We made stained glass window pictures this week at the day centre where I volunteer with elderly people. In a small group we made three pictures – loaves and fish, the Cross and the sun rising above a tomb with the stone rolled away. Here’s the Cross (please excuse the scribbling where I’ve removed anything that could have identified the location; I’m probably being over-cautious but still…):
I made the templates and then we laid them on laminator pages, filled the designs in with tissue papers then added the top sheet and laminated them. This gave them a shiny finish. Once cut out we attached them to window panes to let the light shine through. My inspiration came from a YouTube video of Christian seasonal craft ideas.
It was trickier to do than I’d expected and tested my patience! The tissue paper did not stay in place easily especially when people with limited movement were handling it. Too easily it could be knocked, or the static between the tissue and the laminator sheets pulled pieces out of place. Surprisingly perhaps, all the clients enjoyed it and persevered. It helped that this week everyone seemed curious and wanted to be involved. With clients who often feel depressed or otherwise unwell, this isn’t always the case. This week the clients’ enjoyment encouraged me to keep going even when I thought everything was going to go pear shaped.
Thanks to one of the other staff members we were able to read a bit about how stained glass was and is made and where the colours come from.
We were very happy to do an activity strongly rooted in the hope of Easter. Of course compassion and generosity and love underly everything we do with the clients and we almost always learn, discover and receive blessings as well. However we wanted to do something explicitly exploring God’s gift to us at Easter. In our pictures, each side of the central Cross, the bread and fish represent Jesus’ presence amongst us, His feeding us, His Body given for us 2000 years ago and still on all the altars of the world; the empty tomb and rising sun represent God’s Son Jesus rising from the dead, as He is with us on earth so He is lifting us up to Heaven to be with Him where He is gone. The Cross itself we decorated in bright colours not dark. The Cross is deepest suffering but also and inseparably, our only hope, because there Jesus restored the ruptured relationship between God and man, so that we can now joyfully call Him Heavenly Father. There God’s light shines through to heal our broken hearts.
This Lent time seems to be passing faster and faster for me and I’ve felt I’m grasping at desperate moments to pray between crises, responsibilities, pain and dissociation. It was important to me to have this little time trying to reflect on the Easter promise with those Jesus loves so much, the frail and lonely. Thank you, Lord.
I’m praying for moments of peace throughout your every day.
TRIGGER WARNING: this post discusses diet, eating disorders and food restrictions.
I was back at hospital a couple of weeks ago with another bowel pseudo obstruction, with a lot of pain and bleeding. Scary. Thanks be to God this was not as serious as the obstruction I had last year. However over the past year on the whole I have had a marked increase in gastric symptoms which are part of my POTS and Ehlers Danlos Syndrome. It’s painful and disruptive. Possibly it’s also doing the rest of my body no good if I’m having inflammation or not absorbing nutrients properly.
I’ve decided to change how I eat along the lines of what I’ve read can help people with my conditions. It will involve a lot of protein, cutting right back on wheat and sugars (this will be hard for me!) and eliminating junk food. It will be quite bland at first whilst I find out what foods work for me or not. I don’t have celiacs but people with POTS and EDS can have problems with wheat that aren’t celiacs.
I’m conflicted because any strict diet, food restriction or elimination is triggering to my eating disordered thoughts and voices. Moreover I can’t deny that I’m hoping that my change in diet will lead me to get back control of my hunger, cravings and bingeing and that I’ll lose weight. I really want to sort my stomach problems but control and losing weight are hugely strong desires too. I’m overweight and repulsed at myself.
Possibly what I’m doing isn’t what professionals would think is a good idea if you have bulimia, binge eating disorder or a history of anorexia. Usually elimination of foods isn’t advised and you are supposed to listen to your body’s cues. I have no idea how to safely listen to my body’s cues. It seems to constantly scream “hungry!” In a way, am I listening to my body by recognising my gastric issues and the fact that my current eating is doing me no good? But I’m furious with myself for the binges and constantly want to punish myself. The diet that I’m going to be following will cut out a lot of foods I binge on. Will that stop my binges being triggered? I’m hoping so but I just feel I know I’ll lose control.
