Tag Archives: AS

Going Solo

Pain is exhausting… and troubling. It’s now my worst enemy, and today I am facing it alone.

I have an appointment with a physiotherapist to discuss Hydrotherapy today. In two hours. My cab is now booked, my appointment is for 1pm. My friend was supposed to be here with me to help – I am not anywhere near ready to go out somewhere alone. Yet today I must somehow do so. She has an interview today, a last-minute request for a job she wanted – in Wales. So she left yesterday to be ready for it this morning.

I have been alone so far for 24 hours – but that’s not really the problem. The problem is that having to do things myself hurts. Too much. Far too much. So I go without, I avoid, and I do not do anything that will make the pain worse. But today… today I have to do the exact opposite.

I must somehow manage to endure the pain and go to this appointment alone.

 

Solo Expedition

All Stressed OutI am daunted. Overwhelmed. Scared. I’m sitting here, with the Dragon Age Inquisition [PS4 game] launch window that plays the gorgeous symphonic theme music on a loop, over and over again. It’s comforting, soothing, a noise I know well and gives me strength and calm (operate conditioning: it’s how I feel when I’m playing the game, hence it makes me feel the same when I just here the music). I feel rather… trapped. Like a rabbit in a corner that knows it’s going to be done in, and is just waiting for that moment to come, trembling in that corner and just… waiting.

I have never been out on my own before – not since this happened. I don’t like going out anyway. Add this to the mix and I’m borderline terrified.

Somehow, I must prepare my own wheelchair, then get it out of the house (aka tiny flat that the wheelchair doesn’t really fit in) on my own, and over a rather tall hump where the front door frame is quite raised from the floor (I’ve tried getting it over it before, and it’s excruciating and such a difficult to do). Then I have to get it and myself out to the cab. Get in the cab and get to the hospital. Somehow then take myself in my chair all the way up to the physio department. Have my consultation. Then do it all again – backwards.

 

I can only prepare so much, but I’m doing so. I’ve taken Pregabalin, Devil’s Claw, and my joint pills. Just before the can is due I’ll take the 8mg co-codramol (I can’t take anything stronger). And that’s it. There is nothing more I can take. The rest is mental and emotional willpower alone. And my innate stubbornness.

I must try and remember this is no gauntlet compared to what else I have faced in my life and this awful pain I will endure will still be nothing in comparison… Although, that is difficult to remember whilst going through it all. But what is one more crucible when you’ve already had several?

 

It doesn’t help that I was already in a lot of pain this morning – today, the shoes my friend wanted for her interview came… after she left for it yesterday. They came at 8:30am – whilst I was still asleep. I realised it would be the shoes, so I gritted my teeth and dragged myself up on my own (I usually am helped to prevent so much pain), with my stick, and put on my dressing gown and went to answer the door. By the time I then got back to bed, I was in too much pain to sleep anymore or rest, but I couldn’t get up until I had psyched myself up enough to endure the pain it would take to do so.

I couldn’t make coffee and I had to wait until the Pregabalin kicked in… so I didn’t have any until way after 10:30am. It’s already been a nightmare day before it even starts.

Now I have my appointment to look forward to.

 

Uneasy Wait…
Soul on beanbag

Soul

Even Soul (the dog) can feel something is very wrong. He’s lying next to me whining and then trying to play with me, chew me (he’s a Staffie), rolling on his back with his little tail wagging madly, and licking my face, trying to cheer me up. Poor guy doesn’t understand why, but he certainly knows things are just not right.

My head aches, my mind burns, my bones ache. One coffee just isn’t enough… but choices must be made, and I must choose to not inflict more pain than necessary, if it is going to cost me more than I am willing to handle. If I am early enough, perhaps I can get something from the shop/cafeteria or whatever they have there (although, it’s not the best hospital for any services, least of all food – in fact it’s one of the most under-funded hospitals I’ve ever seen, and I’ve been to/worked in many).

It is now just half an hour before the cab comes. I must get everything ready that I can… And I really hope I am physically capable of doing this, even if it does inflict pain. As long as I am physically capable of this, I will manage… unfortunately, the reason I am going is that I am not physically capable of much and require hydrotherapy to support and strengthen me again (with less pain, thanks to the warm water). The idea is you go to hydrotherapy first and then do stuff like this, when you’re stronger. Not the other way around.

I said before Asperger’s and pain do not mix well together. Well, now they’re downright exploding like domino-effect multi-detonations. I’m about two minutes away from a panic attack and subsequent meltdown (hence writing this to calm me and make some sense out of it, and the repetitive gorgeous music from my joint-favourite game). I’m alone with no one to help me… well, no one human. And if I didn’t have Soul here to comfort me I would be in pieces without a doubt.

Now I must go and prepare… and pray that I can somehow make it on my own.

 

Focus On Your Strength

Focus On Strength

 

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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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