Tag Archives: miserable

JUNE 2019 — Daily Mood Chart • Disturbingly Not Good… 😔

I use Dailyo diary and mood tracking app for this:

https://www.daylio.net

This just about says it all… 😞😖😢

When you are going through it, it’s bad enough… But to see it like this… You really do get to see “in black and white” as it were…

It was terrible to go through. It was a Hellish Month! 😰😖 … I hope that this next month will be at least somewhat better.

I’m not holding my breath or anything, though… 🥺😞


TMI

| 9°C |

Overwhelmed. TMI’d up to the hilt. My Mind has been blown to pieces… and then those pieces have been blown up too.

I can’t even… You know, I am buzzing on the inside… I mean literally, like every cell has its own TENS machine or Thumper Wand.

Too much everything. There’s no time to think. No time to wind down. There’s no time to Sleep – and they come with Nightmares anyways.

I’m blacking out – because All of This is just Too Damned Much. I am dying inside. I don’t want to know about any of this. The Pain is Ridiculous. The Emotional Turmoil is Overwhelming and Pathetic.

I need Space. Headspace. Peace – from the Chaos, the noise, the constant haranguing. Something always has to be done. Or noted. Or talked about. There’s always a Ping. There is always someone talking. Then there’s people walking in and out of my room, as they please, talking about stuff they could message me with.

Things keep happening and going very, very wrong… A continuous chaotic cacophony of Mind-Blowing, Brain-Breaking Stress, that just seems to never, ever end

Nothing goes right. Nothing goes easy. Nothing I do is *enough. And worse of all, is that I can’t stop other people from messing with my head, giving me Meltdowns, frightening me, Badly Shocking me, or breaking The Rules and Harming MeDestructive, Harmful, Destroying.

I haven’t stopped. I’ve been going, going, going, and haven’t even barely taken a breath for myself… Everything takes time away from me. There is no rest. There is no peace to steal. There is no respite. There is no Mercy

The Agony… The abundance of TMI… It has me blacking out into hallucinating unconsciousness; one that is uncomfortable and frightening.

Physically, I can’t move. Breathing is difficult. I am “imprisoned” in my Room again. I am Resentful, Frustrated, Hateful, Forced into this… The Agony is Unbearable.

These Feels are… Heavy… And I don’t like them. I only want them to go away.

#pain #chaos #drowningfeels #sensoryoverload #agony #despairing #stressed #drained #dragondisappointment #anxiety #asd #tmi #fatigue #helplessness #aggitated #exasperation #exhaustion #frustration

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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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Catheter Chaos • Boots Discrimination Discomfort…

Temp | 11°C

The Catheter just came out again…

It lasted only 6 Days, this time… 😳😔☹️

It’s so annoying, having to undo all the straps and sort through all the tubing, and whatnots, when disposing of a shoved-out Catheter.

Then there’s the Dragon of Disappointment, and all the other damn “emotions” and crushing, suffocating “feels” that go with it.

Certainly makes me more determined to get a good meeting out of the Suprapubic Pre-Op Hospital Appt. next week

Catheter tubing, leg bag & Night Bag
The Reality of the Indwelling Catheter

I really feel… horrible… Betrayed, almost, by the damned thing. Strange, but true!I thought I could at least make it through another month, but apparently not. My stomach is all knotted… I feel something… crushing, twisting, fiery, scratchy, bitter… upset…😢

I am not in the right space for this to happen along with everything else… 😖😖😖

I was miserable enough without this…


It’s been spasming all day. No doubt due to all the stress I’ve been under. Or… maybe more like I put me under… 🤨🤔… 😒😒😒

Between fearing the arduous and overwhelmed task of flipping the mattress, and the issues I’m having, now I’m arguing with Boots about whether or not people in wheelchairs should be treated better than naughty puppies, I’ve been in a lot of depressive misery today.

Boots made me feel small, pointless, miserable, undignified, insulted, belittled… Vulnerable… I’ve been in scared and sorrowful misery all day.

But then I got some balls and got going with sorting out the mattress, because there was No Way I was sounding another night like I had been, in that much pain. I’d had enough painful nights and nightmares, and last night was the final straw.


But I guess it was too little, too late, and the stress of all of it was too much…?

Either way… The bastard thing is out again. 😒😒😒😒😒😒

Catheter tubing & Night Bag
This is what it should be doing… As opposed to shoving itself out of me…🤨😒

#upset #frustration #fatigue #exhaustion #fibroplegia #dragondisappointment #irritated #sad #pain #dignity #suffocatingfeels #catheter #fibromyalgia #anxiety #aspie #healthcare #alexithymia #stressed #dismal #depression #resentment #helplessness #disabilityPowered by Journey Diary.


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…?


Cold World, Cold Hearts

In these times where this government (or Satan’s minions – take your pick) state that people need to “come off long-term sick” and “go back to work”, I have found for myself that actually employers do not want people with long-term health issues on their employment list. In fact, I have just been “let go” because I am not well enough to do everything they require of my for the minuscule pittance they pay me.