I’m trying to think of the changes as a long term way of eating, making it work for me throughout my lifetime, not a fad diet; also I’m trying to remember the fact my body needs this to get better.
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.
I am seeing a psychologist at the pain clinic for a short number of sessions. When I was first sent an appointment to do therapy I was really worried and almost angry about it, feeling I’d had enough of therapy in other services where I couldn’t trust the therapists or the community team and I couldn’t risk making myself vulnerable again. On top of that I was sure the therapy would be from the point of view that nothing is wrong with me, the pain I have is unnecessary and my fault because I’ve rested too much and not pushed myself enough, which is an attitude I’ve encountered too many times on so-called pain management courses. Amazingly it has turned out to be a very different experience.
I don’t tend to find pain is terribly related to my mood, beyond the fact that I’m more anxious and low when the pain is worse. It’s also connected to flashbacks but I don’t quite know how. We identified in therapy today that I find awareness of my body very difficult. Maybe that is common in personality disorder and certainly in dissociative identity disorder.
I want to try tracking my pain and my mood together to see if this may show up any links I’m not aware of. I’ve done the two separately before as part of learning to pace activity (I did not find the recording gave me any new insights) but I’ve not really done the two together, not over an extended period anyway.
Phone apps exist to track your mood but I’m looking for an app that tracks mood and pain. Ideally I’d like an app where I could record a numerical score for my pain and my mood every couple of hours through the day, with space to make a brief note if something very significant happened (for example if I have flashbacks or an event triggers traumatic memories or dissociation).
Have you used an app like this and did you learn from it? Any recommendations would be very helpful.
“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.
TRIGGER WARNING for discussion of abuse and control
The worst thing my abuser made me fear was not what she would do to me. Actually I accepted that without question.
The worst thing to be afraid of is myself. That’s what my abuser made me most afraid of. Me. What I really am. What I can’t stop. What I would do to her. What I would do to everyone I loved. What everyone would find out in the end about me. What the people watching thought and how they’d take my loved ones away because of me (the watchers didn’t exist, I’m told, but it was too deeply engrained for that to make any difference now).
I was supposed to love my abuser, and that made it worse, because the revulsion I felt showed I should be repulsed at myself.
When rarely, I told what had happened, nobody heard or nobody believed, but she’d already told me they wouldn’t.
I escaped from my abuser, in physical terms. And I know I’m very fortunate because so many don’t.
The one thing we can certainly never ever escape from is ourselves. The one way my abuser ensured her power over my present and future as well as my past is this terror of myself. Add to that my “alters” (the child that screams unendingly because no-one heard her when it mattered; the violent lunatic full of anger as I’m tricked again and again by those who supposedly love me) – and my abuser is not only in my mind now but sickeningly in every current relationship and interaction.
I can feel her laughter and ridicule now. I feel surrounded.
This picture has taken me over 2 weeks to colour.
I love grown up colouring books and usually no matter how awful I feel I can still colour. It’s a way of escaping for a while. Drawing is harder and needs some part of my creativity that gets frozen by depression but colouring is different. But the past month has been terrible and I couldn’t even do that. Tonight I finished this picture at last. It’s not any good all in all. I like a couple of the flowers.
Colouring for a few minutes was about the only time today I wasn’t breaking down overwhelmed with panic, asleep, mindlessly scrolling through the phone, or lost in dissociation. One small step, maybe.
I’m so mad with myself for not being able to do the simplest tasks, letting the house go, trying and trying and getting lost after a few minutes, binge eating, boiling over with emotions… cutting off for a while… in pain if something or someone interferes with that state… only knowing how to be alone because I only know how to be left even if I desperately want saving… trapped by fear and anger at myself, just hoping to get back to numb again and not remember. Sleep.
