Tag Archives: pregabalin

Applying My Mind

I finally have something constructive to do for someone else – work, if you like. Unpaid and a volunteer role. One that is fun and somewhat challenging, so I’m pretty happy about it.

I have offered to help a friend – my best friend – with her (first of many, hopefully) application for a new job. Her current one is getting a bit rubbish, and she’s been doing it for over 15 years, so it’s time for a change. An inter-departmental change, but a change nonetheless. Where she will be appreciated a lot more than she is in the office and department of the organisation she works in right now.

Editing, ghostwriting, and having to stuff a ridiculous amount of key details into 250 words or less for each of the five answers required – actually my idea of fun. A challenge that involves editing and writing – very fun! I’ve taken her statements, the details of the examples she has given for each one – lengthy ones stuffed with every detail I could get out of her – and now I need to get all that information into the condensed version to go into the application form. A challenge for the kid who could never even stick to the 1000-word limit on essays in school, whilst everyone else seem to struggle to get over 50…

Like a lot of people with dyslexia (undiagnosed, but obvious – back in the 80s, few kids were ever even tested, let alone diagnosed with such a thing) she finds it difficult to write these things. She can speak brilliantly and can knock-em dead in an interview, but getting those interviews can be difficult. She knows what she wants to say, but can’t write it, which is where I step in.

I hope I will be able to do my friend justice – after all, she deserves the best chance to shine in a pile of identikit printouts on someone’s desk. She’s good at her job and deserves to be appreciated for it somewhere where people have a combined IQ of above double-figures. The problem is my medication for the… whatever. Pregabalin has helped in a lot of ways by muting some of the pain, but it has also affected my brain, my mind, my focus, my concentration, my perception, my memory – all the things I hold… held?… most dear. I have little else except my mind, and it has taken some of that away from me. On the other hand, the pain screaming in my brain takes away all of it, so you have to prioritise these things. But the fibre-fog, the Pregabalin haze, or whatever this problem with my mind is, is seriously detrimental to me and is preventing me from managing basic things – the one thing I don’t want to do is have it become detrimental to the work I’m about to do.

I’m hoping getting my concerns out of my system now, a little more coffee, some food, a little pep talk for a confidence boost (severely lagging), will allow me to concentrate better and get these answers written consciously and as required. My mind keeps fritting away, my focus waning constantly. Time, even days, seem to disappear. It’s a norm I refuse to accept, but doesn’t make it any less true.

Now the time escapes me again; what seems like a few minutes has turned out to be several hours. I don’t know where they go or why they seem to slip through my consciousness like sand through fingers, leaving no trace, feeling like nothing, disappearing quickly without a trace. I forget my meds, to eat, and in this case, to work.

Now I’m going to try really hard and concentrate, and get those statements edited into their 250-word maximum. Hopefully, I’ll end up getting it right. Deadline is in two days, and I need to get it done today.

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The Waiting Game

Ignored. Let down. Lost somewhere in a system that doesn’t even seem to exist. It’s not the best place to be, or a good position to be in. The NHS is now a big corporate-esque shell of its old self, doing nothing yet eating money like it’s biscuits, leaving people like me awash on the side with nowhere to go and nowhere to turn.

Clearly NEL NHS Foundation Trust has no idea what it’s doing with any money it has. Its services don’t seem to exist. After a year of trying to get help, get better, get heard, get… something.

I love the fact the current government cut spending on NHS and local council services, yet demand the sick and the disabled “get up and get a job”, lest they get kicked off their ESA and PIP/DLA. Apparently we’re all faking, all lazy-arsed bastards, and don’t need the NHS and local council services – what we need is to get a job. Oh, but they don’t exist too much either, because they’ve cut a whole bunch of spending and funding. Clever.

I have a good GP, but thanks to the whole NHS England Foundation Trust reshuffle, services have gone from “barely OK” to horrific. Non-existant: Ironically, the reason I was brought in to help at my last job ended up being the reason I could no longer work there, or anywhere else. Everything he has become absolutely appalling, and most certainly under NEL (North East London).

I did my best to avert dealing with the healthcare system. Even after I was diagnosed with pneumonia (Halloween 2013… and I used to like Halloween – Samhain – before…) kept getting worse, kept getting sicker, was in more pain. Eventually, when I had to give up my job, I went to ask for help.

