Tag: physical health

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

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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

Clearing out my flat and trying not to go out of my mind

I didn’t know it had been so long since my last post. Life is chaotic. Either I’ve been too low to write, dealing with flashbacks and triggers or scrambling madly to keep on top of more and more pressing demands.

Perhaps I’ve actually achieved quite a lot, with the unending support of my fiancé. We had to put in a “mandatory reconsideration request” with the DWP for his Personal Independence Payment (PIP), including a lot of extra information and details of everything they had got wrong in their report about him. This meant a huge amount of research and writing. In itself it was a daunting task. There were others we tackled this past fortnight too. Perhaps I should feel pleased we did it. Instead I just feel exhaustion, anxiety and upset (at the lies in the DWP’s report and the ramifications for us of his PIP being cut). If I could feel some sense of achievement I’d feel more thankful and encouraged; I’d see how God is leading us step by step. When despite hard work there is still a maze of uncertainty and upset and no conclusion to the situation – in this instance, we have to wait indefinitely to hear back from the DWP as there is no timeframe within which they have to respond – I find I can’t see what we have achieved. Even when others can and are optimistic.

This month several notably positive moments got lost in the anxiety and depression and desperate hamster-wheeling to meet deadlines. For instance I had a couple of great psychology sessions at the hospital. I need to take the time to build up from that.

Meanwhile as a way to try not to lose it completely I’ve been clearing through my flat – again – putting everything I can for sale this time. I haven’t sold as much as fast as I’d hoped but it’s better than nothing. At least it feels like I’m adding a little more to our savings for our future. Listing items for sale online takes more time than I’d expected, accounting for photographing, pricing, listing, checking postage and keeping on top of enquiries.

I signed up to eBay which I haven’t used for some years. It’s been helpful and I’ve sold a couple of things, as well as buying a couple of cheap smaller size clothes I needed as I’ve lost weight. However straight away I am faced by constant temptation to buy things I don’t need, or binge spend when I’m low. I’m worried what I might do if I shop on there when I’m “gone” (when I’m dissociating) and I spend impulsively, taking me back to the state I was in when I shopped and shopped and accumulated bags of things I didn’t recognise or recall buying. It would be worse to fall into this now when it’s not just me but my fiancé’s life that would be affected. I need to put some safety measures in place.

Ginny xxx

Sleepless at the latest precipice on our path – PIP, and hospital

I so want to be asleep right now but my brain’s awake with useless whirring energy. This week has seemed so long already. My partner was admitted into hospital on Monday night after a fall and worrying symptoms. He was “only” in til Tuesday evening and thankfully is now safe at home but more question marks are hanging over his complex health difficulties right now. We feel so lost navigating the way through to get him the treatment he needs and cope with the process.

On top of this we found out today – through a text message he received whilst he was in hospital – that a big chunk of his PIP (a Benefit paid to people with disabilities) has been taken away following a review he had a few weeks ago. No warning, just stopped; just a text message with no details and no support. We are waiting for the letter detailing the decision. It seems crazy as his condition has worsened so much since his last assessment but it was what I feared would happen, because of my own prior experiences with PIP assessments. This is what seems to happen to so many claimants. With this cut, he will lose his car, because he has it through a mobility scheme tied to the component of PIP they’ve taken away from him. We are both dependent on the car to get anywhere. I will now be housebound except for when I can afford door to door taxis as I am too physically disabled to reach the bus stop and can’t manage on and off a bus without help. He will be in a similar situation. I don’t know how we will get to his almost daily hospital appointments. £25 – £30 per day on taxis there and back is impossible on our budget. I don’t know if we will qualify for hospital transport. Thankfully there are a few weeks before the car is taken away. We can appeal the decision on his PIP but I doubt a new decision will be made before we lose the car. His other Benefits may well also be affected because the rates paid are linked to receiving a certain rate of PIP or not.

So at a time when my partner is already under utmost pressure and stress with his physical and mental health, a legal case relating to one of his injuries, anniversaries of painful bereavements and traumas, finances, and multiple problems involving lies and deceit from people we placed trust in (leading to the collapse of several projects that we so hoped would bring stability and security to us and another family member and the apparent loss to waste of hundreds of hours of work) – now this. Now that one bit of security is gone.

It is hard to know how to carry on. It is hard to know where to get the emotional and physical energy to do what we have to do. I don’t know how to act or respond seeing the person I love suffering, hurting, being treated terribly, being let down and abandoned. My brain kicks into gear with the adrenaline in some way and buzzes with lists of what we have to do now, different outcomes and scenarios. But my emotions can’t keep up. Nor does my physical body. Right when my partner most needs me and I most want to be there.

It feels as though we are trying to find our way on a path through a jungle. Each side of us is dense vegetation and tall trees we cannot see through. We work our hardest at following the path, staying on the path, walking onward. We cannot see far ahead as there are always blind bends. Beyond each blind corner we don’t know how the track may twist or split. Even trying to be prepared for each possible eventuality isn’t enough. There’s always a stone, a thick fog, a sudden precipice you couldn’t see. Worse still, sometimes there are gaps in the foliage and you see through to sunlight and in the distance, a view stretching ahead of a safe and beautiful place. You work out the route you need to take on the rocky path you’re on right now, to reach that place, and your steps are a little lighter. Then without warning, a branch bends down from the trees surrounding you, coils round your middle, it drags you high in the air, spinning, crushing you, and then flings you as hard as it can and you fall back into the jungle again. Any sign of the safe place is gone. You find yourself beside another path but you have no idea what path it is; certainly it’s no longer the one you had worked so hard to follow.

It’s hard to keep on getting back on the path and you lose hope that any of the paths really lead out of the jungle. You almost know that the moment you think of the beautiful place, a branch will grab you and fling you as far away as possible from everything that have you hope.

That’s what it feels like. It’s self indulgent to express it but that’s what it feels like. Focusing only on our pain does no good, but that’s what it feels like.

We do still have homes. We do have the chance to appeal this decision. We can choose hope. We can do all we can to save money. We have so much more than many people and our lives are so different together. I can at least be here always, for my partner. We can trust that Jesus is with us, beside us, reaching for our hands.

I just needed to get it out tonight. Thank you for listening.

Ginny xxx

Looking for an app to track mood and pain

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.

Ginny xx