I want to make some changes to how I write this blog.
A lot of everyday life feels @&)!%*€ awful at the moment. My husband has cancer and is having major stomach surgery next month. He has 3 other operations due and that’s assuming there aren’t complications of the March surgery. It has been horrendous since November trying to sort out our state Benefits and just when it seemed it was sorted, I was told I had to have a reassessment of my disabilities for one of my Benefits and had to complete a 25 page form and send around another 20 pages of evidence in with it. I have a face to face assessment 9 days before my husband’s surgery. This brings with it the worry my Benefits will be stopped or reduced if they decide against me. My disabilities are all worse than when I was last assessed but you hear nothing but horror stories about Benefits assessments. Our money could get cut off whilst my husband is in ICU after the operation. We have other financial worries as well. We have had a whole series of let downs from people that should be helping us, including doctors and nurses and support workers. We’ve been brushed aside and labelled as worriers or nutcases because we have mental health problems – when in actuality my husband has multiple tumours in his body. When I have severely painful disc damage and degeneration in my spine. We have complex and deteriorating family relationships to work through and little support.
I could go on.
I want to scream. I don’t know if I’m crumbling or exploding but I feel I’m on the brink of going to pieces. I don’t know when I last slept through the night. The nasty angry dangerous version of me is getting out more and more as dissociation takes over. Right when I need to help my husband.
I need to make this blog different. I have become more and more sporadic in posting. When I’ve posted at all it has been sad and angry, as the result of an overflow of emotion or a need for an outlet of some kind. Having that “let out” is important but I don’t want it to be all this blog is. When I started writing I wanted to be able to express myself and also to be honest about what living through mental and physical health conditions is like. A lot of that is difficult, but there are good times and strengths too, and I want to reflect that. I want to reflect learning and gratitude too. I want to try to explore different aspects of my conditions and what helps. I want to post regularly, with more structure.
I need to make plans for how to change.
I am sorry I have not written in many weeks.
I am shattered.
There seems to be no end to the pain and suffering my husband and others I care about are going through. No end to how many times we are brushed off or turned away by all those who should support us. My husband is seriously ill physically and mentally and we are utterly overwhelmed by what he is dealing with and the fear of what’s to come and the frustration of being passed from department to department in the hospital, ultimately left to cope alone.
It feels like fighting and screaming for help in a massive black hole I’m at the bottom of whilst the people I would have depended on stand way above me at the edge of the pit and sneer and laugh at me. And it’s so many times worse because I’m crying for people I love to be heard and helped and understood, not for me.
I’m exhausted. I’m in a huge amount of pain. I’m struggling to do more as I’m “supposed” to but the pain is worse and worse and I don’t know how much more I can take. Physically, so many small things are now really difficult. So many things I want to help my husband with, I’m physically unable to. I’ve been going through a very bad time with family realising how the abuse I suffered is actually not over and people whose behaviour I excused, actually perpetrated abuse; how control and manipulation is still happening in my family and hurting vulnerable people.
Worse still, family members refuse to hear me when I speak out about what’s happening, precisely because I’ve been abused – they use this to say that the problem is me and that I’m the one with a sick view of the world.
This negativity and exhaustion and despair is not what I want to bring to this blog. I want it to be honest but I don’t want to write time and again about hurt and loss. When I started this blog I wanted it to be about hope. Holding on to hope is very hard right now. Lots of days I can’t write at all. I desperately want to share good things and desperately need to be more thankful. When I’m so low all I can do is try to walk through the day and I have no words left.
I need to figure out what changes I can make to shape this blog differently; to still be honest but write more consistently and change the balance of what I post about.
I stopped where I did in my last post as I feel too horrified, confused, guilty and so much tumbling round my mind, that I can’t write more. It feels awful and incomplete to leave it there. I don’t want to trivialise it and feel as if I have done, somehow. I can’t write more right now. I’ll try again in a little while or a couple of days’ time.
I’ve just found out that someone close to me has been suffering the most awful abuse.
It has been going on for years.
It has been horrific. Even what I know, which I am sure is only a small part of what has been done to her.
She was already so vulnerable.
She is a kind, generous, caring… good person. Of course, bitterly, the abuser took advantage of these good traits, taking advantage of her desire to give, desire to help, desire to forgive or to give another chance.
I had been sure someone was hurting or pressurising her but I didn’t know who or how. It’s frighteningly astounding what can go unseen.
I feel rubbish that all my posts are negative at the moment. Like I can’t say or do anything good anymore or be thankful when there’s so much I really should be thankful for – am thankful for – but I’ve lost touch with it all.
Every single time there’s going to be a short moment or peace or rest the next disaster happens. That’s been life pretty much since I remember and I don’t even have things that bad. It’s stupid. Stupid because it’s insignificant in the scheme of things; when there’s so much deeper suffering everywhere around; stupid because I’ve got this far so why can’t I carry on.
But I’m running out of energy and mind and hope and everything else.
My fiancé’s been rushed back into hospital again today after months of fight with the doctors and being dismissed and going round in circles. We don’t know what’s going on or what they suspect or why they are doing the tests they are now. I’m useless for him because physically I’m so ill at the moment I have been in bed, unable to get up for more than a few minutes at a time.
All I can see right now is confusion, being overwhelmed, people I love hurting, me letting people down, mentally breaking apart.
We are going under Lord, is it nothing to you, the apostles cried out to Jesus as the boat was overwhelmed with the waves. I don’t know how much more storm we can stand right now. Where are you, Lord Jesus?