This is despite the fact that I have gone to great lengths to try and continue to work the best I can, and (in a great irony) made myself more ill by going to work when I was really too ill to work, to help them with important reports so they would get done. If I hadn’t done that I would not have complicated my already fragile health. I had pneumonia (as well as other health issues). I went to work anyway because it was important to them to have these reports done, because there was no one else to do them. For 2 weeks I pushed myself until I literally couldn’t move. I struggled until I literally couldn’t get off the floor or out of bed on my own. I did it through a pointless sense of loyalty to an organisation who clearly didn’t care. Yesterday I received an email basically stating I was too ill to work for them, in their opinion. They didn’t want someone who was ill and struggling.

Oh, and did I mention they paid me pittance for this too? It’s the worse-paid job I’ve had in years. I took it because it was for – what I thought – was a worthy hospital. Is it irony when the NHS tells you you’re too sick to work for them?

I was working from home and in the last couple of weeks had the equivalent of 4 people’s jobs dumped on me – with no pay rise (and yes, it’s the worst-paid job I’ve had in several years and I wish I hadn’t taken it, because my outgoings went up considerably shortly after I started it). I struggled to go to work until I literally couldn’t move – emotionally blackmailed into it, because there was no one else who could do what I did. Everyone in my team had already abandoned this ship. It was just me left – and also my ex-boss who still had half a finger in his old role because he also left before they found someone else to do it instead.

To be honest – apart from the money thing – I’m rather relieved. The area I worked in was unravelling quickly and there was no proper organisation or management in place. My two bosses left with no substitute in place, leave me – a consultant (a temp) – alone to deal with everything (as well as the jobs of 2 other people too, on top of everything I was already doing). There was no longer any structure, training, organisation, or semblance of sense anywhere. I’m glad I will not require to carry any burden of responsibility for this – and I am certainly in no condition to do it now.

Between the pneumonia, my rather delicate condition before it came, and pushing myself to run a 3 hour round-trip commute after walking the dog for 2 hours and working for 6 hours each day for two weeks, I have now crashed and burned. Chronic pain that was almost durable before has now become unbearable. Stupidly strong painkillers finally dull the pain enough for me to walk about without crying. Before I got them, I couldn’t move without unbearable pain just taking my breath away, like I had been punched in the stomach. I can’t understand why I have this – after all these years, perhaps I will now find out (I’ve finally found a GP who’s willing to help me work it out), but what I do know is that it hasn’t made life worth living much. I am just lucky I have people, and a dog, in my life who are willing to help me.

Apparently, what I can’t do it work. My own (ex)boss told me that in no uncertain terms. When the idiots in government decide to penalise ill people for deciding “not” to work, they should probably check whether employers are willing to employ people who aren’t perfect. Who aren’t super-healthy. Who have medical conditions or disabilities that make life difficult. Business models in this country to not allow for people with health or disability issues to work in the capacity they are able to, and certainly not for liveable salaries. It’s not acceptable to work from home, Skype into meetings, or have the company/organisation help with things to make things easier – like cabs to work, which I cannot afford, but if offered I would then be able to get to work with no problems (I can’t travel by bus or train right now, thanks to the fact I can’t really walk far or for long, I cannot manage stairs, and I am unable to drive now).

If I didn’t have to do things like pay for stuff it wouldn’t be so bad. But unfortunately, shops tend to like you giving them money for their things. It makes life difficult when you don’t have any to give them. It usually means you can’t have things like food, which is unfortunate when they’re rather necessary.

Making ends meet was difficult enough as it was. Now, I really do not know how I will manage. This is not exactly a society that cares to look after its vulnerable people. I’m not exactly elated I seem to be one of them.

I can only hope somehow this is some way of changing things up in my life – foxing my hand and heart towards something that ends up being better for me that the path I was on. Perhaps that is wishful thinking – a false light in the dark. But since the alternative is giving into depression, I’d rather hang onto that. It’s a nicer thought that comes with hope. And without hope, there’s nothing.

 

Fall or Fly


The Painful Truth…

 

Living with chronic pain is, to say the least, a right pain. It restricts what you can do, and in most cases you end up being reliant (at the very least) on strong painkillers to get through the most basic of tasks and the quietest of days – doing any more than that can require a huge amount of willpower and gritting of teeth, followed by pure exhaustion.

 

Personally, I am really tired of being in constant pain and having to treat my body like it’s made of bone China. There is barely anything that doesn’t hurt every second of every day, and even a slight pressure can cause a lot of pain which can border on agony if it’s already flared and sensitive. I’m tired of being always tired – from the effort of just living, I’m perpetually exhausted. My mind has to be continuously active in blocking out as much of the pain as is possible, and this drains me. I used to rely on painkillers until I became addicted to codeine – now I have mastered that, I try to stay away from them as much as possible and try to manage my pain by shutting it out of my mind, or just gritting my teeth and trying not to cry. Only when it becomes too much to bear do I end up turning back to the pills, and I control my consumption of them with an even firmer iron fist than I do the pain itself.

