Tag: medication

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.

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Ten Dishes #3 – full of beans

This month has been even tighter than usual financially. Someone extremely kindly gave me some groceries to help. I received a few items I wouldn’t usually cook with. Two of these were a tin of ‘tender broad beans’ and timed cannelini beans. I decided to see what I could make with those using just the ingredients I had already in the cupboard.

This was the result:

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It is hard to make it look appetising in the photo however it was actually really nice (though I slightly over cooked the rice)! I used onion, tinned chopped tomatoes, salt and pepper, mixed herbs and some stock. Using half the beans made plenty for my dinner plus another generous portion I put in the freezer. I still have the other half of the beans left over in the fridge to make something tonight. So all in all it has been extremely economical.

I think it was also nourishing and healthy. I’m really trying to take steps to improve my diet at present because it had become so poor due to trying to keep costs down. I am very unhappy with how my weight has been increasing with my medication and I really want to try to take control back in a healthy way that looks after my body.

Ginny xxx

One of the most dangerous ways to react to someone with BPD who is asking for help when they are suicidal or self-harming

 

 

TRIGGER WARNING: fairly massive warning on this one that this post discusses suicide and self harm and issues around getting care in crisis…

Yesterday I was met with one of the most punitive, ignorant and dangerous reactions I have had from a medical professional. I wonder if people who react like this actually do not realise the genuine danger patients are in and how much further into danger this kind of reaction pushes us.

As I write this post I want to be clear that I am now safe and have received help and I am not posting this to alarm or worry readers about me. I’ve been seen in emergency services and eventually had very supportive care, which I will post about in due course. Please don’t panic about me. I am now safe and have had help. I just think what I experienced earlier is a massively dangerous issue that needs to be highlighted.

Yesterday I was absolutely unable to cope. The pressure of my housing situation, financial problems, threat of losing my flat, trying to discuss things with my landlord, my physical help, repeated errors from benefits services and other supposed sources of support, the lack of help over the past 5 months or so when I’ve been at my lowest points, the voices and flashbacks and nightmares – everything boiled over and again I was in the place where the pain and emotions and loss and guilt blocked out any ability to carry on.

I lost it and I was at the point of trying to end my life. I knew how I was going to do it. I had tried and tried but had nothing left.

I spoke on the phone to the GP Surgery. Somewhere, I guess some part of me was still wanting some kind of help or at least daring to tell someone. (They had called me over issues with a mess up over the prescription i should have had; I’d again been left without my medication. ) I admitted what I was feeling. I begged to see someone. I don’t know what made me do that, ask for help when the decision was already made in my mind that this was it now and I’d come to the end. But I did.

I admitted that I wanted to end my life and that I was self harming. I admitted that I had the tablets to overdose. I asked to be seen and that I needed help now, could they see me or get the crisis team? I said how all the mess ups with my prescriptions and benefits and no help in crisis were piling things onto me and making it more and more impossible to cope. I was having hallucinations and flashbacks. I had been asking for help for months. Now I could not go on anymore, I was going to end it. I needed help.

The GP spoke over me from the start. She told me that “you have to be extremely careful about how you are coming across” if I expected to get any medication. She then told me repeatedly, in response to me admitting that I was suicidal and self harming, that “that is not a fair threat to make to people” that “you will find I do not respond to threats” and that I am a responsible adult able to make my own decisions and there is no reason that I should take an overdose. She then announced that she was going to end the call and hung up on me whilst I was begging her to help me.

If Someone with Borderline, or any other mental health problem, admits to suicidal thoughts, plans or intentions, or self-harm, it is the most incredibly ignorant and dangerous reaction to treat them as though they are making threats in order to manipulate and must be punished accordingly. The stereotype that people with personality disorders or any mental health problem are manipulative, or that being suicidal or struggling with self-harming  is attention seeking,  are extremely dangerous. It is all the more dangerous when it is trusted healthcare professionals acting on the basis of these stereotypes when their patients have dared to ask for help, meaning that when we are in immediate danger we are dismissed, punished and rejected.

Experiencing suicidal thoughts is not attention seeking. Self harming is not to create drama or cry for attention. Admitting that you are in danger and want to end your life, that you are absolutely at the end of the road and can’t go on, that everything being piled on you is pushing you nearer and nearer the edge, is not making threats. The attitude shown by the GP today makes it impossible to ask for help when we are most in danger. I now know that if I admit to the terrible thoughts and feelings, I’ll be treated as though I’m manipulating people and will be rejected. If patients are treated like this, suicide and self harm is made something that must never be admitted to or talked about and for which help can never be sought. If patients are treated like this, all the feelings and events that have brought them to the point of suicide are dismissed in an instant, as our position is made out to be manipulative fabricated threats rather than complete brokenness.

