out of my system now, a little more coffee, some food, a little pep talk for a confidence boost (severely lagging), will allow me to concentrate better and get these answers written consciously and as required. My mind keeps fritting away, my focus waning constantly. Time, even days, seem to disappear. It’s a norm I refuse to accept, but doesn’t make it any less true.

Now the time escapes me again; what seems like a few minutes has turned out to be several hours. I don’t know where they go or why they seem to slip through my consciousness like sand through fingers, leaving no trace, feeling like nothing, disappearing quickly without a trace. I forget my meds, to eat, and in this case, to work.

Now I’m going to try really hard and concentrate, and get those statements edited into their 250-word maximum. Hopefully, I’ll end up getting it right. Deadline is in two days, and I need to get it done today.


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