Tag Archives: pain clinic

Falling…

I have the headache from hell. It’s been here since Storm Irma hit landfall in Florida a few weeks ago. It’s not going away now though.

I went to London for 3 days – home again after two whole years. Four years since I’d been to where I used to live and the West End, because once I moved to Leyton and was ill, I never could go back. I only went to Stratford (and frankly that was pretty good enough, too – great area!). This was the first time I had been and the first time I’d used a proper wheelchair there… But the biggest shock wasn’t being back in London (that was just normal, like visiting the hometown you grew up in and love). No… The biggest shock was coming back.

When I was there, staying in Angel [Islington], it was far from perfect. But things were easier. I wasn’t as ill. Wasn’t in as much pain. I was stressed to hell and kingdoms come, but I wasn’t as ill.  I was able to get up 1-2 hours earlier than [here] in north Wales, and with far more ease. But since I’ve returned to north Wales, the difference (whatever the difference is) has hit me with a sledghammer and then some. It’s, quite frankly, utterly shocking and horrible.

It’s bad enough this Aspie Girl had to leave her home (London) in the first place. Now, after going back like nothing had happened (except with more pain and a new wheelchair), the difference in… whatever… is striking. And maybe because I’m not used to it now, I can’t cope with it. With whatever it is here [Wales] that does make my condition that little bit worse. I don’t know if it’s a psychological thing affecting the Firbo, or a Fibro thing affecting the Psychologial. But whatever it is, it’s there and it’s real. And shocking. So to be so brutally tasked with trying to “Cope” with it, is boslutely horrible and really hard.

No, I did not expect this at all. If anything I thought I’d get a few days of respite, but not to this extent. Wishing now I’d stayed a damned week instead…

It was lucky I went with my new chair – GTM Mustang, from Cyclone. [Mine’s black and silver and so comofortable]. It made all the difference there. I managed to go around everywhere I wanted with absolute minimum assistance, which was amazing. Thus I question, how is it now, from the time I’ve come back, am I passing out with pain again? Did being back home make me stronger? Is there a radical difference being up north? Is the weather? Is it about living so high up [compared to London]? What is it about being here that makes it go from 9¾ was a maximum pain there, to being a minimum one here?

Even when I was very stressed there (just try taking the train from Euston station when you’re in a wheelchair!), it still didn’t get too bad… well, until I’d been on that damn train about two hours, and it was already 7pm! And yet, all I’ve done since is, well, nothing, because I can barely move.

Is it psychologically-induced? There’s no denying the immense depression and fear I have living here, and not back in London. I’ve never liked it here, and I am horribly resentful and fearful of life here. I feel restricted because I’m forced to be more reliant on others here – you have to drive or be driven here, there’s no public transport available (certainly not adaquate enough for indipendent wheelchair use, like London has). There’s a lot of depression and fear involved to being here. I am just a completely different person there – I’m home, safe, and I know and like how the world works there. Here… Nothing of the kind, and I’m terrified and agoraphobic when here. That can’t help.

It’s always cold and raining, so wet, damp, painful… meaning that it has an immense knock-on effect on my physical well-being, and thusly has a knock-on effect on my psychology. Clearly, the answer is that it’s everything together doing this. It’s a messy, tangled ball of knotted string…

The fact there’s no help or support in any real way, means I’m left floundering. I’ve had to ask to be re-referred to neurology because this is getting worse. Physiotherapy has dumped me (there’s no NHS money for long-term help, and she was a wet blanket and a half anyway…). I’ve been waiting about a year for psychological help, and I’m still waiting, desperately trying to tread water in the meantime. The pain clinic waiting list is a joke – they took 4 months to get back to me, only to tell me that from then (July) they notified me it was going to be yet another 9 months of waiting list to go. And nothing else has been offered, or is available, because I live where I live.

I had a nightmare of coming off the road on a corner of a steep mountain road and falling down hundreds of feet into a deep canyon. I turned around in my car seat, squeezed my eyes shut, and said goodbye as we fell and fell and fell. Just in the moment before hitting the bottom, I came round. Before then though, I didn’t realise I was dreaming… I really thought I was going to die. From disbelief in the first instance, I turned and accepted my fate. It was so horribly surreal to face death like that… and perhaps miraculous to find out it was just a dream.

It’s how I feel in life – it was a very Jungyan dream. I feel like I’ve gone off the edge of a cliff, and I’m just falling and falling… but there doesn’t seem to be any way to be woken up from this nightmare that I’m living in. And I just keep feeling like I’m falling the whole time, because there doesn’t seem to be any kind of end or stability in sight at all. I’m closing in on the 4th anniversary of the start of this [next month]… and I’m just not even close to getting this sorted out. I don’t even have psychological support. I’m just on a useless waiting list, and it’s not like those call centres where the phone queue tells you where your place is… They just make you wait in Limbo until you finally get that letter to say it’s “your turn”.

I don’t like being back. I wish I didn’t have to live somewhere that’s not interested in being good to me, and in fact, only makes things worse. There’s no long-term support of any kind, and I have no emotional support from the professionals. I’m a lost Aspie, falling and floundering… And I still can’t understand why they can’t help me to level out and fly…

 

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If It’s Not One Thing…

Wow… I still can’t believe I have to survive on less than half of what I used to make when I was working. The term “benefit” is a joke… it doesn’t benefit anyone. Not me, and not the country/government/treasury/whatever. No one. It doesn’t help I don’t get what they say I should… After nearly 14 months I’m still only receiving basic ESA because I haven’t been assessed, and the PIP guys think I shouldn’t have the “mobility” part, despite being wheelchair dependent and housebound from pain. Go figure. It’s being appealed – and you never know, they might actually get to doing my tribunal before I die of old age.

