Category Archives: pain

Dead inside….

I just got the news from Walton [hospital] that they have downgraded my GPs referral from “Urgent” to “Routine“.

What the damn hell is routine about being disabled so much you can’t even go to the bathroom on your own sometimes??

It’s a minimum of 20 weeks to be seen – that’s four months from February. So June or July if I’m lucky. That’s because of the lovely 18 week waiting rule in NHS England, and the lack of neurologists in Wales.

This is not damned well Routine. It’s life-destroying. It’s taken everything away from me, and what – do I now just give in and finally complete one of my suicide attempts and succeed this time? Because it looks like I’m never going to get anywhere with these people, and I refuse to live my life like this. This is not a life. It’s barely an existence. It’s barely anything. It’s not right.

This is ridiculous… I don’t understand why they can’t see this is unnecessary suffering? Ignored in London and now ignored here… Have I no hope of ever being taken seriously in my life?

I don’t even understand why I have to contact two hospitals (I had to call Bangor about it as well, who were bemused at the downgrade) and then ask my GP to send a “letter of Expedition“… when she’s already marked the original as “Urgent“. Coming in last because I’m Welsh or because I’m an Aspie? Hmmm??? As always, is that what they’re thinking again? “Crazy girl”? They should be treating me with more care because I’m an Aspie, not like this. There’s nothing to help me nor protect me. Nowhere I can go for help because there isn’t anywhere.

I’ve emailed something called NAS Denbighshire and Conwy Branch – and lord knows if they’ll be of any help.

This is not just a marathon, this is walking through the Fires of Hell once again. I’ve been through the 9 Circles of Hell and here comes another one. How many are there really?

I’m almost pretty much ready to give in. I don’t know how much more of this I can take. I’m sick and tired of other people fuelling this depression I have inside me, unwilling to accept that without their prejudice and unkindness, I am a perfectly OK person who just wants to get on with things. I’m not looking for attention… I’ve been bloody avoiding for decades – am terrified of medical and healthcare professionals, and unable to trust them as fas as I can see them.

I am devastated. Crushed. And dying inside…. again. But what more can possibly done? Believe me, if I had a few grand stuffed down the back of the sofa I’d suck it up and take myself off back to London, to The London Clinic, and get my answer there and then. No more 4-6 months waiting lists.

I’m just dead inside. I’m just… numb.

There’s nothing left in me now. I’m just to sit here and rot, it seems, because there is no one anywhere that can seem to help me, and that includes myself. I can’t even seem help myself.

For the first time in my life… I can’t seem to help myself.

Advertisements

Neuropathic Esential Oil Recipe

After three years and four months of enduring terrible pain, this condition suddenly and inexplicably changed. It was slow, but it felt like happened overnight nevertheless… it was gradual and I didn’t notice the severity of this constant change until it became a complete “180”.

Suddenly, it seemed like out of the blue the intense chronic aching pain I had endured so long vanished – changing entirely instead into numbness and the worse electrical pain I’d ever felt… Intense. Sharp. Unbearable.

It was suddently like I had been covered in “magic cream” and then hooked up to the worse TENS machine ever made. I can barely feel anything much on my skin other than the vague pressure of contact (maybe like through a thick wetsuit or something… but it does remind me of how having the Magic Cream felt). My right leg went almost completely dead, dragged and didn’t respond. My right arm also became quite weak and unmovable. I had to do things with my left hand again – which isn’t easy! – and the intensity of the tingling, prickling, buzzing, burning, electric shocks, numb-like pins & needles, and the most extraordiarily awful spasms that were all absolutely unbearable. Quite frankly, I wanted that pain back. At least that was vaguely treatable.

My mother went looking for alternative options, given I needed something that would work better than “conventional” treatment. I’ve always responded better to naturopathy – so essential oils for this was probably the answer… And thankfully it was.

I have found the following essential oils had beneficial properties that helped with neuropathic pain. Certainly with mine. This has been tweaked a few times, getting better and better (for me), and the results have been extremely positive – all things considered.

With this combination, I have fewer symptoms, and they’re down to “bearable” now. My right leg moves a little and my right arm works better. The numbness that comes from keeping my hands up for any period of time is reduced – particularly withe the Patchouli and Frankincense. I can even feel a little bit more on my skin.

Now none of it is “back to normal” or perfect by any means, but it’s better than it was. And when something is so unbarble you’re passing out, anything is better than that. To be able to have even a little more function in my right arm and leg is fantastic (a little is better than none, after all) and it also means

I will also be adding Basil x10 to it today, to see if it helps with the “brain fog” that comes with neuropathic conditions. I hope that it will help me to think more clearly, to be able to put down more short-term memories, to be more alert, focused, in charge of my own thoughts and decisions, to be able to use my mind again – even if, again, it’s only a little.

 

Essential Oil for Spasms (& “Paraesthesia”)

Oils + Total Drops per 30ml/1floz:

     

  • Sandalwood x16

  • Clary Sage x10

  • Peppermint x10

  • Juniper x20

  • Frankincense x20

  • Majoram x10

  • Orange x8

  • Wintergreen x10

  • Patchouli x5

 


You Don’t See Me…

I have come to realise just how much lack of exposure to the difficult and negative affects and implications that having disabilities and chronic health conditions there is.

I suffered from mental health issues from when I was a child, and the same thing was true of that then – but now I have become accustomed to seeing more and more exposure to realised of living with difficult psychological conditions. I have become accustomed to conventional and social media focusing on these things – from magazines, to newspapers, Twitter, and TV shows (drama and documentary), there’s a lot out there trying hard to de-stigmatise mental health, cover its effects on sufferers and close relations, to tackle how it’s dealt with, and with plenty of “hints and tips” on how to cope with it, whichever side you’re on.

But what of long-term or permanent physical help? There is nothing much around about how to deal with that. Mental health issues arise because it’s not dealt with, then the mental health issues – a secondary complication – has to also be dealt with too. If there was more out there about how to deal with physical restrictions or impairment, we wouldn’t need to bother the mental health teams so much, because we wouldn’t need them. We’d be getting on better on our own, without spiralling into despair caused by the emotional turmoil of dealing with a long-term, chronic disabling or restrictive condition.

I just watched an episode of the TV show NCIS: LA. One of the characters has been left with spinal cord complications and nerve damage, causing a mix of paralysis and loss of sensation. Her reaction is not one of stoicism and eternal optimism, or inspired determination to get better. She has a reaction far more realistic – she is pissed. She’s irritated, hurting, angry, resentful, and takes it out on her boyfriend. This representation – which I think is what usually happens, and happens with me still – doesn’t happen very often. In fact, this entire scenario is quite often overlooked, ignored, or avoided all together. If illness or disability is depicted, it’s never in a negative, restful, or angry light. I do not think I can recall another realistic depiction of negative emotions to such a situation offhand. Chronic illness is almost never depicted, and if it’s a disability, it’s usually depicted by an able-bodied person in a wheelchair who’s been paralysed in a generic accident (casting choices like Daryl “Chill” Mitchell of NCIS: New Orleans cast are a rare exception). There’s not many people out there depicted with

The thing is, there’s nothing really to be scared of when it comes to being faced with long-term illness or restrictive conditions. And to praise them grately, a whole host of celebrities have been very open about having lifelong chronic conditions and dealing with them, like Michael J Fox (diagnosed with Parkinson’s at just 29), Jack Osborne (diagnosed with MS at only 26).

So… where is it on TV, in magazines, in the general media? Where is the “How To” guide to other people who are diagnosed with complicated conditions or illnesses? Where is the realistic confusion, anger and resentment on TV in relation to finding yourself diagnosed with something that is going to change your life? Yes, there are diseases like cancer or HIV out there, but what about debilitating conditions like Motor Neuron Disease (like Stephen Hawkins has, diagnosed when he was just 21 years old), MS, ME, Fibromyalgia, brain injury, cerebral palsy, cystic fibrosis, spina biffida, stroke… there are endless lists of ones. All ones that real people deal with every single day. Yet, few media outlets dare frighten the general public who are “normal” with such things. Heaven forbid. Therefore, there is very little out there to give us some indication that we are not, in fact, all alone when it comes to dealing with these things, nor any advice and guidance on how to manage dealing with it at all.

I’m not even quite sure why it’s so terrible or taboo. In this day an age we can talk about and depict the most illicit debauchery, of the raunchiest of sex lives… but not about how long-term, chronic and restrictive conditions affect us? Why? How terrible is it? I have to live with it, as do countless others… but the the other “normal” people don’t. It’s real, it’s true, and out there too many people have to deal with it in real life. Why is it not possible for it to be depicted so that not only others can be exposed to the realism of it, but we can see ourselves someone else going through it and empathise with them. We should all care about each other – isn’t that what humanity is supposed to be about?

Stephen Hawking has MND/ALS and is a living miracle of his survival of this condition – yet what we care about is that his brain is bigger than the entire universe (hence clearly why he’s the only one who understands it!) and he’s funny. And apparently drives Jaguars ( ;-P ). Michael J Fox is known as being Marty McFly with a hoverboard, not for being someone with Parkinson’s. And so on. We are all people with accomplishments and lives, who just also happen to have a chronic or restrictive condition. But that condition is always going to be hard to deal with, and it would be nice to be represented, to be seenacknowledged.

In my opinion, I believe this is why it is easy for so many to see us as “lazy”. That we can just “push through” it, like it’s just the bloody flue and cup of Lemsip and a banana is all we need to do the trick and get us up an running again. Nowhere out there does it show how hard it is to live with a disability or chronic illness. We just see the luckiest of us who can manage their conditions, or have an earlier stage of it. Nowhere does it show us taking cocktails of pills, or crying with pain and frustration. It doesn’t show people isolated by lack of mobility, or struggling to get in and out cars or bathrooms. It doesn’t show people being rejected by medical professionals, by employers or other people.

We are invisible.

It’s 2017… No one should be invisible.

 

To Be The Unseen…

I dearly wish there was something out there I could read or watch that showed how to deal with not knowing what the hell is wrong with you, whilst medical practitioners ignore you. I’d like to know how to deal with insanely intense agony every second of my life. I would love one of those little “Tip” boxes that appear in magazine articles about how you cope with not being able to move, and being trapped by your own body. I’d like to know how you manage when everything you loved has been taken away from you.

I’d like to see someone reflect my own agonies, inside and out. In that NCIS: LA episode, I saw a little of – because she reacted in just the same way I do. When I realised that, it occurred to be that I had no seen in previously – not in the last 3 years and 3 months I have endured this have I seen true representatives in the mainstream media. Nowhere can others see what it is really like to live like this, when you’re struggling and a victim of your own body and circumstance. Nowhere can anyone find information to obtain some empathy and insight regarding what people with disabling or restrictive conditions go through.

Effectively, this is also how the government of this country still manages to make us the “bad guys”, scamming the system – because no one understands what it’s really like.

So far I have, over the years, seen a great change in depictions of certain things in the mainstream media that I have suffered with, including focusing on cancer (which family members had), depression and mental health issues, and even Autism. No longer are these three things taboo or frightening words to the world. These are not the things I am ashamed of – and I’m quite proud of my AS and the abilities it affords me.

But this… This – whatever it really is in the end, and frankly I would prefer Fibromyalgia above all else possible – is what I am ashamed of. And I don’t know why I should be. I should not feel bad, or guilty, or apologetic, or ashamed. Yet I do.

Perhaps it’s because it doesn’t really have a name yet – when you haven’t tested for anything, you cannot call it Fibromyalgia. It’s only probably that because everything else has been ruled out and is impossible. Nothing has been ruled in or out for me yet, so I don’t know. And what’s worse is that I don’t know if it’s something else, either. A couple of pokes and the same blood test repeated 3 or 4 times is not diagnostics. It’s just a waste of resources.

The bottom line is, I just want to be me. That could be me with everything I used to have, or me being restricted and not really able to walk properly and in pain. But I’d like to know what being me is, and a part of me is this… thing. So I would just like to know what this thing is, so I know every part of what I am. It makes things easier – the harshest truth is better than the softest lie because it’s the truth. And that’s all I want here.

To go with it, I’d also like to see that we are no longer invisible. That we are not shameful or taboo. We’re just here, we are a fact, and we just want to be a part of society – not ostracised (both in our day-to-day life and in media/fiction). You don’t need to feel guilty we’re here. We shouldn’t have to feel guilty we’re as we are. So why is this going on?

You’ll probably happily talk to me about relationships, work or sex, but not about this condition or illness? Why? It really probably should be the other way around… I know what I’d rather talk about with someone…! I would rather educate someone about my illness than have them scared about it or too “embarrassed” to ask. Surely it cannot be more embarrassing than talking about sex or problems at work? It’s not even an embarrassing thing – and I shouldn’t have to feel like it is, either.

I am not so terrible for having some condition. I am not so changed because I have it. But what can change is perception. It’s isolating and lonely. Openly talking about things, not being afraid, not being embarrassed or guilty or ashamed, not openly avoiding it, not allowing it to be the “elephant in the room”, or just avoiding me altogether.. that’s what makes things wrong. It would be so much easier just to have understanding, patience, support, and openness about it, then just leaving it be and getting on with everything else as much as possible.

Share and support. Humanity and empathy. Acceptance and care.

It’s should be easy… Right?


Stairlift To Freedom


The Young, The Disabled… And The Ignored

Stereotypes. In this day and age, how do we still put up with people using them without a second thought?

It has, quite honestly, absolutely astounded me that there is little, if no, resources geared for young(er) people with mobility problems and disability.

Since this has started, I have been constantly disappointed in regards to the availability of products suitable for a young(er) person’s life and lifestyle, and almost made to feel as if I should not exist, being a young(ish) adult in her 30s requiring help with my mobility and my ASD. Instead of being catered for – or at least being accepted – I have felt that I “shouldn’t be allowed” to be the way I am.

People in their 30s should be fit and healthy, in the prime of life… Except… Some are not.

I have noticed there is awareness of children requiring assistance – especially with ASD. After the age of 18 I think people and professionals think it magically disappears. I’m fairly certain that they also imagine that no one has mobility issues until they reach the age of 60.

I have been requiring to shop for mobility aids, for disability-friendly products, for wheelchairs and a stair lift. Not one of them has any product, marketing, nor packaging that is actually realistically aimed for young(er) people who want to be acknowledged, with interesting, colourful, playful, and personality-filled products. In fact, older people would probably appreciate such things too… but young(er) people are less likely to accept such a thing.

I have my wheelchair and two walking aids. They were boring, but now they’re covered in stickers – the easiest thing I could use to give them some personality. The new stair lift will be given similar treatment, although I managed to find a company that did one that looked more like it belonged in a pretty, minimalist loft apartment or office, rather than a boring and institutionalised nursing home. It’s also well-made and expertly engineered – I was quite impressed by the sample of rail they showed… made with British steel and made with beautiful precision, and also felt beautiful in its elegantly designed simplicity and thick, cold sturdiness.

The only fly in the ointment was that all the marketing – from the website to the brochure and the DVD was geared towards the older generation – around the late-50s was the youngest that appeared in any of them. It makes me feel like I am… not welcome… to use their products. They’re not for me, or anyone who isn’t “older”. I’m in my 30s… media and marketing makes no room for me in this world – I should be young, healthy, be out running and driving cars and playing with children. I should not be struggling to stand and walk, unable to get up and down the stairs.

Except I am. And many, many others do to. Young people get ill, contract diseases, are diagnosed with conditions, are in accidents – and then subsequently require mobility and disability aids. Companies and manufacturers should have more innovative and interesting products that are as decorative as they are functional – like the Blue Badge Company. Although they, like the others, can fall into the “old is disabled” stereotype when it comes to using featured models (although they use almost no people at all when photographing their products), what they do achieve is having an interesting product range that ranges from beautiful to fun. If only other people realised they should do the same thing…

These products offer the option of independence, of living life to the best of your ability, to overcoming whatever difficulties you have. All the things a younger(er) person requires if they have any kind of restrictive condition – if anyone does need a more independent life, it’s someone that’s barely lived long enough to really have a full one yet, and in some cases, been struck down and is only accustomed to being fully-independent.

I personally expected (naively) to have relevant things that I needed designed to be aimed and marketed towards people other than those over 60. I’m rather put-out that all packaging and marketing features only older people, and that I have to cover everything in nerdy stickers to make them interesting and fun. I’m annoyed that no young(er) people appear on any product to do with mobility and disability, with no advertising or marketing designed for young(er) people.

It’s quite frankly about time this was rectified too. In this day and age of understanding, equality, and levelling the playing field of life to all, this should be a focus of companies who design, create, and sell these products designed to assist with more intendant living. Taking the “dis” of of disabled.

They should be also focusing marking and products for young(er) people. There are (unfortunately, perhaps) many out there – many who would love the opportunity to select a wheelchair blanket with a nice 20-something person appearing on the packaging, or someone in their 30s using a dressing apparatus, or walking stick.

But until they do, I shall have to continue covering everything in nerdy stickers. I hope Amazon continue to have a never-ending supply…!

 

Customise

 

The Truth…
Of course, we all know why this really doesn’t happen – our (pathetic) sensibilities mean we simply can’t bare the thought of being actually faced – bombarded and horrified – with the image of young and disabled people on advertisements and packaging.

Who could possibly cope with the awful images of a young and pretty 25 year old woman in a wheelchair, or with a prosthetic, or perhaps the crippling arthritis she has to endure? Who can possibly cope with seeing an 18 year old young man with a prosthetic leg, or permanent limp use a cane? How on earth could anyone endure having the sensibilities tormented by facing the reality someone in their 30s could have MS or Parkinson’s, seeing an advertisement of them using a bathing aid or transfer board?

The fact is our naive little society would like to continue the myth that only old people get frail. Or disabled. Or chronically ill. They do not want to be faced with the daily reality that young(er) people require these things as well – and would like to be included in such things. Not to be ostracised, or brushed under the carpet. It should be normalised that this is how things are, and marketing should a big part of that.

We buy them, why can’t we be a part of the inspiration behind creating and marking them? Why does it all have to institutionalised and boring? Everything is plain, or grey, or looks like it belongs in a community hospital or nursing home… not the real home of a 30-something nerd who loves fun geeky things, computers, games, horses, and Harley Quinn.

Get a stairlift company to think outside the box and make it look like the Batmobile, or entirely in bright baby pink with fluff. Or create decals and covers especially designed for the chair. Walking and dressing aids should be able to be dressed up and be personalised. Wheelchairs should have “skins” made for the frames (those pretty, specially-designed stickers, like you can have for phones and games consoles), so you can customise your wheels to whatever you please with appropriate products that are made to fit. Do the obvious and put mermaids, fish, bubbles, beautiful sea and beach designs on bathing products.

We decorate and customise all of our things these days. It’s what we (the young[er]) people do. We want things to be just for us. Individual. To our taste and to accent out personalities. I’m a Goth and I love the skulls Blue Badge cover from Blue Badge Company (although it’s actually a “pirates” theme for children – and entirely ineffectively marketed – because I love it… as would other skull-loving Goths I’m sure). It makes me proud to display my badge because it absolutely suits me.

You know what we don’t want? Your pity. Your fear. Your disrespect. We require respect and acknowledgement of who we are, not what we are. We might have difficulties and restrictions, but it’s attitudes that disable someone. We are young. We are in need of these things. We deserve respect and acknowledgement as consumers, as customers, as people who pay out for these things. Ergo, we should be able to expect the full montyto be a part of it, and thusly be a part of the design, the marketing, the packaging… and not be put in a corner and ignored.

And how is it that our society can be so afraid of seeing the truth… and that young(er) people are not always so physically perfect…? We are not always those pristine, toned, healthy, slim, smiling creatures in jogging or car or Bodyform adverts. Sometimes we require Tena and can’t walk. Sometimes we have difficulty managing in the bathroom and with dressing ourselves. Sometimes it would be nice to see someone else just like you, in the same position, in an advert or on packaging relevant to you and what you need to buy.

Personally, I am always especially put off when forced to be confronted by old(er) people in these things, not because I’m afraid of getting or being old, it’s because the marketing and picture given to me is so entirely irrelevant, it’s a 180 from being relevant at all. That is not me. I’m in my 30s and a Geeky Goth… not 78 with a hip replacement (although if the person was 28 with a hip replacement, I could identify with that).

I want to see something relevant in these marketing options… and I absolutely do not care if someone feels “uncomfortable” in seeing, and being reminded of, young(er) people with restrictive difficulties. Tough. I have to live with it – I do not understand why it should affect some stranger walking past a product with such a picture on the front.

Frankly, it’s about time this society stopped being afraid of “disability” and truly embraced it as something “normal” … because to so many of us, that’s what it is and had to become. We shouldn’t be different – we should be the same, but in our own unique way.

And it’s about time everyone else realised that too.

… Especially you, Marketing and PR guys for mobility and disability products….

 

stupid-people-shut-up

 


All Pain, No Gain?

It’s easy to believe – too easy sometimes – that the actual entire universe is against you no mattter what you do. In fact, the more good you try and do, the more it punches you back in the face. Perhaps this is especially true if you’re already struggling, and you just want that one day, or one time to go right. Except it doesn’t – and not only does it not go right, it actually goes spectacularly wrong.

I find it that every time I want to do something good for myself, I (effectively) get punched in the face for it. Every time I try something positive, good, enjoyable, I Nobody_Will_Hit_As_Hard_As_Lifeget knocked down. I end up writhing in pain, on the floor in unbarable agony – or I am somehow flung into an unimaginable nightmare of a meltdown that never seems to end. I genuinely left to wonder why… Did I do somthing wrong, against the Universe? Did I break some cardinal rule of the Fates in having a good time? Just why am I on the floor, literally screaming in agony, after doing something good? It’s a question I am constantly battling with.

The fact I cannot seem to do anything without dire concequences rests heavily upon my shoulders. I know I must weigh up every single thing I do against the pain I will have to endure in concequence. From getting up to fetch something on the other side of the room, to going out for the day to do something nice like shopping or to the cinema, must be carefully considered because of the enormous quid pro quo: “You get to go out; I get my agony”. It’s either hours of agonising pain or a meltdown. It’s usually both. Triggered by each other, plus absolute exhaustion. There seems to be no way around it… No matter what I do.

Yes, it’s part of having a chronic illness; a condition that will literally never let you sleep (or lie down, sit, stand, or breathe) easily. It’s just an is. But it’s so very hard to see it as just that. Too easy to see it as the universe being dead against you being even remotely related to happy. It’s easier said than done to see it in a different way.

Because I cannot use normal painkillers to help me deal with the Fibromyalgia, I rely on Pregabalin and stubborn will power to overcome the pain – ignoring it as much as possible is the closest thing to a constant analgesic that I have… and ergo that defense is easy to breach. When the pain does come, it cripples me inside and out, thus I always weigh, analyse and constantly re-decide what I should do… So, I rarely go out. I rarely leave my room. I rarely do anything at all. Much to my detriment.

I have Asperger’s, so I’m not all that enamoured by frolicking amongst people. However, doing certain things are just quite vital to me being me, and this constant fear I now have about “being punished” (we’re calling it that for now) for it makes me just not want to do anything, even the stuff that I love. Take today for instance: I went out to the cinema to watch a movie that I had a really great time watching. I drove to the nearest IMAX, about an hour away and enjoyed late lunch/early dinner before the viewing. It was a two-hour movie, and I did not drive back because I can’t drive in the half-light of dusk. By the time I got back, I could barely haul myself out of my chair to get into the house with my ti-wheel frame… then I collapsed on the stairs I was planning on crawling up back to my room.

The pain wasn’t even in sight of the ten-scale. It was way, way off, enough to make me scream (and I’m fairly used to this crap by now). It was bad enough to require two shots of cognac and a glass of wine to make it subside enough so I could actually breathe. It took a long time of lying still to come round from it, and gather up the courage to get up again. It took the stubborness of ten bulldogs to get myself crawling up the stairs and into my room. I’ve had another extra glass of wine, and it still hurts – but it’s down to about an 8 now, which I find almost tollerable these days.

All this for the sake of going to see a film I wasted 2 hours of petrol and about £20 on seeing (if you include the popcorn & Sprite). Was it really worth it?

I honestly don’t know how to handle this about myself, about this condition. Both my conditions really – a flareup of one will always set of the other in some way. I don’t want to stop doing things… like moving, breathing, going out to see good movies… but I do not want such horrific concequences every time I do so. How can I possibly tell myself that going out to see a movie is a good idea, when I have to go through that after? What is the point of going for “a nice day out” or “a good walk” (OK, “wheel“) if that is what I’m going to be facing after? It’s no longer really “a nice day out” anymore… Certainly not for me anyway.

I’m not quite sure if it’s stupidity or stubborness that makes me go out there when I do, knowing what is going to happen afterwards… and always rather rediculously hoping that this will be the day I do not get it. The movie today was good… good enough I’d probably say it actually was worth it. But those are very few and far between. I would like to go and visit places, but the thought of having to endure what comes after makes me cowardly shy away from even trying.

Am I being punished for trying to do something other than be ill? No one can explain to me why I even have this condition in the first place, let alone why I would be “punished”. There’s never a break from it if I do go and do something… the only resemblance to maybe 20% of what might almost constitute a break is when I’m sitting down on my beanbag doing nothing. Not a single thing. Bored out of my brain.

There are times I do the self-pity thing of “why me, what have I done to deserve this…“, but to be honest, there would be no answer that would even be good enough anyway. For each and every thing, every choice, every movement, each decision must be weighed on its own merits, and the decision has to be lived with… and I can’t really win either way anyway, since I’ll get almost as much pain from sitting still and doing nothing, leaving my legs to cramp and stiffen. Few things are genuinely worth the effort, making my already rather short outing list even shorter.

I do wish there was a way I could look at it that was philosphiocal… something other than it just is. Acceptance without explanation isn’t really in my vocabulary. I wish I could think of the fact that “at least” I did such and such. But I don’t. If I’m going to feel that much, then it needs one.If I’m going to face something I’m that scared of (and I’m scared of that much pain), then I need a good enough validation for it.

 

But instead of answers, I’m just left with questions and the great unknown… “Why…?

Not A Challenge


Never-Ending Nightmare

image

 

I cannot even explain how exhausted I am. Meltdown after meltdown – horrific ones – just don’t seem to ease, running into each other, causing complications that cause even more… It a nightmare that doesn’t seem to end. Pain, confusion, exhaustion, [on top of my usual] fatigue, disorientation, pure terror.

All apparently starting from a generic cold/fine virus I got… which  I completely missed, because the symptoms are just like a Fibro flareup: extreme temperature changes (often caused by my pain), aches, stiffness, fatigue. But the grogginess and disorientation that came with it should have been warning flags. The unfortunate thing was I was also in the middle of a rather big flareup at the time… It’s all been a nightmare.

I “black out” during meltdowns. I have no idea what’s going on, what I’m doing, what is happening around me or to me. I also don’t remember afterwards what happened either. There’s simply no memories being put down, so I haven’t a clue. This time, after I didn’t “come round” properly from it, I though it strange… then after a while I found bumps on my head, and when someone checked my head, found the top of my head not only had a few big bumps, but it was also bleeding from some cuts on it. Then I realised what was wrong with me… and old memory and familiarity: I had concussion. Groggy, slurred speech, confusion, disorientation, sleeping constantly (I never sleep; even at night I barely sleep)…

I’d been through this when I was 16 and had a horse riding accident, banging the back of my head quite badly and knocking myself out for a few seconds. I fell off backwards, hitting my head first and hurting my neck while I was at it. My back, hips and sacrum came down next, damaging my lumbar area. The cost of that accident has been lifelong… and the memory of concussion was one of those. It was a jarring realisation, but at least I knew what was causing it.

I’m lucky my mother’s a nurse. She checked me out, was happy(ish) with what she saw – pupils reacting and even, BP normal (for me, anyway), pulse fine, general consciousness OK apart from grogginess and some confusion, memory was OK (didn’t forget what was going on, meltdown notwithstanding). If she wasn’t concerned then I was not either – although to experience the side-effects is pretty scary. But I’m experienced enough after working as a Nursing Assistant/HCA for many years to know what’s right and to trust your nurse, and she is definitely one of the best (no I’m not biased, I’ve worked with many of them over the years and just know a good one…!).

 

Learn The First Time…

This same thing happened before, with the due to the very same problem. I missed it again, and I wasn’t looking after myself very well. I missed another trigger-point, the warning signs, everything.

Now there’s a new(ish) “rule”: Juiced drinks or smoothies every day, especially smoothies including vegetables and extra minerals if unable to eat properly (the pain depresses or muddles my appetite quite often). Back in London, I learned to use this rule and stuck rigidly to it, and my health was pretty good. I didn’t miss a day of anything from cold/flue viruses for the longest time, and even my asthma and temperament were better regulated. This is now being reinstated – I’d rather be healthy and broke than go through this again. Ready made pure juices smoothies like Innocent, Cold Pressed, Tropicana, etc., are difficult to afford but are clearly vital.

It’s hard to learn the triggers – I’m not exactly an “old” dog, but after spending over three decades trying to ignore and deal with certain “idiosyncrasies” of myself, it‘s so very hard to realise I have to be very aware of myself, and to understand that I can no longer be complacent or dismissive of them: they’re signs and “idiosyncrasies” of the Aspie in me, and they need to be looked at and checked for general trigger points. Illness has always (unknowingly, but quite clearly in hindsight) been a big trigger point for me. Add that to already learning to deal with another illness, a severe and debilitating condition, and it’s just going to be bonfires and gasoline. Taking the viruses out of the equation is an absolute necessity. One horrible illness at a time is enough for me, thank you very much.

 

Learning Curve

Learning all all these things comes at great cost. Emotional turmoil. Relationships. Exhaustion. Coherency. Injury. Concussion…

It sometimes just doesn’t seem fair that it’s possible to leave and ignore someone with such difficulties without assistance. I’ve been ignored or dismissed, or just lost in the system, my entire life – and it’s no different now. When I was a child no one had even heard of Asperger Syndrome. By the time I got the diagnosis I was too old for help – the buzzwords surround only the children these days, and adults are ignored. It’s even worse in North Wales… Everyone is ignored. Even the NAS (National Autistic Society) has virtually no resources invested here; everything is down the south coast, around Cardiff and the Brecon Beacons. They can’t even answer the phone.

Don’t even get me started about the local NHS and Betsi Cadwaladr health board… They haven’t even heard of their own backsides, and are medieval in their treatment of any psychological/neurological/mental health situation. But then, North East London Foundstion Trust was worse… so it seems a little petty to complain. At least coming to this area was a microscopic step up, though I miss my old GP immensely. He was a real gem when this all started and went to hell in a hand-basket.

This learning curve is painful. Physically and emotionally. It’s destructive. It’s mistake after mistake… A never-ending nightmare of never-ending meltdowns. Exhaustion, pain and confusion causing such extreme fear and terror they cause unimaginable meltdowns that are clearly very destructive. I am apparently can pose possible danger to myself and others, frightening me even more – so not helping there, becoming a trigger in and of itself. I am lost and I do not know what to do.

I have more coping strategies. I have more information. I have piles of beanie toys, which help me try and stay calm and comforted. But there are always new or unexpected triggers. Or everyone else is tired and not able to deal with me. They’re mean and get horrible with me, making it worse, escelating things, scaring me even more. I feel so alone, even more so when this happens. I have nowhere to turn and no one to really talk to, no one to help, no one to give guidance regarding understsnding my ASD and how to deal with it and Fibro.

The meltdowns were actually quite well controlled until I got ill [with cold/flue]. So I feel really bad it slipped past me – yet it may not have if I wasn’t already in a horrible fibro flareup already. But that probably helped cause it, destabilising my immune system and not allowing me to eat properly. I did not turn to juices/smoothies to increase my nutritional intake, and thus became ill. When I was reliant on them I had no issues – somehow the significance of this fact passed me by, not equating it to being able to help me now.

All I can do right now is hope that each costly mistake will have a return for the cost. That lessons will be learnt, better strategies or help will come from it. That there will be something to offset the hefty price. I’m currently paying for it with nightmare days, broken relationships, a broken family, multiple seriously-painful bumps on my head, multiple cuts on my head, concussion, emotional fragility, inability to cope, mild depression, suicidal thoughts, extreme pain, feeling confusion, feeling lost and alone.

And no, I still haven’t received any help. But then, I never have… so I hardly expect any now.

I keep asking, keep looking, keep hoping. But I’m starting to see it’s really nothing but a futile idealism now.

So I just have to keep paying the price… But my account is now severely getting into debt…

 

KeepGoing

 


ID Me… Where Did I Go?

 

… Who Am I?

 

Onset of any Chronic Illness destabilises everything; it changes everything.

Your whole life will never be the same again.

To survive, you need to accept, adapt, to keep moving forward – like a shark, if you stop swimming, you stop living.

Now you need to ask youself once again…
 

Who Am I?

 


 

 

 

http://confinedtosuccess.com/how-to-deal-with-an-identity-crisis-when-chronically-ill