Tag Archives: Neuropathic pain

JUNE 2019 — Daily Mood Chart • Disturbingly Not Good… 😔

I use Dailyo diary and mood tracking app for this:

https://www.daylio.net

This just about says it all… 😞😖😢

When you are going through it, it’s bad enough… But to see it like this… You really do get to see “in black and white” as it were…

It was terrible to go through. It was a Hellish Month! 😰😖 … I hope that this next month will be at least somewhat better.

I’m not holding my breath or anything, though… 🥺😞

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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

 

 

 


Aching & Breaking

The weather is getting to me again… My hands are tingling with pins and needles, mixed with tiny but very powerful and painful electric shocks. My fingertips are especially painful, as is a small space at the bottom of my right thumb joint.

Of course, that’s not all it is, but right now it’s marginally the most painful and uncomfortable to endure. Otherwise there’s various neuropathic issues, from ice-cold feet to deep electic-lightening and achy-like deep buzzing around various places like my neck and hips and shoulders. Even my eyelashes and hair feel like they’ve been plugged in to an unrestricted electrical current.

img_0896The thing is that I’m trying to watch the damn tennis, and it’s making it really difficult! I have my 42-inch screen split between 2 matches via my PC – one with Murray, the other with Nadal. And I’m playing with my iPad (or I was, before trying to write this, anyway…). Trying to do all that whilst, well… everything… hurts, is hard. So I’m annoyed…! It’s Wimbledon, for crying out loud!

This is supposed to be the summer… I’m wondering if someone forgot to email the weather here in North Wales… The temperature has gone down, the isobars are back on the floor again (about 1011mb straight down from being in the 1020s), and once again I get to be controlled by the weather – but I’m trying really hard not to be!

To make matters worse, this morning I had to get a mountain of paperwork together for a new PIP (re)assessment – I told them I was worse, so five months later they finally want to check that’s actually true… I have two plastic wallets filled to the brim (if they had brims, which they don’t) with letters, paperwork, and a personal statment that’s 14 pages long detailing everything – so they can’t say I didn’t tell them.  And I’m still wondering if I’ve got everything I need, and whether they want all the old stuff as well.

I think I’ve just put literally everything and then some in there, so hopefully everything they want is in there. But at least that’s out of my hair now. It’s on Wednesday (it’s Monday today), at 3:40pm – and I checked, the isobars are up so I’m not going to be completely dead by the time I get there.

There’s a fair chance I’ll manage at least some full sentences whilst I’m speaking with the annoying fruitloop that will be undoubtedly in charge of my fate with these people. But that will be after quite a long journey to get there… because they just love to send you places you haven’t got a hope in hell of getting to, just so they can get you out of their hair on a rubbish technicality…

Oh, and to follow this joyous occasion that will probably leave me wanting to chew my own head off, I then have to see the physio on Thursday, the next day.

Then on Saturday I long jaunt to see my lovely sister in Southport… I’ll enjoy it whilst I’m there but I’ll probably not appreciate the long journey! I hope that will at least end my week on a nicer note!

Oh the fun that awaits me this week…!

 

 

IMG_3025


Fun Times…

Just loving the hemiplegic migraine flare-ups going on right now… and especially loving the extra-excessive spasms and blackouts. Oh, yes… very fun… There’s nothing like coming round without a clue, and you’re somehow lying on the floor with someone trying to wake you up, and you don’t know how you got there, and you’ve just lost several hours to nothing.

Just a second ago, it seems you were just doing something vaguely normal, then suddently it’s many hours later and someone is truling to get you to come round, more akin to after surgery and you’re in Recovery than at home reading something or watching the TV.

Heaven knows where they’re suddently coming from and nothing is keeping them in check. The spasms are ridiculous and never seem to stop, squeezing, contorting, twisting, causing pain and writhing until (hopefully) they eventually get done with the torture.

Maybe it’s the weather…. Halfway up a mountain in soggy Snowdonia is just about one of the worst places to live with chronic illness. It’s April and yet apparently it’s officially colder than it was at Christmas. That whole “Global Warming” thing is definitely misplaced PR – over here it’s definitely “Global Freezing, Soggy, and Rainy”. There’s no “Global” in this “Warming”… The only warming seems to be in the Arctic, where the ice is melting, turning into cold rain, then being dragged over here and dumped right onto us. Yey.

This is also what happens when you’re allergic to meds and can’t take any… and there’s nothing you can do about it. It seems when the weather gets bad, this gets to stupid, and there’s nothing that can be done about it. Yey, again.

