Tag Archives: fibromyalgia

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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Storm Hannah… Storm Horrible…

Temp: 5°C

Well, Storm Hannah has well-and-truly landed here… My entire body feels like it’s being crushed and outside the wind has been playing up something terrible…

Oh, the lovely Horrible Hannah

😖😩🌧🌧🌧💧💦☔️☔️☔️💨💨💨🌬🌬🌬🌊🌊🌊🤨😒
FECC7D51-E69E-4FFE-8003-338AAC3ABB1A

I truly am in a boatload of pain. Now, between the big storm and the bed that was supposed to help my back but is now hurting it, I’m not even really functional. And my fingers are on another planet of horrible, with all kinds of Paraesthesia running rampant in them. Numbed. Achey. “Buzzy”. Severe Paraesthesia. Difficult-to-Impossible to move.

They can’t even type on the iPad screen keyboard properly, for here. Not just through function, but also because the electrical stimulation in the fingertips is what actually makes a touch-screen touchable. And when fingers are numbed they have a hell of a lot less of it, to make it work. 🙄


Today is clearly as frikked up as yesterday, and I don’t think anything is going to be right with this day, either.

Yesterday was all planned out… Until something went snap. We were going to flip the mattress, change the bedding, and make the bed not try to kill me with pain. I had a huge bag of beanbag beans come specifically for that day, so I could sort out the giant beanbag, and beanbag pouffe, to go with the nice, fixed-up bed.

I even had a Loot Crate box come. Although… I’m mad at them right now, for losing one of my boxes, then being an annoying bitch about it, going around and around, trying to wheedle out of any responsibility for it. I also asked to skip this current month’s crate, but they sent it anyway, probably because I bought a 3-month “subscription” from them.

So, the “skipped” one received is currently shoved in a far corner of the room, because I never really wanted one with a bunch of IPs that I’ve not even played, let alone a fan of, in the first place. And, to make it worse, the box is diddy.


Today is already going the same way. So much Pain. Cold. Storm Horrible outside. Back, Spine (Skull To Sacrem), Fingers, Hands, Head, and Left Arm, all hurting and aching and being horrible a lot. My left arm being in such pain is different, and a bit of a Big Deal, as it does a lot of things… and I can barely lift a coffee cup with it. Not Good

And on top of all that, Dad is out in the storm (with the dogs, if course…), rushing around trying to get emergency Tramadol for me from the Out of Hours system, because Mam accidentally ran out, and only realised last night that there was only enough for this morning in her box.

It was Friday night, so OOH was the only place to turn to.

Thankfully, they ponied up a prescription that could be picked up this morning, so after waking me at 10:30am, Dad left to go pick it up from the Hospital and take it to Boot’s to fill it. All ready in time for next Meds at 1:00pm.

Last weekend, it was my face. This weekend, it’s the Tramadol. I wonder what we’ll bug OOH for next weekend… 🤨😒😒😒

#medication #isobars #anxiety #dismal #weird #exhaustion #miserable #fatigue #weather #storms #healthcare #sad #exasperation #upset #outofhours #fibromyalgia #frustration

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“You Don’t Know What Damage You’ve Done…”

There Should Be No Shame…

But… There. Is. 

So. Much. Shame.

I can’t work. I can’t breathe. I cannot seem to stop it running around in my headDepression, Panic, Hopelessness, Despair… All claiming me. Claiming my attention. I cannot relax. I can’t even take a deep breath — both literally and figuratively.

This idea has burned up my brainShaking, Shaken, Shame, Horror, Sickened Disappointment, all running rampant, until now I can barely move, I’m so frightened.

I read today on Twitter one single Tweet that stuck in my mind, saying:

 
If you’re living with this illness and functioning at all it’s something to be proud of, not ashamed of.
 

Carrie Fisher

This is what she has taken away from me. That physiotherapist.

