Tag Archives: symptoms

28 June 2017

Completely exhausted… Got an hour, maybe and hour and a half of sleep. That’s actually better than some nights where I don’t sleep at all and stay awake for 48 hours straight, but nevertheless, I still feel horrible.

The isobars are minuscule. As of now BBC Weather app and AccuWeather, they sit at 1000mb, which is devastating. And I’m pretty sure it’s not just to me.

I can barely think or function on days like these. It strips of everything… frighteningly so. There is no functioning – physically or mentally – on these days, and there’s nothing for me but staring blankly into space whilst the telly talks to itself. Usually crime things now I have TVPlayer on the Amazon Fire Stick. The buzzing deep and electrifying “achy” type pain is horrible and at least 9.5. The exhaustion is about 1000. I cna’t really be upright – shuffle-walk or stand. Everything that involves being alive is horrible, actually unbearable. Almost as unbearable as t he advert infomercials I’m being overwhelmed by and attacked with right now…

There’s the hot-and-cold, the heavy flu symptoms, heavy cement in everything cell of by entire being – including hair, which feels like a dead cat is spilling on my head. I’m in a stupor. Crawling to the bathroom isn’t fun (particularly when also incontenant) and especially when you’ve got one [right] leg that just doesn’t have a clue.

I  wish there was something I can do about it, but everything thought up just doens’t go far enough to make isobars this low feel like nothing, It’s about putting up with it, at least for now. Unfortunately.

 

 

 

 


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?

 


Incompatible Me

I’m beginning to wonder if I have two of the most annoyingly incompatible conditions possible… It turns out that apparently Fibromyalgia and Asperger Syndrome do not play well together… Or, perhaps depending on your viewpoint, they play together too well. All they seem to do is add to, and aggravate, each other’s symptoms – they have much of the same side effects and both get affected by much the same thing, and one usually will then set off the other. It’s complicated

This is not making my life any easier – and I think I can safely say that Fibro and AS are ridiculously incompatible to have at the same time if you actually want to do anything.

Fatigue is one of the worst – I get tired enough just by trying to be alive with Fibro (which my auto-correct constantly wants to change to “fibre”… and then leads to quite a different sentence when read back!)… but AS also makes certain things absolutely exhausting, namely all social situations (i.e. also just simply trying to be alive…).

Fatigue feels like it’s almost a condition in and of itself – it seems to have it’s own mind and behaviour, and it also needs to be acknowledged and treated itself – regardless of what is causing it. It feels like a mini-condition within a condition, and it causes enough problems all by itself, without even then taking into account the condition that’s causing it. After the pain itself, it’s the most difficult part of this to deal with.

It’s an unfortunate symptom of Fibro, since I get tired enough from things anyway, thanks to AS. A lot of things like going out, being outside, being with and around people (one or more others around me is very difficult to manage, and the more there are the harder it is), speaking to anyone (strangers, shopkeepers, receptionists, anyone on the phone, etc)… anything that effectively requires any outside and/or social interaction and communication… they all already exhaust me because they are so very difficult to manouvre. They are frightening and daunting, often overwhelming, and I usually find myself extremely tired after doing such things. Add to that the intense fatigue that comes with Fibro and I am now never anything but extremely exhausted and constantly drowsy.

It’s become rather worse since we temporarily added a couple of extra people to the household. Now there are four people and a dog in relatively small place (it’s not really built for sharers, more like a small, young family) for a few weeks, and it’s extremely difficult for me to manage. Juggling pain, social confusion, high anxiety, and a lack of experience for the right etiquette for this situation – including not really want to engage with so many people at once. I like them all, but it’s just too hard, too complicated, for me to handle. Just knowing they’re in the house is stressful enough, and because of all this, I am just so beyond exhausted I can’t even think.

The fact that can’t really sleep doesn’t help. As it turns out, Fibro screws with your sleep quality – and just to help, my AS causes enough constant anxiety to makes sleep barely more than a pipe-dream as it is. So now what little I do have is pretty useless.

life's poohWorking in keeping them both in check, and working to lessen anything that causes symptoms – or at least strong symptoms – is the only thing I can do to try and manage. It’s not like anyone from the outside (NHS, social care, etc) is coming in to help me – the only treatment I’m getting for anything is possible hydrotherapy.

It feels like a gauntlet to be run. Another one. I’ve already been through one – one that lasted nearly 2 decades… so I think I can run this one too. It’s only been 2 years, so it’s hardly comparable. However, it’s not really too clever to have two such completely incompatible conditions that just aggravate each other, making them more intense than either on their own would ever be. It’s also hard going it alone, and without outside help, I’m not sure how well I’m going to do in the long-term… but at least it’s not something worse, or anything life-threatening or life-shortening. It’s life-changing, but that’s still something I can live with.

And I need to remember that.

 

 


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