Yes, I am an adult. Yes, I am responsible for my actions. If I self harm or attempt suicide, it is my action alone. If I cause myself harm that is done by me alone. That does not mean that the experiences and emotions behind my actions are not real, that I am not in danger,  that I am fake. No longer being able to carry on doesn’t mean I am manipulative. Asking for help and admitting to the horrible things in my head doesn’t mean I am making threats. Asking for help doesn’t mean the feelings that make me want to end it aren’t real. The fact that if I do something to hurt myself, it’s my action, doesn’t mean I’m not in danger and don’t need help.

I’m terrified of manipulating or hurting people I care about. That’s why I hide my self harm and did not tell anyone for years, why I usually don’t ask for help after overdoses… I’m scared that people may feel responsible for saving me… and the self-harm itself started in order to punish myself and hurt myself to turn it all in and not let the horrible things in me hurt anyone else, and overdosing  is sometimes about utter pain and sometimes utter rage and loathing at myself and fear of who I’ve hurt.

People who are self harming and/or on the point of attempting suicide are not nasty manipulative frauds, they are in massive pain and massive immediate danger. They do not need punishment and dismissal. They need a place of safety and compassion and they need desperately for the hurt and the danger they are in to be believed.

It is terrifying to admit to things like how close you are to suicide or that you’re overdosing. I never say it to friends (though two friends have sometimes guessed) because I do not want to make them feel responsible to keep me safe or worried I’ll do it again. That’s one thing.  But it has to be possible to admit it to healthcare professionals, if there is to be any way to get help.

Yesterday, my life was saved by a police officer who recognised the danger I was in, and by the emergency team who assessed me when he took me to them, and by the mental health workers at the safe haven I was taken to. I owe them my life. Thanks be to God.

The safe haven is a new organisation that has been running for just two weeks in my local area and I think massive good is going to come of it. I’ll post more on that going forward. Please God can that be the support other people find when they are in the state I was in yesterday, not reactions like the one I got from my GP. Sadly I think I’m not alone in what I encountered. And this isn’t the first time. I’ve encountered similar and worse lack of recognition or response to the danger I was in, and accusations of making threats or being manipulative,  from within the personality disorder service and in crisis teams.  If i am ever recovered enough to be able to somehow try to help other sufferers or explain to people what BPD is like and how to help someone in crisis, tackling this would be a massive priority for me.

Ginny xxx

It just doesn’t stretch, whatever I do

I’m scared I’m so close to everything falling apart. Financially. But it feels like everything.

I got an automated voicemail message from my landlord telling me I’m to call them urgently to discuss “ways we can help you to pay your rent”. They had closed by the time I finished work so I have to wait til tomorrow to call them and find out exactly what it’s about but I know it will be about my rent arrears. I doubt they will be “helping” me pay, somehow! I know the fact of having to call them doesn’t instantly change anything but I’m really panicking.

I was struggling already today, feeling very sad after a difficult 1:1 therapy session on Monday, a friendship having broken down and a few other things. After getting this message I just wanted to crawl under my duvet, cry, shut off, everything and nothing…and the urge to cut is very strong but I’m trying to resist.

Nothing is working out. I got into arrears last year when I lost my job, wasn’t paid notice and holiday pay as expected, and my housing benefit didn’t come through for 10 weeks. Working part time I’ve been entitled to some housing benefit but my claim has been messed up, suspended, altered back and forth from start to finish and I’ve had more periods of weeks with no money coming in. I’ve been paying my rent, with great difficulty, but not able to clear the arrears.

Now they have stopped my housing benefit because my salary has increased by a few pence per hour. This leaves me unable to meet even the tightest budget. I do not have enough money to cover the bare minimun of rent, council tax, bills like electricity, telephone, prescriptions, travel to the hospital, some access to the internet and food (let alone any other expenses like buying clothes when needed, any longer distance travel, or socialising). I’ve cut back as much as I can, especially on food. I don’t make proper meals, just toast, cereal and cheap snacks. It makes me feel awful (plenty of guilt for bad fattening food) but I can’t afford anything else.

I know the arrears are my responsibility and I have to pay. I feel panic and guilt every day over them. I know that in the past when very unwell I made poor financial decisions and was irresponsible with money, which has contributed to why I don’t have savings. So has the fact that I’ve been too ill physically to work full time at several points in the last 10 years.

Part of what is so upsetting is that I am now doing all I can but I still can’t stretch to cover the tightest budget or see any way to change things. I am pushing myself as hard as I can to keep going to work. It’s very difficult mentally – and I’m sad that it is so hard to do it but that is the situation I have to accept right now. It’s very difficult physically too. The pain I’m in from the fibromyalgia, arthritis and so on has been increasing since I started and each day it gets harder to do certain things (going up and down stairs, staying on my feet for lengths of time, etc) and if it carries on it’ll get to a point the pain is too much or I can’t stand long enough or something like that. I hoped if I kept pushing I’d get better at dealing with it but that isn’t happening and instead everything is flaring up.