By March 2014, I could no longer deal with the crippling pain I was enduring and it was then I to give up work. My GP referred me to the local pain clinic, and I also asked for therapy – specifically CBT – to help deal with it. It’s February 2015 now. I am still waiting for the help requested nearly a year ago. And there is no end to the waiting in sight.

 

A Therapeutic Joke…

When I asked for CBT back in March 2013, I was first sent to the Access Team, a mental health community care program for the area. A pointless mental heath community care program – one clearly without staff, resources, funding, or common sense. Their initial response to my request for CBT was to send a social worker… and I’m still not sure why. I talked to her, since she said she was there to assess me. She took everything down, listened, and was the person who realised that all my issues sounded exactly like Asperger Syndrome, and suggested I also request an assessment as well as the CBT. She said that my case would be given to the team, I would be assigned a caseworker, they would send a home assessor, and they would get back to me regarding the next steps.

Only… nothing happened. I got no more contact from them. I called. Then called again. And again. I had to speak to different people each time – only on three occasions did I speak with the same person. Each time I called, reception “knew nothing” and and would just suggest “someone would get back to me”. Sometimes they did, sometimes they didn’t. What came out of those calls was nothing. They finally sent an “assessor” but it turned out they “couldn’t” assess me for help in the home until/ unless I got DLA/PIP – the assessor just sat with me whilst I called the DWP for a PIP pack. So very helpful.

After more and more phone calls to the Access Team, an appointment for a psych assessment finally turned up for June, with a psychiatrist/clinical psychologist at the Ferguson Centre, Walthamstow. By this time I found walking so difficult I wasn’t able to use the bus and I had to pay for a cab and take a friend to help. I went early to the appointment, 20 minutes early, just to make sure I wouldn’t miss it. But it seemed like I was going to miss it anyway. After waiting 20 minutes over my appointment time, someone finally comes to me. Not to get me: To tell me my appointment has been cancelled. Just like that. After waiting months. After being desperate for long enough already.

I managed to get out of the place and broke down outside. My friend went to get someone to come and speak to me. The person was an idiot, faffed and flustered at my inconsolability and desperate crying, and eventually she disappeared and came back a few moments later to offer an “emergency appointment”. What a joke that turned out to be.

I had to go to a completely different place. My friend took me in a wheelchair on the bus because I couldn’t afford a taxi fare there. It was a nightmare journey, made all the worse by the complete second farce to emerge regarding this attempt at a psych assessment. After all that screwing around to get it, they didn’t even know I was coming. Then they decided I was in the wrong building and sent me to the right one… which couldn’t have been less wheelchair-friendly if it tried. Eventually I saw someone… and my original professional psych assessment turned into a training exercise for an idiotic trainee-GP who clearly knew nothing, not even the art of listening.

She listened to nothing I said, except one thing that she kept fixated on, which was trying to make me admit to  being “impulsive“. Ignored the depression, the Aspergers theory, and just about everything else. Then, because she had just come off a training exercise of a few weeks with people suffering from personality disorders, she the decided that’s what I had: specifically, “Emotional Explosive Personality Disorder (aka: Intermittent Explosive Disorder). Told me I would be “seen by a panel of professionals” (the thought of which scared the bejeezus out of me) before deciding what would be done, then sent me on my way. I was floored, bewildered, and later furious. A few weeks later, I then  got a referral letter and a leaflet for a scheme called Impart  – the stupid “recommendation” of the idiot trainee GP (as in not professional psychologist/psychiatrist) had been taken verbatim and I had been unquestioningly been given a referral for treatment for Personality Disorder.

I broke down and cried again. This time, calling the Crisis Team in floods of tears because it was a Saturday and I couldn’t call anyone else. Then they told me something interesting no one else had bothered to tell me before: The NEL now had a new and shiny Autism Unit. Specialising in ASD diagnoses. That first thing Monday I should call and demand to be referred to them. So I did. I also demanded to know what had become of my original request for CBT. Eventually, after the usual “someone will call you back” excuse, someone did call me back – the secretary for the original psychologist/psychiatrist I was supposed to see (I still don’t know which she was, they both have “Dr” in front of their names, but for very different reasons). She then explained that the team had decided to not pursue it because I had been referred to the Impart Team. I explained about the ASD Unit and my request for a referral, so she suggested seeing the consultant from there first before doing anything else. Another brick wall. This is all whilst my mental and physiological health are rapidly going downhill. I didn’t know how much more of this I could take.

