I’ve been down this road before…

The last few days have been very difficult. I have felt a recurrence of symptoms of my depression and been frightened by what that means. Is it coming back? Do the signs point to another long trip downhill? I don’t know. I do know that there have been chunks of days where I have felt dead. Or wanted to be dead. Or, more accurately, not seen any advantage to not being dead. These hours are relatively short and I can suddenly find myself feeling right again with no reason. But there are echoes of such a terrible time and it scares me witless. I can not live that way again. I will not.

It doesn’t feel like a permanent thing. It’s just very scary because I remember so clearly feeling that way all the time and the thought of that time is just dreadful. Painful. Too much to bear. I am thinking that all the work I have been doing on the OCD has revived some of my depressive tendencies. I also think that the situation at home has become so miserable that anyone living it would feel some sort of sadness and lethargy, and with my history and patterns of thought it’s probably very understandable that I am feeling this way.

As I’ve written this, I’ve rationalised it, and I know it’s not a return of the depression. It’s sadness, tiredness, and a bit of self-indulgence. I can cope with this. I can wait out those awful, dead hours because I know that the light will come back. I just have to stick with it. Keep breathing, keep thinking, keep writing. I need Ruby. I need to get into her and be her. I know she’s me, but she’s a me with added extras and so much more strength than I have at this moment. I need to find her, dress myself in her, think like her, walk like her, stand tall like her. Then I’ll be okay. I’ll be real again, loved again. A person with possibilities. A person who can’t be shattered by the piercing, casual cruelties that are currently being shot my way. I’ll wake her up, make her real, and then we can stomp into the future like the flamboyant, powerful, beautiful pirates we are.

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Refuge

I am feeling everything and anything today. So many intrusive thoughts, so much anxiety, so much painful loss. Trying very, very hard to keep going with the CBT tools.  Trying so very hard to maintain a sense of reality and not tip over into complete, unstoppable panic. Trying not to run away and disappear myself, vanish, go silent, stop. Release in writing. Refuge in music. Strength in friendship. Love in unexpected places. I can find it.

“Breathe Me”

Help, I have done it again
I have been here many times before
Hurt myself again today
And the worst part is there’s no one else to blame

Be my friend
Hold me, wrap me up
Unfold me
I am small and needy
Warm me up
And breathe me

Ouch I have lost myself again
Lost myself and I am nowhere to be found,
Yeah I think that I might break
I’ve lost myself again and I feel unsafe

Be my friend
Hold me, wrap me up
Unfold me
I am small and needy
Warm me up
And breathe me

Be my friend
Hold me, wrap me up
Unfold me
I am small and needy
Warm me up
And breathe me

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Mr Blue Sky

The soundtrack to one of the best periods of my life was ELO’s Out of the Blue. I listened to it on repeat on a nearly worn-through cassette on my shiny yellow sports Walkman. I went everywhere hearing Jeff Lynne’s voice and singing along in my head and I remember that it was a great time when I felt good about myself and happy and I expected life to be wonderful. I was 14. It was an unusual easy summer in amongst years of fear and chaos and abuse. I don’t know why that time was different. I just remember that for a big chunk of that year I was happy. And when I hear ELO now it provokes pleasant memories. I watched them last night on YouTube and revisited all those good feelings and had a little cry for the loss of that time and then a giggle at the thought of me, surgically attached to my walkman, wearing out that tape, loving myself massively and thinking I was so very cool. I wasn’t. But I thought I was, which is all that matters. I think today I’ll play that album again and see where it puts me. Maybe I’ll be very cool just one more time.

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“Shut up and move with me, or get out of my face…. “

“Shut up and stay with me, or let go of my hand”

I want to move on. I want to run very fast and very far and I am being held back by people who want me to stand still. These people desperately need to maintain the status quo and have manipulated me for many years to that end. Well now I’m done with it. I’m choosing to leave the misery behind.

I’m getting better, I’m determined to have a fulfilling, productive, exciting life. I need to keep going forward because I can not tolerate my stagnant existence even one more day. Today these people are going to hear from me. I’m not cruel; I won’t abandon anyone right this minute, but things must change. I’ll give them a choice. I’m going to tell them: run with me or you’ll absolutely get left behind.

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So that’s that.

I’m destroyed. But I’ll get better. It’s hard to dance with the devil on your back. So I’ve heard.

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And Now There’s Ruby.

Counselling is going very well. I’m slowly but surely battering the OCD into submission. I have a few new tics and oddities to rein in but I’m coping. I have strategies. I have confidence. It’s very hard work, I have to admit, but it is absolutely worth it. I can now imagine a future without the anxiety and the compulsive checking and the distorted, angry thoughts. I will also admit that I am getting a little bit scared of how I will cope when the sessions end, but that’s a while off yet and I know that it’s normal to feel like that. I won’t be left to go it alone until I’m absolutely ready.

