Category: The emotional and the physical

Weekly update: “I had a cunning plan…”

“I’ve got a plan so cunning you could put a tail on it and call it a weasel….” (Blackadder, in Blackadder Series 3, written by Richard Curtis and Ben Elton)

As ever, I had great plans for getting my revamped blog up and running, but things did not go accordingly. The week before last I was knocked flat by very painful endometriosis symptoms. Then last week was extremely busy with two wonderful occasions celebrating my goddaughter and godson’s First Holy Communions.

rosary

The travel involved meant that my chronic pain flared badly, though I am absolutely delighted and thankful we could go and celebrate with them. Their families have become dear friends. I realised I have known my goddaughter’s mum for 17 years. That’s incredible. Looking back it’s quite scary how the time has passed. I’m deeply thankful for her friendship and how she has made my husband and I part of her family, through so many ups and downs and so many times that I have not been able to be the friend I’d want to be and have not been easy to be around.

Here is some baking I did last week for tea with my godson’s family. It’s the first time I have baked since Christmas. It’s therapeutic for me as well as a good way to make a gift. These cakes and tea bread were all gluten free.

baking

Today, we got some more unexpected bad news about my husband’s health, including the fact he needs yet another surgery. A problem we had thought to be relatively minor could be or could become very serious. Coming as it does, clashing with what had been elation at his getting through his previous surgery, this is a shock for him. We are both somewhat stunned. I feel a certainty we can walk through this whatever it leads to, because we have each other, the sacrament of our marriage strengthening us, the unchanging love of God, and good and quick medical care here. I will say more in future posts but it’s another case of “thank goodness it was caught early”.

On the positive side, the doctors are still permitting us to go on our holiday to Greece next week. This will be a very important rest and please God, time of happiness, for my husband before he faces his next surgery. We are going to take things slowly in Greece and take plenty of time to appreciate the little beauties in each day. We will be by the sea for much of the time and I think that itself is healing, through God’s grace.

As you can see, this means I have not been able to do with my blog what I wanted to. I am sorry not to fulfil the schedule I had set out. I don’t want to let you down. I am going to postpone making any major changes until we come back from holiday and I can dedicate particular time each week to this blog. In the meantime I will update when I can and share some of the joy of our travels.

Ginny xxx

 

What would you like to read in my revamped blog?

Some big changes are coming here at intothisbreakinglight, including a new name. See my previous post, Changes Ahead .

What would you like me to incorporate in my revamped blog? I want to help, as well as sharing my journey, so I’d love to know what you’d be interested to read.

Here are some elements I’m considering including:

– A specific section collating suggestions and resources for living with PTSD and complex trauma; what has and hasn’t helped me. I need to find out how to create this. Sifting through chronological posts is just not accessible for readers in my opinion, especially if the reader is exhausted or distressed.

– Similar specific sections regarding Borderline Personality Disorder and eating disorders / body image.

– A regular “question time” where I write a post in response to a reader’s question. Maybe once per month at first.

– A weekly journal-style entry to share what has been happening in my life and plans for the near future.

– A regular posting schedule. I don’t know yet what frequency I’ll choose. I will also post outside this schedule but I think it would be good to have a regular schedule I always stick to (even if I start with just one weekly journal and one other weekly post).

– I meet with medical students and researchers to share my experience of living with mental and physical health conditions. Loads of interesting questions get asked in these sessions. I think I may start writing some posts expanding on these questions (of course, not breaking any confidentiality).

These are just some of my plans. What do you think? Are they any good? What else would you like to see?

Ginny xxx

I want to make changes in this blog

I want to make changes in this blog

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.

Ginny xxx

Waiting and feeling like a fraud

I had to come to hospital this afternoon for an urgent MRI scan. I’m in a room off A&E waiting for the results. The GP told me I had to come in because my back pain, numbness in my legs and incontinence have got rapidly worse than usual and he was concerned I may have nerve compression. I feel sure the scan will show nothing or at least nothing new. Waiting and waiting it’s getting worse. I feel a total fraud. I feel sure they will tell me nothing is wrong. That I’m crazy. That I’m stupid. That nothing is wrong and there’s no reason for the pain. I feel panic and sick and dizzy thinking of it. I want to go home. My mind is spiralling thinking how angry my GP will be an how my relative who has found out I’m here, who doesn’t believe I’m ill in the first place, will use this to show how “it’s all in my head”.

I feel like I’m such a fake.

I want to go home to bed.

I’m so tired of pain and tired of hospital. Everything I’m trying to do, which the pain clinic tells me is meant to help, is making the pain worse. Or it’s getting worse despite it.

My head aches and my stomach feels like something clawing it and twisting from the inside out.

I don’t want to bring only despair

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.

