Tag Archives: strength

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


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


Don’t Look Back

Focus On Your Strength

Focus On Your Strength



Sometimes, that’s all there is. It takes over your mind. It takes over your body. It takes over your life. It’s everything.

It’s your downfall. It’s your enemy. It’s hell on Earth.

So… how can you not focus on the pain and stay strong?

It helps if you know why you have the pain. It doesn’t make it go away, but at least you know what you’re facing. You know if’s a Really Bad Thing that’s causing it, or if it’s something that isn’t so bad that can either be cured or can be managed without complications or danger to life. Whatever it is, you can deal with it.

I’m not dealing with it. I try to ignore it… but that’s rather difficult. So instead I take my mind off it, working to find the “Silver Lining”, whereby I appreciate the small token that I at least have the time to do things I never had time for before. Those things like writing, watching things I never got around to before (who usually has time to watch new series marathons on Netflix every day? I’m definitely not missing out on that opportunity!), playing long gaming sessions and getting through those little things I never had time for before but wished I could.


Time Has No Meaning

I have nothing but time now, so what things I can do, I do. Those things that myself, and others, in the middle of rushing around doing things would love to have the time to do.

On the other hand, there are things that I would love to do, but now I have the time to do them, I can’t. I can’t go for walks and walk my dog around in the park, I can’t go horse riding (nor can I afford it now I’m not working – ironically had the money before but not the time, and now I have the time I don’t have the money…), I can’t sing, I can’t go ambling around London for fun like I used to, I haven’t been to London’s “West End” for going on 2 years (and I mean the entirety of central London’s shopping and entertainment’s district, not just Theatreland  – just all of it used to be my favourite place to be).

Those things, I try not to think about though.

This picture reminds me to think about those things that I can do, to focus on those “Silver Lining” things, where I can do things I actually enjoy. That even if I can’t go to work and do the things that I really loved to do (and get paid for it), there are other things that are just as fun.

Right now, a huge shining Silver Lining is being completely available to watch Wimbledon in its entirety. I’m most certainly enjoying that. Especially when playing ESO (Elder Scrolls Online) at the same time – talk about cool beans…! For two weeks, I’m certainly going to be a little bit happier (so long as Andy Murray toes the line and gets himself to the Final!), because I’m not going to want to do anything else or go anywhere while they’re playing. All those summers I wished for it, I’m going to be all over it now.

It’s not only about focusing on strengths. It’s about learning to just take it as it comes and make the best of it. That whole “make do and mend” attitude is important when you have pain, when you have chronic illnesses, and when you have an uncertain future.

All you have is now.

The best thing to do is to “make do and mend”. You can’t change it, so focus what what you can do, and make sure it something you enjoy.

Now is all you have. You may as well enjoy what you can when you can. If you have moments of nice, of peace, of fun, of enjoyment, of doing something valuable (to you or someone else)... those are all such positive things that will brighten your day and your mind. Your strength of mind.

And that is what focusing on your strengths is all about.

Being positive. Staying Strong. Getting Through.


My Pride & The Prejudiced…

I sometimes wonder if there is – or should be – some sort of final timescale in how much suffering you’re supposed to take. How long are you supposed to go on being blighted by something whilst accepting there seems to be nothing for it but for you to continue to endure it?… Forever? A few years? A few months? And if it is forever, should you be made to suffer more for it because other people don’t really know what it is to live through it?

It seems to me that some people rarely get blighted by anything. Their worst worry is whether they can afford a new iPhone, or buy a bigger house, or get that promotion… The more superficial things in life. Things that a few people out there do not have crossing their minds because they’re trying to do arguably more important and simple things these (majority of?) people take for granted – like trying to breathe, or walk, or suffering through chronic pain, or illness. I envy the people who don’t have to worry about these things – who can walk if they wish, and not struggle for breath, and don’t have to fight chronic pain and illness… But I know they don’t understand or particularly care for me.

I have always constantly felt I’ve had to apologise for my ‘delicate nature’ – I have been plagued by things for most of my life, and I’ve not had the kindest reception from most people because of it. Illness is not something that is dealt with well in this day and age – it feels even worse when its the healthcare professionals (who are supposed to be helping you) are the ones who are telling you not to waste their time and ‘get on with it’.

