C.A.L.L. FOR Wales
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North Wales | 11°C
I’ve just seen the date at the top of this iPad a moment ago…
It’s 7/7 — the day things changed forever…
7th July 2015
14 Years Ago Today
And it will never “Just”… “Grow Old”… We were there. In the middle of it. SN was outside a few hundred yards away from That Freaking, Frikkin Bus… Maybe not half an hour after it blew itself up…
We watched it all as it unfurled itself on the news. Heard those Ambulances’ sirens dull on the TV as they raced further away from the scene… Only to get louder and louder outside my window on the way to the Trauma Centre in the Royal Free, Hampstead. It made it a chilling reality…
The worst thing, however, was the fact that SN was inadvertently out there when the Tavistock Square Busexploded. The bomb had not long gone off, maybe only an hour or even half an hour. Entirely naïve of the situation, she had gone to meet her parents coming in to Euston from North Wales to see her graduation recital at Arts Ed.
If she had gone sooner, as she says, she decided to go take the mail upstairs to our apartment (Oakley Square, Mornington Crescent, Camden) instead of leaving right away, she might have been there when the bomb exploded… Heard It… Saw It… Hopefully nowhere near the circumference of the shrapnel trajectory…
As she also pointed out, we would walk past there to get to town. If she hadn’t been having her Recital that day, who knows where we would have been. There’s a place close by we liked to have breakfast in, I’m certain. We could have been going there, done that… It all doesn’t bear to be thinking about… 😖😢😞
But SN was in Euston a little later, thank goodness… She says there was an air of something … wrong… there… But no clear indications — perhaps a fire down in the Tube line? That it wasn’t until I called her, she didn’t know anything had happened.
For me, it had been a very long nightmareto get hold of her. Phone networks were already being jammed (the cell phone networks in 2005 were still really in their infancy stage compared to now…), and I could not get hold of her. For ages… Minutes and Minutes… Which is forever when your best friend might be in serious danger…
I had known nothing was wrong until C (my sister) emailed me to ask how I was, if I was OK. I obviously told her I was fine and at home. And asked why she was asking. She told me to turn on the TV. Any. Channel.
With that, my blood went cold and turned on the BBC… The first thing I saw was the fully exploded, destroyed and ripped out backend of the No. 30 Bus in… Tavistock Square… Which was… Right. By. Euston. Station…. 😱😟😟😟😣😣😣😣😣😣🤯🤯🤯🤯🤯🤯😖😖😖😖😖😖
So, I flipped and started ringing her frantically, until I finally got an answer. And I nearly wept outright with overwhelming internal relief.
She came home — walking bravely despite all the horrors going on…
Her parents had been Evacuated back home from Watford Junction Station anyhow, and all Central London was in a serious Lockdown.
From then on… Well… It just go worse and worse. We were glued to the TV to get as much information as possible about it all. It. Was . Fucking. Terrifying.
SN got quite serious PTSD from it… After all, she was there. That is one seriously Majorheadfuck…
She seems to know how to deal with it well… She has a really, really powerful internal Strength of Will, and bears such a burden with dignity and Strength, despite the Fear and heartbreaking anxiety anything that triggers or reminds her of it… She still carries it with great Power and Grace, in my eyes.
Not many people understand this. Her parents were kinda there — after all, they themselves were evacuated from London on the train, not being able to get hold of SN and know if she was OK. Not sure if they ever did grasp the reality she was near enough to have been kinda involved in it, too, if she’d have gone any earlier, though….
So, every 7/7 we talk about it. Discuss it. Get our Trauma and Anxieties out to someone who can commiserate and empathise truly. We went through that together. We still go through it together.
The date brings things to the fore too easily, the memories still vivid despite pretty much an entire Decade-and-a-Half having come and gone hence…
It. Just. Hurts…
| 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 Me… Destructive, 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
A Message For Anyone Who Is Suffering With Chronic Illness/Pain/Conditions… Especially Those Facing This (whether literally or emotionally) Alone…
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… 🥺😟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.
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…
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.
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.
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.
Does the grief ever really go away? The one you feel from all that you’ve lost?
The shame, the humiliation, the degradation, the demeaning secret truth of the life you have to… exist with… it just never seems to become “OK”.
To lose so many of the general functions you were used to your body doing for you, that you took for granted… does that ever really become something that’s really “OK”? You lose so much… I’ve lost so much… It’s not OK. Not even close.
