Tag Archives: diagnosis

Borderline Personality Curiosity…

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I Still Can’t Quite Process This…

Borderline Personality Disorder

It is Imperative to know… However…

ASDAlexithymia, perhaps even BDP Itself, disallows me to be able to manage to process anything about knowing it, understanding it, or thinking about progressively accepting & researching this…

Well… No there’s problem Accepting it… It explains everything OTT inside me that ASD just doesn’t do to that extent. Like the Alexithymia takes lack of emotional understanding to a whole new level. 

Disassociation. Extreme Fatigue. Confusion. Exhaustion. Traumatised & Demoralised. Therefore… No chance of processing something so big & shiny-new…

But… I guess it’s the same rules as ASD and the Lexi… These thing are an “is” — the symptoms, the effects, what it does to your brain… Then figure out “workarounds”… Right…?

The other thing is… Formal diagnosis or not? The ASD was mind-blowingly life-changing. But this…? When it’s a co-morbid secondary issue, I’m not sure if it’s really worth it. There’s nothing they can really do about it, is there…? Well, I mean, not for meSpecifically. Not in general. Other people can take the treatments listed. But I cannot. 

The information alone is worth more than anything else. Easier to fight or control an enemy you’re not only aware of, but know everything about. 

What to do… This is tough one. It should be a no-brainer… But after my life, my life-experiences? Decades of everything going wrong when it comes to these things… I’ve been burned so many times, inside I’m more like a crispy corpse. I’d have naught but scar tissue everywhere from the burns. I have no space left for more, now.

I’m kinda done with formal NHS Metal Health, now. Including this, possibly. Probably? It’s still a Question-Mark. Maybe it’s important to have. Or at least to know. For certain? But it’s a weird psychological issue again, and again another debated about everywhere. Not understood properly.

Might it bring more understanding, more relief, like the ASD one did? That there’s a “Name” for all this terrifying, horrific things inside me that lash out and terrify my ASD & Alexithymia more than half to death? 

I hate these questions. I hate that they even are questions. I used to know the answers before they were even posed. 

I’m not here. And I am terrified…

#research #panic #pictures #frustration #anguish #selfawareness #feels #personalinsights #suffocatingfeels #sad #drowningfeels #uncomfortable #uncertainty #drained #disturbed #upset #weird #asd #alexithymia #anxiety #overwhelmed #distressed #confused #disassociation #stressed #helplessness #exhaustion #researching #aggitated #fatigue #bpd #tmi

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‘The NHS has been destroyed’: Boris Johnson confronted by father of sick child | Politics | The Guardian

Man accuses PM of visiting Whipps Cross hospital in London for press opportunity
— Read on www.theguardian.com/politics/2019/sep/18/nhs-destroyed-boris-johnson-father-sick-child-hospital-london

Whips Cross Hospital is indeed a derelict pile of complete rubbish… Services cut to the bone, An ancient Victorian set of buildings falling apart at the seams, waiting lists too long… Has been under Special Measures yet has just become worse…

Six Years age Now… This hospital screwed with my health & helped destroy my life… 4 months for a pain management clinic referral, 9 months wait for MRI *Results*… Further 4 months wait for Rheumatology referral… 5 minute consultation to be told had “one of the worst cases of #Fibromyalgia he had ever seen, especially on a young(ish) person… Then discharged me with no follow up, care or health plan. Just… Nothing. I was left to fend for myself.

18 months in total, start to finish, it took altogether for me & my tireless GP to get the Fibro Diagnosis Of… well, Anyone… Then, Without care I ended up so ill, I lost the use of my legs through disruptive nerve issues from Fibro & Hemiplegic Migraine.

With proper immediate diagnosis & care, this would NEVER HAVE HAPPENED… 😧😰😩🥺😢😡🤬🤯

So… Whipps Cross… I have no words as to how broken, downtrodden, buggered… this place actually is. I wish I could have given the **CEOs** of that death-trap hospital a piece of my mind… They’re the god-awful culpable ones…


Practical ASD Assistance In Wales

There is not a lot of ASD assistance in Wales. The usual people haven’t really come through, particularly in North Wales. Having moved here from London, I’ve been astounded to find there is actually nothing here. And I mean nothing.

Zero. Zilch. Null.