Right now, I certainly live in a society where 100% ‘wellness’ is the only acceptable viewpoint – anything less and it seems you’re not worth anyone’s time. All health problems are supposedly to be dealt with by ‘being active and exercise’… Have depression? Run. Have back pain? Pilates and yoga. If you’re sick, you struggle into work, and subsequently make it worse – and if its viral, you give it to everyone else (… genius). That might be OK if you have the blues – not clinical depression, or if you have a bit of a sore back from slumping at your desk, or if you have a bit of a cold. That’s not so smart if you’re suffering from chronic pain and illness where all that ‘advice’ is going to make it worse. I notice there is no advice out there – or even empathy – for anyone who isn’t ‘generally fit and well’ – and if you want specialist care, you’re more likely to die of old age waiting for it than to receive any beneficial help.

I’ve been turned away from jobs for being of a ‘sickly disposition’. I have struggled through all my pain to get to those jobs that have been offered. I currently have suffered 10 weeks of extra pain due to a rather particularly bad chest infection – which I made worse by continuing going to work through (including a 3-4 hours round trip of travel each day) until I couldn’t get out of bed anymore. The chest infection itself was blitzed by super-doses of antibiotics (about 2 weeks after it started, when I finally relented to see a doctor), but since then I’ve suffered what only can seem to be post-viral exhaustion and quite severe post-viral coughing. Needless to say, it’s been a very long 10 weeks…

To try and maintain a form of life and to earn a living, I once ran on little but very strong caffeine, codeine and alcohol – all to numb pain, get through each day, and manage to earn some kind of living. I lost jobs because I was unwell, I was refused jobs because doctors told potential employers (at the request of medical records) that I was unwell. I struggled and scraped by, just about. But then, that was in my 20s. You can get away with things then… But that kinds of living takes its toll, especially on a body that already doesn’t work very well. And now I suffer for it, even more. I’ve worn it down so completely from ignoring and covering the pain, and doing things anyway, it seems that I’ve come to the part where the consequences for that negligence and struggle are kicking in.

My problems run like a long toilet roll list, and there’s nothing for it now but to actually be strong enough to say, “Hey, I’m a little delicate and I’m not Superwoman – and that’s all there damned well is to it!” … And not bloody well apologise for it anymore. It just is what it is. That’s my lot, and it’s not for anyone else to question or judge. Nice people will understand we’re not all able to be made well and robust…. And, well, everyone else will hopefully give me a wide berth if they don’t want a lecture on empathy and being unsympathetic moronic idiots who are lucky they don’t know what it’s like to be like this.

After about two decades of increasingly failing health and my body slowly (apparently) giving up on me, it would seem that the amount of time you have to suffer these things is whatever you’re life’s agenda is… But no matter how long it ends up being, it always appears infinite. But I have realised one thing, no matter how badly you might want to feel about not being that robust vision of pure health we seem to be led to believe is the only option that is acceptable, letting others dictate how you feel is always the least smart choice you can ever make in your life.

Walk A Mile In My Shoes (1)Remember, it’s your life, not theirs. They don’t have to live with it, you do. Therefore their opinion really doesn’t count. If someone has no experience of something, you can’t have an opinion… If someone who is quite happy bouncing around being all robust and healthy is ignorant enough to tell you to ‘get over it’, remind them of this fact. I had had someone in my life who had no idea what physical suffering or illness was – not a cold or a virus even hit them with anything more than a day of siffles – they were extremely fit, active and healthy, and had little sympathy for my pain… Then they were hit very badly for a few weeks with a devastating (but temporary) condition, where for this short time they suffered some very similar and debilitating problems to what I had. This person made a full recovery and never looked back – but since then I’ve heard not one word of ‘get up and get over it‘ from them. I get nothing but empathy and help from that person now, and they’re always there when I needed… And sometimes when I don’t quite as much. It just goes to show that only those who don’t know will ever think you’re being a weakling or ‘exaggerating’ what you feel. When they walk that mile in your shoes, they’ll never say it to you again.

Until your suffering stops (if you are to be that lucky), then make sure you look after yourself, and other people help you to do so. My very best friend very sweetly tells me I should live in a protective bubble – and I wholeheartedly agree! But if anyone wants to tell me now that I should ‘get on with it’, the best they can hope for from me is to be ignored… I suffer enough and carry enough burdens – I don’t need to carry their judgment and prejudice in my life and have it on my mind as well.



I’m so tired of being here

Fighting through all my innocent fears

I can still feel that you’re still near

And you won’t let me forget 

The power you once had over me


I’m still here in your hands

And I can’t understand

Why you can’t still ever let me go


My prison, my walls, my cell here inside

Dear fateful friend of dark tears that I cried

The tangled web of the secrets I hide

Inside my heart, and my mind…



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