I really want to keep working. I’m blessed with kind and happy colleagues, a caring employer, a creative environment, varied days, lots to learn and so many good things. Psychologically this job is so much less stressful than the legal secretarial work I couldn’t cope with. There’s so much that should be positive that I don’t want to waste.

However I’m in a situation that I just can’t cover day to day living going forward let alone clear the arrears I owe. It shouldn’t be a reason to give up but when things seem to be falling apart anyway, it’s harder to keep pushing through the physical pain and mental struggle to keep working.

I feel really trapped because with the rent situation alone I think I’m going to end up losing my flat. I know the landlord, being a housing association, has given me more time with the arrears than many other landlords would. A private landlord would have thrown me out ages ago. I know that’s another way I’m fortunate. It’s my responsibility but I don’t know how I can or will be able to pay.

Even if I could clear the arrears  I don’t know how I’d pay the rent going forward. If I can’t,  I don’t know where I’d live because I have no money for a deposit to rent privately. If I went back to renting a room as a lodger my mental health would crash downhill but at this point I would have to be grateful for anything. If I lose this place and end up homeless I’d lose my job. I might anyway if my physical health keeps going down.

It’s horrible thinking even if I get evicted and lose my flat, I don’t know how I’ll change my situation. It’s horrible that trying as hard as I can to do the work I can, I’m not able to live on what I earn and I’m assessed not to be entitled to any benefits despite this. I want to work as much as I can but I’m actually in a worse situation, it appears, than if I were not working at all signed off sick. My rent and council tax would then be covered by benefits. Not that that would help with the arrears but it would at least cover rent going forward. The system says it shouldn’t happen that you are worse off working than not, but it does. I’m actually put into a situation where doing the most work I can means I’m left with not enough to live.

I was referred well over two weeks ago to an organisation that would help me sort all this out and talk to my landlord. I was supposed to have been seen by them within two weeks. I chased up as I hadn’t heard, only to find out they said they had not received my referral from the support worker. It had got lost in the secure email system somewhere,  ironically. It has been sent to them again but now they are not likely to see me til after my operation.

I have no idea what to do. There are so many “if”s and a spiraling whirl of consequences that make it feel that everything’s already falling apart.

I don’t want to make out I have it harder than the next person. I know so many people are in this situation. I know I have to deal with it. It’s a time I wish someone could catch me when I’m falling like this but I know that’s nobody’s responsibility. I’m scared and everything’s already unravelling inside.i suppose I have to try not to listen to the spirals in my head until at least after I’ve spoken to my landlord tomorrow.

Ginny xxx

Psychosis… trying to process that word…

I saw a psychiatrist at the personality disorder service yesterday. I’d asked if I could have a medication review and talk to someone about my fears about my hallucinations (because of the focus of MBT therapy we don’t really talk about them at length in group or regular 1:1 sessions).

I was scared why are the hallucinations getting worse and why it seemed to be getting harder to know they aren’t real. They used to be voices inside my head. Now they’re often outside and at the time they’re totally real. Only after can I work out they couldn’t have been. And I’m seeing things too.

My mother had hallucinations and I’m just a year younger than she was when she gave birth to me and after that things got really bad for her. So I was scared is the same thing happening to me at the same age?

The psychiatrist was really nice,  understood me, understood my terror, understood the frightening experiences of my childhood and she took more interest in this background than I’d expected. Which was important because it allowed me to tell her about unusual, possibly hallucinatory (is that a word?!) visual experiences as a child and the very strong imaginary world I created to escape into, away from the bizarre experiences day to day caused by my mother’s weird beliefs and behaviour. I told her about feeling I dissociate into different personalities and worlds.

Then we talked about psychosis and schizophrenia. The psychiatrist used the words psychosis and psychotic symptoms for what I was describing. I asked if she thought I had Psychosis as another illness separate from my Borderline PD. She said it is hard to separate because having unusual external experiences is part of Borderline and I could be at a more extreme end of that, worsened by stress and perhaps as therapy is opening things up. Also she thinks I had a sort of ‘propensity’ towards it as a child – I can’t remember the word she used – and this interacted with my mother’s schizophrenic behavior and the abuse to make things worse.

I knew I have hallucinations. I was scared of Psychosis. One of the drugs I take is actually anti psychotic though I didn’t realise that.

It’s still scary that the word psychosis and psychotic symptoms is used for what I have. Partly, I think this is because I fear I’m going to lose all knowledge these things aren’t real and lose contact with the world and become as my mother did. Partly, it’s saying for sure I’m experiencing things that aren’t real. And I’ve so many fears about what’s real and what’s not real. Partly I don’t know yet.

I’m holding on to what the psychiatrist said, that if you keep taking the medication you do not tend to lose the knowledge that the hallucinations aren’t real. They might even go away.

So she’s writing to my GP for changes in my medication and higher dose of the anti psychotic meds.

I don’t know what to think right now. There seems a lot to get my head round again.

Ginny xx