Category Archives: Ramblings

Tenth Circle Of Hell…

 

 

This may sound too personal, but I don’t really have “normal people/NT tact”… Skip if find “inappropriate” or whatever… But lets face it, we’re all built with the same things at the end of the day (generally).

***

I don’t know why I hope it’s not going to get any worse. It’s as if as soon as I do, it does just that.

There’s no sleep. There’s virtually no rest. I’m so exhausted, yet doing nothing – just breathing is enough to make me feel as if I’ve just run up an entire mountain.

First I lost control of my legs. Then I needed a catheter. Now… it’s peristalsis. Yes, that’s… gross. But it’s scary – I mean, who wants to find out that now those muscles are starting to fail too? I’m struggling – spent the last few days… a week?… I don’t know… in hell where it wouldn’t work and I was in agony. Even the smallest attempt at my body to even try either causes my bladder to contract instead (who the hell knows how that happens – and it’s beyond excrutiating)… and if the mixed signals end up in the right place, even that hurts because any muscle contractions below my sternum is agony in paraesthesia, because of how my Fibro has decided to confuse itself and make me semi-numb from the sternum down.

The exhaustion I already had was killing me. This now… This has really pushed me beyond my limits. I always have to push them, find new ones. Raise (or lower, depending on your perspective) the bar of what my limits are. It seems that wherever I turn, I get punched in the gut, disappointed, not helped, fed to the wolves.

Apparently the CFS clinic the GP put me through to won’t see me because they don’t deal with you if you have a pre-existing condition causing it… despite CFS and Fibro being well-referred to as “Sister-Conditions”, and there is no “Fibromyalgia Clinic” – otherwise I’d bloody well already be there, wouldn’t I? And the most infuriating part? They didn’t eve bother to contact me – they just told the GP instead. Cowards.

I even contacted a neurological physiotherapy company (private) to see if they would at least try to help me, and they just basically said they were unable to help me – despite my basically having the same symptomology as other conditions they willingly treat. I wrote them back and put a flea in their ear, to which they replied they would be willing to put me on their waiting list… Wow, lucky me.

It really does feel that wherever I turn, I’m getting shoved back, ignored, refused. No matter what I do or where I turn… just nothing.

The GP came to see me the other day at home. Out of the blue, without the warning promised. I didn’t fare well… and I’m not sure how well it went. It’s still hard to portray how hard it is to exist in this… situation. I barely made it to her downstairs, and I paid dearly for it after in pain. She claimed she wanted to help. Well, at least someone has said it. Meant or not, who knows. Or meant, but unable to be acted upon. Nothing matters except the results, at the end of the day.

I’m existing in Survival Mode. It’s somewhere I haven’t been since I was a child, and I don’t very much like it. But it is familiar… and there is something comforting about that. It doesn’t does me much good, but it does help me get through this God-Forsaken Hell I am currently living in. It stops me going stir-crazy with distress, wondering how I fell so far so fast. How I’m so far away from everyone and everything I love(d). How lost and bleak I am, that my existence is. How I no longer live or have a life. How I’m nothing more than a walking wheeling/crawling nothing. Nope… I’m not thinking about that. I can’t – or I won’t survive. Who would? I did this when I was a child because that was also a Hell, a crucible I was forced to run for nearly two decades.

Now… Now I just have to do it again. If a child can do it, so can I now.

 

 

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In The End… Goodbye, Good Riddance, to 2017…

It’s New Year’s Eve. The end of 2017… And I’m definitely glad to see it go. This last year has been the year from Hell itself.

It started with agony that could not be compared. With my starting to lose the ability to walk at all. With my losing the ability to crawl up the stairs. With my losing the last few threads of what was left of me.

2017 was the year I stopped being able to walk. To use my legs. It was the year I had to get a stair lift. The year I had to get a “real” and “proper” active wheelchair – something that caused a lot of pain, difficulty, complications, and tears. The year I found out I had been suffering an elusive condition for the last 19 years and it had impacted greatly upon my Fibromyalgia – something no one had ever heard of, called Hemiplegic Migraine… and I found that out on what should have been my late grandfather’s birthday.

This was the year my best friend left for South America, and was no longer here. This was the year I went completely numb and unable to feel anything touching my skin or pain from the outside. This was the year I could no longer stand for a shower or get into the bath. The year where gaming became more and more elusive because my hands and focus no longer worked properly. The year Fatigue came to over-run and ruin my life. The year PIP decided to decieve and scheme and refuse to even acknowledge the difficulties I have by outrightly lying about me in their reports. The year I was betrayed by my own therapist, just the third time we had met, and after waiting over a year on the waiting list to see her in the first place.

This was the year I learned you can lose your life without ever having to actually die.

I started 2017 with the ability to shuffle with walking aids and go for a shower… And I am ending it without the ability to walk or properly move my legs, wearing a catheter, permenently in a wheelchair, unable to go to the shower or get into the bath, barely able to leave my room, struggling to move and sometimes even breathe.

2017 was the year I think I truly died inside.

