Category Archives: Chronic Pain

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…

 

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And The PIP Nightmare Continues…

Oh my… ********* !! I cannot speak! Buggers cancelled the damn PIP appointment 11:30am on the day, literally right now – was supposed to be at 3:40pm today!

Now I have to wait until next Monday (it’s Wednesday today) until the next one????

I mean, really, they no not understand how ASD works, and now I’ll be lucky not to have a meltdown… I can literally feel my brain imploding right now, and I might even actually cry… I really can’t even breathe…

I did not require this extra distress and stress on top of everything else! What is wrong with these people??! I really can’t be doing with another meltdown…

Oh, I’m so sad and confused now… I really don’t know what to do with myself  – my anxiety was already through the roof, and now it feels there is no number big enough to cope… I used to be better at it, but this/these illnesss(es) has now taken all that away from me, and I’m basically left as a panicking jackrabbit the entire time…

Ohhhh… … …

 


Neuro Diagnosis

Got letter of official diagnosis letter. Dr specifies it’s effectively “Hemiplegic migraine” (or migraine variant syndrome) with Fibromyalgia. May or may not get better.

The MRI will show whether or not (presumably and hopefully not!) there is an underlying cause from something other than the pneumonia trigger.

So…. there you go. I’m complicated…

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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.

 

 


Oh, Stella…

Storm Stella… Thank you for being yet another terrible import from America. For the last week or so you have been driving every nerve and cell in my entire being utterly bananas, and I’m in constant paraesthesia pain – I may as well be attached to Ol’ Sparky for the amount of electric shocks, buzzing tingles and burning, like sunburn, that I am currently having to ensure.

So thanks, ridiculously horrible storm that came from across the sea to cause so much misery.

It was supposed to be a good week this week, and especially today (it’s the release of Mass Effect: Andromeda [game]). But all this has made it impossible to manage to be anything close to even “Meh”. Definitely not “OK”.

It’s beyond trying, being dictated to by not only this condition but also the bloody weather. It’s even messing with my von Willebrand’s – and I have no idea how that happens. I’m already restricted by the damn condition, I really don’t need any more trouble because the atmospheric pressure has gone ga-ga…

IMG_1533I’ve been knocked off my feet and trying very hard to be Que Sera about it all… but this comes on the tail of a stressful couple of weeks, including being ill with flu for about two weeks as well. Then just as I was starting to get better, Stella came… and now I’ve got yet another flare-up from Hell again.

I’m keeping it from getting too much worse with the essential oil blend and Magnesium Oil. But there’s only so much even they can do in this situation. The paraesthesia has gone mad and there seems to be no stopping all those damn horrible symptoms that comes with it.

I was hoping that things would be back to normal by now. I wanted to play Mass Effect: Andromeda on Day One and enjoy it. I wanted to make it to an appointment to help teach someone about basic tech skills tomorrow. But no. It’s not happening. Instead I get self-consciousness, zombie-ness (and I’m not even Walking Dead… more Sitting Down Whilst I Rest Dead…), terrible sensations of being burnt and electrocuted, my hands don’t work properly (typing this is a nightmare for my fingers, but longhand is even worse), and I’m not sure how on earth I’m going to be able to focus on my new game and the lovely Collector’s Edition Guide to go with it. And I’ve been looking forward to this for years.

I am exhausted… so much so it’s more akin to being drugged with drowsy pills, which is really not easy to handle. It often makes my grumpy and without patience. I’m trying, but I don’t know how long it will take before I can’t take it anymore and snap… although I obviously hope I do not. I did not get any sleep last night because this morning there was going to be no one here to help me take my medication, and because of the weather I knew I wasn’t going to manage it alone if I had slept, so I stayed up the entire night to ensure I took it properly and on time. Afterwards, I passed out in my Aspie tent for about 2 hours, then I was up again. I was hoping to play my game. Despite it being there, in front of me, after my father brought up the packages that had come in the post (when he finally returned and I was cat-napping), I had to be disappointed in realising I wasn’t anywhere near up to doing much of everything, as the exhaustion and paraesthesia pain and intense sensations caused by the air pressure once again created an existence I could barely even exist in. Let alone play my new game.

It’s one thing when you’re in control of your health, your recovery or stability of your condition… but when something comes along and can dictate so absolutely what happens to you and inflict so much upon you, it’s hard to process that. It’s impossible to manage to control it. You can’t “get over it” or undo it, and the likelihood is that – after the awful and super-debilitating flare-up is finally done with half-killing you – you are then left to deal with the aftermath and recovery from it.

The constant storms of 2015/16 were so constant, it’s taken me nearly 10 months to start a true recovery (of sorts, relatively speaking) from it… then just when I think it’s safe to go back into the water … always something like this happens. Illness, weather, air pressure… something always seems to turn up. The bottom line it that you feel like you’re simply never in control of your life, condition, or health, and so end up feeling so hopeless and despondent.

It’s also the last thing you need when you’ve got an ASD brain… The random inconsistency, the lack of control, never able to plan anything, and everything constantly in flux even minute to minute, let alone any longer… It’s all a nightmare that never ends, and the only thing possible is learn how to live like that. Somehow find some consistency in non-consistency and non-complacence in how your condition or “triggers” behaves.

The only thing I can think of to cope with all this now (and it’s taken long enough), is to find a bunch of “safe” things that are always consistent despite the inconsistency in everything. More like “If-Then” kind of scenarios, and enough of them to cover as many eventual possibilities as possible – then there’s a constant stream of consistencies to find comfort and familiarity in – frankly, comfort and familiarity I simply used to get just by being in London (at home, my home). Because nothing makes much sense here at all, I need quite a few different “safe” things to have available, regardless of the situation.

Right now, all I want is for these symptoms to go away, my fickle concentration to return, to be at least almost entirely conscious, and to be able to play my game. I have a simple life with simple requirements these days… Something like that shouldn’t be too difficult to ask for – surely?