Tag Archives: paraesthesia

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
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Combating The Cold…

After spending perhaps about two and a half months downstairs, I really want to go back up… but it doesn’t look like it’s going to be an option just yet.
It’s a Catch-22 situation – it’s so cold down here I need to go upstairs, back to my tent and my computer, but I can’t get upstairs because the cold is searing my entire everything and turning into solid spasms of rock-hard stiffness and making me ill… and then because it’s so cold I need to go upstairs, but I can’t…. and so on, and on, and on… So, obviously I’m stuck and getting nowhere fast.
However, there may finally be a solution to this… Today, I had a brainwave and thought that if I’m that cold, then I should get something made to keep me warm – a really puffy
and special sleeping bag created for literally freezing weather.
Ayacucha Sirius 300 Sleeping BagThe Ayacucho Sirius 300 is a really warm and cozy bag, capable of keeping you warm and toasty in temperatures down to -6ºC. So that should be warm and puffy enough for down in the living room! It also means I don’t have to have the fire on, or hurt myself trying to keep it going. This bag is immediately keeping inside my bones and joins warm and happy. It’s not just superficial warmth, and goes really deep like the fire does, and just sitting on it, on the open inside, is making a huge difference. On a basic camping mat, just keeping it up off the floor, it’s really great. And amazingly really warms my bones so they don’t hurt so much anymore.
It’s pretty great –  and it might make absolutely all the difference in the world tomorrow morning when I wake up. This morning I couldn’t even move on my own and I was in agony. I’ve been in hell all day, in a hell of a lot of pain, and even in a spasm – but when the bag was put around me during the spasm it really helped stop it from escalating, which it was doing quite badly until then.
I’m not comfortable right now, to be honest… I’m having a flareup with a hot flush (although I tested my core temp with a thermometer and it shows as being just 35.8ºC, which looks so strange, given how very feverish I feel!), I am having really strong palpitations (probably quite tachycardic), I’m quite discomforted in my own self, in quite a bit of pain, agitated, pretty bad sweating (I really hate that bit the most), and my face and teeth really hurt… basically, I’m not well, and probably because I overdid it today.
I went out for the sleeping bag and stuff, and then tonight I finally went for a shower (it’s impossibly hard to have showers with this much exhaustion and fatigue), with the idea (if the sleeping bag idea works) of dying my hair tomorrow. I’ve got 4-5 inches of badgering (that’s what I call the regrowth because with the white/grey and dark brown hair I have naturally now looks like a badger), and the hope is that the sleeping bag warmth will allow me to get up and do so. I’ve been waiting to do this for so long, it would be nice to finally get this done.
It’s been a hell of a couple of months… I do hope this is the start of something at least a teeny bit better.
Ayacucha Sirius 300 Sleeping Bag
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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.

 

 

 

 


Oh. Dead. Lord… I’m Surrounded By Idiots…!! 😣😱😤

I just don’t know what to think. Or how to properly identify or deal with these feelings… Incensed? Angry? Horrified? Hurt? Sad? Violated? Victimised? Traumatised? Grief-Stricken?

Who knows…? I certainly don’t.

The PIP Fiasco Continues still… I read the full case notes the unebelivably horrible woman I saw at PIP wrote… and it’s vile. And lies. And I literally cannot believe it. As in it’s unable to be fathomed.

After all her (turn out, disingenuous) pandering and “Oh dear!”s throughout, serious nodding, and looking very sympathetic, it turns out she was writing mainly made up crap and copying and pasting the same sentance over and over again. Typos were everywhere, the omitted “not”s in can not as well as the “un” in unable. She made it look like I was a step away from being perfectly fine and perfectly able to practically hack myself into the Pentagon… It was just such a load of crap it was rediculous.

She was in a rush when she wanted to write it up (quickly, of course…) and just made up crap about me. Withheld vital information, omitted context, and even didn’t acknowledge my mother was right there with me, helping me work out what she was saying, communicating my difficulties, backing me up. And she even spelt my mother’s name wrong, even as my mother spelled it for her. Astounding.

