Tag: physical health

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

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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

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

Undermined

I’ve just had a family member to stay who I find it very stressful to be around. She rapidly and repeatedly undermines and dismisses things I’m experiencing and what I achieve. She makes it clear she thinks I’m faking my physical health conditions, that my mental health conditions are my own choice, that I’m lazy, a let down and a failure. She starts gradually drip by drip until nearly every comment makes clear what a waste of space I am, her hatred of me and any sense I have of myself apart from her statements and blame of me is gone.

Right now I wish I’d cut off all contact with her as I almost did 5 years ago then 4 years ago when her behaviour to me, along with the circumstances I was living in, repeatedly put me in situations too closely mirroring those I was in as a child trapped with my mother’s emotional abuse.

But – and I almost didn’t write this – she’s my step mother and my father thinks she’s wonderful, and what do I do if I’m to allow him happiness… and keep some relationship with him… which actually, I think she would rather I did not have. It’s something else she’s gradually tapping away at. Rather as my mother did.

What obligations do I have to him? To her?

I’m seeing far too many circumstances repeating here. It’s very hard to try to go forward building up my recovery with this going on. But this kind of thing always will go on, and I need to make my own choices and change my own behaviour so I don’t act in the same way I did as an abused child.

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

Losing Lily

TRIGGER WARNING for discussion of suicide, of deaths of people suffering mental health conditions, and of failings in mental health care. If you are in mental distress, caution is advised in reading this post.

A NOTE: This post mentions anonymously the death of a person who had recently left the care of a service I worked in. There was an investigation into the circumstances of the person’s death and the investigation has now concluded. I want to make clear that this post discusses solely my experience from my point of view and my knowledge of the situation, my thoughts and feelings. It does not reflect the position of the service I worked in, or of any other person or team involved in the person’s care.

During the time I worked in a specialist community and inpatient mental health service 7 or 8 years ago, two of our patients died. One lady had moved away to a different part of the country so hadn’t been in our service for a couple of years when she tragically died from an overdose. The other lady had just left our inpatient ward (as far as I know against doctors’ advice but assessed as having capacity to make her own decision in this regard) and gone to live independently, but deteriorated rapidly within weeks and died 4 months later. I’ll call her Lily*.

At any one time we were working with several other patients in my eyes dangerously close to death – because of their drive to harm themselves (by overdose and substance use and so on), because of their suicidal intentions, and/or because their organs were so damaged physically by the effects of their mental health conditions (starvation and other eating disorder or self-neglect symptoms leading to heart failure or diabetic coma, for example).

We were working constantly short staffed, physically and mentally unwell ourselves because of the workload and emotions and conflicts and fear of making mistakes, within constraints of time and policy that often felt out of our hands, trying to provide a service fair and the best for everyone, but knowing we could not give enough.

Lily has never left me. She’s come to my mind every week or so since the winter she died. I was a secretary, not a clinician. I didn’t know Lily as much as I got to know some of our other patients. She was intelligent and wanted to do well and was very driven for her goals. She made close friendships with a couple of people on the ward. Yet, she really needed love which I think she often didn’t find where she may have most expected it. She really did start to get better but something very painful remained impossible to reach. Sometimes I wonder if she was hurting so much she’d had enough. If everything was so locked in and disconnected from the people she needed and wanted to trust, that in her pain it felt like time to go – if she didn’t choose exactly when but she did know she’d quietly slip away.

We didn’t reach her. Even as she got a little better, we couldn’t reach through her pain. We didn’t catch her. We didn’t keep her safe when she was slipping. We lost her.

There was an investigation – many investigations – after Lily’s death. The final investigation ruled that the harm she suffered, and her death, were avoidable. I just now read the start of the report of the last investigation and horror and panic and confusion took over. The room swayed and spun and I couldn’t breathe. I’m still freezing cold.

Her life is on my hands. Not mine alone, and not the service I worked in alone because several other services were involved – but I was there.

Of course we had not wished to reject her or abandon her or disown her or her care. One of the worst things is that a lot of what was judged harmful in the report, were either actions in line with procedures we were taught to follow to give safe and fair and consistent care to every patient in the service, or matters that within the constraints we faced, we could not personally control. But whichever, it wasn’t right or safe for Lily. Consistency and guidelines and constraints are one thing but every individual patient is in very individual circumstances at very individual risk. Procedure under huge constraints imposed from outside, doesn’t make account of that.

What do we do when the steps that were supposed to have been good or safest or standard, or following established guidelines, or the best we could give, or taken in faith in the decisions of those we work for and trust, were actually steps that led to a death?

Personally, what should I have done and what do I do now? My heart is screaming at me, you did not speak up, you did not speak when you had concerns at what you heard, you did not act, you did not follow your gut – you followed instructions instead, and you know this wasn’t the only time.

Good intentions or having tried to follow what was supposed to be good enough, or even best, count for nothing now.

I’m reminded of my mother and her care and deterioration; how we were locked in an agonising cycle of her discharge, the same crises repeating, her deterioration and readmission, worse and worse every time, all of us knowing what would happen but all held powerless by legislation that didn’t allow us to put in place a few simple steps that would have kept her safe. Ultimately an adult judged to have capacity to make a decision is allowed to make a decision that will harm herself, allowed to cut herself off from sources of help, allowed to deceive everyone who wants to help. Even when those decisions and actions are the work of a delusion founded in deep-rooted, severe psychosis. My mother couldn’t be more different from Lily but I see similarities in how the hands of those who wanted to help were rendered powerless.

In my head when Lily stares at me, slowly fading, I don’t know what to say, and everything I should have said back then echoes around me.

(*not her real name. Again please note that the opinions and thoughts and experiences mentioned in this article are mine alone.)

Ginny xxx

How do you love someone who is hurting his/herself when it feels you can only watch?

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.

Ginny xxx