A Useful Diagnosis

The first bit of sense I saw the ASD assessor. A real breath of fresh air, which was unsurprising given he didn’t actually work there. He was nice, listened. Seven months after I first requested help, at the very end of October, exactly one year after all this first started, I saw someone who actually helped. He spoke to me. He later called my mother and spoke to her. Then about a week later I had it confirmed: I had Asperger Syndrome. The reason I had never been properly helped before was that people were treating the symptoms and not the cause: A strange form of autism that had made my life a living hell because I had never understood it. Or myself.

It was like a weight had been lifted from me, and my opinion of myself immediately grew a little. I wasn’t an unhelpable lost cause and prolific depressive with “emotional explosive personality disorder” (and I read up on that… I definitely didn’t have that!)… I was just misdiagnosed, misunderstood, and not properly treated. Even understanding it all made a big difference.

There was a side-effect to that rise in self-respect though. The fact I could no longer manage for myself made a huge dent in that newfound pride. It finally had somewhere to hit, whereas before there wasn’t. Whatever my physiological complications were, it was constantly getting worse, and with it my despair and frustration at being “pointless”. With the rise of my self-worth, was also the fact it could be undermined by my no longer being able to bring in money to look after myself. That I could no longer look after myself. That I couldn’t walk, or undress, or lift my arms, hold some things, open things, and any number of other things that we all take for granted until we can no longer do them.

Open Wound. Salt. Rub.

Thanks to the doctor I saw to get my ASD diagnosis, I finally got my psych assessment for this past Monday, February 2015. Eight months after the last one was cancelled. It was a nightmare day. The guy didn’t even see me till 15 minutes after my appointment start because the receptionist didn’t tell him I was there, and I had got there half an hour early by cab, just about managed to walk with 2 sticks to the door, then sat in a horrible chair (all furniture now hurts to sit on, and I either sit on the floor on on beanbags at home) to wait for 45 mins, walked with my sticks all the way to his room, where I then spent another hour sitting in a horrible chair to talk to him.

He was… okay. Mainly a wet blanket. He took down details, spoke to me (kind of). Somehow had no idea I’d spent my life in and out of therapy. Made it clear that this was just an assessment, after which I would be put on a waiting list. A twelve month waiting list. After waiting eight months to just get another assessment appointment, I nearly had a meltdown right there and then. I probably should have, so he could see the extent of the internal pain and turmoil I was in. Then another bombshell: this was not long-term support like I wanted and needed. It was a 20-session max offer. At one a week (which I could ill-afford anyway), that was a maximum of 5 months of help. I don’t think I’d spent less than a year with any of my therapists before. I needed long-term, ongoing care – and after all this waiting, all the fighting, all the begging… this was all they were even offering?

I’d be better off getting a PS4 or upgrading my PC and spending that cab fare on that instead (it would cost at least £200 in cab fares to go there for 20 sessions) – tech and games might be better therapy than a measly 5 months of CBT. I am going to be in this situation for longer than 5 months of therapy will cover– and I do not have 12 months to wait for it to turn up in the first place. By the time I would get therapy I would be completely ga-ga… I’m nearly there now. I am already talking myself out of self-harm and worse on a daily basis, and I honestly do not know how long I can keep that up for, given that the option of not being in pain anymore sometimes outweighs common sense when I feel in agony and am desperate for it to all end.

 

If they could take the pain away, or relieve it a little more, it would be a little more bearable. But that isn’t the case either. In fact, I am probably not even as far into the system with that as I am with the mental health one… and I have never experienced that before.

 

Putting the “Pain” into Pain Clinic…

It was also in March 2014 that I asked for help with my growing chronic pain. Again it was June when I had my appointment for the Pain Clinic, at Whipps Cross Hospital. I thought I might actually at least get somewhere with this: everyone knows that mental health appointments take some more time than others do.

