Category Archives: Chronic Pain

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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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.

 

 

 

 


The Tribunal Dilema

My PIP “mandatory reconsideration” was a few weeks back now. Ever since I’ve struggled with extreme pain, illness and stress. There have been two huge storms. My niece was born prematurely. I’ve been under such enormous stress from all angles, I’ve just broken down. I’m being tested for CFS/ME. My Hemiplegic (and normal) Migraine is acting up. Don’t even get me started on the Paraesthesia. I’m a wreck, and only getting worse.

Thoughts of a subsequent Tribunal took a backseat. This is not a system that helps those desperately ill, exhausted, crippled, mentally drained and disturbed, or have chronic illness of any kind. This is a system only designed for those who are robust enough to endure it. The hypocritical irony would be laughable if it didn’t destroy so many lives.

Thusly… Now I think it’s just not worth it.

I’ve been asked about it and I’ve thought about it, especially having written my part on the Parliament forum about it. However, how can I justify – and better still, how can they justify – putting myself through applying for a Tribunal, going through the immense stress, strain, pain, anguish, and super-hyper anxiety that would go with it? As one person on the forum put it, the entire thing is barbaric.

However, both the PIP woman and the Mandatory Reconsideration knob lied through their teeth when it came to summarising the case they put forward. How do I let them get away with that? How can I stand by and allow them to desecrate what I endure every moment of every god-damned day? How can I let them be so crass, derogatory, hurtful, harmful, and not put their words and myself in front of a Tribunal?

I printed out the “booklet” for writing up the form for applying to the Tribunal. It’s 35 pages long and just huge. How are people like me, and especially worse, supposed to be able to manage to read that and write up their form? It’s not like the DWP or PIP have people available to assist in writing them out for you… Instead you have to go and hope the CAB has an opening for someone to assist you. Or if you’re like me, write the whole thing out for you too, because [hand] writing is so hard. Way too hard. Typing is hard enough.

I return to Spoon Theory. I like Spoon Theory because it makes sense, it’s logical and it’s about number and not feelings. I am in “Spoon Bankruptcy” right now – if it were a currency, I’d be homeless and living in a box.

I don’t even have the Spoons to even go to the bathroom, I need help with even that now… So what Spoons do I possibly have to concentrate, study, and then write up the Tribunal form… even before the anguish and stress of not only waiting for the reply, but then having meltdown after meltdown worrying about it before I go, more meltdowns after I’ve been, and then more after that as I wait for the result. And no matter the result, I’ll have a meltdown because of it – because at the end of the day, it’s emotionally all too much.

This system wasn’t built for people like me… i.e. the chronically ill. You know, the people it’s there for… We struggle with enough, that’s why we need it. It’s even worse for those with emotional and psychological difficulties and understanding. There is no excuse in making matters worse, making us more ill, by having such a flawed system it punishes those who need it the most. Those who are healthy are the ones who can get whatever they want from it, because they have the physical and emotional capacity to do whatever the hell the system asks them to. We don’t. It’s messed up completely.

Should I take this to Tribunal? Oh, with jingle bells on every toes I should. However, in doing so, I am jeopardising my health, my psychology, my conditions, my family life, my parents’ health (and they’re over 60 now). Do they take that into account when they do this to you? Hell, no. I am torn between protecting what little I – we – have, and doing the right thing.

It’s my very own Kobayashi Maru… and I don’t think there’s any way of cheating in this one…

 


Falling…

I have the headache from hell. It’s been here since Storm Irma hit landfall in Florida a few weeks ago. It’s not going away now though.

I went to London for 3 days – home again after two whole years. Four years since I’d been to where I used to live and the West End, because once I moved to Leyton and was ill, I never could go back. I only went to Stratford (and frankly that was pretty good enough, too – great area!). This was the first time I had been and the first time I’d used a proper wheelchair there… But the biggest shock wasn’t being back in London (that was just normal, like visiting the hometown you grew up in and love). No… The biggest shock was coming back.

When I was there, staying in Angel [Islington], it was far from perfect. But things were easier. I wasn’t as ill. Wasn’t in as much pain. I was stressed to hell and kingdoms come, but I wasn’t as ill.  I was able to get up 1-2 hours earlier than [here] in north Wales, and with far more ease. But since I’ve returned to north Wales, the difference (whatever the difference is) has hit me with a sledghammer and then some. It’s, quite frankly, utterly shocking and horrible.

