Tag Archives: fibro

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
Advertisements

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…​

20141027_000017000_iOS

 

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…

lenovo-yoga-book-windows

 


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
img_0896


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.

 


My ASD: Mistakes. Are. Bad… Very. Bad.

I’m not even sure why they even exist… but these physiotherapists are just such a waste of time. She screwed up again – and I pretty much had a meltdown about it, also causing a big set of severe Fibro spasm attacks. Hoorah

After going to so much trouble to get the right date this week so my mother was here with me, the damn physio wrote in the wrong date anyway into the diary when she got back, and after waiting and waiting and waiting, I only find this out after I call when she’s an hour late. So that’s two ruined days because of her, which has just sent an already troubling and difficult week into a horrible tailspin.

It is clear that no matter what acts or policies that are in place, nobody cares about how they treat you when you have ASD. It’s OK for them – they’re not the ones who have to deal with the meltdown (or at least severe anxiety attack) that is the result of this god-awful thoughtlessness. After trying to deal with it all afternoon, I had an anxiety attack and mini-meltdown later on in the evening, after that panic built and built and built. It in turn ended up in a series of severe spasm attacks that were horrific and painful. But she didn’t have to care about that, did she? No. She could be ignorant of it, never know about it, never need to care about it. It doesn’t affect her. So why should she care, right?

Apparently, that’s how they all think. It’s certainly how they all behave… And it’s just horrible. To the point of being traumatising.

20160920_173759000_iOSWhen appointments are made, stick to them. Don’t be late. Call if you’re going to be late. Isn’t that “NT” politeness anyway? Well, it’s vital in my world. I’ve already had PIP mess me around. I’ve already been thrown into hell with the isobars down at 1000mb level, unable to even breathe sometimes it’s so painful. I’ve already had a hell of a morning, starting with 3-4 hours of going through the motions of trying to get up – yes, that’s how hard it is. And I’ve had to get up super-early so there’s enough time to do all this and regain an equilibrium before the appointment…

And then after all of my efforts I find the physio didn’t even try to get this right. After we brought out the calander and showed her all the dates my mother was available. She still couldn’t get it right. The emotional turmoil of this, of all my efforts for nothing, that the fact she could make such a mistake that cost me so much… It’s just too much to bare.

There’s also the other point that I cannot even begin to cope with changes… as well as the horrifying realisation that she probably didn’t get the message I left with their reception to cancel the appointment she wrote up, and that she might come tomorrow anyway. When she wasn’t supposed to. When I told her not to… And then I have to cope with that thought, with that change, with that intrusion, because she wasn’t supposed to come tomorrow… It’s horrifying to think that she thinks it’s OK to put me though such a thing, just because she can’t concentrate long enough to put the correct date down. It seems so unfair. It’s not like they don’t know I have ASD… They just don’t care, or have a clue about it. Or care to have a clue about it.

Proving legislation and policy  is a complete and utter waste of time.

Tomorrow, either I’m going to be home alone when she comes, or my father remains here with me instead of attending his weekly visit to see his elderly mother. I don’t understand emotion generally, but I know that uncomfortable feeling of guilt. And that last option makes me feel a lot of that. The former terrifies the bejeezus out of me – I have no intention of being there alone with her. I’ll either say nothing, or say precisely what’s on my mind… which I’ve learnt that NTs do not want to hear. Apparently they’re allergic to the truth. The polite fluff they engage in is still beyond me, even though I generally attempt to emulate it. Probably quite badly, but hey… at least I try. Which is more that can be said for the other way – not many NTs [professionals] try to understand ASD-Land at all.

Like the physiotherapist. And PIP.

GrumpyBearI am “ranting”, but it’s so very horrible. “NT” people never seem to understand this – although some at least accept it. I’m terrified of tomorrow (and that’s actually an understatement), and the fact the isobars are still on the floor are not helping. It’s going to be a long morning, at the end of which, I have to call the receptionist back tomorrow to verify the appointment has been cancelled and the physio is not coming. She was supposed to call about it (the physio, that is) and reschedule, and she never did. With that evidence I can only conclude she thinks she’s still coming here. It seems that if she has a mobile phone, neither her receptionist nor myself have the details of it to contact her directly when she’s out.

I knew they were a waste of time, but since the initial attempt at contact was a farce. It’s not ending, either. It still is. I can’t see any reason to continue with this – it’s one extra burden I can do without, given there’s no payoff from it. I’m already ahead of her game, and so far she can offer nothing better. So I’m wondering why I’m spending the effort of enduring hours of pain and torment to get up in time for her to come, when she’s not actually even coming in the end, because she couldn’t do one simple thing right – write an appointment in her diary on the correct day. And repeating it all again in case she turns up tomorrow. It’s harrowing.

I really am honestly scared of facing tomorrow. I hope I get some sleep… It’s “only” 1:49am as I write this now. And there’s a long night ahead…

 

A Question of Sanity