It started with hardship and loss. Went on to destroy what was left of me and my body. Ended with trauma and being near-bedridden.

On the bright side, I also ended up getting 2 graphic card upgrades and end the year with the GTX 1070 8GB OC. I was also introduced to several amazing games – in 4K High/Ultra, too – and got a Lenovo YogaBook – which is terribly fun to have.

And I got to see The Last Jedi… So at last one good thing happened.

 

 

~ Happy New Year ~

 

 

~ 2018 ~

 

 

 


Fibro Flare-Up

It never ends

More cold. More pain. It’s been literally freezing and being home instead of in the Premier Inn has caused a lot or problems… unfortunately.
If there is a Hell on Earth, Fibro has got to be an entire district.
Inside me, it’s horrendous pain. Crushing, buzzing, snapping electric shocks, stiffness that’s impossible to overcome, feelings of pain I can’t even describe because I have no outside reference. All I know is that right now I’m at a 9.8. At least. I’m struggling to breathe, because as always, the crushing stiffness is also against my ribs, meaning my lungs can barely move. Mucus then builds up and makes things worse, emulating (but not being) and asthma attack.
To make matters worse, I’m unable to change (as in my “Grown-Up Huggies”), and (yes, oh yes, it’s gross) therefore I have to put up with it, without the privilege of being able to cry about it like babies do… I’ll only be able to make that better once the pills and Courvoisier have taken proper effect and I can move a little better again, without enough pain to pass out in the bathroom [again…].
Life also sucks when it takes [quite literally] hours to recover just trying to crawl to the bathroom and back. It’s also not nice when your Pampers are full, and I now understand  why babies cry. Because I certainly want to .
As bad as it was the last time, I really wish I was back in the Black Cat Premier Inn – all is forgiven right now. Did I say I (my parents) bought one of their Hypnos mattresses? Tried and tested in every room I’ve been in, they make everything so much better in just two or three nights. The only problem is they’re apparently handmade and it takes 30 days to make and deliver. That’s a long time of a lot of pain…. Therefore, roll on 27th December so I can finally get some sleep…
I put my courage to the sticking place yesterday and finally finally finished Dragon Age II on PC… Something  I’ve been trying to do for many years now [Character: Seranna Hawke] and Ii managed to do it. And it took a lot of stubbornness and self-medicating, but I did it!
On the other hand,  I still was unable to sleep and I think again went to sleep about 6am again. I  feel absolutely horrible today, another flu-like flare-up common to Fibro, and CFS, and I’m wrapped up in my specialist outdoors -6ºC sleeping bag, trying to ease some of the pain. It’s not doing to badly, either, bringing the pain down to a more reasonable 8 – especially in back and legs and shoulders.
On the downside, there’s a good chance of a full blackout, and I nearly had one, which is disconcerting. I’m horribly uncomfortable (thank you, Incontinence – really hoping will end up with catheter because I cannot function like this – I’m severely dehydrated – My lips are dry and cracked and painful, have to sit in wet Huggies, and am exhausted for hours just from having to go to the bathroom, and often pass out trying), exhausted beyond life itself, and in a heck of a lot of pain – even the touch of my hair feels like stinging nettles everywhere it touches.
Late this evening, around 9:30pm, I tried to go to the bathroom and ended up being such in there for over 2 hours, because I simply could not move. I couldn’t feel anything below my breast-bone – other than some serious paraesthesia in my spine and back of my hips, and so meaning Ii couldn’t move anything either. It took a lot to bring the pain down to a manageable level, then I dragged myself (commando-esque) all the way back to my room. That wouldn’t have been hard before this, but after having a lot of muscle weakness since, it was not to easy to manage. And I now had to do it all oved again not half an hour after I got back, because I had to go again.
Now it’s 4:25am and I still can’t sleep from the level of pain I’m still in. But at least I’m finally back in my room, in my tent.
It’s pretty tough to be ok with all of that.
Sheldon–What Fresh Hell
SLXLM
MXLLS

Unchargable Me

I really hate these flare-ups… Is it just Fibro, or is it more? I’m just so exhausted I can’t think straight, or even at all, anymore. It makes me so ridiculously ill, so tired and drained, so unable to do anything, not function at all.

I am lost inside it. Numb and dead inside with nothing more to give.

Drained Fatigue. Exhaustion beyond all comprehension. Exacerbated paraesthesia or neuropathy.  “Buzzing”. “Paraesthesia pain”. Severe internal temperature fluctuations, like when one has severe fever or flu. Bad Palpitations. Severe Nausea. Blackouts. Inability to wake up. 

Emotional fear. Scattered mind and thoughts. Inability to comprehend even basic things. Even less capability to remember things. No focus at all. Unable to do just about anything. Left with vacantly watching rubbish on TV because can’t focus. High Distress. Depression. Severe Hyper-Anxiety. Terrified – of everything. Overwhelmed. Barely able to move. Unable to function. 

