Tag Archives: scared

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.



Labels For The Lost

So I went for another assessment. You know, for more labelling. As if I didn’t have enough already. They love them in Psycho-babble land. The last big one of consensus was Depressive. Others were hypochondriac, problematic, troublemaker, unstable, unhelpable. I loved that last one – it drove me to be whatever I wanted to be. So I guess I then wanted to see if I was going to go and qualify for another one. Maybe one that would have some answers.



I’m not sure why I went. I hate labelling – they’re restricting and demoralising. On the other hand, they come with help and some insight… if they’re correct. The if is a big if for me. I can’t communicate properly with these people, and am never able to say what I really think and feel about things. I drivel on forever and never able to make my point. I can write my thoughts perfectly coherently (not on here – this is the “lab” where the ideas are cooked up… for want of a better metaphore…!), but I certainly can’t say them. So no one ever really gets the bigger picture.

I did it a couple of weeks ago or so. I was terrified. Extremely anxious. In a place, a clinic, that I hated and unnerved me. And then there  was the stranger sitting in front of me… asking me vague questions and wanting to know all about me. Again. This must have been the gazillionth time I had been in this situation – one that I really hate.

So I do what I usually do – talk non-stop drivel at them until they leave. I can’t make my point, or answer any questions coherently. There were no straightforward questions – they were all open-ended, barely actual questions even… Those “tell me about…” type ones. So I just babble on about stuff without listening to myself or thinking about what I am saying.

I was frozen and sat like a stone, unable to think clearly, or speak coherently. I babbled and babbled, speaking about whatever was in my head, relevant or otherwise… and probably mostly otherwise. I was mainly panicking inside. I just know as I’m speaking, somewhere in my subconscious, that I am not saying anything that I should be. Yet I still can’t actually say it. I wish they would just email me instead.

I’m OK with straightforward questions, where there’s a clear and precise question and a clear and precise answer. I don’t do so well on the others… those vague ones that are open-ended and aren’t really clear in what they’re asking. That’s what they give me, though. The vague ones. So I never answer their questions properly, and usually land myself in the wrong place with the wrong “diagnosis”… All because I could never tell anyone what I really wanted to say, because they never ask the right questions in the right way.



Ever since that meeting, through that evening, that night, and ever since, this has been spinning in my head. All the things I wanted to say, all the things I should have said – they’re all floating around in there, screaming to be said. Only they will never be said because I don’t know how to get my words from my head and out of my mouth properly. They haven’t left me alone even for a minute and hound me.

Now I’m going back for another appointment. That letter finally came, and gave me less than a week’s notice. I got it on the Wednesday, and the appointment was the next Monday. By a very kismety stroke of luck, my best friend actually had already randomly booked that day off, so I don’t have to go alone. I can’t go back there alone… I hate the clinic I keep having to go to – they’re all appear to be idiots with the combined IQ of a kamikaze gnat, and always answer my questions with “I don’t know“… very helpful.

The guys in this place just can’t seem to do anything right, and, at best, feign strained politeness. They’ve screwed up everything that both I and my GP have asked of them, and cancelled my one and only appointment with a psychiatrist for assessment for CBT 20 minutes after it was supposed to start, claiming an “emergency” came up. They then seemed to cancel my CBT request and never made a second appointment. I had to ask my GP to send them another one. They also sent me to an “emergency” appointment instead, where I saw an idiot junior GP on a psych rotation who tried to goad me into admitting to things that fit me into a certain “Personality Disorder” box she was trying to stuff me into, because she had just been working somewhere specialising in it. When I looked up this disorder (which I forget now) it was almost an exact list of everything I wasn’t – apart from the “traumatic childhood” bit, which everybody seems to obsess about. My problems started way before then. I was already not OK by age two… shame they didn’t think about that too.

And so… I’m scared he’s going to say yes. I’m also scared I’m going to say no. One way I have an answer I don’t really want. The other way means I still have no answers and I’m still lost. OK, I do not need another one of those labels – all they do is generally cause trouble. On the other hand, answers are always good. You can deal with them, and other people can help you deal with them. Maybe you no longer have to struggle so much with it anymore. In theory anyway… There’s no real guarantee anyone will actually help you at all. Given I’ve been waiting 9 months for a follow-up appointment with the pain clinic, and 8 months and counting for a CBT assessment, I should be rather more realistic and know that help isn’t always there for you when you need it. Or maybe it’s a diagnostic thing…  given I’m still waiting for diagnosis for anything.

I guess I just have to wait to find out…