I thought I was losing my hearing. Over the past 2 years or so, I’ve found myself asking people to repeat themselves more and more often. I noticed it particularly when I was working in the department store. What customers said came over as a jumble of sound to me, often as though far away, or sometimes I’d miss it entirely. At the day centre where I volunteer, a couple of the elderly clients remarked that my hearing was terrible an I needed a test. Discussing this with a friend, she commented that she’d long thought that my hearing was worse on the right side.
So I booked a check up and hearing test.
I had my ears checked and syringed. Nothing remarkable was found. No mountainous heap of gunk blocking my ears 🤪.
I had the hearing test.
Everything came back normal.
What is happening?
I’m left thinking that my hearing “disturbances” are to do with attention, dissociation absences, or the effects of overwhelming anxiety. Certainly, high anxiety affects my attention span and my memory. I can talk to someone but not take it in, or not remember what someone has said. Dissociation definitely affects my memory and I lose big chunks of time, not knowing what I’ve done whilst I’ve been gone. If I’m very emotional, I may be unable to remember events before and after the time of heightened emotion.
Is my weird hearing loss / confusion also because of anxiety, distress or dissociated absences? So not only is my memory affected, but also the information does not come into my brain normally in the first place?
Does anyone else have this problem?
Whatever it is, it’s scary. It disconnects me from the people around me, as if I’m floating in a vacuum or surrounded in bubble wrap. Sound doesn’t pass through the bubble wrap wall at all, or if it does, it’s chaotic noise that’s very unsettling deep into my mind and body. It makes me scared and I just want to get away.
Maybe it gives me some insight into what it’s like for people who live with deafness.
I feel so sad and I’m doubting my mind. I clashed with someone I care about. It doesn’t feel right to put the details here much as I want to. Basically I felt we need to make a fact very clear to someone we are working with, a fact that ought to have been made clear from the start. In itself the fact isn’t right or wrong but it does totally change what we are offering the person and what they will expect and it’s absolutely necessary to say it. The person I clashed with thinks there’s no need to say it, it doesn’t change anything, nothing was ever promised. I tried to explain what I believe and he said he would write off working with the person completely.
There’s more to it but that’s all I can say here.
It sounds like a tiny thing but it’s shaken me and got me lost about how I see things and how others see them and the gulf between that. What I see as a clear duty when others don’t. What I expect. How I deal with uncertainty (rather, don’t deal with it). The gap there is between my mind and the people I care about. It’s brought back the ever-near memories of people telling me I expect other people to look after me, or that I didn’t keep my word, my responsibilities, when I was doing all I could to get it right for everyone and hurting myself to punish myself for my failings and still wasn’t good enough.
I’m sad. It probably doesn’t help I’ve been ill physically this weekend.
I know this blog has been too down and negative lately and I need to change that. I’m sorry.
I haven’t slept yet tonight. It’s unusual for me as my medications usually knock me out soon after my night time dosage. That sleep is one of the much needed escapes I rely on. My head is all light and floaty now but … no sleep.
I think it’s because I’m still in the process of coming back from a dissociated state that I slipped into at some point early yesterday evening. This is one of the times the process of coming back is awful and drawn out. The time for which I was gone was good on this occasion. I think it gave me some kind of release. I am not totally sure. I know the little-child-me took over. I think she was happy when I answered her at first. But she got very scared in the end. But coming back is horrible, partly because of the guilt about what I did whilst I was gone (it’s automatic before I have any evidence to know what I’ve done) and partly because of the confusing emotions I get whilst I’m coming back. Tonight the start of coming back brought this sudden switch to emptiness combined with a feeling of being bereft. Time felt distorted. Then jumpiness and feeling sure I was being watched developed as well, along with the recurring notion people were standing just outside my field of vision waiting to grab me (and do what I don’t know but it’s scary).
Suddenly exhaustion is tugging at my brain and I feel as if I’m swaying and I know I’ll sleep now. Writing it down seems to have helped.