Apparently, I do not have much luck with appointments. My appointment was for first thing in the morning – yet, it was still much later when I was finally seen (playing rather fast and loose with the word “seen”, too…). The consultant couldn’t get me out of there fast enough, barely speaking to me or letting me speak. In fairness, he couldn’t poke and prod me to investigate the pain – I just about managed to not scream and pass out when he very gently pushed his fingers by my lower vertebrae – and based on that fact he requested and MRI scan and that I be put on neuropathic meds for the pain, apparently of the opinion this was all from lumbar disc nerve compression. It’s quite likely there is some compression, but I’ve found no documentation that it makes every cell and joint in your body hurt so much you can’t even move.

It was left to my GP to prescribe Pregabalin. It was slowly raised until I was on the full dose, and some small amount of the pain was eased somewhat. Enough to not almost die from mind-exploding agony. Given I was unable to take opioid painkillers, it was left just to the Pregabalin to do as much as it could. I thought I could manage a few weeks, enough time to get an MRI and a followup appointment.

I was crushed when, back in the end of June [2014] – before I’d even been given my MRI appointment – I was sent my followup appointment and saw it was for March 2015. Nine months after my original appointment. I’m still six weeks away from it now. Amazingly – stupidly? – the MRI was booked for the end of July. So that meant there was eight months between the MRI scan and my being seen again. If there was going to be any issues with whatever might have been on that scan, it would then also be eight months worse than when that picture had been taken. Genius.

 

Where To Now?

Without support anywhere, help from anyone, and simply sitting and waiting (despite telephone calls, begging, crying, etc), I have really no idea when I can expect to have any such things. The Pregabalin only does so much for my pain. Trying Devil’s Claw extract has actually helped where no painkiller would dare tread (after a psychotic breakdown from taking dihydacodeine and distorted reality/mild hallucinations on doses of just 15mg of codeine), I’m never taking an odine anything again.

Even my GP is annoyed. He’s sending me somewhere else if/when the pain clinic followup gets me nowhere. Presumably the MRI didn’t show anything too radical, otherwise (hopefully, at least), they would have called. The results aren’t sent to the GPs here anymore  – they’re only sent to the requesting physician. Which, in this case, is the guy at the pain clinic.

The going theory between my GP and myself (the best and smartest GP I have ever come across, bar one, with which he’s joint-first) is that this is more than likely going to end being Fibromyalgia (read any website’s list of general symptoms for this, and it means I don’t have to re-write all my own symptoms here…) and should probably give up on the pain clinic and look to being re-referred to Rheumatology. I hate to think how long that is going to take, and am tempted to use my ability to request any hospital I want to be sent to a different one than Whipps Cross. If they even have a rheumatology clinic anymore – it seems most of their clinics have been shut down now. The next nearest one is place I am familiar with and they actually seem to run a half-decent ship there, so I’m thinking about that for when that time comes… At least one useful thing out of treating the NHS as a private business will come in useful. Although I’d rather my local hospital be properly seaworthy than have this ridiculous situation where I have to go elsewhere because their business model sucks.

Then there is also my deteriorating mental health. I have no job. No way of working. No way of earning my own money. “Benefits” are a joke – and why they are called that is beyond me. They don’t benefit me at all. Working does. But their stupid NHS system leaves me without diagnosis, let alone treatment, for my conditions, and ergo I am unable to work. I earned more in a week than I get in a month of “benefits”. I struggle to buy food. Anything else I took for granted is gone. And now I even have the added burden of having to pay for a cab every time I need to go somewhere, like the GP or one of these pointless other appointments they keep sending me to. I hate to think how much I’ve already spent on those. Some I’ve actually had to cancel because I can’t afford to go, and sometimes I don’t see the GP when I need to because I don’t have the money. Or I have to eat.

Things are so pretty bad, and sometimes I feel pretty hopeless about this whole thing. I’m now scared to see what Rock Bottom is going to be… Unless this is it. Which is not so bad. Maybe everything will come at once and I will get the help I need.

You never know.


And Then There Was Two…

It’s one thing to like having things done a certain way… it’s another when you’re almost completely reliant on someone else, or other people, to ensure that they still happen that way.

