Category Archives: Eating Disorders

The Shower Trauma

 | 14°C |

Eating Genius (GF) Blueberry muffin, pissed at the phones my poor best friend S currently has to put up with, wondering how long it’s going to take me to lose my rag with this UMIDIGI F1 that’s been somehow compromised… 

I had my shower. My body and mind feels better. It was difficult — I ended up in a rather bad sugar crash, and had to eat Toast, DF Cookies & Jacob’s Crackers. In the shower. It was Not Nice… 😖😞

When I got upstairs, I ended up fretting and being broken by the thought – the knowledge – that this didn’t have to have been like this for so goddamned long.

Afterwards, I also had to endure the inevitable subsequent Adrenaline push, making me quiver and shake as badly as the Sugar Low, Vexed & Anxiously Disgruntled by the time I got out and went upstairs.

Did you know that when I told Sophie that the Twat Fuckfaceheads that came to see me (Johanna & Donna – rat bastard C***s) had told me that if I decided I wanted to go on the list for a place of my own, that I could not have this place done up to be functional, she was astounded and told me it was UTTER BOLLOCKS…!! UTTER FUCKING BOLLOCKS!!

I hadn’t HAD to suffer! I hadn’t HAD to go through such Agony any Trauma as I had… and still had to.That this could all have been Avoided by someone who cared about taking pity on me and allowing me to have the shower room that I desperately needed so frikkin badly

I DIDN’T HAVE TO GO THROUGH ANY OF THIS AT ALL!!!!!!!

And what could I have DONE with access like this to a shower that would have cut my pain in HALF??!! The Escalation could have been STOPPED. Such ongoing TRAUMA & AGONY & HATE AVOIDED?????

HAVE I NOT BEEN THROUGH ENOUGH????? DID I REALLY NEED TO GO THROUGH EVEN MORE?????

NO MERCY!!!

NONE… AT. ALL.

I cried. Just a little bit. But. I. Cried. I never, ever cry (unless it’s Meltdown-Related). I do not cry when I am sad. This, though… This so Disgusted Me, Moved Me, Disturbed Me… I didn’t know what else my body could possibly do, when it did this…

… Inside, I am just Traumatised All Over Again. I honestly have another wave of PTSD about all of this, on top of, and Separate, from the rest. It makes me feel… Terror. Horror. Makes me want to physically vomit. The Fear. The Horror. The Sickening Suffering… 

I am DevastatedWrecked. Frustrated. Horrified. Traumatised. Destroyed. I could not describe it any more, or any better. These things are not easy to process in any way, shape, or form. 

Does anyone else feel sick now, too…?? 

Nearly Two Years – Two Frikkin Goddamned Years – Has Been Lost. I was 36 when the Occocuses Started. And I’m 38 1/2 when the Shower is Fitted. 

#dignity #agony #cellphones #crushingfeels #techspecs #disability #overwhelmed #drowningfeels #alexithymia #devestated #drained #dragondisappointment #food #occutherpist #miserable #phonetech #scared #tech #asd #headache #anxiety #exhaustion #anguish #paraesthesia #ptsd #eating #accessiblebathroom #confused #aggitated #ora #stressed #fatigue #despairing #hair #fibromyalgia #shower #angry #grief #painsomnia #phones #distressed #nhsdirect #showerchair #helplessnessPowered by Journey Diary.

Advertisements

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.

img_0893

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.

*

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.

💖💖💖💜💜💜


The Biggest Reality Check of All…

Someone I haven’t spoken to in a while over text sent me a quite innocent message yesterday, with Are you still alivewritten on it. A running joke when catching up after a while. It meant nothing, had no other significant meaning. They didn’t know it was not so this time.

This time, it wasn’t so funny. This time I really meant it when I wrote back, Yeh, just about

It was a literal answer… and one I was decidedly uncomfortable with. Especially when I didn’t tell them that, or why.

How do you answer someone else… Yourself… When the rest of the answer to that question is I could have died…?

I was desperately ill and point-blank refusing treatment and, well, in all honesty and reality, getting close to dying. Literally screaming myself hoarse in agony, until I was lost consciousness from the pain, for hours every day for a month, not realising my body was being attacked by a silent killer, tearing up my insides and leaving me barely conscious on a daily basis. But I still refused any help or medial treatment. The scars, the terror, the shame of the way I had been treated by medical “professionals” in the past meant I was too traumatised, especially in my current state, to go anywhere near them.

What an utterly terrifying thought… and nauseating right now, with 30/20 hindsight. I did it to myself. Unwittingly. But I still did it. And I quite possibly came a bit to close to maybe not making it. I became unreasonable, delirious, the agony too indescribable apart from being able to say it felt like actual torture.