Every Hacker, even every kind of Fighter, knows it takes one tiny flaw, one minuscule hole or weakness in the armour, and you can wriggle in and destroy what you’re going after. My armour was nowhere near strong enough to take this. It was new, vulnerable, still setting in its place. I am not sure if I ever even had a glimmer of a chance to survive such an onslaught of horrific demons and emotions from that one simple curse laid upon me.

My mind feels… Dead. Hopeless.

I’ve been trying to play Skyrim. No avail. Between my head’s cacophony of daemons, and the dogs’ constant barking (which dad ignores until I yell at him over text to fix), I’m in Emotional Hell. With Alexithymia and ASD. Meaning, I got no way in all hell’s universes of getting through this or managing this alone.

The constant barking screams it all home — if I was OK, if I wasn’t trapped here, if my legs workedthey wouldn’t be barking. I’d be there, telling them what to do until they figured out it wasn’t in their best interests not to make a peep. Dogs hate lectures. A lot. They love huggles and praises. So, it works like a charm to lecture their ears off, and they really think hard before doing it again. (Go on try it…!)

QueueHatred, Resentment, and Breaking Inside Till I Shatter & Die. Because I am not a good Mother. I am not a Good “Dog Owner” (hate the term). I am letting my babies down by not being there enough for them. All of this right now, once again, just Feels Wrong.

Not “OK”, like it did before. Like I fought so hard to feel. No. The horror inside I endured for nearly 5 years is back again, and doesn’t seem to anything but cruelly relentless and suffocatingly strong.

 
Utter Shame. Overwhelming Resentment. Clawing & Churning Despair Inside. Extreme Self-Hatred. Suffocating Feelings of Pointless & Being Troublesome. Disturbing Thoughts of Death.
 

I got them all to go away. I chased them out… But they apparently only got as far as a holding pen outside of my consciousness. And a fickle one at that. Now Queue Dragon of Disappointment to come and join in, and sit on my head again. All having a party in my brain, destroying it like it is a hotel room and it’s the band’s last night.

I’m trapped inside it, being tormented by it all. Imprisoned in my head, as well as everywhere else.

I’ve done this. I’ve done this before, and I’ve gotten away. I’ve done this before… so, so many times

… So, why do I have to go it again…?

#depression #quote #drowningfeels #suffocatingfeels #trauma #ptsd #imprisonedfeels #fibroplegia #lost #fibromyalgia #dragondisappointment #despairing

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A Different Physio Pain: When NTs Harm Without Consideration…


I went to physio. I wish I hadn’t. Even though it was technically a “good session” — productive, challenging, effective… It was not a good experience.


Mainly, I’m upset because after all my (emotional/ psychological/ mental) hard work, I’ve been thrown back to feeling inadequate, clunky, awkward. It was horrible, making me feel like physically vomiting; the nausea siting in the bottom of my throat like a boulder. I felt shame, resentment, disgust (with myself, and also the physio). And the worst thing—My chair no longer felt like an extension my myself, like it usually did now.

No. Shame.

This was how I felt for years. When my legs were failing, and after they failed. When I had to learn to deal with spending my moving life with a wheelchair. Learning to realise, that — amazingly — I was not “confined” to a wheelchair at all, as people so often expressed. No—The exact opposite, in fact. I was freed by my chair!

The realisation was slow coming, but it was astounding. No longer was there suffering of pain through my hips and back, wobbling on my feet and afraid I would fall. Over time, I became stronger, and then when I also had Neuro-Physio with the previous physio specialist, who was amazing, I got even better. Even stronger. First with Musty (GTM Mustang) and then with Kushty (Küschall K-Series), I become better, more capable, more confident, more accepting. My lovely chairs helped be better, stronger. It becomes my new normal.

Then someone turns up and says… it’s not. Not normal. Not good enough. Not something to be confident about.