What would benefit everyone would be if I could go back to work. But thanks to cutbacks, I am in no fit state to do any such thing, and I probably won’t be for some time.

It’s a shame they can’t get themselves together here and sort out the NHS and DWP welfare system so it’s fair and works – you should be able to support yourself if you can’t work. Of course, a lot of us would actually be in work if the NHS managers got off their backsides and made it about healthcare instead of bureaucracy and paperwork. I would actually be helped, diagnosed, and if not cured then at least properly supported. I wouldn’t be on 12 months+ long waiting lists for help. I’ve already been ill a year. Now I have to wait another one just to be seen to get some support to try and get a little better.

20120617-233040.jpgIn that time, I could have been sorted out and able to go back to work, even if just part time. Or working from home. Imagine the wasted money… taxes they have lost, the payouts they have made, loss of council tax being paid… I could have paid my way if the NHS wasn’t so broken it can’t even help me.

Going back to a “normal” life seems like a long way away, still. I had imagined that by now I would have been on the road to recovery. The reality has been rather more sobering.

After a 9 month wait to see the pain clinic consultant to only be told my MRI was clear and he was going with “Fibromyalgia” as a diagnosis, he decided the only course of action was to see the Pain Management clinic. Fine. But when I got my Choose & Book letter and went online to book myself in, the website told me there were no appointments. That the next available appointment was “unknown“. That I would be called “by” 27 April regarding organising an appointment. This was to go along with the 12 month CBT waiting list. So it looks like I’m never going to be seen by anyone. Ever.

My GP has now decided that he’s not entirely confident with the fibro “diagnosis” and wants a neurologist to rule out anything else going on. There probably isn’t, but, in fairness, fibromyalgia is supposed to be a “diagnosis of elimination”, and one single MRI scan isn’t really enough to qualify for that.

It is also based on the fact that I’m not getting better… something I’m not exactly impressed with. I was hoping to be better by now. If anything I’m getting worse, but that has probably more to do with psycho-somatical issues (as in physiological responses to emotionally stressful situations) and muscle weakness from not being able to move much. Then there’s also the cold… that has really put me back – though hopefully, with the nice(ish) springtime weather coming in now, that might not be as much of an issue anymore and may actually even help me a little.

On the other hand, you wouldn’t want to miss an underlying neurological issue if there’s one there. But I’d be absolutely floored if there actually was. But erring on the side of caution is always best – it’s always nice to hear test results are negative, even if it does leave you with more questions than answers.

Start OverSo that’s one more waiting list to get on. A third. Fourth overall, but I’ve been discharged from the pain clinic now. They decided I have fibro after one scan and threw me out again. Left me to deal with it on my own. It’s like what happened 16 years ago, when I couldn’t walk and the neurologist decided I had “hysterical paralysis” and kicked me out of the hospital. No tests… he just looked at my medical history, which was all about my mental health problems. Several months later, (private) osteopathy successfully treated it because it was a trapped nerve in my spine – lumbar and neck areas. Not Freud’s pet diagnosis. Nice to see that NHS consultants really know what they’re doing…

Thankfully, I have a GP who is at least willing to fight in my corner – as in the corner of successfully treating me. There is no definitive diagnosis and he wants everything eliminated. I can appreciate that, and I am amazed I have found a GP who actually believes in such a thing. Firbo is a fine diagnosis… but this one not yet one of elimination. There is peace of mind to be gained from knowing that’s what it is, because then you also know what it isn’t. Yes, it would always be nice if someone said it’s XYZ and it’s entirely treatable in amount of time. But as long as it’s the right diagnosis, then fibro is fine. Not really treatable – it’s just about controlling the symptoms – but not life-threatening or dangerous or scary. Which is really fine. I really like that. So fibro is definitely fine.

It looks like it might even be another year until I see anyone, let alone any improvement. I hope this is rock-bottom and that I cannot go any further down or get any worse (touch wood). I can’t live on less than half my usual salary for much longer – it’s bad enough that I’ll have to work hard to get back up to that level and start rebuilding my CV all over again. The more I’m out of the game, the harder it will be.

It is irony that when you have a condition or disability that leaves you unable to work, that you get even less money despite actually requiring more? It’s strange how you don’t think about certain things ever, but then they’re presented to you after you end up being unable to manage things, they seem to be suddenly impossible. You need money to get things – adaptors, special chairs, bath handles or shower chair, a wheelchair, a walking frame or canes, having to go places by cab (especially because the buses are not forced to choose wheelchairs over pushchairs – the absurdity of it! – and so you can’t get on the bus even if you wanted to),

They say you apply and receive PIP to help with all that. Except that’s completely bull. PIP doesn’t go towards such things. It goes towards affording your bills and rent, because your ESA hasn’t been fully-processed and the housing benefit only covers 50% of it – because you live in London and the LHA is completely unreasonable. I got this house because I could afford it (whilst working) – and even then only just about. It’s expensive, but one of the lowest priced places I could get – rental prices in London are insane, even on the fringes. Yet the LHA thinks I should be paying only half of what I am… although still refusing to put a legal cap on private rental sector (which should frankly be legally capped at LHA rates, given you need to be able to pay for your house if you lose your job or become too sick to work).

Trust me, I’d much rather be working. Especially because I love and miss my job. I miss it so much, and so bored of not doing anything that’s like it, I even created a whole detailed analysis and breakdown of utility companies and their offers and prices after being shafted by EDF one last time. I ran as much of a details data collation and analysis on all the companies I could find on Excel, and created a comprehensive spreadsheet breakdown of them all, with the conclusion of the best deal based on all the available information.

After crafting it, I realised I really was being shafted good and proper by EDF, so I switched us over to someone else. Who needs meerkats when you’re bored and have a spreadsheet, eh?

 

 

 

 

 


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