Ginny xxx

On the move

Its a few weeks until the wedding but I am getting ready to move house, packing boxes to go over to our new flat. It feels as though I’ve been trying to get to this point for months and not making progress, through a combination of my exhaustion, my physical disabilities and mentally being unable to make decisions or forward plan. At last we are making progress! Thanks be to God!

The approaching deadline of our wedding is certainly a motivating factor. So is the fact that we are putting our home together in the new place (my fiancée has moved there already). We are blessed that our financial situation is better than it was and this means for the first time – first time ever for me and first time for years for my fiancé – we can actually choose some furniture we like and pieces which all match or coordinate, to make a calm and restful environment for us both. It’s somewhere we both want to be and feel thankful to be. For the first time it’s not a move that’s fleeing something, escaping somewhere, or because of a loss (death, broken relationship, having no money to live, for example). We are moving to start our married life together and that’s wonderful. That helps me keep going.

It has been very hard for me to tolerate the mess and chaos of packing. My threshold for feeling overwhelmed and having a meltdown is lower than usual. I’m trying to recognise that and actively spend mental time focusing on the good we have achieved so far and the good to come. Actively thinking about the good is much more effective for me than saying “just don’t think about it [the things panicking me]” “just push it away” “just don’t worry about that” “you just have to keep it simple and be positive”. (What exactly does that last one mean, anyway?). I can’t “just” stop a thought or feeling by choice, and the fact I can’t do that when other people require it is likely to make me feel even worse. But I can dedicate time to thinking of a positive future, however imaginary it may seem, or to counting tasks I’m thankful we have achieved.

Yesterday a friend of mine in the parish took lots of my surplus kitchen things and clothes to give to a poor family and some refugees arrived in the parish. They will be able to use some of my furniture as well, if we can find a way to transport it.

Tomorrow a lovely charity are coming to take away all kinds of other things I can donate or that need to be disposed of, and to help me pack because I can’t physically do it myself. This is amazing.

My cat doesn’t think it’s so amazing and is walking around with a very suspicious look on her face. She doesn’t like a lot of bustle or things being moved round the room. She’s alternately ever so affectionate, then moody and trying to scratch. I think she has lived in so many different homes before I adopted her that she thinks she will be left again – that the signs of moving mean I’m going to go away and abandon her. Poor puddy cat has attachment problems just like me! 🤣

We shall have to see if her mood improves once she realises there will be lots of cardboard boxes to hide in…

Ginny xxx

Picture by memecenter.com

I told him what I see. He explained it away.

I told my dad today about my concerns over how he’s being treated by my step mum. I told him I’m worried for him. I told him about how she’s treating me and other people in the family. He denied it is happening. He denied any possibility that he may be being treated very badly and that he may not realise because he has had so many previous years of emotional abuse. He says there is no problem for him. He put my experience and my concerns for him down to the fact that I had harmful experiences when I was abused when I was younger and that means I perceive interactions now as a repeat of what was done to me back then when actually nothing is wrong / there is no similarity, and that my “world view” may not be a good one because of what was done to me then. Basically I am wrong, I am the problem, and there is nothing wrong at all in how my step mum behaves to him or me or others. He denied events that have happened, denied things that have been said, and bought totally into my step mum’s view of me as a failure, a let down, spoiled, the problem, unwelcome, at fault… he even upheld her emotional attacks on me as being fine and my feelings essentially as being because I have problems.

It was pretty much what I had expected would happen but he had a much deeper rooted explanation than I was ready for, for why things are not really as I have experienced them to be. At least he did not deny my experience. But he explained it away in such a manner that it secures my step mum’s casting of me as the difficulty and her as the perfect spouse and mother figure.

My concern was primarily for him and how he is being treated but she has cast me in such a role that no concern I raise, no event I try to discuss will have weight with him.

It is rather as my mother did, drawing my dad in to such an extent that he would not hear when I told him multiple times about her emotional, physical and sexual abuse. She could invasively abuse me pretty much in his presence, emotionally taunt and threaten me for hours on end partly in his presence. At the time he supported her, joined her in her emotional attacks on me, often continuing himself afterwards; somehow he ignored her physical actions to me… and then later when at long last he listened to me (when I was an adult, hospitalised) he claimed no memory of any of the events. He was that drawn into her world.

His blindness now both traps me again and leaves me alone. Traps me where I cannot reach him to warn him what is happening as he just won’t hear me. Leaves me alone because it feels universally declared that I’m mad, I’m wrong, I’m the problem; what I’m experiencing and seeing isn’t real. It feels like all the power has been handed back to my step mum. I feel as I did when I was a child; alone and my sense of reality torn to shreds.

Xxx

Greek deliciousness and changing tastes

Continuing to share photos of our experiences in Greece, I think some of the foodstuffs are worth their own post!