 

I must admit that I believe a life without it would not be my own – it would be unrecognisable as a life of mine, having dealt with this for most of my existence. I’ve had it for so long I would not recognise my life without it, and would take a lot of adjusting – not that I wouldn’t take that option in an instant if it were offered. I have incorporated it into my life and tried to work around it as much as possible, but this has been unfortunately to the detriment of other things – like fun activities. I loved yoga, horse-riding, walking – these are no longer a part of my life, except for a small amount of walking (and by “walking”, I mean long walks or treks in nice places, not walking to the shop…). My job is now working within IT and sitting at a desk – standing and walking for hours hasn’t been an option for several years, and I could never successfully do such jobs again.

 

In my darker moments I resent the hell out of this semi-prison I am in. I feel so restricted in so many areas of life, and I hate having to think twice before doing anything, and I have heartbroken hatred towards my body for keeping me confined in pain. When a light hit, or even a touch can leave me squealing and in tears, it drives home how much I hate what it puts me through. My bones, my back, my stomach, my legs, my shoulders, my head, my neck… There’s hardly an area that does not cause me endless pain day after day. Nothing but strong-ish painkillers can give me any relief – and even then it’s not enough to be pain-free… It just dulls it enough so I don’t want to cry from it. The real gem is that I can’t even take anti-inflammatory pills because thanks to a blood-clotting condition NSAIDs are out of the question.

 

In my more dramatic moments I feel cursed, angry and frustrated. The stress of having to cope with the unrelenting pain, as well as trying to focus on doing at least some daily tasks, and my job, plays havoc with my already disastrous and unstable mental health – which then also inflicts more exhaustion on my already-struggling body. This then causes more pain, as my body is made even more hyper-sensitive with tense muscles, tension headaches (or worse – full-blown migraines), and adrenaline hormones surging permanently through my bloodstream. To say that sometimes I really struggle to cope is an understatement.

 

Just a day, or a week, off would be lovely. To have a small amount of time that was pain (and painkiller) free would be a real treat. A restful night, followed by being able to get out of bed without at least wincing, and to be able to move around and do basic things without being reduced to frustrated tears or just plain not being able to move would be pretty awesome. It would be great to be able to sit at my desk without feeling horribly uncomfortable (instead of trying hard to concentrate on work whilst trying to ignore the pain shooting through abdomen, back, legs, and head), or play my beloved videogames without having to have giant cushions placed on the floor just so, to support my hips, back and legs (sitting any other way results in pure agony after just a few minutes).

 

Unfortunately, until real-life starts inventing real Fairy Godmothers with real Magic Wands, I am stuck with grimace-and-bare-it – and what will probably be a lifelong requirement for codeine consumption. Yesterday it was so bad, I bought Syndol – which has a tranquiliser that works as a muscle-relaxant. I had to drink coffee like it was going out of fashion to stay awake, but I was pretty pain-free (and rather out of it) for most of the day… Thank goodness nobody takes much notice at me, hiding behind my screens, at work!

 

Right now, at this moment, the pain is bad – the codeine has run out and my head is overwhelmed by the pain data flooding in from just about every part of my being, especially my back, hips and legs. It does make me want to cry (sorry to be all morose and all that…) – and I do try to cope by turning up the volume on my headphones (thank the lord in the rather insular world of IT world it’s a fairly normal practice to stuff music in your ears and concentrate on your work) and drowning out the “noise” that the horrible pain makes.

 

Eventually, I’ll give into it and pop another two pills – careful not to slip into dosing way above the recommended limit, like I used to. After the splurge of “celebrity” deaths following overdoing the painkiller addiction until you officially overdose, I have become very relieved that I have survived doing exactly the same thing myself, with no long-term damage done. It’s too easy to do – I know that as well as the next person doing it – so I am hyper-vigilant about it now.

 

Like everyone else in similar situations, it’s really just all about the bottom-line… You just want the pain to go away…

 

 


An Ode To Ouch

Being in constant pain is not much fun. And now it’s late at night, BlackBerry AccuWeather is reading 16 degrees celsius, and I have to have a hot gel pack on my spine because it hurts so much… It’s not the best feeling – it’s like being put in the oven as punishment for being in pain.

It’s worse because I feel like its self-inflicted. I was already in a lot of pain before embarking on several miles of long walk yesterday, which then inevitably inflamed and flared up what was already rather annoyed to begin with. The result has been that I’ve barely been able to move all day, and what movement there has been has inevitably lead my brain to react with silent screams and blinding explosions. Coping has been mainly taking painkillers, staying still, and taking out my frustrations on anything that gets in my way on my wanders around mythical world of Skyrim on my Xbox.

I’ve decided I definitely don’t like pain. Not that I like pain… It’s just that I’ve lived with quite a lot of it for most of my life, and I’ve only recently started to learn what it like living without it. So now I actually realise what it is to have to suffer it as a seperate entity to myself, and started to realise it’s not necessarily a built-in package to my existence. I also realise that I simply had to unquestioningly co-exist with it because resenting it is very annoying in and of itself, and takes up a lot of time.

I’m trying not to resent it now. It’s not going very well, though…

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