Whilst there is stuff in the South, although predominantly only around the Cardiff and Swansea area (as if the rest of the entire country doesn’t exist), the rest of us are generally ignored. There is no help out there… unless you’re under 18, then perhaps there’s at least a little. For adult? Nada.

In compensation, there is a website, for ASD Info Wales. This has a few things that can be of practical self-help, and it does have a good amount of documentation for people with and without ASD to assist with life and interactions.

The ASD Planner – found at ASD Info Wales – is a good example. It’s an app for Android or iOS which is an easy and useful “tool” to use to help deal with situations that may arise… rather like a cheat-sheet for things.

 I’ve found it useful, so I thought I would share it.  🙂

 


Neuro Diagnosis

Got letter of official diagnosis letter. Dr specifies it’s effectively “Hemiplegic migraine” (or migraine variant syndrome) with Fibromyalgia. May or may not get better.

The MRI will show whether or not (presumably and hopefully not!) there is an underlying cause from something other than the pneumonia trigger.

So…. there you go. I’m complicated…

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MRI – The Claustrophobic Miracle-Worker

Had MRI today. I do not recommend them… Squished into a toothpaste-tube washing machine drum that feels like your own coffin fornipnto 45 minutes – not my ideal way to spend a morning…
Apparently they did actually find a brain, though. So there!

*Stipulation: Must admit they did not specify it was On or working, mind… 

 

They’re not pleasant creatures, MRI scanners. However, their inventor and everyone who has had a hand into shaping what it – and fMRI scanners – are, should be lauded and worshiped as magicians and forever lifesavers.. Saints, almost. What their contraption(s) have done revolutionised people’s ability to be diagnosed with neurological and neuropathological – and eve “psychological” conditions.

They proved the true existence of schizophrenia, MS, Fibromyalgia, depression, even Gender Dysphoria (being transgendered). They have also disproved and alleviated fears and suspicions of long-term illness or disability for people. Allowed doctors to see why some people will never walk and others don’t after paralysis or numbness, by giving them the ability to see the spinal cord, discs, and nervous pathways.

Hopefully, today, it will allow them to see I do not have anything to awful causing my weird and god-awful… condition. 

 

life's pooh

 

I was lucky this appointment came very quickly. It was in a temporary mobile unit at the local hospital, rather than the big one that is quite far away. The nurses were so lovely (and I’m completely sure they knew nothing about my ASD), so calm, so confident in helping and their support, that when something looked like it was about to go a little wrong, their support – and my father’s support – helped me go through with it. Just goes to show you don’t need to be “Autism-Friendly” specifically all the time… Just nice.

The thing itself is unpleasant, but they tried their best to make it as not-so-bad as possible. Ear plugs, ear pads, and a big foam pillow under my knees as I lay down, made it as comfortable as possible for me to lie there (they also offered an eye-mask, which I declined). A plastic “cage” (for scanner-tracking) was locked over my face, and I was ready. Well, properly packaged, anyway. I think few people are truly “ready”.

Then I was slowly fed in so it could literally look inside my brain.

Head and neck took about 20 mins each – they took a little extra time because the spasms (usually controlled my Magnesium oil) were starting up and making me twitch or flinch enough to spoil their pictures. Because I did not use the Magnesium oil and had my Pregabalin at the wrong time (the appointment was for the time I take them, and I needed them to be kicked in way before then), I was managing on the essential oil recipe and, well, quite a lot of alchohol – which is never by choice, believe me…

I stayed up all night for this – which wasn’t even a chore because I have a great new game (that would be Mass Effect: Andromeda) and I was utterly scared out of my mind about going through this. I always hate them and they’re horrible, but to get the peace of mind (or answers) you need, they’re necessary, so you put up and shut up. But that doesn’t make them any less scary.

The noises change from a downright trance/dubstep/garage dance beat, to Woodpecker Mode, to hammer-pounding, and all sorts in between (but they’re the main ones). Then there’s silence whilst they check the pictures or move you in the machine. The weirdest thing is the… sensations… the thing gives you too. Tingling, vertigo, disorientation… other things… you can feel where it’s looking by what you feel and where. It’s a strange experience, but one that does no harm (anxiety and panic aside…).