As good as physio might be, the new person is not. She’s not like the last one. She hurts my insides, my Feels. Today, she kept going on about using my legs, “waking them up” and maybe walking. “Ooooohhhhhh, you never knowwww…” etc, etc, hollow, disingenuous, delusional idiotic bullcrap, over and over and over again. Seriously, she must have said exactly that five or six times. At least.

It. Hurt.

It felt like the obvious underlying statement was, only that was good enough—having legs. That I should blindly hold out all and any fragments of hope, and everything short of that was insinuated to be —gods-damned presumed to be! — nothing but a pathetic and miserable existence.



This ridiculous notion is what they call “Hope” — but what it really is, is Magical Thinking. And it just makes my heart and soul dissolve and freeze into dark black ice, caught between utter hopelessness and fuming anger and insult, at such horrendous ignorance.

What I prefer is realistic expectations, not stupid “oh, you never know…” utter bullcrap. I could say the same thing about walking on the moon, for gods-and-spirits’ sake! “You never know…!” Gah! It’s moronic, babyish, and, frankly, pathetic.

Oh, and believe me when I say I couldn’t care less if it’s “coming from a good place“, or they mean something nice. If you mean something nice, say something… y’know…Nice..?! Intention means nothing if the result is nothing but harm.

I will never understand the NTs’ obsessive insistence of clinging to blind, delusional “optimism” (aka: Magical Thinking). What’s wrong with Truth? What’s wrong with Reality? What is wrong with being less than Fairy-Tale Perfect…?? 🤬😡😤

I understand “Never say Never” about Unknown Quantity or Unknown Outcomes, especially with people. I fully accept there could be some connective electrical activity re-triggered and re-awakened after the (stress-induced) traumas I have endured over and over again. Unlikely as it is. But there are many, many better ways of communicating this, including offering great support (this is what her predecessor did). Pity is never an answer.

No scientist or mathematician got anywhere by basing their answer (or presumption) on nothing but a premise or hypothesis — Yes, almost anything is technically possible. But then, there’s also Magical Thinking, which involves utter Unicorns-and-Rainbows levels of nothing but fantasy.

Scientists allow for anomalies and possibilities, and yet they also don’t expect the moon to fall down to just 33,000ft above sea-level so we can all have it easy and just fly there on a 747 widebody, or for a black hole to morph into a sandwich, because “it’d be cool”. 🤨🤨🤨

In other words, we can’t just manifest crap because we prefer it.

If that was the case, I’d be using my own 3 wishes to make my natural hair to that of Disney’s The Little Mermaid, for my legs to be her tail, and for the ability to read people’s minds. I would not be wasting one on whether I could walk again…! 😒🤨😤

I cannot even begin to explain how these sweeping statements put my teeth on edge. Disingenuous. Despicable. Fantastical. Delusional. Weak. All things I am not, and refuse to be..

Maybe it’s the ASD. Maybe it’s just (or/andAlexithymia. But all of that delusional stuff just… Sends me into a tailspin. I’m here, I’m *Me*, and *I. Can’t. Walk*. I have a pretty chair with cool wheels to make up for it, and the physical strength to help me function and manage it. There’s nothing wrong with that. Is there…?

What I *do not* have is Mental Strength, and I’m Traumatised and Fragile. I cannot bear being told that basically I should do nothing but “hope” I can walk “one day”, because nothing else is good enough, and anything else is entirely… Pitiable.



So… What, then? I genuinely do not understand… Why is it so not OK to be like this, like me, that I’m being pitied and told to invest in false hope by a physiotherapist? One who dismissed what small (or huge, to me…) progress I had made, in favour of sweeping statements of disingenuous pity and false hope?

Am I supposed to twiddle my thumbs in the Lobby of Life, waiting for the 0.000000000001% chance I *may* feel or move my legs again? I have a better chance of winning the lottery… and I never play it. Am I now just some-thing… That I’m not worthy to do anything else, I I have no use of my legs? Am I just to sit around and be Pitied? Is that supposed to be it, now? That “walking should be the bee-all-and-end-all of life and everything” is… life-limiting. Debilitating. Disabling.