Incensed (I think), I spent four days creating a 25 page rebuke with long lectures about victimisation and outright lying and omitting relevant data. It was detailed, concise and at least true. Let them put it before a judge were they can see and make a decision themselves, with firsthand interaction with me. I’m much better off. I was last time, they kicked the PIP and DWP’s assess and gave me a monumental backpay.

It took them over 6 months to get me an appointment (4 months later than the maximum target they themselves have, very clearly stated on their own answer service). But because DWP will only pay backpay to when the appointment was, that’s all you get. So I got one month backpay, even though they sent me that damned form to fill out back in January. I hate them all… They’re just *insert many expletives*…

It hurts to be victimised like that. It was horrible what she wrote and how she wrote it. Saw she added things in about how I could do this or that when she could see I couldn’t. Outright lied about other things, and (hopefully) misspelled things without “not” and “un” (as abovementioned).

So I hope they suck on those documents I sent back and choke on them… They hurt me badly, and the stress has already greatly impacted the severity of all my conditions, and I literally cannot cope. The entire thing makes no logical sense, or even is within bounds of basic imagination… And frankly, if you’re going to screw me I’d like at least one drink first and a bacon sandwich after.  But not this.

The one postisive side was she was forced to give me “Higher Mobility” because I have to have round wheels now instead of using my legs. With that I get a little more money, but there are other benefits like being eligible for Motorbility, or getting 100% off car tax on a normal car that’s used for you. So we’ve used the car tax discount for now whilst I research what benefits Motorbility offers instead that’s any better (if there is anything better they offer) than what my parents do now with their cars, and whether it’s worth losing that money to them in lieu of a (hopefully) suitable car. Since I can’t drive, this may not be of benefit right now.

On top of that, I’m still also trying to get some sense out of Ableworld Specialists regarding my chair (Friefly). The Sales Rep (who told her it was simple to email her with other requests) refuses to talk to me nor answer her emails. She’s made a mistake with the Centre of Gravity (COG) on my chair, as well as the length of the seat, and now she refuses to acknowledge me.

The one and only time I got her on the phone she spoke with brusque, rude, and semi-indignance (I think – I know it was rude) and barely even discussed it with me. Ironically, she had a rebuke about changing the COG and tipping too far back, when the reality is because it’s too far back I tip forward because it isn’t balanced. Since it’s not her sitting in it all day every day, she should really listen to the person actually in it.

So I sent a complaint directly to customer services. And because she never answered my last email, I’m naming names, because I’m tired of chasing her unprofessional ass through Kingdom Come and back. It was a fairly extensive and detailed email, and I’ve told them to reply within a certain time, with the BHTA to come if they didn’t fix it. So I really hope they do it, because I don’t want to contact even more people.

This is already far and away too much

 

 

 


Silent Suffering, All Alone…

Does the grief ever really go away? The one you feel from all that you’ve lost?

The shame, the humiliation, the degradation, the demeaning secret truth of the life you have to… exist with… it just never seems to become “OK”.

To lose so many of the general functions you were used to your body doing for you, that you took for granted… does that ever really become something that’s really “OK”? You lose so much… I’ve lost so much… It’s not OK. Not even close.

It’s hard to know that the people around you just do not understand what you have to deal with… whilst at the same time so relived about that too. But then… they do and say things without understanding the impact on you, or the extent you have to push yourself to meet their expectations, or their level. What I mean is that they just think “popping out” is just something you can just do. Just like that. Or walking just anywhere they want is just fine, etc. When you live with a chronic illness, when you’re living in a wheelchair, when you sometimes can barely breathe because it hurts so much or your just too exhausted to manage it, it’s not that simple. Not even close. Getting out of bed is nothing to them, but to you, that’s every spoon you have and then some. Then they expect you to do even more.