It’s hard to know that the people around you just do not understand what you have to deal with… whilst at the same time so relived about that too. But then… they do and say things without understanding the impact on you, or the extent you have to push yourself to meet their expectations, or their level. What I mean is that they just think “popping out” is just something you can just do. Just like that. Or walking just anywhere they want is just fine, etc. When you live with a chronic illness, when you’re living in a wheelchair, when you sometimes can barely breathe because it hurts so much or your just too exhausted to manage it, it’s not that simple. Not even close. Getting out of bed is nothing to them, but to you, that’s every spoon you have and then some. Then they expect you to do even more.
I run on zero spoons. I do as much as I can on it, from going out for the day, to trying to do something normal like reading or reading, to attempting to make some food (which also requires at least one other person, too), but when they’re then a little tired from it they want “a little lie down”… as if they’ve done so much more than you have, expecting you then to do things for them… that really grates on me, and they do it because, quite frankly, you’re so damn used to it and they’re not. You live with the mind-killing exhaustion of chronic fatigue, so you therefore must be more used to it and are OK… Right? I’m not sure what this logic is, but it’s rather mean – and frankly, either ignorant or naive.
It’s not nice when just getting out of bed was utterly exhausting, then spending your day in your wheels, and your (frankly) grown-up Huggies, having no say over when you go or how, and just about able to stop yourself crying from pain or exhaustion or paraesthesia symptoms, or all the above.
It’s horrid when everybody leaves you behind for their “normal” lives, and look on with distain when you turn up in their lives… You’re supposed to deal with it, but Heaven forbid they do for a day or a few hours. What’s worse, is they make their jusgments without knowing the true extent or details… and they really don’t want to, either. What’s worse than the reality of seeing you is acknowledging the true reality of what you have to deal with. And they don’t want to know that… you know, in case it upsets them. Poor, poor them.
It’s hard so see everyone else in your life get on with being “OK” and you struggle to simply go to the bathroom. As your very basic functions, ones that you don’t even remember living without before, fail terribly and leave you stranded back in those days once again… How can you even look them in the eye with your head held high? Siting in grown-up Huggies pull-ups, or giant-tabbed Pampers, knowing they might not even do the job properly, how in hell are you supposed to have any self-esteem left?
I can barely feel anything from the chest, the lower rib cage, down (including not being able to feel the diaphragm), and thus I’ve been left with less and less control over things – first the legs, then a little bit of the pelvic floor, to having no concept of most of my abdomen, or lower abdomen, and my pelvic floor is barely even a memory anymore. Today, a really bad thing happened in this area and it was extraordinarily humiliating, and overwhelmingly shocking – to be faced with the reality of how far my body has slipped from my own grasp has left me reeling and unable to comprehend where I am (figuratively) in my own self, my life, my entire existence.
I’m hurting inside, but again, there’s no one there who really understands what’s going on… and once again I am alone. How do you even explain? It’s horrifying to you, so what does it evoke in other people? If you’re ashamed, what will they think? You can only imagine they would be horrified. Like you are.
I do not know how to deal with feelings. I don’t like feelings. They’re messy, unquantifiable, horrible, uncomfortable, and usually I can’t even cry (which I don’t like anyway because it makes your face soggy). Right now, I have a lot, and I don’t know what to do with them, how to process them, how to manage to get the hell rid of them, to be honest. I think there’s guilt, maybe shame… There’s definitely sad. Loss. Grief. Reeling and shock. But they all get so very overwhelming, and then I get very confused and upset.
In the last few days, maybe a week or so now (I lose track of the days), my hands have started playing up, and started not working properly. The paraesthesia in them is astounding and so painful. I can’t move them they’re so numb (imagine someone tied your wrists so tight it cut off the blood flow and you have them tied up like that all day). They can spasm so badly they curl up on themselves so tightly, they leave deep nail marks in your palms. They can never open out properly, they’re in a permentant “claw”. It prevents me from being able to do even the simplest thing, and also can prevent me from playing games, or even following a conversation because the sensation (or pain) is so bad there is no more room in my brain for anything else. It makes writing [typing] so hard sometimes that if I manage at all, every word has a spelling mistake at best and is gibberish at worst. It’s emotionally painful to endure, to be honest.
I feel like I’ve been left to rot by the system. Everyone has been less than useless. I’ve just been left to my own devices, and I’m floundering in trying to help myself. The diagnosticians throw me to general services (pain clinic, psych, physio, etc) and discharge me to make their targets look good. Those other services have nothing to offer except inefficiency and long waiting lists you stay on just to see how inefficinent they are. It’s certainly not to be helped by them.