The neurologist at least sent a post-haste note in their letter to expedite access to Pain Management, to at least try and help, although lord knows what they can do without giving meds. On the bright side, at least the MRI was clean. And I checked… there was a brain. So there.

Being stuck in the house isn’t helping either, probably. But it’s just one of those circle things where you can’t win: Damned if you do and Damned if you don’t. Extra Yey.

Oh, and did I mention Yey…?

 

 

 


MRI – The Claustrophobic Miracle-Worker

Had MRI today. I do not recommend them… Squished into a toothpaste-tube washing machine drum that feels like your own coffin fornipnto 45 minutes – not my ideal way to spend a morning…
Apparently they did actually find a brain, though. So there!

*Stipulation: Must admit they did not specify it was On or working, mind… 

 

They’re not pleasant creatures, MRI scanners. However, their inventor and everyone who has had a hand into shaping what it – and fMRI scanners – are, should be lauded and worshiped as magicians and forever lifesavers.. Saints, almost. What their contraption(s) have done revolutionised people’s ability to be diagnosed with neurological and neuropathological – and eve “psychological” conditions.

They proved the true existence of schizophrenia, MS, Fibromyalgia, depression, even Gender Dysphoria (being transgendered). They have also disproved and alleviated fears and suspicions of long-term illness or disability for people. Allowed doctors to see why some people will never walk and others don’t after paralysis or numbness, by giving them the ability to see the spinal cord, discs, and nervous pathways.

Hopefully, today, it will allow them to see I do not have anything to awful causing my weird and god-awful… condition. 

 

life's pooh

 

I was lucky this appointment came very quickly. It was in a temporary mobile unit at the local hospital, rather than the big one that is quite far away. The nurses were so lovely (and I’m completely sure they knew nothing about my ASD), so calm, so confident in helping and their support, that when something looked like it was about to go a little wrong, their support – and my father’s support – helped me go through with it. Just goes to show you don’t need to be “Autism-Friendly” specifically all the time… Just nice.

The thing itself is unpleasant, but they tried their best to make it as not-so-bad as possible. Ear plugs, ear pads, and a big foam pillow under my knees as I lay down, made it as comfortable as possible for me to lie there (they also offered an eye-mask, which I declined). A plastic “cage” (for scanner-tracking) was locked over my face, and I was ready. Well, properly packaged, anyway. I think few people are truly “ready”.

Then I was slowly fed in so it could literally look inside my brain.

Head and neck took about 20 mins each – they took a little extra time because the spasms (usually controlled my Magnesium oil) were starting up and making me twitch or flinch enough to spoil their pictures. Because I did not use the Magnesium oil and had my Pregabalin at the wrong time (the appointment was for the time I take them, and I needed them to be kicked in way before then), I was managing on the essential oil recipe and, well, quite a lot of alchohol – which is never by choice, believe me…

I stayed up all night for this – which wasn’t even a chore because I have a great new game (that would be Mass Effect: Andromeda) and I was utterly scared out of my mind about going through this. I always hate them and they’re horrible, but to get the peace of mind (or answers) you need, they’re necessary, so you put up and shut up. But that doesn’t make them any less scary.

The noises change from a downright trance/dubstep/garage dance beat, to Woodpecker Mode, to hammer-pounding, and all sorts in between (but they’re the main ones). Then there’s silence whilst they check the pictures or move you in the machine. The weirdest thing is the… sensations… the thing gives you too. Tingling, vertigo, disorientation… other things… you can feel where it’s looking by what you feel and where. It’s a strange experience, but one that does no harm (anxiety and panic aside…).

They can – and do – talk to you when they need to, and they will give you some “time checks” when you’re inside, which is helpful. And finally, they’ll tell you it’s time for you to leave. The bed slides out and the bright lights burn the your eyes – or, hopefully, back of eyelids – after being in your little white coffin for so long.

Then… It’s all over.

 

 


Alternative Thinking…

“Alternative” medicine is all I have left to use now – anything synthetically grown in a pharmaceutical lab generally does not agree with me (with severe side effects)

The latest attempt at some relief from this neuropathological crazy is CBD, or Hemp oil (aka “legal” type of cannabioid). It tastes of pure evil, but it’s early days so far. I’d like to think there’s a different, but it’s too early to really tell.

The essential oils recipe I have now is pretty fantastc – and including basil, Wintergreen, white camphor, juniper, and frankincense are all very important, key ingredients to making it work… the Wintergreen and Frankincense especially so. All put in pure Coconut Oil (but sweet almond and jojoba oils are also really good too) to be massaged in at least twice a day.

