Tag: pain

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

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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

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

Panic about planning

My partner and I had to go into town today to buy some items for Easter and for volunteer work next week; also to meet a friend for coffee. There were 5 items on the list, to be bought in a couple of different shops.

Why did I go into a full panic attack?!

The task seemed completely insurmountable, more and more insurmountable as the minutes passed; and the more insurmountable it seemed, the angrier I got with myself. If it hadn’t been for my partner I would not have left the house. I’d have hidden away under my blanket at home. Yes, like a three year old.

I could not make any decision on where to go. Nowhere would have everything. There was a potential problem with every potential store we could go to. There was a reason not to go to this or that place, but also to go to this or that same place. I was exhausted. I wanted sleep. But I had to get everything on the list or I’d let people down at work. If I did go, what order should I go to different shops? All the possibilities made a desperate screaming noise in my head and it was impossible to choose and any choice felt disastrous.

Why? Why am I so unable to cope with the simplest choice and task? Decisions are always harder than I think they should be but not usually this bad.

There seemed to be too many combinations of possible outcomes to make a choice but I don’t know why this was so paralysing. Why there was so much noise and crushing pressure in my head. My reaction to not being able to choose was very much a child’s – want to stop, want to hide and so on. Had I dissociated and my little-child-self was in the fore and unable to cope with the decision-making? Or is my adult self so overwhelmed I can’t go through a normal choice process? Or both….

My partner made the choice in the end. We made it out. I had two other near panic attacks when things went wrong while we were out. We were glad to see our friend. I’m home now, utterly wiped out, pain off the scale. On days like this I’m astounded my partner wants to be with me.

Ginny xxx

Trying not to choose destructive “safety”

I’m buzzing with anxiety and I don’t know what about. There are loads of things I have been really worried and upset about. But I can’t work out what’s bothering me right now. My stomach is knotted around a cold ache. An actual physical pain. My head feels the same as when my thoughts spiral but there aren’t any thoughts I can catch, just dizzy blankness. My legs are shaky and I’ve lost balance several times. It’s different from the dizziness and fainting that comes with the POTS. I wish I could make it stop. My tablets I regularly take in the evening usually sedate me a bit but it isn’t working. If I could walk for ages, or go running, maybe it would channel the feeling out of me (but I can’t since I can only walk a few yards with crutches).

If I knew why it would help. It’s scarier when the feeling is separated from thoughts. The emotional state seems to have a tighter and limitless hold on me even if rationally I ought to know it will pass. An emotion that shouldn’t be unbearable becomes so because of confusion, fear, and I realise now, the dread that is wrapped up in the associations of previous experiences of this emotion (abuse, being trapped, feeling guilty, feeling unable to stop terrible things happening because of me).

I desperately want to numb it and stop it. Drink, or cut, or binge, or take enough tablets to knock me into sleep. That seems to be the default response my mind and body make. I’m asking God to help me stay right here and feel and know I am with Jesus. This week leading up to Easter we are particularly close to Him in the suffering He went through so we could be with Him. In this small struggle that feels big right now, He hasn’t left me. I will keep on reaching out for His hand, praying and reminding myself of His goodness. Every moment is His way of coming to us now and sometimes we are with Him on a steep path, a storm or a lonely place. What matters is we are with Him.

It seems I’m saying what I really want to believe, rather than give in to the false security of numbness through destructive actions.

Jesus, please hold me, Mother Mary, please help me.

To be continued…

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

Absence

So many times I have tried to start posting again and been unable to write. Tonight at least I’m going to write something even if it’s rubbish.

I stopped because I felt I was constantly moaning, constantly apologising for the same failings then failing again, constantly sad, ill, unthankful, dissociated… and I’m in about the same place now. Shakier actually. When I started this blog I really didn’t want it to be like that.

Tonight I’m days into yet another period of being half gone, needing to be out of it, but knowing I can’t be too. And it’s twisting inside my chest, pulling me, dragging me, itching, hurting, voices getting louder, so desperately needing to do anything to turn it all off, but I mustn’t and I can’t. And this is rubbish. I can’t even get a tiny part of what’s going on inside, out. I used to cope in bad ways but I can’t even go to those ways now …. and everyone says oh it’s really good, you’re doing really well, but I’m losing my grip and imploding. Despite so so many things that are good or should be good and that makes it even worse.

Going away for a break

Going away for a break

Wow. This week has been really emotional, with so many really sad tragic things happening – the Grenfell Tower disaster, two terrorist attacks in London, another attempt in Paris, another major attack in Mosul – so much pain. I desperately want to be able to “do something”. Help. Bring some hope. Bring the merciful love of our Heavenly Father into this pain.

My partner and I have taken some action to do this and I’ll post more on that separately.

Meanwhile I’ve been feeling overwhelmed. I’ve had a couple of appointments with the pain clinic which have been very draining and in some ways upsetting. I’m sure I’m going to learn things that really help there and I have to try to keep going, keep trying, keep open to what they’re saying and offering even through the parts of it that hurt.