WARNING: this post mentions self-harm and suicide and the point of view of carers of people who are struggling.
How do you love someone who is slowly hurting his/herself – and you wonder if actually, they’re taking their life gradually – when it feels like you can only watch?
I don’t mean how do you feel love. That’s not in question. It’s your love that aches and burns and cries inside you.
But how do you give love?
When it seems you can only watch. Watch, wish, long, weep, beg, scream, shake (you – and them?), speak but only shout into the distance, only shout up against a rubber wall that bounces your words of concern and pain and fear and help and whatever it may be right back at your heart – where they metaphorically stab you and mock you with their futility.
And the love you want to give is lost somewhere.
Your loved one get relentlessly weaker with irresistible self-consuming power. And you are powerless. Love does not force or fight and does not demand to control another person’s choices. Love can not force another person to choose the healing of their body or to choose life. The pain-and-longing part of your heart, when you love someone who’s breaking, might for a time wish it could force it, but the very centre of love knows really that it cannot be forced.
And then you cry.
Even if you cannot and do not want to make them choose, you wish you could at least penetrate the rubber wall, so that love could be heard for a little while.
I’m in this situation right now, actually with two people dear to me, and I don’t know how to give love.
I’ve been drawn back to a website that has been harmful for me before. Another page I follow posted a link to it. I should never have looked at it again in the first place. Definitely not the second, third, fourth time… until I was being drawn back compulsively, hurting more and more each time but still going back like the proverbial moth to a flame. Or to a fluorescent artificial bulb, which seems more appropriate in this case. Why? Is it some kind of self-harm? Some unwilling fascination like not being able to look away from something awful, a crash or accident scene – except the awful thing in this case is what I fear that I am inside.
I don’t want to say what the site is or what was written as that would do no good to readers. In summary it promoted fear of people like me with personality disorders and the harm we do and made various claims about how we think and what our motivations are. It was not new to me, the claims are nothing new and I’ve been well aware of these ideas about people with personality disorders for some time. What was written drew me right in. It activated particular fears and past memories for me. It’s worse because on the face of it at least, the site is highly regarded (though I have suspicions) and because in the past before coming across the harmful articles, I had found some pages on the site about surviving abuse to be helpful and relatable. It’s not as though I stumbled across just any webpage on a spur of the moment search.
It is very hard to hold any sense of my identity apart from what this site “says” I am and what I now fear I am. I was afraid before and continuously doubt myself and my motivation, thought processes, whether I actually love, actually want good and care about people in my life or if actually I’m selfish, if someone thinks I’m good am I actually deceiving them, and it’s never ending. What I’ve read has multiplied and sped up all these thoughts.
The last 3 nights I barely slept, not really knowing why, though this unending thought process is probably a large part of it.
“Brave” by Sara Bareilles / video by SaraBareillesVEVO (c) 2013 Epic Records a division of Sony Music Entertainment
In my lowest times I look back and wish I had just stopped speaking. I think the idea took hold about a year before I was first in hospital but I used to think it as a child too. I know partly why but I don’t want to think about that right now.
This song tugs at my mind. Say what you wanna say and let the words fall out… I couldn’t. I feel my throat close over when I have the flashbacks, or when the voices are loud, or my mind is spinning as the multiple possibilities of disasters I could cause wrap tight around me. Even though my history of silence never did any good.
Some of healing is letting out the words I need to say. It is not an easy fix. It is not as simple as “get it all out and you’ll feel better”. Often getting it out isn’t okay. It’s almost never okay. I wish I could speak and live sure that I wouldn’t cause terrible harm to other people. I wish I could be sure that I’m not all bad really, after all. I wish I were untangled. Perhaps I can never be sure unless I’m brave enough to risk a little more.
To be continued.
(So I just wrote this, pressed publish, got confirmation it was published but then it vanished. Aargh. Here we go again. Apologies if it has only vanished for me and you can still see it, in which case this is duplication!)
I’ve just had a house clearance firm come to give me a quote. Years of hoarding, clutter, old and broken furniture, cupboards of near useless and unnecessary items, have all got too much. I’ve tried and failed repeatedly to get through it myself and with my partner R’s amazing help. We can’t manage it. As my physical health has got worse, I can’t manage day to day or keep on top of housework and daily living like this. It’s no nice place for R to spend time either (we are not living together but of course he comes here most days). So it’s time to change this. I got the quote (yikes £££) today and next week it’ll be done. I feel intensely guilty and anxious but also desperate for the resolution.
I am so stressed and strained beyond the limit. I’m trying to care for my fiancé. I can’t. He’s yet again been discharged from A&E, this time with DVT having been told he could have a pulmonary embolism at any time. No plan in place. Vascular problems, tumour, hernia, unidentified lump in his stomach, knee operations, diabetes, hips going to need replacing… how much more, how much longer Lord? Why? I’m screaming and crying inside. How much worse he must be feeling. Again and again after every emergency and discharge we are no further forward. All the risk and pressure falls right back on us. I can’t do it. I’ve been overloaded for weeks or months. Way beyond the breaking point. I need it to stop. Already I’m drinking with my medication to try to get knocked out. I cannot cope with yet more emotion and pressure. Cutting, bingeing, purging, everything is worse. I have no mental health support now, nor does he, so what can I do? Time has slowed down. I’m hearing things. I need it to stop. Please God, I want to say I know you will answer and not turn away from us forever. But I can’t see You or hear You or feel You. It’s been a long time that way. Xx