This week we did something that felt wonderful. I am so excited about it and so determined to make it work that I can’t keep it to myself. I haven’t told anyone real yet, but I can write it here. We made Ruby. Ruby is tall and strong and healthful and confident. She has no OCD, she doesn’t need to constantly check her face or her hair or count things. She is powerful and makes good choices about her mind and her body and her future. She is fearless in all parts of her life. We stood her up, dressed her from head to toe in what makes her feel good, we armed her, we talked about what makes her real and then we named her. I picked Ruby. It was a nickname someone once gave me 20 years ago when I was in a wonderful feminist collective called the Front Bottoms. It was an amazing time in my life, a time when I felt supported and empowered and part of something very special. The name brings back those good memories and it just seemed right. Then when we had made her complete and believable I stepped in to her. It sounds so silly as I write it. But I can be her whenever I need to be and the power that gave me is incredible. I feel taller. I feel stronger. It’s not dissociation, I’ve been there and done that; it is ownership. Ownership of my strengths and my confidence. I can access these traits quickly and easily now that I have Ruby. Ruby takes no shit. Ruby can be anything she wants to be and is frightened of nothing. Well guess what? Me too.

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It’s just a ride.

It has been a week of up and down. I am dealing well with the OCD behaviours and making some good progress and I’m happy about that. But I have been in very low mood, dwelling on the last 8 weeks and struggling to comprehend the massive impact of what’s happened to all of us. I can’t quite get my head round where we were at the end of February, in Critical Care, watching J in a coma, wondering if he would live. And the weeks after that have been exhausting and frightening and I think I will always feel nervous about the transplant and the possibility of rejection and infection. The whole two months have passed in a blur of anxiety and adrenaline and just utter knackeredness. I can’t believe how far away it all seems and how unreal it is. I think depression after trauma like this is very normal.

Sadly, I have lost some friends along the way, people who I thought meant so much to me but who, in the difficult parts just stopped being there. I have also realised that some of my friends are unstoppably wonderful and kind and generous. I have been propped up, carried through and loved immeasurably by these friends. I am so very grateful and I can’t possibly ever repay those kindnesses. I cry a lot every night when I get in bed and lie awake and think about how loved I have felt and how those amazing people have saved me. There have been simple things like gifts of food, cards, flowers, help with washing and ironing. And there have been gifts of texts and phone calls late at night when I have been alone and frightened.  Kind words in unexpected moments. And gifts of hugs, kisses, hand-holding, couch space for napping, patient listening. And just so much love. It has made me humble. So, yes, I am sometimes down. But also up. Very high up.  Lifted on strong shoulders.

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Therapy. Again.

It’s been a rough few days. Raging paranoia, anxiety, panic, sadness, mania, all flooding through me, as bad as it has been for a long time. I’ve been practising compassion-focussed therapy and it is such hard work to get to that state of mind when everything is racing and frantic and distressing. I have instructions from Lucy for tackling my OCD this week and even thinking about following the instructions causes misery and panic. But! I have done well. I have been able to do what she asked so far. I sat through the panic and did what I need to do. It’s going to be a very long time before this starts to feel okay but I am absolutely determined to do it. I will not live with these behaviours and this crippling anxiety any more. It’s got to be worth this temporary increase in symptoms to reduce them in the long term. I am placing my faith in the CBT, the compassionate mind stuff, Lucy, and me. I can do this. I have done it before, I can do it again. The difference this time must be that I carry on after the therapy has finished. I have to build up the skills and keep them sharp. It’s been a miserable few days, but underneath, if I really dig down, I am very happy. Things are changing.

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Judgement.

I have been thinking about J and his transplant, mainly about how people react to him and to me when we tell them that he’s needed a new liver. People sometimes recoil, sometimes look shocked, some seem relieved. I think the relief might be because he is so frail and looks so unwell that people assume he has advanced cancer and it’s a relief to them when I say what’s happened to him because they assume then that he will recover and live a normal life. What annoys me most about every single interaction is my (and J’s) need to always clearly state that he has an autoimmune disease, he is not an alcoholic. He hasn’t caused this liver failure by being a drinker. As if somehow that makes a difference. I have tried recently to stop doing this. Alcoholism is as much a disease as PSC. I am the child of an alcoholic and I have a whole raft of stuff to write about that when I’m ready. It was a terrible thing to live with but thanks to that upbringing I recognise that it is a disease. And if that disease leads to liver failure, the person who needs transplant is no less deserving of health care (and by that I mean the transplant, the aftercare, and a structured and robust program of therapy to try and prevent re-dependence on alcohol post-transplant) or the respect and consideration of others. Every time I defensively say PSC I am demeaning people who are suffering from a different disease. Nobody WANTS to be alcohol dependent. Just like nobody wants PSC.

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Who I am.

I’m sad. I’m lonely. I’m tired and can’t sleep. I’m frightened of so many things that I don’t know where to start to deal with them. I’m losing my hair. I’m forgetting to eat. I’m drinking too much. I’m obsessive. I’m compulsive. I hate my body. I hate my face. I feel worthless and stupid and cold and unloveable.

But.

I’m kind. I’m gentle. I’m loving and generous and defiant. I am forgiving. I am unbeaten. I am compassionate and willing and resilient. In spite of everything I am happy to be Pippa. Whoever she is.

(h/t Cassandrarei, who made me think. and made me feel better. Thank you.)

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