Today my partner and I are going away for a few days. We are staying in a besutiful hotel. We’re going to meet up with some of his family and my goddaughters’ family too. This is the first time in I don’t know how many years that I’ve been away on holiday. It’s not to a totally unknown area but I’m anxious. It’s a huge thing for me to go away and stay somewhere I don’t know and to stay a few days. I am excited too and know I really need a break. Most importantly I’m looking forward to some time to spend with my partner, talk and pray together, and share home calmly rather than constantly running around at the point of exhaustion and it seeming that time in which we can be there for each other and be thankful for each other sometimes comes last. I’m thankful for these coming days and pray for God’s blessing on our time together.

There’s a pool at the hotel and I have made up my mind that for the first time in about 7 years I’m going to get in the pool. I’m going to try to do some of the exercises my pain physiotherapist gave me and try to swim a little. It should be fun but also a great challenge to overcome as I haven’t been in a pool since I used to swim obsessively to try to lose weight when I was in the grip of bulimia.

So it will be a weekend of firsts and implementing some beautiful changes, please God.

Wishing you all good things this weekend.

Ginny xxx

 

Exhausted unrest

I am very frustrated that basic activities are taking so much of my strength and taking a massive amount of planning.

Just going out is exhausting. I’m desperately needing more time to rest physically. Also, desperately wanting more time to properly order my home and take care of it. I have had a constant stream of appointments and commitments that I’m struggling through, feeling more and more frustrated by exhaustion, mobility problems, pain I can’t cope with, and anger with myself and unrest about my home being disordered and messy.

There are a couple of friends I really want to spend time with or do things for. I’m scared of taking from others and not giving back. Yet meeting someone, or going to their house, or cooking a meal for them, totally wipe me put afterwards for days after. I think that’s through a mixture of my pain and pushing myself too far physically, and my anxiety and the voices and feeling overwhelmed in a sensory way. Talking, others’ emotions, noise, new places, everything happening around me, can be just too much coming in to cope. Sometimes I think I have sensory processing disorder or at least sensory processing difficulties!

All this leads to despair, being cut off, and being unable to give thanks or try to open my heart to learn gratitude. I need to make a change. I don’t know what.

Ginny xxx

Unenchanted April

I have wanted to post but not been able to find what to write. I’m sorry it has been nearly a month. Even this post I started nearly a week ago. I don’t know quite what’s making it so hard to express how I really am.

My friend’s health continued to deteriorate. I was fighting desperately to get him help as the danger he was in increased. Everyone in a position to keep him safe seemed oblivious to tune dangers and I could see how close he was to the edge but with no professional’s help I could not do anything more than what I can as a friend and that is not enough. It’s terrifying to be the only one knowing and believing the risk and I know that sounds like I am very arrogant thinking I know better than the doctors, but time and time again now I’ve known what’s happening or going to happen, the doctors have done nothing, refused even to listen to my concerns, and the thing I’ve known will happen, happens. The toll is greater each time. He has liver damage, blood clots, he’s starving himself, he is barely even drinking anything, there’s much more I wish I could write but it’s too personal to him for me to feel I can share here.

I don’t know how to carry this knowing.

I cannot save him alone. What someone else can give you, or trying to carry on for someone else, will not ultimately be enough to keep you safe or even alive. (I know this from my own darkest times, when I’ve been irretrievably low, hurting myself and planning to end my life, and someone close to me – who didn’t know the half of it – screamed at me, look what everyone is doing for you – why isn’t this enough for you? The answer is a post for another time but I know if he continues it must not be for me, not just for me in any case, so I alone cannot save him.

I can pray. I can try to give comfort. I can try to give compassion. I can try to show I love him and that he’s a good person not as he sees a problem, a burden, someone who frightens people, is bad, is not wanted, is no good. I can try to help him find some ways to build a safe, stable home and life. We can find short times of hope, happiness and laughter together. He has an immense capacity to love others, care for them and about them, to rejoice when they are happy, to fight to help them when they are hurting and share their pain. But none of that can he do towards himself.

He may die. He may end his life. I don’t know how to hold this knowledge and all the feelings that come with it.

****

I have been in crisis myself in the last few weeks and was in hospital for a couple of days. Then I had help from the crisis team at home for a week. When crises come I still flip out and instinctive reactions and thoughts take over along with the hallucinations just as much as they ever did before I had therapy. My “little child” gets out and she really isn’t very nice sometimes. It’s scary. I feel like a failure.

***

I’m realising that my mobility has got a lot worse in the last year. I’m particularly weak physically at the moment. I was diagnosed with POTS a little while ago (a heart, blood pressure and autonomic nervous system disorder). I’ve a lot to learn on how to manage the symptoms. Being very faint, muscle spasms, digestive problems and poor circulation have been hard to deal with this month. I’m now very fortunate to be in touch with a pain clinic at the hospital and there are some good possibilities from what they can offer, so I must be hopeful.

I really will try to post more regularly again and share happier news next time.

God bless you.

Ginny xxx