Having an illness that strips away your ability to physically do things yourself after being always (physically) independent is incredibly… awful. Being unable to dress yourself, get your own coffee, make food, shower, walk, move – at least without a lot of help and/or extreme pain – is heartbreaking, upsetting, frustrating. The pain sears my brain, and I’m left asking for help. I don’t like asking for help and I prefer to do as much of everything that I can myself. Left like this is a living nightmare… especially the part on being reliant on someone else other than myself for things. I’m a firm believer in if you want something done, do it yourself. Now I have no choice but to get someone else to do it instead.

Carry MeThe worst part of that is that I like things done in very certain ways – rules, preferences, ideals. I used to just be OK managing them myself, and therefore no one else really needed to care because I did them all myself. No one else needed to know, understand or care about it too much when I could do it myself. But that was then; this is now. Now I can’t do them. Other people have to. I’m always now reliant on another person, someone else, someone not me, doing them. It’s disheartening, disempowering, frustrating, annoying… awful.

Now they have to care, and I have to try to get them to understand that it’s important that things get done in the same way I did them, that I need to have things done “right”. The thing is, there’s also something else: when things don’t happen or get done in my specific way, in the same way, in the right way [for me], in the way I like them done, I react badly. It’s like my whole world crashes down on me. I become scared, confused, lost. Those routines are the building blocks of my existence. They keep me happy (or my version of happy), keep me grounded, keep me “OK”. (this is the bit where you don’t judge me…). I am not “a slave” to them; they are my way of making life work for me, to deal with my existence in this world – in your world… to make the “every day” stuff everyone else seems to be fine with make sense to me… otherwise I am lost and scared. I panic. My brain shuts down and it disintegrates. Then bad things happen.

But I am not crazy. Nor am I stupid, mad, demanding, manipulative, or anything else everyone has always called me in regards to this. It’s just me, and I can’t do anything about it. I’m scared… What do you do when you’re very, very scared? I didn’t say it was rational; it’s just real. My truth. My brain. My fear.

My panic. My Hell.

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It’s apparently because I have this thing called AspergerI wasn’t too happy to learn that. Ironically, even the thought of it stressed me out so much it made it worse. On the other hand, it was pretty clear when I read all about it that was what the “problem” was, though. My parents read about it and just went “… ohhhhhhh“. The lightbulb moment was clear with them. The general reaction apparently was: “Well, that explains a lot“… For me, though, it was just one more label to stick on the back of my collar, and I didn’t like that. I didn’t need a new label; I just wanted to be able to do my own thing again, my way. I had it, whether I had the label on my records or not. What I wanted was someone to give a label to whatever the hell was wrong with my body, then fix it. But that isn’t what I got. And it’s not fixed.

I have diagnosis, but it’s not the one I wanted. I’m still stuck with being unable to do most things on my own. Thing is, just like pretty much most other people with ASD, a big part of being “OK” is that everything is the same. Take that away and it feels like your world is falling apart. When I could do everything myself, it was not so much of an issue. But when I’m almost entirely reliant on someone else to do it, then I have a problem. Good intentions unfortunately don’t make it right if it’s done wrong… and even though to everyone else it’s the thought that counts, I’m afraid I can’t deal with it if it isn’t right. I honestly can’t help it, change it, or “fix” it. It’s just how it is. I know… I’ve tried everything I can imagine to make it go away, and it just won’t. This is just how my brain is. It’s not like everyone else’s. It simply doesn’t really work properly.

Love Autism

If only I could accept it…

After more than 30 years, someone has finally told me why my brain doesn’t work properly. However, this is a diagnosis that doesn’t make everything all better and go away. You don’t pop a pill or have some surgery and get all better. There is no “getting better”. In a sense, there’s nothing to fix… it’s just a thing that makes you different. We don’t all have brown eyes, we’re not all one gender, we don’t all like the same things, some people are puppy-people and others are not… We are all different. OK, mine might be a bit stranger, but it’s just mine. My brain reacts differently to things, and that’s all there is to it. I have Asperger that you don’t understand, but maybe you have a strong affinity towards Gansta Rap music and a penchant for pink that I’ll never understand. That doesn’t mean either one of us is wrong. (Although pink of any kinda really is…)

And if only I really saw it all that way… If only everyone saw it all that way. (Not the pink-thing, the other thing.)

