Tag Archives: problems

Silent Suffering, All Alone…

Does the grief ever really go away? The one you feel from all that you’ve lost?

The shame, the humiliation, the degradation, the demeaning secret truth of the life you have to… exist with… it just never seems to become “OK”.

To lose so many of the general functions you were used to your body doing for you, that you took for granted… does that ever really become something that’s really “OK”? You lose so much… I’ve lost so much… It’s not OK. Not even close.

It’s hard to know that the people around you just do not understand what you have to deal with… whilst at the same time so relived about that too. But then… they do and say things without understanding the impact on you, or the extent you have to push yourself to meet their expectations, or their level. What I mean is that they just think “popping out” is just something you can just do. Just like that. Or walking just anywhere they want is just fine, etc. When you live with a chronic illness, when you’re living in a wheelchair, when you sometimes can barely breathe because it hurts so much or your just too exhausted to manage it, it’s not that simple. Not even close. Getting out of bed is nothing to them, but to you, that’s every spoon you have and then some. Then they expect you to do even more.

I run on zero spoons. I do as much as I can on it, from going out for the day, to trying to do something normal like reading or reading, to attempting to make some food (which also requires at least one other person, too), but when they’re then a little tired from it they want “a little lie down”… as if they’ve done so much more than you have, expecting you then to do things for them… that really grates on me, and they do it because, quite frankly, you’re so damn used to it and they’re not. You live with the mind-killing exhaustion of chronic fatigue, so you therefore must be more used to it and are OK… Right? I’m not sure what this logic is, but it’s rather mean – and frankly, either ignorant or naive.

It’s not nice when just getting out of bed was utterly exhausting, then spending your day in your wheels, and your (frankly) grown-up Huggies, having no say over when you go or how, and just about able to stop yourself crying from pain or exhaustion or paraesthesia symptoms, or all the above.

It’s horrid when everybody leaves you behind for their “normal” lives, and look on with distain when you turn up in their lives… You’re supposed to deal with it, but Heaven forbid they do for a day or a few hours. What’s worse, is they make their jusgments without knowing the true extent or details… and they really don’t want to, either. What’s worse than the reality of seeing you is acknowledging the true reality of what you have to deal with. And they don’t want to know that… you know, in case it upsets them. Poor, poor them.

It’s hard so see everyone else in your life get on with being “OK” and you struggle to simply go to the bathroom. As your very basic functions, ones that you don’t even remember living without before, fail terribly and leave you stranded back in those days once again… How can you even look them in the eye with your head held high? Siting in grown-up Huggies pull-ups, or giant-tabbed Pampers, knowing they might not even do the job properly, how in hell are you supposed to have any self-esteem left?

I can barely feel anything from the chest, the lower rib cage, down (including not being able to feel the diaphragm), and thus I’ve been left with less and less control over things – first the legs, then a little bit of the pelvic floor, to having no concept of most of my abdomen, or lower abdomen, and my pelvic floor is barely even a memory anymore. Today, a really bad thing happened in this area and it was extraordinarily humiliating, and overwhelmingly shocking – to be faced with the reality of how far my body has slipped from my own grasp has left me reeling and unable to comprehend where I am (figuratively) in my own self, my life, my entire existence.

I’m hurting inside, but again, there’s no one there who really understands what’s going on… and once again I am alone. How do you even explain? It’s horrifying to you, so what does it evoke in other people? If you’re ashamed, what will they think? You can only imagine they would be horrified. Like you are.

I do not know how to deal with feelings. I don’t like feelings. They’re messy, unquantifiable, horrible, uncomfortable, and usually I can’t even cry (which I don’t like anyway because it makes your face soggy). Right now, I have a lot, and I don’t know what to do with them, how to process them, how to manage to get the hell rid of them, to be honest. I think there’s guilt, maybe shame… There’s definitely sad. Loss. Grief. Reeling and shock. But they all get so very overwhelming, and then I get very confused and upset.