Another really helpful thing has been Magnesium Oil [spray], which helps dissipate the spassms and relaxes the muscles around the neck, shoulders, and shoulderblades to help prevent them – or at least the worst of them. Little ones get through.

This is obviously a very expensive treatment plan. They’re all very expensive products, and when added together is a rediculous amount of money… it makes you realise how it must feel to try and scrape together your healthcare treatments in the US and how lucky we are to have access tot he NHS.

Unfortunately, the NHS doens’t do natural products, and so I must use a hell of a lot of my pittance from PIP to pay for all this. If the government thinks what pittance pocketmoney they give is actually enough to pay for any of what ill/disabled people require to pay out for things they need, they’re completely delusional in the most rediculous way. Presumably they also believe in unicorns and see leprechauns, too… And they’ve clearly never been shopping for necessities to help with such situations and circumstances.

I’m relieved that there is at least something out there that helps. If I just relied on pharmaceutical meds, I’d be screwed. I can barely function on the Pregabalin, so there’s definitely no chance of going downhill from there on medication that’s supposed to help, but instead makes me sicker. Thankfully, Mother Nature got there first, and this Wiccan is used to looking elsewhere for answers rather than “modern” medicine.

 

 


Alone Without Precedent

The more I am in this situation, the more it eludes and confounds me. It doesn’t help that it thus far has no definitive name. What really doesn’t help is the psychological aspect.

I checked around the Internet… There seems to be really little on ASD/ Autism/ Asperger Syndrome with neurological or physical chronic illnesses. There seems to be no precedent, nothing out there from other people  who are or have been in a similar situation. There’s one or the other – but not both together.

I feel I am wondering out in the wilderness with no way of knowing which way to go, or where I am even going. There is so little help… Nothing but Waiting Lists, and then some. Lots and lots of them – Neurology, Occupational Therapy, Psychological Services… and then there’s more to come for diagnostics, physiotherapy, treatment, more appointments… A never-ending carousel of waiting. With no one to help in the meantime. Without a clue as to what might be wrong with you or why you’re suddenly like… this.

All I know is that it’s no longer Fibromyalgia. Last time I checked that required pain. Mine is all gone, replaced by horrible other things instead. No longer hyper-sensitive to cold, no longer in that pain I was in, no longer able to feel… well, almost anything. I’ve never hit my “funny bone” before and barely noticed. The dog can walk or bounce on me, chew [gently] on my arm and play with it. I don’t notice bumping into things, or people accidentally knocking into me, or things falling on me, or even touching my own arm or leg. I’ve been told there’s a terrible rash on my back and neck as a response to using oils – and I would be none the wiser if they hadn’t told me. I can’t feel it and it doesn’t even bother me. But when I touch it, it feels pretty rotten, I must admit…

img_0886Today my fingers went really numb… like someone had tied super-tight string at the bottom of each one; that feeling of the blood flow being cut off – and yet there was nothing on my hands at all. Not even gloves. I have also had a very hard time with extreme Fatigue (and I do presume I have a cold, to be honest), argued with gathering a Shard on Dragon Age: Inquisition, and my back and legs (especially my legs) have been quite “buzzing” and/or tingling (varying through the day). This morning I couldn’t even move or feel my own self to even try.

Right now I have to manage on the – rather genius and amazing – essential oil recipes for neuropathy and then for fatigue/brain focus, Devil’s Claw, Magnesium Oil (amazing), Neurozan vitamins, and coffee. Occasionally there’s minimal Co-Codramol (8mg/500mg) – almost always when I have a cold or infection – and Boots Botanics Ylang Ylang & Manderin “Aromatic Rollerball”. That’s on top of maxed-out Pregabalin pills. But without a definitive diagnosis, we’re all just pissing in the wind, guessing and hoping for the best.

I feel alone. Lonely. Because it really does seem I’m all by myself with this. Yes, peopleimg_9891 have neuropathic chronic illnesses, and yes, people have ASD. I am yet to find someone else out there who has experienced this and at least attempted to navigate this.

With the NHS in turmoil, and Social Care drastically underfunded, I’ve pretty much relegated myself to the Raggydoll pile. I just now wish to be the best I can be, especially psychologically. It’s a big ask, but it’s all I can focus on – and the only thing I can control now. There is just nothing left in my life I have any control over, and I have no idea. I am in the middle of it and I don’t understand any of this – so it’s hardly like you can expect anyone else to… But I do wish that at least I did. And this new numbness twist? That just hurts my head.

I am just lost, and I do not like that at all.


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