I run on zero spoons. I do as much as I can on it, from going out for the day, to trying to do something normal like reading or reading, to attempting to make some food (which also requires at least one other person, too), but when they’re then a little tired from it they want “a little lie down”… as if they’ve done so much more than you have, expecting you then to do things for them… that really grates on me, and they do it because, quite frankly, you’re so damn used to it and they’re not. You live with the mind-killing exhaustion of chronic fatigue, so you therefore must be more used to it and are OK… Right? I’m not sure what this logic is, but it’s rather mean – and frankly, either ignorant or naive.

It’s not nice when just getting out of bed was utterly exhausting, then spending your day in your wheels, and your (frankly) grown-up Huggies, having no say over when you go or how, and just about able to stop yourself crying from pain or exhaustion or paraesthesia symptoms, or all the above.

It’s horrid when everybody leaves you behind for their “normal” lives, and look on with distain when you turn up in their lives… You’re supposed to deal with it, but Heaven forbid they do for a day or a few hours. What’s worse, is they make their jusgments without knowing the true extent or details… and they really don’t want to, either. What’s worse than the reality of seeing you is acknowledging the true reality of what you have to deal with. And they don’t want to know that… you know, in case it upsets them. Poor, poor them.

It’s hard so see everyone else in your life get on with being “OK” and you struggle to simply go to the bathroom. As your very basic functions, ones that you don’t even remember living without before, fail terribly and leave you stranded back in those days once again… How can you even look them in the eye with your head held high? Siting in grown-up Huggies pull-ups, or giant-tabbed Pampers, knowing they might not even do the job properly, how in hell are you supposed to have any self-esteem left?

I can barely feel anything from the chest, the lower rib cage, down (including not being able to feel the diaphragm), and thus I’ve been left with less and less control over things – first the legs, then a little bit of the pelvic floor, to having no concept of most of my abdomen, or lower abdomen, and my pelvic floor is barely even a memory anymore. Today, a really bad thing happened in this area and it was extraordinarily humiliating, and overwhelmingly shocking – to be faced with the reality of how far my body has slipped from my own grasp has left me reeling and unable to comprehend where I am (figuratively) in my own self, my life, my entire existence.

I’m hurting inside, but again, there’s no one there who really understands what’s going on… and once again I am alone. How do you even explain? It’s horrifying to you, so what does it evoke in other people? If you’re ashamed, what will they think? You can only imagine they would be horrified. Like you are.

I do not know how to deal with feelings. I don’t like feelings. They’re messy, unquantifiable, horrible, uncomfortable, and usually I can’t even cry (which I don’t like anyway because it makes your face soggy). Right now, I have a lot, and I don’t know what to do with them, how to process them, how to manage to get the hell rid of them, to be honest. I think there’s guilt, maybe shame… There’s definitely sad. Loss. Grief. Reeling and shock. But they all get so very overwhelming, and then I get very confused and upset.

In the last few days, maybe a week or so now (I lose track of the days), my hands have started playing up, and started not working properly. The paraesthesia in them is astounding and so painful. I can’t move them they’re so numb (imagine someone tied your wrists so tight it cut off the blood flow and you have them tied up like that all day). They can spasm so badly they curl up on themselves so tightly, they leave deep nail marks in your palms. They can never open out properly, they’re in a permentant “claw”. It prevents me from being able to do even the simplest thing, and also can prevent me from playing games, or even following a conversation because the sensation (or pain) is so bad there is no more room in my brain for anything else. It makes writing [typing] so hard sometimes that if I manage at all, every word has a spelling mistake at best and is gibberish at worst. It’s emotionally painful to endure, to be honest.

I feel like I’ve been left to rot by the system. Everyone has been less than useless. I’ve just been left to my own devices, and I’m floundering in trying to help myself. The diagnosticians throw me to general services (pain clinic, psych, physio, etc) and discharge me to make their targets look good. Those other services have nothing to  offer except inefficiency and long waiting lists you stay on just to see how inefficinent they are. It’s certainly not to be helped by them.

I’m lost, broken and alone, still trying to find something of myself in all this, wondering if I can ever rise to get the better of it, so I am what is driving me, not this.