In the last few days, maybe a week or so now (I lose track of the days), my hands have started playing up, and started not working properly. The paraesthesia in them is astounding and so painful. I can’t move them they’re so numb (imagine someone tied your wrists so tight it cut off the blood flow and you have them tied up like that all day). They can spasm so badly they curl up on themselves so tightly, they leave deep nail marks in your palms. They can never open out properly, they’re in a permentant “claw”. It prevents me from being able to do even the simplest thing, and also can prevent me from playing games, or even following a conversation because the sensation (or pain) is so bad there is no more room in my brain for anything else. It makes writing [typing] so hard sometimes that if I manage at all, every word has a spelling mistake at best and is gibberish at worst. It’s emotionally painful to endure, to be honest.

I feel like I’ve been left to rot by the system. Everyone has been less than useless. I’ve just been left to my own devices, and I’m floundering in trying to help myself. The diagnosticians throw me to general services (pain clinic, psych, physio, etc) and discharge me to make their targets look good. Those other services have nothing to  offer except inefficiency and long waiting lists you stay on just to see how inefficinent they are. It’s certainly not to be helped by them.

I’m lost, broken and alone, still trying to find something of myself in all this, wondering if I can ever rise to get the better of it, so I am what is driving me, not this.

 


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.

 

 


Living With The Enemy

Not been doing much writing of late… I’ve barely just been mindlessly going back and forth on the manuscript without much of an idea of what I’m doing. I wish it was because I have started an intensive IT course for SQL, but even that is suffering.

 

After all these years I am definitely tired of being “symptomatic”, but right now I can just about claim to be “coping” … And by “coping” I generally mean that I haven’t as yet curled up into a catatonic ball for six months. I feel a bit “Can’t Live If Living Is Without You” when it comes to my (… “condition”?… “illness?”) depression – I’ve had it nearly all of my life and I don’t think that I would know what to do without it hovering there in the background. But that is where I would prefer it to stay. Whenever it raises its ugly little head in my life, everything tends to descend into chaos, leaving me a quivering wreck that then has to pick up whatever pieces that are left at the end of it.

 

Being out of work (it’s like no matter how hard I’ve tried, I get nowhere…) and stuck at home, it’s not the best situation to be in – it’s prime fertilisation for a relapse. Add to that horribly painful backache and sciatica (ironically brought on by sitting for long ours in the classroom every week for SQL course to get me back into work), making walking – and just about anything – difficult and painful as hell, and all that’s left is a rather miserable Lel… Even my “Angel Walk” – walking from home to Angel Islington – that I try to do most days ends up compromised when it flares up, and there goes the one thing that makes me feel a little better.

 

I’m tired of being tired… No, exhausted… I’m tired of being up till 4am every night – despite being so damn knackered, I can’t concentrate on anything, I feel rubbish enough to not even know what “self-belief” even is in theory, and I’m so run down with almost no appetite and no particular inclination to consume anything but coffee, as it’s the only thing that keeps me vaguely functioning. I’m also ending up having to take painkillers rather regularly again thanks to my back, and that’s the last thing I need to be reliant on when I’m feeling not OK with things. I have enough of a checkered past with codeine – the last thing I need is for it to raise its ugly head on top of everything else.

 

I also hate being hopelessly over-emotional, prone to unbelievable levels of hypersensitivity and emotionally-driven panic attacks, and I tend to stupidly believe that the pills can help can calm them down because they make me think I feel better. You’d think that after 20 years of this I’d have worked out that it does nothing but cause trouble, not make things better…

 

I really want to get back to “normal” (normal for me)… To be more than just about functioning, just about coping. I want to be able to walk out the house and not feel scared (agoraphobia can be really annoying), talk to people without feeling like they’re being really demeaning towards me (it’s just paranoia – they’re generally not), talk to agencies and go to interviews and sound coherent and confident whilst doing so. It’s always nice when these things happen, and I can do them all without having a panic attack or descending into paranoid tears.

 

Actually, what I would really like is to get my mind back so I can concentrate on things again, get obsessed/ passionate (depends who you ask…) about the things I love, get back to writing, actually enjoy my course and be able to do concentrate on it and actually understand it, actually want to play games again… I miss caring about my characters (in my novels, Skyrim, Fable), and I’m annoyed I’m not making the best out of my course that cost a lot of money. Not being able to take in the lectures and trying to read my notes and textbook with the words never being retained.

 

The demon needs to go back in the box… A bit tired of playing games with it though.