At the end of the day, it’s just a name for what’s wrong. It doesn’t change the fact it’s there, or ease my suffering – and yes, I suffer. It’s not at all pleasant being left lost, scared, and confused because something wasn’t done “right”. It’s not my choice, I don’t like it, I don’t want it, but it’s there and I can’t change it. I can only control what goes on to ensure feeling that way doesn’t happen – or happens as little as possible. It’s not worth the consequence if it does.

What really needs to change is the pain. Having the chronic pain has taken away my ability to do what I need to do to be OK. I am lucky that about 90% of the time the people who help me go out of their way to ensure things are done “right” for me, out of kindness and understanding. The other 10% of the time unfortunately leads to extreme breakdowns, or “meltdowns”, as my brain is unable to somehow distinguish that despite it not being right it’s not something to panic about. The result is a terrifying mental breakdown and blackout created by an extreme panic attack that execrates into a “meltdown”. During it I am not really aware of what’s going on, I just want the panic to stop. It’s exhausting and traumatic, and I’m quite willing to do what it takes to ensure they don’t happen. Most kids get diagnosed young and spend their lives learning how to deal with what’s going. I grew up in the back-end of north Wales and the best my mother got for my strange behaviour was, “she’ll grow out of it”, followed by mixed psychiatric diagnoses. The one that stuck was Depression. So I got treatment for depression… and, strangely enough – who’d have thought – that didn’t work. Nothing worked. Now I know that doing the little things I’ve always done to keep my mind tranquil and “happy” is what is required, and I do them. When they’re done, I manage. When they’re not… well, things don’t go so well and I end up back in that hell I hate so much.

Pain Will Make SenseWhat this ridiculous amount of pain has done is taken away my ability to cope. I spent my whole life learning techniques on how to deal with things that fall out of these strict parameters I built for myself. The pain sears every cell in my brain and takes away my ability to think, my ability to remember how I’m supposed to manage things if they go wrong. The pain causes stress and suffering, flaring (for want of a better term) the other thing that I have, and rendering me in that state of lost confusion, terror and panic. I need to do things myself, in my own way, to manage – taking that ability away is a living nightmare.

The Pregabalin has brought some of the pain under a little control, but the other side is the side effects screw with my head anyway. I’m walking a tightrope I keep falling off. I’m walking it alone. I had (stupidly) assume I would have some kind of professional help, but I don’t. Certainly not on the pain-side. There, I’m left to my own devices, having had nine whole months to deal with all this until my next (second) pain clinic appointment, the pain continuously getting worse. As much as the Pregabalin masks, it doesn’t mask the fact it’s getting worse and I can do less and less.

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I apparently actually have two crappy conditions that contraindicate each other. Both are crappy and both are rubbing each other the wrong way. One just aggravates the other, and the meds just gets in there and makes everything even worse when it’s not actually doing its job and helping.

There should be help, but there isn’t. The NHS pain clinic here is overburdened, and ergo useless. To have almost an entire year between appointment one and appointment two is mind-boggling, especially when ordering an MRI right away, eight months before you’re even going to see the person about it… and by then it’s no longer relevant. In the meantime, I continue to get worse. Also, in an ironic twist, I now have that pain everywhere except in one of my fingers – which is now actually going almost completely numb. It’s the only place I can’t really feel pain… or much of anything, really. Actually, it just feels weird. That’s the last thing I expected to experience with all this.

 

Weather The Storm


One Small Step…

Well, I never believed it was possible that there was medication out there that would actually work for me. After trawling through what seems like the entire BNF for something that will work, it’s pretty unbelievable that it seems like I finally may have found something that actually does.

change your attitudeI was given Pregabalin for neuropathic pain. I admit I was skeptical – nothing has ever worked and I am hypersensitive to opiates, so I have never been offered anything that gave me any pain relief without making me extremely ill from side-effects. I never thought this new one might actually do anything. Instead, it’s actually working. Slowly – but it’s still working.

