My Life Wasn't Supposed To Be Like This

Experiencing chronic illness/chronic pain is like living inside a kind of a prison - watching the world go by outside and being unable to join it (or even remember it's there, because it hurts too much to think of everything that's happening that I can't attend).

I keep having this feeling at the moment, as though I'm walking through life like it's a dream... I feel disconnected to everything and disconnected from everyone. I feel completely alone and yet not really like I exist at all...

I feel as though I'm observing everything, as though I'm observing myself, and saying, what the fuck is this?? Who the fuck am I??

This wasn't who I was supposed to be... This wasn't what my life was supposed to be like... This wasn't how it was supposed to be...

This isn't right... I'm not right... I haven't done enough... I'm not doing enough... I should be doing more to make things alright... It's my fault that things are so hard, it must be... This much shit couldn't happen and it just be "life" like people say it is...

It must be something I've done... It has to be my fault...

I don't deserve to live happily, I don't deserve to feel well... I deserve this, I deserve to feel shit...

This dialogue could go on forever -- the self-slating, the self-criticism and bullying-- and often it does, but when I write it out like that, I realise how untrue it is, and how much this is just self-criticism. It's just thoughts, it isn't truth, it just really, really, feels like it sometimes (or a lot of the time...). It's my inner critic firing at me with seemingly endless and utterly buckling self-judging bullets.

Writing out the self-critical dialogue brings me distance and enables me to connect with that part of myself that knows that what this critic is saying is bullshit... The part of me who knows unconditional love - towards myself and towards others - and who feels sadness when she hears this.

But I often get myself in a hole, not reaching out and not connecting with people, when I really, really, need to. I get intrenched, overwhelmed, and shot-down by this dialogue, by my own judgement of myself...

So, instead of reaching out, I head inwards and bully myself, occasionally coming up for air and self-compassion, but mostly just holding my breath and battering myself with critical self-talk about how this is my fault, and I'm not doing enough, and I'm not lovable because of how/who I am...

Despite me knowing there is no right or wrong way to live life, and despite me being able to shower friends with empathy and compassion when they share stuff like this with me, I feel unable to do this with myself in moments of overwhelming shame, self-hatred and self-criticism. I feel blinded to myself and see only failings and fuck-ups and unlovability.

This really wasn't what my life was "supposed" to look like, though. But then, is life ever fully what we thought it would be? Better or harder (I don't like the phrase 'worse'!) I just thought life would be a bit easier... I guess I didn't think I would suffer this much. Life was hard enough as a kid, I didn't realise it but I think part of me thought it would get easier! Instead, I feel like it's got harder...

Writing that, and when thinking things like that, I immediately think of the thousands, millions, of adults and children who have it harder than me. I feel guilty feeling like this, but I also know that I need to let myself feel my feelings, too, but to just carry perspective when I do.

I live with chronic illness. I have done for about 10 years. It started off with intense Chronic Fatigue symptoms but over the last few years it's just been one thing after another, or all at the same time (like the last few months...) I find myself laughing sometimes about just how fucked up and crazy it's been, but other times - like this evening - I feel utterly shattered and overwhelmed with the question, why am I carrying on? Seriously, why?? It's so damn hard all the fucking time...

I'm angry. No amount of acceptance or 'coming to terms with where my health and body is at' will ever make it better... It might make it all easier to deal with, it might bring less internal fights and a little bit more peace to my internal experience, but it won't make it any less shit. It won't make me better. And that's what so incredibly rubbish. I can't just think myself well, otherwise I would.

To anyone who has ever told me to think positively, or that our thoughts make us ill, therefore my illness is a direct response to my thoughts...IT ISN'T.

A few minutes ago, I walked downstairs to get a snack from the kitchen and I caught sight of the moon in the sky. I felt overwhelmed with grief and rage, and burst into tears. I'm usually in-tune with the moon's cycle, like I am with that of a good friend. I'm usually outside, noticing it (even when I'm really ill/in pain, I still make myself do stuff because I have to in order to remain sane and survive this shit), but sometimes - like this summer/autumn - I'm too ill to do that. I'm too ill to be anywhere other than bed most of the time... So I lose touch with the moon, with the weather, and with a lot of life outside this bedroom.

Experiencing chronic illness/chronic pain is like living inside a kind of a prison - watching the world go by outside and being unable to join it (or even remember it's there, because it hurts too much to think of everything that's happening that I can't attend). Or, attempting to go to events, but having to leave 10 minutes later, because I'm in too much pain to be there. Or, going to things and needing to leave 10 minutes later, but being unable to because of lifts and logistics, or pride and determination to exist in life outside my bedroom... But, instead of enjoying it, I spend the whole time in severe pain, wishing I was in bed anyway.

It's so frustrating and heartbreaking. I feel afraid of my future and the challenges ahead. Even though I know I can and will survive them, I don't want to. I want to live without being almost constantly challenged. I want to experience just some challenges rather than the truck-load that's already been.

I want to feel healthy, I want to feel well. I want to be able to do stuff I used to - stuff I really, really, want to do. I want to feel like the 29 year old I am, rather than the 136 year old I feel like I am.

Ranting, moaning, and sharing all of this, definitely makes it easier to deal with and helps bring perspective, I just wish it made me actually better, too.

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