Eventually, it seemed something in my brain snapped and I somehow, for some reason, decided to finally allow my parents to seek emergency treatment for me. I must have finally realised somewhere inside my subconscious my money was up and it was now or never, the last chance saloon. I don’t know because I don’t remember anything of that day except coming to around 5:30pm in a strange place, in a strange bed, somewhere that I only recognised as “a hospital”. Which or where I hadn’t a clue. My mother had to fill me in on the rest.

I was told I was dragged, barely conscious, downstairs and to the car, then taken to the out-of-hours GP service located in the main general hospital on Saturday 27th January.  The time on my discharge note shows it as being logged in to see them just after 12pm. They rushed me in to the Surgical Assessment Unit and ran tests, put me in x-ray and gave me a CT scan. They pushed fluids for severe dehydration and vast amounts of strong painkillers to stop me screaming. I was apparently there for five hours before I became coherent enough to come around, the pain subsided much, but still quite agonising – although nowhere near what it had been – and I had to be told what happened to me and why there were lines in my arm and why I was in a hospital. And especially the question, Which hospital?

After negative scans and intensive blood tests, it turned out I had blood poisoning and a “horrendous” [their words] UTI (urine infection). Specifically, I had contracted Staphylococcus and Streptococcus. And I’d probably had it for weeks, if not months. The entire time I’d been feeling very ill all the way to the point where I’d spent an entire month screaming myself into unconsciousness from the mind-exploding incomprehensible agony I was enduring.

I ended up being hooked up to some kick-ass antibiotics for 3 weeks before I was getting better. But us took 6 weeks before I was given the all-clear to finally go home with clean and clear blood with zero infections left in it. Even when the ococcus infections had been dimming down, I still got 2 other infections on top of it, and one of them remains an actual mystery to this day, but it was so bad I got a temperature higher than I’d even had with the blood infection – hitting 40.7˚C at its worst. They couldn’t find the actual cause (and they looked a lot) so they dumped me right back on the antibiotics (I’d just got rid of that damn cannula the day before, too!) for another week and a half or so.

So, I spent 6 weeks in hospital trying to recover from my stupidity. For the first couple of weeks I felt it acutely that it was a fight, a real battle, to get on top of this thing (or things) and get rid of it. Once I started to get the upper hand, it was a slow but assured ascent to the top of the mountain of recovery. A couple of minor setbacks is expected, and otherwise it was a fairly smooth ride, if not long. Very, very long…!

I was very lucky the people there were really good and helped me with my little Aspie quirks, and were quite happy to help and make it as easy as possible for me. I also  got a lot out of it that wasn’t just my life, or recovery too. I got actually got my life back in a different sense. Whilst I was there, I got more than I ever expected, and although the way I got there was, frankly, terrifying, I clearly needed to go there to get everything I got from it.

Institutionalisation, at certain points of extreme chaos, apparently suits me. It allows me to reset, obtain new and better habits, in a safe environment of regiment and set patterns. Whilst at hospital, their set mealtimes reset my non-functional non-eating habits that for a long time had kept blowing between starvation and binge-eating. Even stopped me being completely terrified of food after realising there were bland and basic things that could be eaten without feeling overwhelmed and shaking. I learned that some medication didn’t outrightly hate me and worked well – and for the first time in 4 years I had adequate pain control that did not require a distillery. It was such a relief. Even anti-nausea medication given alleviated the horrible nausea from the pain and allowed me to eat easier. Even Oramorph for when the pain momentarily got out of control again. Not one single side effect – just what it was made for, for a change.

I actually got people to arrange referrals for me to help with the fibromyalgia, as well as a few followups regarding what I had been through. This was the first time I’d ever received adequate assistance, support and referrals for my condition… and that was probably because this was the first time that medical professionals had spent 24/7 over 6 weeks to see what I was going through. I even had a wonderful OT (Occupational Therapist) organise my being able to see my dog downstairs whilst I was stuck there, and I ended up managing it twice, which was wonderful.

By the time I left, I really was ready to go home. As in I was clear of any and all infections, everything had been put into place, and I was going home with support and medication that was going to make my life easier to live with. It may not have been the best way to end up getting help, but somehow having a serious illness had managed to bring the never-ending freefall of Hell I had been spinning in, and send me in a completely new direction.

Yes.. Life Is Strange…

 

 

 


A Little Bit Safe

I’m finally back upstairs now… It’s been about 3 months since I was up here.

After a horrific time at the Premier Inn at the Black Cat, I came home determined to overhaul my room to make it more safe, more “mine”. We changed the room around yesterday, so the TV is under the back window, with the bed almost right in front of it, so it’s like a safe hidey-hole. It was a massive effort, and somehow, I managed to build the TV stand (with Dad) myself – which amazed me.

