Tag: hospital

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

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

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

Reforming my food intake – eating disorders v changes for healing

TRIGGER WARNING: this post discusses diet, eating disorders and food restrictions.

I was back at hospital a couple of weeks ago with another bowel pseudo obstruction, with a lot of pain and bleeding. Scary. Thanks be to God this was not as serious as the obstruction I had last year. However over the past year on the whole I have had a marked increase in gastric symptoms which are part of my POTS and Ehlers Danlos Syndrome. It’s painful and disruptive. Possibly it’s also doing the rest of my body no good if I’m having inflammation or not absorbing nutrients properly.

I’ve decided to change how I eat along the lines of what I’ve read can help people with my conditions. It will involve a lot of protein, cutting right back on wheat and sugars (this will be hard for me!) and eliminating junk food. It will be quite bland at first whilst I find out what foods work for me or not. I don’t have celiacs but people with POTS and EDS can have problems with wheat that aren’t celiacs.

I’m conflicted because any strict diet, food restriction or elimination is triggering to my eating disordered thoughts and voices. Moreover I can’t deny that I’m hoping that my change in diet will lead me to get back control of my hunger, cravings and bingeing and that I’ll lose weight. I really want to sort my stomach problems but control and losing weight are hugely strong desires too. I’m overweight and repulsed at myself.

Possibly what I’m doing isn’t what professionals would think is a good idea if you have bulimia, binge eating disorder or a history of anorexia. Usually elimination of foods isn’t advised and you are supposed to listen to your body’s cues. I have no idea how to safely listen to my body’s cues. It seems to constantly scream “hungry!” In a way, am I listening to my body by recognising my gastric issues and the fact that my current eating is doing me no good? But I’m furious with myself for the binges and constantly want to punish myself. The diet that I’m going to be following will cut out a lot of foods I binge on. Will that stop my binges being triggered? I’m hoping so but I just feel I know I’ll lose control.

I’m trying to think of the changes as a long term way of eating, making it work for me throughout my lifetime, not a fad diet; also I’m trying to remember the fact my body needs this to get better.

Ginny xxx

So far beyond the limit

I am so stressed and strained beyond the limit. I’m trying to care for my fiancé. I can’t. He’s yet again been discharged from A&E, this time with DVT having been told he could have a pulmonary embolism at any time. No plan in place. Vascular problems, tumour, hernia, unidentified lump in his stomach, knee operations, diabetes, hips going to need replacing… how much more, how much longer Lord? Why? I’m screaming and crying inside. How much worse he must be feeling. Again and again after every emergency and discharge we are no further forward. All the risk and pressure falls right back on us. I can’t do it. I’ve been overloaded for weeks or months. Way beyond the breaking point. I need it to stop. Already I’m drinking with my medication to try to get knocked out. I cannot cope with yet more emotion and pressure. Cutting, bingeing, purging, everything is worse. I have no mental health support now, nor does he, so what can I do? Time has slowed down. I’m hearing things. I need it to stop. Please God, I want to say I know you will answer and not turn away from us forever. But I can’t see You or hear You or feel You. It’s been a long time that way. Xx

Hospital

My friend has been admitted now (see my last post).

He was in much more danger than I realised. I’m not putting specifics to keep confidentiality and to avoid any unhelpful triggers for readers.  He only told me after we had parted earlier. He didn’t want me to know and be scared. Then he went to A&E but didn’t go in. He was scared. He felt huge guilt too I think. He was confused and distressed and we lost contact and he was walking or lost in the hospital grounds I think. I got there as quickly as I could in a taxi phoning security to search for him. Thanks be to God for Security whose officers tracked his car. Thanks be to God that he did make it into A&E. I still don’t know exactly how.

Again I didn’t want to leave but he really preferred I did as his anxiety about hurting me (which he has never done) was so high. I spoke with the nurses and we all agreed is best for me to come back in the morning. He’s being cared for…he’ll be on a drip…he’s not alone…

I’m scared. He was so weak and drowsy and in and out of consciousness / awareness.

I’m hurting. Shaky. Scared. Exhausted. I don’t know what to do with all I’m feeling for him and the overload in my mind and chest. Hurts to breathe.

I know I have to accept right now I can’t do anything. The doctors caring for him can do something. God can do… more than something. Still I feel so horrible for everything I can’t do and all the good I see in him where he only sees what he calls poison.

I place him in your hands dear Lord Jesus. Hold him please tonight. Whatever happens now.

Ginny xxx

Descent into emergency

Kyrie eleison. Lord have mercy. Christ have mercy. Help us in our need dear Jesus, please, Lord hear our prayer.

6.45pm

I feel so scared and powerless right now.

My dear friend is in complete crisis. I’m so scared he isn’t going to make it. I don’t want to tell all his business here. That wouldn’t be right. But he’s been through some horrific things and his mind and body is in utter pain. He could die, through what’s happening to him physically and the risk he’s at mentally.

I won’t leave him on his own right now. He’s massively distressed. He’s too scared to go to A&E tonight. I’m trying to insistently but lovingly persuade him to speak to the out of hours services to see if he can get to another place of safety, or to speak with his GP. Please God he is going to see the GP in a short while in an evening clinic they have. Please God we get there. He is letting me stay with him now. He so did not want me to at first but I could see the danger. Please God, please may he still accept my company and please may he get somewhere safe tonight. (There are very concrete reasons I can see he’s at risk but they are not my business to write here.) I’m in his car waiting for him whilst he’s speaking to someone who he felt he had to go see about an issue that came up earlier; I don’t think this is going to help any right now for him but he really felt the need to do it and I didn’t want to force him not to. Please God please may he come back soon.

I’m barely hanging on myself. I’ve been losing the grip the past week especially. Dissociating, losing time, self harming, huge panic attacks and flashbacks including physical sensations.

A neighbour has started being aggressive and verbally abusive. He’s been pressing me for money for months. He’s been doing the same to other vulnerable people on the estate. He’s been citing endless disastrous circumstances but it’s now coming to light that something else is going on. I’ve sensed things wrong for a while but now it’s becoming clear what he’s telling me does not add up and isn’t the whole story to say the least. It’s getting out of control. I believed and wanted to help him to get help, supported him with getting referred for a support worker and foodbanks. Now it seems nothing is true. I’m afraid for a vulnerable person he lives with. I’m going to have to contact the police I think.

8.40pm

We have spoken to the doctor and are waiting to hear if my friend can get into a safe place with support. There is no space at the moment. Even if he does it is only open til 1am. We’ve gone back and forth with the doctor and out of hours services. All doing all they can but of course there are these limits… and in the end I don’t know who can keep him safe when he’s as far down as he is now, hating himself and hurting himself so much and so afraid of everyone. I’m ripping apart inside. I’ve been where he is, or similar. I know perhaps I cannot do enough. I care for him deeply as a friend. I wish I could rescue him but know despite all the love I can give perhaps I cannot.

9.15pm

I didn’t want to leave him. He has gone to the hospital. The doctor was worried for me and said I should not go with him. He insisted I not go with him. He promised not to hurt himself and that he’s going there. I couldn’t do anything else especially since it’s his car and I can’t drive. We are keeping in touch by text. I believe his promise but I know from being there myself that when you are going to end it, that blackness and blank terror and loss and self revulsion and pain overrides everything, no matter how firm and true and faithful your promises. The doctor told me to go home because she was worried for me but I so did not want to leave him. I cannot save him in the end but I can be there.

9.25pm

He is at A&E now. The situation is far worse even than I knew but thanks be to God he is there. Thanks be to God he’s going to be taken care of…dear Lord I pray he’s met with compassion there as well as getting the physical medical treatment he needs. Please Lord, please can they still help him. Please enfold Him in your love, whatever comes now, if it’s the end or not, please show us Your saving help. In the darkness of pain and not knowing, danger, even death, You are our certain hope and Saviour.

Mother Mary, St Joseph, please offer to your Son in the way most pleasing to Him, everything I offer, everything I do, everything I pray….

Ginny xxx