After a while of it building up in my system, raising the levels every few weeks, and with only fairly mild side effects, it seemed like one day it just suddenly started to work. I managed to a few things on my own without too much difficulty. They were little things the average person would take for granted, but to me they were huge. It wasn’t like it completely magically cured me – far from it. But the mind-blowing sharp pain that constantly kept me plaguing me and leaving me in tears, unable to even move and quite literally sometimes almost unable to breathe, was eased. Not gone, but significantly eased.

After getting my hot water dispenser and clever choice of easy food, I celebrated when I was able to get up on my own (slowly, but not too slowly this time!), walk to the kitchen without my stick (slowly, but surely!), sit on my bar stool chair, and make my own coffee and sandwiches and bring them in. All without Doggy’s help! Doggy lay on his pillow in the kitchen and offered moral support in exchange for some ham. Then he offered more moral support when I ate my sandwich by helping me eat it. He’s very generous like that…

Let GoRight now, I can actually feel the pills as they get into my system and start working, which is nice (and may be entirely my imagination too…). In the morning before I take them I’m still in almost the same pain as I was before, but there is some minuscule difference now even then – it’s not quite as sharp and mind-blowing as before, which is hopefully showing a step in the right direction. Once I take them, within about two hours there starts to be a difference in how and what I can move. My fingers become less agonising and start moving better. They’re not stiff with sharp pain and aching raging through them. As the pills build up, I can – to a certain extent – type, use a mouse, an Xbox controller. I can’t really move for another hour or two, but then I can get up (very carefully!) without Doggy’s help, make some hot sweet tea or coffee, even make a basic sandwich, without too much difficulty. I still need Doggy’s moral support though, because it is still difficult, even if it’s not mind-numbingly agonising. There’s something very unfortunate about being so happy to finally being able to do such little things, or even make it to the bathroom on your own without any help, but it’s so amazingly freeing when that option is given back to you. It’s awful you couldn’t do it in the first place, but it’s really great when you can do it again, even if it’s not all the time.

The pain is still there… but it’s numbed a little. It’s masking it, making it feel extremely uncomfortable, rather than having that sharp, searing pain. Like having a local anaesthetic for something rather invasive… it feels a bit like that. It probably also helps that Pregabalin is a well-known GAD treatment. I think its GAD side works well on me too, which probably helps an awful lot too. It’s extremely stressful, distressing, and anxiety-inducing to be incapacitated by excruciating pain for so long. It’s incredible when even a small amount of your mobility and ability is returned to you by just dulling the pain just a little. So you can breathe. Think. Have a small break.

The pain relief the pills give me don’t last too long, and it’s obviously not perfect. It’s not the full dose, so I still hope that I may get another little step forward when I finally have them raised to the full dose.

I can’t run about, ride horses, do yoga, walk unaided and go out without Doggy (or a wheelchair – yet…?). And perhaps I never will. But if I can do some basic things like look after myself in the house without being afraid of being left alone, that’s a huge deal, and I’ll accept that. Independence is the most important thing when you have it taken away. Recovering even some of it is a huge goal and feels great if or when you get that some of it back. You’ll take anything, and be grateful for it. It would be great to be able to walk a little outside on my own, with my stick and have doggy walk with me, rather than having to pull me. But we manage OK the way we are, and it’s good for Doggy to have a job.

I How to Flystill can’t play games for long hours anymore, type a lot, or make some food without a lot of pain – but that pain is still numbed in comparison to what it was before. And at least I can do those things a little, and the pain I have is pretty bearable in the most part, as long as I take it easy. Right now I take what I can and celebrate every little thing I can do. I’ve had to learn to think differently, stop being so hard on myself, deal with things as they are without question and try to be OK with it. It’s not easy, but I start by celebrating what little things I can do, and try to troubleshoot the things that I can’t. Try to work my way around them. It’s difficult, and learning to accept is a hard lesson to be learned. I have to accept my body for what it is, and what it isn’t, and I shouldn’t expect anything else. We don’t live in a world, a society, that thinks like that though… So it’s hard to do so. But I think I’m getting there – quite slowly, but I am.

Some days are lighter than others. Some days are downright dark. But the little things matter and so I try to remember that.

These things may be one small step for man, but they’re a giant leap for a Lel – so I’ll keep going.

 


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