Category Archives: CFS/ME

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).

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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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A Little Bit Safe

I’m finally back upstairs now… It’s been about 3 months since I was up here.

After a horrific time at the Premier Inn at the Black Cat, I came home determined to overhaul my room to make it more safe, more “mine”. We changed the room around yesterday, so the TV is under the back window, with the bed almost right in front of it, so it’s like a safe hidey-hole. It was a massive effort, and somehow, I managed to build the TV stand (with Dad) myself – which amazed me.

I immediately felt safe – something I hadn’t felt here since I arrived. It’s pretty amazing really.

Today I saw a new doc at the new surgery… and shares my birth-name, which is a pretty rare one, even in Wales. Like me, she’s also sensible, efficient, and knows what she’s doing, and does it the right and proficient way. She even shut me up and cut me off when I was going on, without apology.

She had a few home truths to offer regarding my tummy problems and my eating disorder(s) – namely that erratic eating patterns, starvation, binging, eating at random, all contributes to IBS problems. Which is obviously very, very true… and she gave me some basic antispasmodic meds to try to see if it helps with any bowel spasms that might be causing a lot of the issues,  given that the spasm causes backlog in the bowel, pushing gasses and yukky stuff back up, and causes bloating and pain in and of itself.

Also, because I have such a bad reaction to gluten foods, she’s giving  me a test for Coeliac’s Disease,  to rule it in or out. Oh, well… it’ll hurt to eat a bunch of gluten for it, but it’ll definitely taste nice!

The main reason to really go, though, was for the CFS specialist team referral. Which she did for me. It’s amazing how easy it is to go to this surgery… I’m so sad I didn’t go there first…​

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Weather’s getting worse now – another reason I hastened changing my room, because the tent now blocks cold and draughts coming up from the hallway downstairs. I’m getting constant alerts for Weather Warnings on my phone, mainly for ice, as temperatures continue to plummet. No snow yet, but I wouldn’t be surprised if we had some.

It’s of course wrecking havoc in my Fibro, and (very unfortunately) my temperament. But that has been somewhat tapered with more calm from changing the room up into a safe little den, or Hobbit-hole. I’ve managed t be inspired to do this just in time before being frozen. Now I’m safe, comfortable and toasty-warm  in my room, and I’m actually happy to stay here for the first time.

To top it off today, I also got a new tablet/hybrid: The Lenovo Yoga Book (2-in-1 2017 edition) today. I’m sick to death of Apple (don’t get me started on them now!) and saw this and thought it was pretty cool and more like what I needed, but also more…  modern, techie, innovative and imaginative.

It also runs full Windows 10, has a hybrid pen that has a stylus pen for on-screen drawing and real ink nibs available to write on supplied special paper, which gets transferred into the system via the pressure plate that sits where the physical keyboard usually is. This plate also doubles as a holo-keyboard, known as the Halo Keyboard. It appears as a hepatic holographic or Augmented Reality virtual keyboard on the aforementioned pressure plate, and takes a bit of getting used to, especially as a touch-typist.

My Dad is getting my iPad, and with it being excellent condition, he’s getting a good deal! Instead of buying a new iPad for himself, he’s got me this, which was nearly half price in the Amazon Cyber Monday sale, at £299 (supposed RRP £549). Hopefully this now means everybody wins…

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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.