Category: Physical pain and physical health

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

 

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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

 

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

 

 

How prevalent is the assumption that disabled people don’t work or don’t have responsibilities?

As a disabled person, I’m pretty used to being seen as a problem, especially in the workplace, and sometimes all the more even when “reasonable adjustments” are supposedly being implemented. For example, in my last secretarial post, discussions about supposedly agreed alterations to my working hours would begin with explicit statements about how I “had to realise how terribly difficult it is”. I was pressurised not to attend medical appointments or follow medical advice. If I was in any way assertive about my needs (not disability related ones) once “reasonable adjustments” had supposedly been put in place, I was reminded of the “great leniency” being shown towards me and how my boss was allowing things most firms never would. It got to the point that I explored this with a manager. Was there something wrong about my performance that they considered they were being lenient about – if there was I would much rather they openly told me what it was, so that I could try to correct it. Oh no, said the manager, and she went on to tell me pretty much in so many words that it was the fact that I’d been allowed to return to work after a period of sickness absence and that [what had been agreed amounted to reasonable adjustments] had been put in place! Once I dared to be assertive that whilst it was agreed that I was working reduced hours, there needed to be a plan for how urgent tasks that arose in my absence would be dealt with (it was not okay for me or for anyone else for them all to be left for my return on top of my usual full workload), I was told by my manager that everyone knew I could not cope with the job. From then on, bullying and harassment continued, along with continually calling on the fact that everyone knew I couldn’t cope with the role. This was despite the fact that, until the point that I had asserted my needs, all my reviews and appraisal had been excellent and I had taken on many responsibilities beyond my job description.

I left soon after, feeling I had no other choice as my mental health was deteriorating so rapidly. I made a formal complaint, but the lies in the company’s response and the regulatory body’s disinterest meant I gave up. 2 years since this started, the impacts on me are still considerable, especially intense self doubt about whether I can take on the responsibilities of a skilled job and the intense emotions I feel when I try to take on more responsibilities now. I’m a good way off returning to paid work but I know these memories will be something I battle with when I do.

Looking back, I feel that although the company I was working for made “reasonable adjustments”, they did so out of a sense of obligation. They made them on paper but were not really willing to discuss the practicalities. I did not hide my disabilities from my employer at any point but when I had a period of particularly bad health they became more visible. I feel that the firm continued to employ me out of obligation but from this point I was seen as a problem, an inconvenience, “terribly difficult”, someone who cannot cope. As soon as I asserted my needs (both relating to my disability and not), this was unacceptable to them. I was no longer wanted. Looking back I feel as though I was acceptable so long as I never spoke out, so long as I never dared assert myself because I was so grateful for everyone allowing me to stay despite all the problems I caused. Whatever happened they needed me to fit their impression of me as someone who can’t cope. If I didn’t assert my needs, eventually the ever mounting pressure would have got too much and I would not have been able to cope. When I did assert my needs, they took this as grounds to announce that everyone knew I couldn’t cope. Whatever I did, it came back to this. If I stuck to my contracted hours and a task went undone, I would be told off for not completing it. If I worked late to complete a task (sometimes specifically with a manager’s agreement or even at their request) I was told this showed I couldn’t cope with my job because no other secretaries worked late (untrue incidentally).

So, I wonder, how much of this was done malevolently and how much came from my employers’ assumption that disabled people can’t cope with responsibility or can’t do the job? Yes, in the later stages I believe their lies were malicious or at least covering their own backs so that should I take my complaint further I would have no case. However I am coming to think that their underlying beliefs about me as a disabled person played a large part. (It could have been that I was actually rubbish at my job from the outset but then why was this never reflected in my performance reviews?)

It seems a very backward assumption that disabled people can’t work. Then, the other day I encountered the assumptions of a total stranger who had met me for a few seconds at most, that I’m irresponsible and don’t work.

I was about to get off the bus when the driver sailed on past the stop despite 3 of us ringing the bell in plenty of time. By the time we got to the next stop this had trebled the length of my walk home and this over-exertion has now worsened my symptoms such that for the next 3 or 4 of days I’d be almost unable to walk at all and wouldn’t be able to leave the house even to get to my medical appointments. Someone who has no way to appreciate what life with a disability entails might not realise the extent of impact of having to walk a bit further. The driver was very rude and dismissive when I asked why he didn’t stop and so I thought it worth pointing out the impact it had on me. He would not apologise and lied saying that the bell hadn’t been rung and what was it to do with him. This being the last in a considerable number of recent bad experiences with the bus company that have left me dreading bus travel (recently I was shouted at and ordered off the bus because I asked the driver where the bus was stopping during a temporary diversion and wasn’t willing to accept his answer of “I don’t know I’m not a taxi driver”!), I decided to complain and asked for the company’s telephone number. The driver flatly refused to give any details. At this point another passenger came up, pushing into me, telling me “Just get off the bus, you [expletives deleted] idiot! It’s alright for you, all the rest of us have responsibilities and work to get to! Take the bus number you idiot, he’s told you [more expletives deleted].” On top of which the bus driver nodded and smiled, said she was absolutely right, actually thanking her. Pretty much encouraging her.

I was furious with the passenger as well as the driver and it took me some time to work out why I felt so strongly. Part of it was the driver’s refusal to apologise, refusal to admit he’d missed the stop and pretending the fault was mine and generally very poor customer service, which really gets to me as I’ve worked in customer service for years and feel strongly about how I’d treat other people. I also ascertained he missed the stop deliberately to save time, though that is something of an assumption. But I figured out that what really upset me was the implication in the passenger’s tirade and the driver’s support of her.

“It’s alright for you” whilst the “rest of” the passengers have “responsibilities and work to get to.” She made the assumption that I did not have work or responsibilities, that I was different from everyone else on the bus – why, because she could see I’m disabled? “Take the bus number you idiot, he’s told you”. She assumed the bus driver had given me the information I needed and I was too stupid to understand (he hadn’t). Again because I’m disabled? And I should “just get off the bus” – why did she find that it was wrong for me to stand up for myself? Are disabled people too much of an inconvenience to the “rest of us” when we do? Should I keep quiet because everyone else has responsibilities and jobs that count more than mine? The driver supported her being verbally abusive. Perhaps he was just hoping she’d intimidate me into giving up so there would be no possible repercussions for him if I made a complaint, but in the context it felt like him agreeing I was stupid, an inconvenience and so unworthy I don’t even merit decent customer service.

Am I being paranoid? Was it not actually to do with my disability? Was the other passenger setting me apart from her and the rest of the passengers for another reason? I don’t know. Instinctively I feel it was very much to do with my disability and perhaps the fact I wasn’t behaving in the typically meek, apologetic, unobtrusive way it seems acceptable for disabled people to behave.

Hmmmm. To be continued at some point, I think….

Ginny xxx

 

What is it okay to protect for ourselves?

I still can’t figure out why I’m crumbling so much trying to support my friend. Partly it’s because the trauma he’s suffered and needs to talk about is so close to my own experiences and I don’t know how to cope with my own emotions about my trauma, and bad as I feel about this, I can’t always cope with someone else’s experiences, the even stronger emotions this gives rise to in me and the overwhelming emotions they are also feeling. It’s as if I absorb the pain and feel it 3 times over – my own pain and distress, my pain for them, and their pain and distress.

But this isn’t the only reason. When there’s no link whatsoever to my experiences I’m still feeling panic, dread, boiling frustration (inappropriately), unease, fear… and terrifyingly, too many emotions that are too close to those I felt when I was caring for my mother (who was also my main abuser). My conscious feelings towards my friend are nothing like what my feelings towards my mother were so why are these experiences occuring? Very raw feelings, as well as flashbacks, hallucinations and panic attacks are increasing. For some reason the situations with his health deteriorating out of control, hopes for things being understood resolved and treated then being delayed time after time, his near desperation, his rapidly overtaking weakness and physical degeneration, even his need for me, is triggering the feelings I had when I was with her. This scares me. It’s nonsensical. He’s nothing like her. The situation is not the same. Yet I can suddenly feel just as desperate to escape. I don’t know why because he is generous, good, caring, honest, he wants to help me, he does not judge me, he worries for my wellbeing and he supports me greatly in the faith we share.

Why does his need for me scare me so much too? He tells me I’m the only person he trusts to tell certain things or to give comfort. I am thankful and sort of honoured that he trusts me but I don’t want to be the only person. That isn’t safe for him. I am only one person. Yes, I care, I pray, I do not judge (well, wish not to, with God’s help), I can empathise deeply; but I’m only a normal person. I can’t keep him safe, heal him, I am not the total good he thinks I am. God gives hope. God gives safety under His care. I am only one person. I am thankful he trusts me but I don’t want him to trust and confide in me and not the doctors or other professionals who can help. If I’m honest, I cannot be the only person because it isn’t safe for me either, as well as for him. I cannot be the only person who knows when he is in danger. I cannot carry that or keep him safe. I cannot be the only person he can turn to because despite my best desires I cannot infallibly be there and there will come a time I don’t do the right thing or the thing he most needs or that I hurt him unintentionally and I don’t want him to be in danger then.

Which brings me to: what time or mental or emotional resources can we protect for ourselves? He needs me desperately and constantly. As well as practical help, there is rarely more than a couple of hours that I’m not listening, emotionally supporting or encouraging him or at least trying to. I might be coping more stably, or having lower levels of the currently overwhelming emotions, if I had more breaks, time separate from him, time to meet my own daily tasks and duties, time to keep my commitments to others, time to pray, time just to rest. But what would he do then?

When is it okay to protect time and mental resources for myself? The Lord is with us always. He always listens, always answers and always holds us in His Heart. Jesus gives His life for us. We are called to emulate this, to join in the sacrifice He made and pour ourselves out in love. If I’m to follow Him, to offer my life too, then I need to be there for people in need, always not only when it’s easy or convenient. I have felt the hurt myself of people I’d counted good friends cutting off or cutting back contact when I got more ill and being alone when I most needed contact with friends and to know I wasn’t going to be left for my weakness.

So I just cannot limit my availability to someone in desperate need. But I’m crashing up against my own physical and emotional limitations. What is the loving response? Admittedly my friend is not my only calling and responsibility. I have a calling to my family, my volunteer work, to run my home responsibly, to manage bills and finances and so on. In a way I have a responsibility to my own health and wellbeing too, though that’s hard to admit. Though that’s a fight in my head to. I should deny myself to reach out to bring God’s love to others. Then again the Lord created me, wants me, loves me – perhaps not only so that I can be denied and weakened? At the moment every responsibility except to my friend is falling to the side. I have no reserves left for anything else. That really does not feel right. I feel more guilt for it, especially not having the energy for family, for contemplative prayer or for treating my home that I’m blessed to have with due care so everything is in disorder.

This is all very uncomfortable and I’m so tired. I need to seek guidance.

Ginny xxx

Ten dishes challenge #6: chicken stew and exploring wheat-free

Since the new year, actually I’ve been much better than usual at cooking meals, though usually I haven’t managed to remember to take a picture to add to this series, hence the lack of updates. A significant reason I’ve done better at cooking is that I was preparing food to share with a couple in my block who were in serious financial difficulty, and also cooking for another friend who is very unwell and struggles to eat at all let alone cook.

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I’m motivated to cook when I feel it’s to help or care for or simply for the enjoyment of someone else. This can help me overcome feeling too exhausted to do it. When I’m cooking for others, there is actually some joy in it even if I’m battling the chronic physical pain. The thoughts and voices that taunt me that I don’t deserve good food, must not eat, fill my head with repulsion at myself and greed and failure, do not come so loud when I’m cooking for others and sharing the meal. When I’m with others, I don’t binge eat and I cannot purge food. Perhaps it isn’t the ideal way out of these eating disorder symptoms – I have to be able to feed myself for myself in the end – but the more times I do cook, do share food, do manage not to binge eat and purge or restrict for long periods, the quieter the voices become even when I’m alone. It’s a very slow process and can still be awful but I think it’s a strength that will slowly grow.

The other major change in the last month is that since I was in hospital with stomach problems, I’m on a wheat-free diet because I was advised to try this. So I’m finding out new recipes or adaptations to recipes. As much as possible, I’m finding foods and ingredients that are naturally wheat free, because a lot of replacement products are very expensive, especially the processed ones. A very small loaf of gluten free bread will be £2.50 rather than 80p for a similar sized normal loaf; a packet of wheat free biscuits may be up to £3.00 rather than 75p or less for regular supermarket biscuits. I can’t have these things regularly on wheat free, at least not when I’m relying on Benefits whilst I’m signed off work. The plus side of this is that it leads me to cook more and eat more fruit, veg, beans, meat and dairy. My food bill will increase a bit nevertheless but I don’t think it will be unmanageable if I’m very careful to go for cost effective recipes. In fact, I’m often enjoying finding a new variety of foods and the altered diet. For example, I’m going to try making my own bread using wheat free flour. I discovered these funky coloured carrots that were tasty roasted:

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It’s not all saintly. Chocolate definitely still features in my diet! 🙂

For the first couple of weeks I was out of hospital, my stomach was very unsettled and I was mainly eating rice, rice crackers, cooked vegetables and fruit, peanut butter then gradually some egg and cheese as well. Most meals were looking something like this:

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Slowly, as my stomach is a bit better, I’ve wided my diet again with meats, yoghurt, various treats or desserts like chocolate, or fruit bars, and I’ve tried some wheat free cereal a couple of times. It’s a gradual process and I’m still feeling unsettling effects from the stomach problems I had.

I’ve also returned to using my Nutribullet, which I find most helpful for upping my vegetable and fruit intake with juices, ensuring I have high fibre intake and consuming things that can be harder to get into my diet. In the winter, I don’t enjoy eating a salad as I might in the summer, but I can make a yummy smoothie with some raw spinach and mixed leaves, avocado, banana, apple and a little lemon juice.

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The result does slightly resemble the bathroom suite my parents had in the 1990s, but I promise it tastes good. (Warning – in my experience, home made juices, whatever the ingredients even if you use brightly coloured fruits, tend to turn out green or brown. This may not look appetising however if you can overcome the colour they usually taste good.)

Yesterday I made a chicken stew with lots of veg and mashed potato, which I was very pleased with as I used not to be so confident cooking meat. I had the day at home so was able to pace the preparation better than usual. There was plenty left over that went in my freezer.

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Thanks be to God for helping me to rediscover some joy in food, some opportunities to share and eat with others and enjoy it, and gradually continue on the path to a more healthful diet and feelings around food and my body.

Ginny xxx

How long their words stay with us

I’m trying to persuade a friend who is very ill to go to A&E tonight, or at least call 111. I wish I was where he is and could take him.

He is not at all well in so many ways. He’s waiting for several operations.  The worst danger tonight is that he has unbearable pain and symptoms to do with blood clots he has; we know with these symptoms that there is a danger of a blood clot in his stomach. We know he should seek help urgently in these circumstances with these symptoms; medics have told him this.

The main reason he is very reluctant to get help is what was said to him by a doctor the last time he was admitted, a few days ago. The doctor made a range of sarcastic comments about him to nurses and another doctor and said outrageous things to him including that hospitals are for people who are really ill not timewasters like him! This was when he’d been admitted when he’d attended as he was instructed to for an ECG and scans. He was found to have three bloodclots in his leg, as well as the numerous other serious problems for which he is due to have operations.

I cannot conceive what would lead a doctor to say what this person did. I know anyone can have a bad day. Anyone can dislike someone. Doctors, nurses, HCAs and other staff in hospitals are under a critical amount of pressure, now more than ever. But what would lead someone to say such bitter, accusing, unsubstantiated, false things to a person they are specifically there to care for? Did the doctor actually believe it? Or was he somehow venting anger, hate, judgement, for some reason onto my friend?

Not only this but without asking any questions to determine his mental state and without advice from the psychiatry team at the hospital or the community mental health service my friend is seen in, the doctor said to my friend that he should be Sectioned, and started trying to arrange this. Was he assuming or insinuating that my friend’s physical health conditions didn’t exist and were delusions? In spite of countless scans and test results and reports? Had he branded my friend as attention seeking because that’s the stereotype he holds of people with the mental health problems my friend has? Did that stereotype have such a hold it negated the physical evidence in front of him? Or does he regard people with mental health problems as unworthy of help or care however much they need it and think instead we should be shut up in institutions out of the way of those who he thinks do deserve help?

I’ve been on the receiving end of this numerous times. I’m really hurting for my friend and knowing he’s been left in so much danger now. Whatever the reasons behind what that doctor said, his words have told my friend he’s unworthy of help and must not ask when he needs it. My friend struggled enough with that already. He has had enough abusive people telling him he deserves pain, deserves bad, is asking for it. I don’t know exactly how it is in my friend’s head of course, but I know from my own experience how much louder memories that tell us we are unworthy, that confirm what our abusers told us, scream at us than any fledgling sense of ourselves and our value can. Words like this doctor’s join with the voices accusing and taunting us and they do not fade; they take a grip of us and punish us if we do not obey them.

My friend is in unbearable pain now and potentially great danger, and I’m trying to persuade him to go to A&E or if he cannot bring himself to do that, to call 111 for advice. I’m praying that if he does speak to 111 – when he does, please God – the advisers that speak to him are compassionate and show him there are people that do want to help and do have compassion and will help and believe him.

What this doctor said to my friend was awful by any standard, I think. Still, I wonder do people, especially people in authority roles (such as those who determine the medical care we get), know how much difference their words make, for good and for bad? I think words do have greater power for those of us with BPD, with histories of trauma and abuse and rejection, and no doubt with many other health conditions too. This is our responsibility to be aware of and to try to learn ways to cope with and I’m starting to see that very gradually,  with a lot of time, we can. It would not be at all fair to demand that other people treat us more carefully than they treat others. Actually, this is one of the things I fear demanding of others. But when we are already in crisis, desperately needing help, it would help so much if those caring for us knew the lasting difference their words and actions can make.

Ginny xxx

 

 

Two hospital visits and “The Gas Man Cometh”!

The past week has been a mix of unexpected, scary, painful, exciting, relief and changes.

I had been feeling worse than usual physically but had put it down to all the flu bugs around, cold weather and the fact I had been very stressed in the preceding month. However, it wasn’t flu. Just over a week ago I had some horrible symptoms I won’t detail here. On calling 111 for advice they sent an ambulance straight away. At the hospital I was found to have [ahem alert don’t read whilst eating your dinner!] bowel obstruction. Thankfully they had caught it in time before things became more serious (if left, it can cause a rupture in the intestines). I had IVs and they erm, did what they had to to clear it, X-rays, then I had to have more IVs for fluids. I ended up being readmitted the next day because I was having symptoms again so it was a scary couple of days. They would have kept me in but there was a bed shortage. I’m home now with several medications and guidelines to follow about diet and drinking enough.

I am so thankful this was spotted in time and treated. The doctors, nurses and HCAs were all kind and caring and made some scary, nasty things as okay as possible, and reassured me. They were busy but still took time.

I have some changes to make now. I have had to stop several of my medications because their side effects could now cause problems with my bowels. I need to discuss this with the GP to find alternative medicines and ways to manage because I needed their beneficial effects (eg for pain relief). Fortunately I’m due to see a specialist pain clinic in a month’s time. Also, I’ve been told to cut out wheat from my diet to see if this makes a difference. Even though I don’t have celiacs, some people can have other problems with wheat. Bowel problems do occur as a complication in other conditions I have (fibromyalgia, POTS and hypermobility syndrome) and people can find going wheat free to be helpful. I’ve started this and so far thankfully I am not missing wheat too much at all, though I’m still only able to eat a little so that may be why.

I’m hopeful that with these changes I can keep things better, though we don’t really know exactly why the obstruction happened. In the meantime I’m fighting not to get too down through some of the difficult effects I’m still going through. I am very achy, pain is worse as I’ve had to stop some of the medications, and I’m still stupidly weak physically (the fibromyalgia is badly exacerbated which again is to be expected as after any illness). I have had bladder incontinence for years because of the fibromyalgia and nervous system problems; since the bowel obstruction this is much worse and now distressing bowel urgency and leaking if I can’t go right away, are added to that. I’m praying this is temporary or at least that the GP can refer me back for some help when I see her next wek. I used to be too disgusted and ashamed to admit to that side of things but now after everything that’s happened in the last few years it doesn’t seem such a horrendous thing to admit it, though I still get upset and feel horrible when I have worse incidents.

The other problem that has loomed large is I had no heating or hot water for 23 days! The most incredible saga unfolded between my landlord, the boiler maintenance people and the boiler manufacturer and fault after fault was found with my boiler and the flue.

This song seemed apt!*

Thanks be to God, as of this evening everything is fixed! I had a most enjoyable and appreciated shower. Boiling kettles to wash up, clean and have a wash was not the most fun, though it’s what my grandparents did daily as a matter of course. It has been very cold some of the days I was without heating and a friend very kindly lent me a portable electric radiator. On the plus side, I’m likely to be entitled to compensation for the multiple mistakes made and inconvenience caused. I have to apply for that from my housing association.

In more exciting news, today I attended the first session at the Recovery College, which I’ll post more on shortly. It was an introduction to how one can become involved in mental health research, bringing a service user or “lived experience” perspective. It was more inspiring than I’d expected and left me feeling I have something of value I could bring to shape research materials, methods and how research findings are communicated.

Another brilliant event this week is that my friend who has been homeless for a long time, has at long last got a place in a hostel. It’s a good hostel in a safe area. By no means is this an end to his difficulties but it is a blessed answer to prayers and struggles to navigate the way through the council, the housing list, support agencies, forms, waiting lists, assessments, phonecalls….it goes on. What he’s going through is terrible and scary however I pray this is the beginning of safety and a little stability. Thanks be to God, from the depths of my heart, thanks be to God.

Ginny xxx

*”The Gas Man Cometh” by Flanders & Swann. Thanks to Hawkmoon for the video.