The vegetables alone deserve a mention and the Greek treatment of them is totally different from the UK’s. Above is a picture of part of my lunchtime snack at the shopping mall. It’s a roast aubergine with tomato, courgette, herbs, olive oil and a little Greek cheese. (Similar and even tastier than this was vegetables “imam” style, involving aubergines slowly baked with a tomato sauce, which we had at a little restaurant by the Cathedral.) Greek meals incorporate vegetables as an interesting, focal part of the dish or course. They are bursting with flavour already from the climate but as well as this they are prepared with love, whereas in the UK we often drop them on the plate to tick the “5 a day” box and eat them as a chore to be got through to deserve the enjoyment of the meat or sweet. I think we miss something there.

On a similar line, that’s a Greek salad.

Fish and seafood is also important and I tried quite a bit. Sardines are totally different and definitely not tinned there. But much as I wanted to, as they look great and my fiancé enjoys them, I could not get my tastebuds round calamares (squid):

I think I’ll stick to photographing them 😅!

Greek breakfast usually involves hard cheeses and cold meats, and even stuffed vine leaves on occasion, as well as eggs, bacon, fruit, bread, cereals, yoghurt, nuts and so on being available at the hotel buffet.

Not forgetting sweets and desserts:

These macaroons and truffles were just a couple of the amazing selection at a sweet shop near our hotel. The sweet shops we saw also sold a huge variety of nuts – often a better variety than I’ve come across in many health food shops – as well as honey, preserves, halva and candied / dried fruits.

Finally, there are our delicious aperitifs at a rooftop bar looking out over Athens (incredible view to feature in my next post!).

Before we went, I was not sure how I would find following the diet I need to at present because of my EDS and gastric complications (no wheat, minimal gluten, minimal grains, no milk or yoghurt or soft cheese). I found it much easier than I had expected and that there were loads of available choices. I couldn’t try any of the pasta or pizza which was a shame but there was so much else to choose from. There are fewer gluten-free substitute foods on the menu, for example, I got the impression that restaurants don’t typically offer gluten free bread or pasta. However with so much else free from gluten to choose from, they aren’t missed (and they don’t feature much in my regular diet anyway). Admittedly, for someone who is celiac and has to be stricter than me, or who is completely dairy intolerant or vegan, it would be harder when dining out.

Eating felt much more enjoyable than it usually does. Everything just tasted riper and better. How much of that was objectively true and how much my “grass is greener” perception because of being on holiday, I’m not sure! Meals felt more filling more quickly. Or was it the heat?! I didn’t feel the intensity of hunger and cravings that I hate – maybe I shouldn’t but I do – and I didn’t feel out of control. I didn’t feel such a desire for sugar and have to deliberately choose to substitute it with protein, as I’ve been trying to. I just wanted other things. Back home, my regular food tastes rather lacking. On the positive side, this inspires me to learn to cook some Greek dishes once my house move is complete and we are married in the autumn.

Ginny xxx

In Athens

In Athens

I thought I’d share with you some of the beautiful things we’ve seen and experienced in Athens so far.

There are countless interesting churches. In the rear of this picture is the main Greek Orthodox metropolitan cathedral, The Cathedral of the Annunciation, recently refurbished, whilst in the foreground is a centuries-old church known as Little Metropolitan, really St Eleftherios Church (which we haven’t managed to go into yet as it is often shut, unusually for this area). On our last trip here my fiancé and I prayed outside under the moonlight, giving thanks for each other and asking God’s guidance during our engagement.

This past Sunday we were able to go to Mass at the Catholic Cathedral of St Dionysus where we found this very peaceful portrayal of St Joseph and the Christ Child.

There are several people we need to buy gifts for and also we are going to bring some non-perishable Greek foods home to form part of the meal after our wedding. So we went through the Monastiriki which is a set of narrow, winding streets packed with little open-fronted shops selling jewellery, leather bags and sandals, T-shirts, traditional dresses and embroidered shirts, icons, crosses, ornately covered Bibles, food (olives, baklava, Turkish delight, sweets, herbs, stuffed vine leaves, olive oil), drinks (lots and lots of Ouzo and Metaxa brandy miniatures), replicas of Ancient Greek artefacts and statues, toys, and countless souvenirs (some tackier than others – apparently you can fit a picture of the Parthenon onto everything from a teacup to a wooden replica of a certain part of the male anatomy!!).

It’s worth looking up, as well as at the shop fronts, because there are often pretty balconies above you and twisting grapevines where doves sometimes sit.

With new sensory experiences around all day long, I have needed to balance busy hours with down time, and we are so fortunate to have a pool at the hotel to cool down or rest beside.

My fiancé has been utterly impressively amazing at getting me and my wheelchair around – not at all easy when the streets are cobbled and up / downhill. I’ve been really concerned he will wear himself out caring for me. I walk where I possibly can but it is not much at all. My fiancé’s love is a deep blessing I never could have imagined existing. I want to help him rest and care for his own needs too.

I will post another Greece update with more photos soon.

Ginny xxx

This boat is sinking

This boat is sinking

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?

Xxx