Tag Archives: Tramadol

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

😖😩🌧🌧🌧💧💦☔️☔️☔️💨💨💨🌬🌬🌬🌊🌊🌊🤨😒
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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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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.

*

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…

 

 

 


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