All I do are the basics. Less than the basics. And yet this is still what I have to live with – that and so much more. It doesn’t seem to matter that I try and do as little as possible… I still end up feeling so awful, so drained, in pain. If I try and do more than nothing, then this… thing… punishes me relentlessly, by making everything so much worse.

This makes it so completely horrible, unmanageable, un-livable. I am unable to do anything I want to, and that’s not because I’m in so much pain or can’t walk. It’s because I am so very too exhausted to do anything. There are things that can be done to control pain, Fibro… well, to a certain extent, anyway… but there seems to be nothing to combat inexplicable and extreme exhaustion that’s so bad it makes you pass out. Might not be too surprising that coffee is barely of any use whatsoever, either. So there’s nothing at all to combat it. You really do just “have to take it”. Without a single antidote to be had to help at all.

Sleep does nothing. “Rest” does nothing. How can you even “rest” when everything all around you confuses and terrifies you? When you’re so anxious, so distorted, so “zoned out”, so unable to function whatsoever… how can you really “rest”? It’s like I’ve got a broken health bar… or one from Dragon Age: Inquisition… It just doesn’t regenerate at all. And I’ve got no potions to bring it back either.

Taking me out of the game, for as long as its there. Or maybe, quite possibly, for good.

 

 

 

 


The Debit Card Dilemma…

I’ve already worked out that being an Aspie is weird, in the sense that you don’t do things like other people, and psychologists are happy to say what you do and how you think is basically “non- compliment” to “social norms”.

However, I find I sometimes really do fall down the rabbit-hole and find my brain might have extra-weird things. Now, not liking change is one thing… I think that’s quite normal, for quite a lot of people, not just for ASD. But right now I’m in yet another distressing emotional dilemma because I have to change something that [to me] is a friend that has been with me for three years and now I have to say goodbye and move on to something else.

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I’m talking about my debit card. [Yes, don’t smirk…!]. I have to, this month, move away, and kill, my debit card of three years and start using a new one. With different numbers – on the front, on the expiry, on the back…  And this causes me actual distress – and a lot of concern about the change itself. Adapting to anything takes such a long time, and I’ve already had quite enough of that with everything else in my life…

It always has – whether a new card after expiry, or having lost a card (or had it stolen, which happened twice), saying goodbye and using a new one is a difficult thing to IMG_9721overcome. There is real loss there, disappointment, and the change is contentious and disturbing to me. Yes, I’m probably on this little island all by myself, but it’s affecting me, and I’m having great difficulty making the transition. So I’m “talking about it” to try and help myself come to terms with this… As hard as it is, it obviously needs to be done, and there’s a clock on it – so I have only a certain amount of time to actually try and acclimatise to it.

It doesn’t help that this is coming during what is already a time of turbulence and upheaval – and this one extra [small but significant] change is a final straw on the metaphorical camel’s back.

During this time, my condition is getting worse, my best friend and soul-sister has left for a backpacking pilgrimage to South America for god-knows how long (and it was a sudden, impetuous decision, so I had little time to acclimatise and process that, and I needed to help her, too, because she couldn’t organise her way out of a paper bag and is already regretting not taking my advice about her phone because “she knew better”. She didn’t…), and my little sister [OK, she’s 31…] is about to have her first child (due next week, mid-October). Things are already super scary, and I didn’t need anything else on top of that.

Now I have to give up my card and change that, too? I still have cards from cancelled credit card accounts (they’re pretty and I can’t accept they’re gone – yes, I’m weird…) – I don’t know how I’m supposed accept I have to say goodbye after so long.

20140924_231459000_iOSIt doesn’t help I’m being rushed to move on. GiffGaff [network] systems won’t accept that the card expires at the end of October, not on the first day. So it won’t let me use it for my next payment. Thus, I feel pressured to start using the other card already… which seems highly unfair.

I understand no one else usually feels like this, that it’s just a card. But I don’t like change, and there’s already too much going on as it is that is changing everything. I don’t see why I have to do one more very difficult change on top of all the others. I am aware it comes across as ridiculous… but it’s not like I have a choice in the matter – these confusing things just turn up in my head and distress me greatly. And I have no one to help and understand. Hence, the blog. This blog. This entry… amongst others.

This is a strange thing to admit to, and I’ve spent my entire life hiding things like this. Presenting my distress as something else, or generating it subconsciously into other things, always engaging with depression, fear, heated arguments or meltdowns… all because something small like this was distressing the hell out of me. That is why I have been trying to break that barrier down, and discuss or write a blog about things that distress me, no matter how strange or small, because in this case, the truth really does set me free… All it does otherwise is cause horrible or traumatic chaos.

It’s better just to admit to the weird truth and be done with it – even having people ridicule you, or be very confused, is better than the alternative. Either way, the truth is the truth, and you should always accept and own it. Everything else is a fantasy that will just blow up in your face at some point. So now, I’m admitting it: Having to change to a new debit card is distressing and horrible. So there.

… Now, all I have to do is spend a really long time trying to get used to it.

Oh, dear.

*Sad sigh*

 

 

 

Sheldon–What Fresh Hell

 

 

Out Of My Mind...