I immediately felt safe – something I hadn’t felt here since I arrived. It’s pretty amazing really.

Today I saw a new doc at the new surgery… and shares my birth-name, which is a pretty rare one, even in Wales. Like me, she’s also sensible, efficient, and knows what she’s doing, and does it the right and proficient way. She even shut me up and cut me off when I was going on, without apology.

She had a few home truths to offer regarding my tummy problems and my eating disorder(s) – namely that erratic eating patterns, starvation, binging, eating at random, all contributes to IBS problems. Which is obviously very, very true… and she gave me some basic antispasmodic meds to try to see if it helps with any bowel spasms that might be causing a lot of the issues,  given that the spasm causes backlog in the bowel, pushing gasses and yukky stuff back up, and causes bloating and pain in and of itself.

Also, because I have such a bad reaction to gluten foods, she’s giving  me a test for Coeliac’s Disease,  to rule it in or out. Oh, well… it’ll hurt to eat a bunch of gluten for it, but it’ll definitely taste nice!

The main reason to really go, though, was for the CFS specialist team referral. Which she did for me. It’s amazing how easy it is to go to this surgery… I’m so sad I didn’t go there first…​

20141027_000017000_iOS

 

Weather’s getting worse now – another reason I hastened changing my room, because the tent now blocks cold and draughts coming up from the hallway downstairs. I’m getting constant alerts for Weather Warnings on my phone, mainly for ice, as temperatures continue to plummet. No snow yet, but I wouldn’t be surprised if we had some.

It’s of course wrecking havoc in my Fibro, and (very unfortunately) my temperament. But that has been somewhat tapered with more calm from changing the room up into a safe little den, or Hobbit-hole. I’ve managed t be inspired to do this just in time before being frozen. Now I’m safe, comfortable and toasty-warm  in my room, and I’m actually happy to stay here for the first time.

To top it off today, I also got a new tablet/hybrid: The Lenovo Yoga Book (2-in-1 2017 edition) today. I’m sick to death of Apple (don’t get me started on them now!) and saw this and thought it was pretty cool and more like what I needed, but also more…  modern, techie, innovative and imaginative.

It also runs full Windows 10, has a hybrid pen that has a stylus pen for on-screen drawing and real ink nibs available to write on supplied special paper, which gets transferred into the system via the pressure plate that sits where the physical keyboard usually is. This plate also doubles as a holo-keyboard, known as the Halo Keyboard. It appears as a hepatic holographic or Augmented Reality virtual keyboard on the aforementioned pressure plate, and takes a bit of getting used to, especially as a touch-typist.

My Dad is getting my iPad, and with it being excellent condition, he’s getting a good deal! Instead of buying a new iPad for himself, he’s got me this, which was nearly half price in the Amazon Cyber Monday sale, at £299 (supposed RRP £549). Hopefully this now means everybody wins…

lenovo-yoga-book-windows

 


Chariot Racing & Revelations

So it was much to my delight – and immense relief – that I received my new wheelchair on 30th June 2017. This beauty was here to change my life. I really hoped that it would.

I took it out that very day to Penrhyn Castle, and found my favourite place ever (not in London) was about as un-wheelchair friendly as it gets… Very unfortunate, and immediately decided they had better change that soon. The next day I went out with best friend and had a great time wheeling myself about, “walking” alongside her and pushing myself all around and up to the top end (on a hill, over slanting pavements) of the High Street to a restaurant I wanted to show her. We also had cocktails and had a really great time out together since we both left London.

Then it all crashed. My Dad got quite ill for about a week just on that third day after, and I was once again stuck in the house because my mother was also working. Whilst my father was bed-bound, I was left to attempt to manage on my own – from somehow getting up in the morning (… or afternoon), taking my meds, getting to the bathroom and feeding myself. On that first day, the only thing I could think of was to get downstairs to my chair, whereby I would (effectively) have full mobility and at least have a fighting chance to look after myself.

For two days I struggled to do this. Thankfully this was the time my DVD came to cheer me up: Smile and Sway. It was a fun sitting-down dance DVD I could do in my wheelchair, covering moves from ballroom dancing classics, to ballet-arms, to Big Band swing and Jive. It was amazing fun to be doing something like that again – akin to a short rehearsal – and it felt great to be doing something so familiar once again. It made me feel more “me”… even if I was rather rubbish at it!

I was relieved from this strain a little on the third day as my mother was off work for the next few days. The first day she was off was terrible. The second day was much better. We (my mother and I) took Doggy for a walk to Bangor, specifically Porth Penrhyn, where there’s a cycle route that’s been beautifully remade and tarred, and perfect for walking a dog with a chair.