Pathetic.

To me, it’s a rediculous notion for anyone to have… And for it to be utterly despicable in a damned physiotherapist.

I’ve spent a long time trying to build up to having confidence in being in a chair. This made it all come crashing down. Swept away, destroyed, what little confidence I had started to develop in myself as an active wheelchair user. I cried — and I do not cry easily, if ever. I’d worked so hard to feel some self-worth in being a wheelchair user and physically incapable. Now, it was gone.

I do not wish to sit in Limbo, waiting for some fantasy “Maybe” (which isn’t real at all). I’m not putting things on hold anymore — I’ve been pushing myself to go ahead and be Me, which includes having Wheels and getting on with things. Even if its small things.

I don’t know if I have the… verbal sophistication?… to fully explain what I mean. Why it hurts, damages, so much. Nothing I’ve written here, or could write, could convey, that is accurate to how much this affects me and hurts me. Harms me.

I feel Depression inside, with its special brand of Extreme Anxiety & Sad. They’re playing their part well, and strongly. Inflicting their “Bad Feels” upon me, and more than occasionally drowning me in them. Making all these things worse, communication and processing longer. Meaning this “incident” with the physio made everything 10,000 times worse.

It’s all become a bigger mess now. This has been added to my brain as yet ONE MORE TRAUMA to deal with. It shouldn’t be like this.

There really is only so much that a person can take… and I passed my limit a long time ago.


A Victim. A Survivor. A Warrior.
Keep Fighting.


The Hair Dye Rollercoaster

Dying Hair.

I rather imagine that to most people, it’s not that big a deal… Or maybe it is, because, well, it is their hair. But whatever that truth may be, mine is that of… well, if it goes wrong, it’s a Mega Disaster of Exreme Proportions. What am I talking about? Hair dying going very, very wrong. Not the “it’s gone accidentally green” kind, mind you — for me, all it has to be is the wrong shade (especially if it’s too dark). It’s a very, very real concern for me, when I have to start using a new hair dye, because my usual one is somehow available no more.

The very words new hair dye just fills me with dread. It could mean anything — a wonderful new find, or a complete disaster of epic proportions that scar my red-hair-loving sensitivities. There have been more than enough disasters. I’m too old and too experienced, and far too Aspie now, to cope with anything other than perfection. And I cannot guarantee that if I have to use a completely different kind of hair dye, and just do more than basically hope for the best…

As an Aspie (ASD/Asperger’s), I find any change incredibly distressing… Add to that, my finding out my favourite hair dye was now unavailable and had ceased to exist. Not only that, I’d not long had to go and find it as “the new hair dye”, because my former favourite dye had been changed just enough so that it was now unreliable, even had an unstable and unseemly colour to it… and I had been using that one for years. It was not good.

All this, along with everything else, was making things not too easy to live with, when it came to my hair. My hair means everything to me, and dying it red — no matter what shade of it that I’m after at any one time — is the biggest part of it. Without it, I wasn’t me. I couldn’t self-identify in any way if I didn’t look down as see red tresses. If I looked in the mirror and saw even a small amount of “Badgering” (where the regrowth is a mixture of heavy grey and nearly-black hair that is showing well enough to be obvious), then I started getting a little anxious it was no longer red.

An Aspie’s Dilemma — Fear vs. Roots

It might sound silly, or dramatic, to others, but so much swapping and changing was all starting to feel like Trauma. It can be downright traumatic to endure any changes when you’re ASD; but something that beloved [as my hair] being forced to undergo so many of them in a relatively short space of time (for me) makes it too, too hard.

This felt like Trauma, on top of Trama, on top of Trauma. This current rollercoaster of hair colour was emotionally exhausting, always having to go and find a new one that would suffice, and then having to use a whole new dye, forced to repeat the scenario over and over again, when this recently “new” one is discontinued or no longer available for some other reason.

Not only is all of this going round in my head to deal with, but there is also the part where I’m trying to come to terms with the fact that a replacement is required at all... My mind simply cannot comprehend why it’s necessary to discontinue or change something that just works. That fact is also difficult to comprehend. When it does happen… It’s always a split second moment of being hit with the feeling of utter grief and despair of the loss (yes, honestly, that is how I feel!), soon replaced by a sense of just freefalling and panic. What to do now? What am I supposed to do, what am I supposed to use, to colour my hair? Where do I go? Who [in the hair dye universe] do I turn to now? How could this happen? Why me? … Seriously. 😐 🤨

It runs through my head, over and over again, like a mantra of pure terror, of utter panic. It usually sends me into a frantic, fevered hunt all over the internet for something to replace it. Quick. This super-fast pandemonium is only halted by finding something that will… suffice… at being my answer.

I do hate doing at that though… It’s a sensation that I would rather never experience. Ever. I was saved from it for many, many years — but then the company went and changed it, somehow, and then I had to go to find different ones. Then a few months after I managed to find its replacement, that ended up discontinued without a word of warning. Leaving me with absolutely nothing with nowhere to turn. Just Charming...




This is how I have ended up with this choice — Garnier Olia. It has some lovely reds on offer; the one I chose (after some long pondering), was 7.40 Intense Copper.

My hair was dyed a very similar colour from my last one — therefore, to me, this felt like it showed the most promising liklihood to be an adequate replacement.

So, terrified and with great trepidation, I chose it and waited to find out the fate of my hair with this one.




New Beginnings. Again.

Starting the process of using a new hair dye was a Big Step. I had to try hard to convince myself to do it. In the end, it was the Badgering — at least 2 inches of the that damned regrowth by now — that did it in the end, and pushed me over the edge. I just couldn’t take it staring at me anymore.

The process wasn’t a complicated one, about the same as all the others, but it was more elegant and better thought-out than any other one I’d come across. It was rather clever and thoughtful to make it so you could use the box itself as a steadying stand for the applicator whilst you poured the Developer Creme and Colour into it.

For someone with dexterity issues and weakened fine motor skills, who is now very clumsy from it, this Hair Dye Set/Kit was the easiest one I have come across. For me, it is the most “fingers-friendly” of them all. I really liked using it, and I was constantly surprised as to how different (read: “easy”) it was to use to the others.

It also certainly didn’t hurt that it all came in some lovely packaging, too. The box itself is very elegant, sophisticated and eye-catching, with most of the front of it showing just the hair colour, not a model with it on, allowing you to have a better idea of what shade is to be expected when using it. The bottles and tubes within are pretty and easy to use — not to mention the tear-shaped bulbous applicator that is a fantastic shape to use it, and makes applying it, even with my rather struggling hands and fingers, easy to manage.

If the Kit itself was well-made, the product — in my own opinion — was just as much so. It was easy to use the dye, because instead of it being a form of… sticky, goopy, watery, well, goo… it’s a thin but creamy-esque texture that was easy to put on. It went much further than the average bottle of dye. It covered pretty much all of my hair quite well (and I have really long hair) and I only used the one bottle to complete my hopefully-not-too-different transformation.

I leave dye on to marinade/cook way too long — but I find that it works a treat. It’s not 30 minutes, like on the box… Oh, no. Mine is more like, 3 hours. Oh, yep! But afterwards, I get a pretty great colour, better than I did before.

To add to this, I also wrap it up in a plastic shopping carrier bag, tied around my head. This helps keep it from drying out, helps keep it safe — and things safe from it! — and allows it to marinade better under there. They’re quite the rarities now, but I end up getting a few of these plastic carrier bags from some places, and mainly Subway sandwich stores, due to requiring to carry multiple items on the back of my wheelchair, and of course, I hang onto them all to dye my hair with!


Shiny. New. Hair!

The rest of it now, even for me, is a piece of cake. After the required Marinating Time, it’s into the shower and the dye comes streaming off.

The rest, as they say, is history!


Anniversary of Hell…

Today is the anniversary of when I first was taken into hospital

On the 28th January 2018, I was booked into a Premier Inn, to go to my niece’s christening the next day.

Instead, I was carried into hospital, barely semi-conscious and screaming so loudly apparently they had to put me into a former office/storage closet, until they had a bed to feed me tramadol and morphine … I woke up in a hospital’s SAU (Surgical Assessment Unit) instead of a hotel… and my parents lost over £200 for the booking… 😢🥺😖

My brain is trying to process it, rather unsuccessfully, to be honest.

However… I like the fact the anniversary of my leaving coincides with one of my new physio appts. I think that’s telling. I could not even wheel myself through the hospital back then.

To celebrate it with something that would have been so alien to me back then, doing what I thought was impossible — like being able to sit up a little on my own, or hold myself up on parallel bars for nearly a whole minute so my body is “standing” upright (as in, I have managed to become strong enough now to hold all my bodyweight enough, so I could raise myself upright on them)— is almost confounding … 🤯


Dear Chronic Illness/ Pain/Conditions Sufferer…

A Message For Anyone Who Is Suffering With Chronic Illness/Pain/Conditions… Especially Those Facing This (whether literally or emotionally) Alone…

I’m so sorry you’re having to endure this — it’s difficult enough to deal with one condition, let alone several and at a severe and heightened state too 😦

The first thing I really do want to say here is: **You Are So Brave**. Truly. What you are facing is truly horrendous and scary (Chronic Illness/Pain/Conditions are utterly terrifying, and people do NOT EVER take it seriously enough! 😡*big scowl*🤬), and yet, still, you face it. You endure it. You keep fighting. You are still alive and you haven’t given up. That is ALWAYS admirable and commendable. Even though you feel utterly awful and exhausted and frightened, it’s still true. So, please try to remember that… 💜

I think I may have some understanding of the awful situation you’re having to deal with — I have had  Chronic Pain and Illness and Conditions, all at a very severe level for prolonged lengths of time, including many asthma attacks requiring emergency hospital treatment (I’m now strangely very comfortable and familiar with the back of an ambulance… 😒🤨), and I’ve suffered more than my share of PTSD with many things that have unfortunately happened to me, and have even attempted the worst at times… And I am well aware of what *I* felt and suffered in those times, and I truly never want to think about what I had to go through with the episodes of psychosis I have suffered on many a pill I’ve been told to take, it was so very horrendous. To be on them continuously, without being able to come off them, must be harrowing. To anyone who cannot come off them, *You* must be very, very much suffering with this… 🥺😟

As an Autistic person (Asperger’s), this also made all these experiences worse [for me] because the way I deal with every small thing in life is that it has to be controlled for me to understand it, and without understanding this (my illnesses/conditions/pain) it made it all the worse… So, I’d like to think I’m coming from a place where you might feel I do have a little understanding of being where you are.

Whatever you are going through, it’s going to feel like such a lonely, awful, frightening place to live — so near yet *so* far from what you truly need. You have, quite possibly, been through such utterly terrifying and traumatic experiences whilst dealing with your journey. I lived in London with all kinds of available people in several hospitals around me — and yet I STILL could not get the treatment I needed for the (many, many!) things that have and are wrong with me, so to not have ANYONE around in the medical practices around you, that is the most scary, almost more than than anything. It doesn’t matter whether or not it’s available, when you’re not being given it, you’re having to watch your life disintegrate around your ears, and not being able to do a thing — not a goddamned thing — to help yourself, because no one told you how. I did ALL the wrong things with mine… If there was a checklist of all the thing that were bad for my condition, I did them all, because I thought I was helping myself. Turns out, they all were the worst things I could have done. Unfortunately, I found out too late. Far too late.

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I have Fibromyalgia and Hemiplegic Migraine, which have somehow amalgamated into some weird-ass crap that doens’t even have a name… something doctors can’t seem to understand or treat, that comes with horrific pain that can only be barely dulled with fairly high doses of Oramorph and Tramadol. My PTSD (now) comes from hospitalisation for a severe blood and bowel infection, and the utter shock and grief of having lost my hard-won “normal” life in London and my pretty amazing IT Career in one fell swoop from this “Fibromyalgia hybrid” (or “Fibroplegia” as I’ve come to call it) that I’ve ended up with (which has also made me almost completely numb and partially paralysed from the chest down), and the fact it took over 2 years to get an initial diagnoses and then a full 5 years to get any treatment at all for it — and by then it was too late, the damage was done and I was wheelchair dependent with no ability to use my legs.

The same thing happened as a child suffering from… something. They called it “Depression” and left it at that, filling me (as a child of 12 and then for many years later) with Prozac and whatever other medication they felt like. Precisely 20 years later, I finally get the diagnosis that really explained it all — “Autism/Asperger Syndrome”. Despite being under them mental health system in so many different ways for most of my life, they ALL somehow missed this, and my miserable life kept getting worse and worse, causing a lot of VERY bad things to happen to me, and I ended up with severe PTSD and suicidal and anorexic/bulimic because of it for over a decade. Unbelievably amazing….

Both times, *despite* bring in the middle of access to treatment, they still refused to give me any. Until now. In that sense, I absolutely do understand how it is to ask and ask for help and nobody listens or understands the severity of your health condition(s). I certainly may as well have had nobody there…

The harrowing [emotional] pain, the physical pain, the anguish, the despair, the panic, the desolation, the desperation, feeling like absolutely NOBODY understands, the loneliness, the isolation (whether or not there are people around you), and also, finally, that hollow and numb-feeling of depression that eats away your insides that causes even more anxiety and panic, making the PTSD flare and get even worse.

It spirals out of control and it’s all just like trying to outrun an avalanche … no matter how hard you try, you’re going to get buried and suffocated with it.

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I’ve written a lot, and I’m sorry about that… However, like I said above, it’s hard when it seems like nobody understands, so I thought perhaps that I could prove that I probably really do…?

I hope that I have. Because all those feelings that were described is pretty much part and parcel of all chronic illness, and most feel them — but, of course, we’re not allowed to talk about them outwardly, so there’s nowhere to turn and nowhere to go to discuss it, those feelings, or how very VERY white-hot terrified and desperate you really feel inside.

Keep talking, keep reaching out — to doctors, to people here, online, to any people in your life who could/might/do support you. It’s not anywhere near easy to even begin to cope with the first part of dealing with lifelong Chronic Illness/Pain/Conditions.

The first step is a little like AA — you have to accept they are part of your life but you will love yourself anyway. Remember that you’re a person WITH a conditions/illness, and NOT an illness with a body/host.

Remember that you’re worthy, you matter, you’re a person, and YOU ARE YOU — and having an illness/condition doesn’t stop that from being true.

The next is to put into your mind to not being a “Victim” of any kind to your condition/illness — not having access to treatment or a clinician/GP is going to make you possibly also feel like a victim of circumstance, of the Post Code Lottery; but it still doesn’t mean you have to FEEL like one… It sounds so trite, I really do know. But you *should / hopefully might, eventually* feel entitled and rightful indignation that no one is helping you, that no one is taking you as a person that matters and deserves to have their space and be heard, and helped.

I don’t believe anyone should go through these things alone. It’s not right, and everyone has a right to be heard and helped, in whatever way possible. I hope you feel I have heard you?

Keep being strong, keep having courage, and keep up the [terrifying, seemingly impossible] good fight xx xx xx.

💖💖💖💜💜💜


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