I’m lost, broken and alone, still trying to find something of myself in all this, wondering if I can ever rise to get the better of it, so I am what is driving me, not this.
So I went for another assessment. You know, for more labelling. As if I didn’t have enough already. They love them in Psycho-babble land. The last big one of consensus was Depressive. Others were hypochondriac, problematic, troublemaker, unstable, unhelpable. I loved that last one – it drove me to be whatever I wanted to be. So I guess I then wanted to see if I was going to go and qualify for another one. Maybe one that would have some answers.
I’m not sure why I went. I hate labelling – they’re restricting and demoralising. On the other hand, they come with help and some insight… if they’re correct. The if is a big if for me. I can’t communicate properly with these people, and am never able to say what I really think and feel about things. I drivel on forever and never able to make my point. I can write my thoughts perfectly coherently (not on here – this is the “lab” where the ideas are cooked up… for want of a better metaphore…!), but I certainly can’t say them. So no one ever really gets the bigger picture.
I did it a couple of weeks ago or so. I was terrified. Extremely anxious. In a place, a clinic, that I hated and unnerved me. And then there was the stranger sitting in front of me… asking me vague questions and wanting to know all about me. Again. This must have been the gazillionth time I had been in this situation – one that I really hate.
So I do what I usually do – talk non-stop drivel at them until they leave. I can’t make my point, or answer any questions coherently. There were no straightforward questions – they were all open-ended, barely actual questions even… Those “tell me about…” type ones. So I just babble on about stuff without listening to myself or thinking about what I am saying.
I was frozen and sat like a stone, unable to think clearly, or speak coherently. I babbled and babbled, speaking about whatever was in my head, relevant or otherwise… and probably mostly otherwise. I was mainly panicking inside. I just know as I’m speaking, somewhere in my subconscious, that I am not saying anything that I should be. Yet I still can’t actually say it. I wish they would just email me instead.
I’m OK with straightforward questions, where there’s a clear and precise question and a clear and precise answer. I don’t do so well on the others… those vague ones that are open-ended and aren’t really clear in what they’re asking. That’s what they give me, though. The vague ones. So I never answer their questions properly, and usually land myself in the wrong place with the wrong “diagnosis”… All because I could never tell anyone what I really wanted to say, because they never ask the right questions in the right way.
Ever since that meeting, through that evening, that night, and ever since, this has been spinning in my head. All the things I wanted to say, all the things I should have said – they’re all floating around in there, screaming to be said. Only they will never be said because I don’t know how to get my words from my head and out of my mouth properly. They haven’t left me alone even for a minute and hound me.
Now I’m going back for another appointment. That letter finally came, and gave me less than a week’s notice. I got it on the Wednesday, and the appointment was the next Monday. By a very kismety stroke of luck, my best friend actually had already randomly booked that day off, so I don’t have to go alone. I can’t go back there alone… I hate the clinic I keep having to go to – they’re all appear to be idiots with the combined IQ of a kamikaze gnat, and always answer my questions with “I don’t know“… very helpful.
The guys in this place just can’t seem to do anything right, and, at best, feign strained politeness. They’ve screwed up everything that both I and my GP have asked of them, and cancelled my one and only appointment with a psychiatrist for assessment for CBT 20 minutes after it was supposed to start, claiming an “emergency” came up. They then seemed to cancel my CBT request and never made a second appointment. I had to ask my GP to send them another one. They also sent me to an “emergency” appointment instead, where I saw an idiot junior GP on a psych rotation who tried to goad me into admitting to things that fit me into a certain “Personality Disorder” box she was trying to stuff me into, because she had just been working somewhere specialising in it. When I looked up this disorder (which I forget now) it was almost an exact list of everything I wasn’t – apart from the “traumatic childhood” bit, which everybody seems to obsess about. My problems started way before then. I was already not OK by age two… shame they didn’t think about that too.
And so… I’m scared he’s going to say yes. I’m also scared I’m going to say no. One way I have an answer I don’t really want. The other way means I still have no answers and I’m still lost. OK, I do not need another one of those labels – all they do is generally cause trouble. On the other hand, answers are always good. You can deal with them, and other people can help you deal with them. Maybe you no longer have to struggle so much with it anymore. In theory anyway… There’s no real guarantee anyone will actually help you at all. Given I’ve been waiting 9 months for a follow-up appointment with the pain clinic, and 8 months and counting for a CBT assessment, I should be rather more realistic and know that help isn’t always there for you when you need it. Or maybe it’s a diagnostic thing… given I’m still waiting for diagnosis for anything.
I guess I just have to wait to find out…