It took a little bit of cajoling but the dog eventually made it about halfway down the path. It was pretty hot (maybe 21ºC, perhaps a little higher), but thick trees make a great canopy over it, keeping it quite cool. When he finally started getting into it, Doggy started pulling my chair, and with my new lead kit (it was hands-free and tied around my chest, “Empire-waist” style), he started really running fast and far with me, which was utterly amazing.

On the way back to the car, Soul took off like a rocket. Exhilarating and so much fun, we went belting down the path, having a great time. My Dad has clocked him at 12mph when Souly’s running alongside him on his bike. I could easily believe he was getting there quite easily! We got back to the car so very quickly, I was taken aback when it was suddenly there.. and Soul was so very pleased to be back in the car so he could sleep on the way home.

Thanks to Souly’s speed, we also arrived home in time to see the tennis, which also pleased me.

 

IMG_3633

 

This slideshow requires JavaScript.

 

 

Pondering Internal Truths

After such a day, that night (well, early morning, I suppose), I read the rest of a book I had been reading: Unbearable Lightness, by Portia de Rossi. That book greatly affected me: It focuses on her eating disorder(s), then also on her recovery. Despite being probably around double my normal weight now (I refused to look when I was weighed, but at this point presumed it to be 13-14 stone – hopefully not more, that’s more than bad enough!), I still struggle with my eating disorder. It’s not about being painfully thin or vomiting food (been there, done that, still want to do the later…), it’s about disordered thinking about eating and foods. And I definitely have that. Always. But it’s not just about that specifically… it can also be about any illness and any recovery, or learning to live with it… Or without it.

She talks about her illness as a… relationship, a “boyfriend” of sorts. I thought about that… thought about how dysfunctional I felt in being my ill… Then (yes, it’s weird!) the thought occurred to me: Can you “cheat” on an illness? [Stay with me here…!]

I always feel horrid for wanting to… Write. Read. Play my games. Look at my computer magazines. Watch a movie. Well… What if I’ve behaviourally (though being actually unable to do these things) become indoctrinated, or “modified” to be… averse to them? That if I try to switch off and enjoy them, that I am being actually disloyal to “being ill”? That I’m cheating at being ill? Disordered thinking: Well, I know that is nothing new to me. I already have the brain of an anorexic, which is distorted thinking regarding something as natural as feeding yourself, so why not this? “Emotionally”, it makes more sense to me than anything else.

Of course, you can’t be disloyal or cheat on an illness, unless you’re genuinely faking it (choose your own crazy reason for it here!). But I guess you can feel it. Indulging in illness is a bad thing… but apparently my brain has yet to figure that out? If I don’t fixate and indulge on my illness and being inside that illness… then… what?

This is the Aspie Girl bit… and where the knowledge of this and the diagnosis comes in handy. Knowing as an ASD person, my brain is designed to fixate on things… a lot. It’s supposed to fixate on games, theatre or TV shows, movies, writing, books… Not on being ill. However, I have regardless been nothing but ill very ill – for quite a long time (four years is a pretty decent amount of time, really). Somehow, it came to the conclusion there was nothing else in the world – and although, yes, my condition continued to get worse, I was well aware that there were more interesting things to be obsessed about. Yet, there I was, in the middle of my fixation on, well, being ill. My IQ was crying.

Reading that book was like reading my own journal: The way she thought, her logic, her distorted thinking, the way the illness played with her mind, her logic… It not only made sense to me, it mirrored identically my own, all in exactly the same way, and I realised I knew what she was going to say before I even read it. Never before had I come across someone (despite it being via a book) that knew exactly what it was to be me, who thought like me, who knew exactly what it was to be like that. Thus, when I read her Epilogue about recovery, that also made the same impact.

The question of Can you cheat on an illness turned up on the back of what she wrote. It made me think of the fixations I have and I figured this was probably one of them: Somehow, being incapacitated had become a new one… And the thought did not make me very happy at all, with the question then becoming… How on earth do I fix it – Stat?

I came to think it had a lot to do with identity. I had been ill (as in unable to actually function or do anything) for so long, it had become my identity, and I couldn’t see past it to something else, even something I loved. It made it impossible to disconnect with “reality” and dive headlong into a fantasyland… In a world of pure imagination.

The only answer was to find a way to break it and get back to what I loved best – stories. In any format, whether in books, on TV or in movies, or in games. I wanted to learn again. Make room in my head for more interesting things than being ill. I was already ill… I hardly needed to work at it!

 

 


%d bloggers like this: