Tag: hospital

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

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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

 

 

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.