They can – and do – talk to you when they need to, and they will give you some “time checks” when you’re inside, which is helpful. And finally, they’ll tell you it’s time for you to leave. The bed slides out and the bright lights burn the your eyes – or, hopefully, back of eyelids – after being in your little white coffin for so long.

Then… It’s all over.

 

 


Final Answer

I finally had an appointment with Rheumatology. And with maybe just a half a dozen questions the doctor told me right away what I had was undoubtedly Fibromyalgia. Without question.

Do Not Give Up... BeginningThe definitiveness of his diagnosis with a few questions and barely a glance at me, and poking me gently in a couple of the known “key” areas of pain for fibro, was quite a revelation. Especially after waiting for so long to get one. Then just like that, after nearly two years, in about three minutes tells me without a doubt in his mind that it’s Fibromyalgia. Where was he about 18 months ago…? He was a straight-talking quite typical Irish doctor (I think they’re my favourites – they just tell you everything as it is without dancing or mollycoddling or being confusing) – the plain-and-simple “oh, it’s definitely fibromyalgia”, said as if it was a clear as day and anyone should have seen it, was just great to hear after so much dancing about.

I even had a list of everything I had wanted to tell him about (don’t they all ask for your symptoms?)… but then he just went rattled them off for me, and I just had to say yes to them all. Pretty easy.

The doctor was quite taken aback by the severity of my situation and the amount of pain I was in (…way to go for making me feel really sorry for myself!). He didn’t like that I was “young” (he was middle-aged-ish, so it’s all relative…!), having to use a wheelchair to get about, and almost entirely dependent on other people. His first recommendation was yoga – and I told him that I had spent at least 10 years practicing before all this. I also told him things were easier with hot water and the bath helped, but I was scared of water. He responded with that it was a shame about that as he would recommend hydrotherapy, as I was already experiencing some dystrophy – because of the severity of the pain I can hardly move my legs from it, and ergo I can’t move them much anymore at all, making the pain of walking and standing worse. The hydrotherapy would work around this: The warmth of the water would make it easier for me to move about, and the water itself would buoy me and take my weight for me (not to mention moving in water is harder to do as it presses against you, making you work harder).

I’m willing to do any try anything to help, even if it’s a little bit – so he popped next door to the hydrotherapy team to have a quick discussion about whether they could help me. He came back pleased that they were more than confident that they would, so he set me up with a hydrotherapy referral with the physio department.

Apparently they teach you various ways of exercising in the warm water to maintain muscle strength with less pain. Hopefully with this I can at least walk again a little, and control the pain whilst doing so just by being stronger. Then after the block of however long it is you then just find a warm pool somewhere and then maintain the treatment from there on. I don’t like water – well, actually I’m pretty damn terrified of it – but I’ll try pretty much anything, within reason. Hopefully I’ll be able to walk some again, and just need the chair for long distance stuff. It’s worth tolerating and controlling the fear (they give you armbands, right…?) if it will help. Fear will not be the thing preventing me from getting better, that’s for sure. If I can get stronger again, I’ll also be able to sing again. Maybe focus more on being productive instead of just being in pain. Anything is better than what I have now, which is so very little.

If I can even get it to a 50/50 situation, it will be so much better than this. If I can walk a small amount with some kind of walking aid, be able to go into the GP practice on my own from a cab, maybe even to the local shop on the corner, or just walk for a few minutes around the supermarket for a few things.

After getting my new, light wheelchair and being able to learn to push myself about, my arms and shoulders have become stronger – I now can push myself around quite a bit fairly effectively on good surfaces (…just don’t get me started about the 6-inch high tree roots pushing out of the tar-mac paving every 30 yards on the pavements here), and I did pretty well at the Lea Valley Park trail by Walthem Abbey (it was fairly flat and tar-macked). All I need now for it is a cup-holder and I’m good to go far in it, powering me with coffee the as I go!

Now I have something to go on, something to work with. There maybe no “cure” or known treatment that really absolutely helps, but there are some things to try that could work. It’s a personal journey for each sufferer, where you just try things and see what works. Every person is different, and all you can do is try and treat symptoms. I’m lucky the Pregabalin works for me, but there must be other things – hopefully the hydrotherapy will help.

The doctor also told me that it definitely has a wider influence on you than just pain – something that was unexpected. I hadn’t realised before that sufferers of fibromyalgia can’t sleep properly; they never go into that deep sleep (I’ve never slept well, but I’ve never been quite this bad before). I certainly need to do a lot more reading up as to what more this affects, instead of just focusing on the pain. It does not help that quite a few of the fibro symptoms are very similar to some of the AS problems I have, and they’re probably exacerbating them extensively. I need to try and detangle them from each other and work on finding a way of dealing with them.

But… At least now I have answers for it all. I’ve got stuff to work with now and hopefully it’ll get at least a little better from here on out. Something is also better than nothing, and information is the best something at all because then you know what you’re dealing with and take some control back for yourself.

 

 

Start Over

 


Not Living The Lie

Normal people live the lie. Then expect you do do it too. To make them feel better about… OK, I haven’t actually got that far. I actually have no idea why they do it.

It turns out I have Asperger’s, and I also can’t lie. Well, no, that’s not accurate… I can. Very well, if required. But I just don’t see the point. I can act too… I acted the role of a “non-Asperger’s” person for over 30 years. So well, in fact, that not one of the god-knows-how-many mental health professionals I’ve seen over the years picked it up. I was just seen as  someone with “mental health issues” because I was “depressed”, and “eccentric” because I’m a huge geek. I was “different”. I was left to it and avoided. I kept my head down and avoided them. It was symbiotic. Until I became ill with a chronic illness… Then Pandora’s Box was opened. I could no way in hell deal with both of them, and the immense pain I was in trumped the social confusion I dealt with every day. So I stopped acting.

It was only when I stopped acting, an I met a social worker who came to see me about the pain I was in (yes, I know… I asked for CBT to deal with the pain and they sent a social worker… I still don’t know why), that she pinpointed me like a laser and told me what was really going on with me. She was right… and apparently it wasn’t exactly a difficult diagnosis to make. The guy was back in a week with a confident yes, so it clearly wasn’t much of a head-scratcher. Reading the NAS website about it was like reading the most complete biography of myself I ever had. I felt like my soul had finally found a home… an answer… and I finally understood myself. It was a huge relief. It didn’t fix things, but it took the most enormous weight off my shoulders you can ever imagine.

But after the diagnosis… nothing. Nada. Zip. No help. At all. There’s none available – even the Autism Unit isn’t within my own NHS district – I only got to see them thanks to a new partnership between theirs and mine. But after diagnosis, it’s up to the local NHS to sort stuff out. Only they didn’t. Haven’t. And probably never will. So it’s just me now… trying to work out what to do and how best to help myself.

Because no one else will. I’m not just talking about the NHS, though… I’m talking about everyone and anyone. Ever.

 

Standing Alone….

Everyone always shouts at me for getting things “wrong”. They always have. Doesn’t matter how old you are, it always seems to be “wrong”. You are always “wrong”. Your behaviour. Your tone. Your way of speaking. Your lack of appropriate social interaction. Your hyper-sensitivity to everything. Your fear of all sorts of stuff. Absolutely Everything. Yet… no one tells you how to get it “right”. Right for them anyway. Because, you know, that’s all that matters. Them.

Who are they? Everyone else who isn’t like you. The world. People. Society. Everyone else. Everyone “normal”. Everyone who everything always seems to make sense to them. They know how to do all this stuff – what they like to call “normal”, like talk to people, go out, have proper conversations, interact, attend work parties, be outside – all as if it were, well, normal. But it’s not. Not to me. And not to some other people, people also like me. We’re a small group, a rare group. We’re almost always shoved to one side and ignored by the general population (if they know your “condition”), and most of us with the ability to do so, hide it. We fade and mimic. Pretend. Make our own lives stressful and miserable because we want to fit in. We don’t want anyone to know we’re like this, because the repercussions are pretty bad.

So… You do everything for them. Toe the line by their rules, which they don’t teach you. You figure it out, maybe, by being told off enough times about being “wrong” so many times you cry and watch them do it. You try and do everything they do, because everything is about them. It’s about how they want things done. How they talk to each other. How they lie, because they somehow think that’s right… when all it is, is stupid. Pointless. Pathetic. Doesn’t get the job done – just creates disharmony and complications because then they’re all tip-toeing around each other for the sake of “peace”. There’s no peace; they’re all too stressed out from living the lie. So why does everyone do it – and then expect you to do it too? It’s really damn well strange. And pathetic.

They also can’t be wrong. Ever. If you tell them they’re wrong, all hell breaks loose: They become defensive and stupid… you know, all the things you are not to do… heaven forbid. Yes, heaven forbid you of all people (“autistic”, “wrong”, “insane”, “attention-seeking”, “stupid” you) should tell them they’re wrong about anything. Common sense doesn’t seem to exist for them. When you point it out to them, they go barmy. They don’t want to know how to do it right. They hate it. Get defensive and just won’t ever take responsibility for it. Because you said it to them.

… Funny, though, how it’s OK for them to do it to you – over and over and over again. Then have the gall to never tell you how it’s done. Their response? To be appalled that you have the gall to express (read: lie) that you don’t know.

The fact you really, actually do not passes over their head like a home-run baseball. It’s like such a ridiculousness that they can’t even comprehend… but turn the tables on stuff you know to “obvious” and their backs go up and the prickles come out like a hyper-sensitive hedgehog.

They live their lives in hypocrisy and lies… I’m amazed “normal” people get anything done at all. Actually… Look at the world. Clearly, they don’t. 

When I did my work, I was obsessive, detail-focused, no mistakes (OK… I made one – once… A long time ago… Let’s not talk about that…). I got the job done. I was looking for perfection. No job was left half-baked, unfinished or without 200% care, attention and dedication (read: obsessive fixation). All my employers wanted me back, or didn’t want me to leave. When I first became chronically ill, the place I worked bent over backwards and every which way in between to help me manage, and when I really was no longer capable of giving at least 100% to my job, I told them I had to leave. I couldn’t bare the thought of the illness making me get something wrong – and until that point I had poured every effort I had into ensuring the illness didn’t get in the way of the quality of work I was doing. When I told them I was leaving, they really did not want me to, and I felt absolutely awful at having to do so – I loved that job, and I really liked being there. They took my “idiosyncrasies” and just left me to get on with it. That is how everyone should really be.

But that is not how most people are. Instead they’re always focusing on the things I find difficult, busy being horribly derogatory when I can’t do them. They then do all these strange things I just don’t understand, that are not really right, but asking questions about it and bringing it to their attention is “wrong”. Apparently they should not be held accountable for their actions, they are allowed to be defensive, and they constantly pretend to always be perfect. They’re not. Not even close. They’re chaotic, haphazard, disorganised, lying, posturing, play-acting, and being ridiculous. Too busy pretending to do stuff instead of just getting on with it. It makes my head ache from it all.

Their chaos, lies, posturing, strange rules all cause me to be confused and upset. But I’m supposed to be quiet about that, according to them. When I’m not (and I’m always not – I can’t lie and pretend it’s OK),  and turn it around at them, and when I then upset them in turn, they’re allowed to get all mad and I’m supposed to accept it’s all my fault. When they started it by being idiots and doing something wrong in the first place. I just do not get it.

 

Playing A Game You Just Can’t Win…

Seriously, it’s like being forced into playing a huge, frantic MOBA you’ve never even heard of before and expected to just get on with it.

… How many of you know are saying “What’s a MOBA?”. Yeh. Exactly. And now imagine you were forced to play against the highest competitors who yell and curse and say mean or derogatory things about you because you: Don’t know what a MOBA is; Have no idea how to play; You don’t know what the rules are; No one is willing to teach you anything; Then they all just ignore you… Oh, and you can’t leave. Ever.

Well… welcome to my world. That is just how it feels. You are thrown in, expected to know how to swim, and when you can’t, people are really mean – even seriously abusive – at you. And if they’re not doing that, they’re ignore you and they walk away. Leave you alone to deal with it however best you can. You struggle, you’re all alone, there’s no one to help you, it’s do or die. So you somehow frantically – through panic, despair, confusion, overwhelmed anxiety – work something out to save your own life.

Only then… they shout at you when your coping mechanisms are rubbish.

Without any frame of reference apart from what you can guess and work out… how the hell are you supposed to be successful without any kind of help??

Some people don’t get that far though. They just give up. Then no one can work why they took their own life. Why they were depressed. There’s lots of reasons for it, but this is one of them… no help, unable to cope, no one to show them what to do.

And so eventually you come to one very basic main conclusion: “Normal” people are idiots.

 

Trapped In This “Madness”…

The “madness” here isn’t the crazy-place you might assume my head is in. No… it means The World. That is was seems like madness to me.

Adults With AutistmAdult-diagnosed Autism/Aspergers… It’s not a good place to be. It’s also an ignored place to be. Nowadays, it’s all about the kids… and rightly so. I would rather die than allow a child to grow up and into an adult in the same way I did, facing the same things, the ignorance, the not knowing. However… There’s always a “However”… What about us? Those of us who struggled and didn’t know, and now want to reap the benefits of the last 30 years of learning about this thing? The children get it, so why can’t we?

There’s a whole bunch of NHS money being promised to helping kids with Autism/Asperger’s, but it feels like we’re being ignored and left behind. We’re already adults, with our own potential to meet. We already have skills and experience to offer. But how can we offer them if we’re not given the same treatment and opportunities afforded to the younger ones? It seems unfair we’re punished and penalised for the historical ignorance of the current NHS’s predecessors.

In the 1980s and 1990s, when I was growing up, no one knew what “Autism” really meant. “Asperger’s” didn’t even exist in their vocabulary. It was all about the stereotype of little boys playing with trains and screaming. It surely wasn’t about little girls with My Little Ponies who were also screaming… My mother knew things weren’t right. The health worker said I would “grow out of it”. I’m 34… I’m still waiting.

The best I’ve been offered in regards to help now is regular CBT (not Asperger’s-specific), and there’s a 12 month waiting list for that… which I was put on after I had already waited 9 months to be put on it. There’s a lot of meltdowns and confusion and panicking that’s going to be happening between now and then… How exactly am I supposed to deal with it? Oh yes, in the same way I haven’t been dealing with it since I was born. There’s also no interim-therapy or counselling available, either – there’s no money, so it’s an either-or situation. Are they waiting for us to all get so hopeless we end up being suicidal and going through with it, so it thins out the list a bit? I honestly feel like that’s what they’re hinting at. There’s no excuse to have to wait over 18 months to start therapy. Within 18 months it should be done and over with.

This is a lonely place to be. Mainly because everyone is busy being entirely negative towards you. Never patient, or accommodating, or sensible. I understand things even less now… my mind is caught up with the pain. Managing the pain. Ignoring the pain. It has no time to over-ride the other stuff that’s going on in there.

I imagine some of it is still to do with the fact I still can’t really accept it. I’m not happy about it. I still want to be just “normal”, like I always have done. Except I can’t… the only difference is now I  know why.

I love the fact people think you use it as an excuse… maybe because they’re always living those constant lies and think everyone is like that. Always trying to lie and cop-out of things. From the moment I’ve got out of bed I have worked my ass off until I’m exhausted – dealing with people, going outside, talking to people, doing my job, going on public transport, being in an office full of other people, walking through crowds, pretending to be “normal” and playing by their stupid little society rules… Everything that I hate. That terrifies me. That completely freaks me out until I can’t think. How many of those “normal” people. who assume everyone cops out of things, do that too? I’ll bet not too many. They’re probably the ones who do always lie and cop out of things. I didn’t even know what all this stuff they keep accusing me even was or meant until they started accusing me of it and I learnt. Funny that. But I still do not do it.

I learnt ways fending for myself. Of coping the best I can. People accuse me of “manipulation”, of “anger”, of “seething”, and “insanity”. Horrible words. Words that hurt. Hurt because they’re not true. I like the truth. You can deal with the truth. What I can’t deal with – or abide – are lies. Inaccurate information. Deliberate disinformation. Things that are not what they seem. Pointless hypocrisy, ridiculous lies, mind-numbing posturing… why even bother? How do people even live? I have no time for such things, so do they? No wonder this world is in a dumbfounding chaotic mess. They’re all to busy playing this game to get some proper stuff done. It’s hard not to be really, really pissed off about it, really.

But then there’s that catch where they don’t like you pointing things out that they do “wrong”…

And the wheel of hypocrisy spins all over again.

 


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?

 

 

 

 

 


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