It’s bad enough this Aspie Girl had to leave her home (London) in the first place. Now, after going back like nothing had happened (except with more pain and a new wheelchair), the difference in… whatever… is striking. And maybe because I’m not used to it now, I can’t cope with it. With whatever it is here [Wales] that does make my condition that little bit worse. I don’t know if it’s a psychological thing affecting the Firbo, or a Fibro thing affecting the Psychologial. But whatever it is, it’s there and it’s real. And shocking. So to be so brutally tasked with trying to “Cope” with it, is boslutely horrible and really hard.

No, I did not expect this at all. If anything I thought I’d get a few days of respite, but not to this extent. Wishing now I’d stayed a damned week instead…

It was lucky I went with my new chair – GTM Mustang, from Cyclone. [Mine’s black and silver and so comofortable]. It made all the difference there. I managed to go around everywhere I wanted with absolute minimum assistance, which was amazing. Thus I question, how is it now, from the time I’ve come back, am I passing out with pain again? Did being back home make me stronger? Is there a radical difference being up north? Is the weather? Is it about living so high up [compared to London]? What is it about being here that makes it go from 9¾ was a maximum pain there, to being a minimum one here?

Even when I was very stressed there (just try taking the train from Euston station when you’re in a wheelchair!), it still didn’t get too bad… well, until I’d been on that damn train about two hours, and it was already 7pm! And yet, all I’ve done since is, well, nothing, because I can barely move.

Is it psychologically-induced? There’s no denying the immense depression and fear I have living here, and not back in London. I’ve never liked it here, and I am horribly resentful and fearful of life here. I feel restricted because I’m forced to be more reliant on others here – you have to drive or be driven here, there’s no public transport available (certainly not adaquate enough for indipendent wheelchair use, like London has). There’s a lot of depression and fear involved to being here. I am just a completely different person there – I’m home, safe, and I know and like how the world works there. Here… Nothing of the kind, and I’m terrified and agoraphobic when here. That can’t help.

It’s always cold and raining, so wet, damp, painful… meaning that it has an immense knock-on effect on my physical well-being, and thusly has a knock-on effect on my psychology. Clearly, the answer is that it’s everything together doing this. It’s a messy, tangled ball of knotted string…

The fact there’s no help or support in any real way, means I’m left floundering. I’ve had to ask to be re-referred to neurology because this is getting worse. Physiotherapy has dumped me (there’s no NHS money for long-term help, and she was a wet blanket and a half anyway…). I’ve been waiting about a year for psychological help, and I’m still waiting, desperately trying to tread water in the meantime. The pain clinic waiting list is a joke – they took 4 months to get back to me, only to tell me that from then (July) they notified me it was going to be yet another 9 months of waiting list to go. And nothing else has been offered, or is available, because I live where I live.

I had a nightmare of coming off the road on a corner of a steep mountain road and falling down hundreds of feet into a deep canyon. I turned around in my car seat, squeezed my eyes shut, and said goodbye as we fell and fell and fell. Just in the moment before hitting the bottom, I came round. Before then though, I didn’t realise I was dreaming… I really thought I was going to die. From disbelief in the first instance, I turned and accepted my fate. It was so horribly surreal to face death like that… and perhaps miraculous to find out it was just a dream.

It’s how I feel in life – it was a very Jungyan dream. I feel like I’ve gone off the edge of a cliff, and I’m just falling and falling… but there doesn’t seem to be any way to be woken up from this nightmare that I’m living in. And I just keep feeling like I’m falling the whole time, because there doesn’t seem to be any kind of end or stability in sight at all. I’m closing in on the 4th anniversary of the start of this [next month]… and I’m just not even close to getting this sorted out. I don’t even have psychological support. I’m just on a useless waiting list, and it’s not like those call centres where the phone queue tells you where your place is… They just make you wait in Limbo until you finally get that letter to say it’s “your turn”.

I don’t like being back. I wish I didn’t have to live somewhere that’s not interested in being good to me, and in fact, only makes things worse. There’s no long-term support of any kind, and I have no emotional support from the professionals. I’m a lost Aspie, falling and floundering… And I still can’t understand why they can’t help me to level out and fly…