Tag: hospital

Carers who really care

The doctors and nurses who looked after me when I was in hospital for my operation last week were fantastic. I owe them huge thanks. It was really busy on the ward the two days I was there, probably all the more so because a lot of surgeries had had to be rescheduled from the previous day. From my arrival, they were sensitive and compassionate. I was there because of my physical health but they knew about my mental health as well and we discussed it during my assessment when I arrived. The nurse taking care of me took time to be really aware of how both my physical and my mental health issues were affecting me and to enquire about whether I was getting the help I felt I needed and would be supported once I returned home after the operation.

It was a minor op but still daunting to me. The nurses and doctors’ compassion, communication, availability to answer questions, even simply their general presence, genuinely doing all they could to help, made such a huge difference. One nurse even taught me the instant ice trick!

I wasn’t an emergency, an urgent or complicated case, thanks be to God. They treated so many people in those two days, most of whom I’m sure needed much more care than I did. Yet they still had time for me.

I am so thankful for these people who give so much.

Ginny xxx

That should have been me

Do you ever feel that someone else’s place or circumstances should have been yours? That you really wish you could swap, or take for them what they are going through? I am not talking about good things, more about difficult things. So many times, when someone I care about is suffering, I’ve wished that I could take for them what they are going through. I guess that much is natural, when we care for someone, particularly with parents and children – I’m not a parent but I imagine loving parents would probably willingly take suffering themselves to spare their children’s suffering. Weirdly, I get these feelings with people I don’t really know. I can get really strong feelings that I should have been in their place, that it should have been me, not them.

When I was in the hospital for my operation last week, there were several of us on the ward having similar procedures. Lovely NHS blue curtains round the beds are fine for privacy in visual terms but do nothing to stop you overhearing what is going on, much as you really try not to! So, I ended up gathering that the lady in the next bed, about the same age as me, was having the same operation as me for suspected endometriosis. We both went into theatre and both came out and the doctors came round to see us to tell us the outcome. I’d gone in expecting to be told I had extensive endometriosis and that it had grown across my bladder and potentially other organs. I’m single and I do not want to have my own children. The lady next door to me had a (from what I saw) caring, loving husband or partner and I gathered that they were at the stage to consider starting a family. She didn’t know what to expect in the op. We both came out. I got told that there was no endometriosis. She got told that she has severe endometriosis, it has grown through her other organs, it was so severe they could not remove it in that operation and will need to do another more complicated operation, and if she wants any chance of having children it’s very unlikely and she would have to go through freezing eggs and having IVF. She was so astoundingly brave, talking to the doctors and talking to her husband / partner, I was stunned, but she has this shock and loss to face of likely not being able to have children.

Now – apart from acknowledging the fact that I have distinctly too big ears and need to stop being such a nosy moo (bring ear plugs next time!?) – I instantly felt that my place and hers should have been swapped. I should have been the one to have the endometriosis. I’m single. I don’t plan to have children, for so many reasons. I knew that already. I expected endometriosis. I’d not really have lost anything if I had it. She has a partner and they love each other and probably wanted a family and she’d have been a lovely lovely mum.

I didn’t know her and I’m sure I’ll never cross paths with her again but I cried and prayed to God, that should have been me. It should have been me, not her. It hurt.

Frequently, I get this strong feeling that it should have been me. It happens with friends, where I really wish I could, and feel I should, be able to take on pain that they are going through and go through it in their place. It also happens with people I barely know. Possibly it’s connected to times I dissociate, or my feelings that I “shouldn’t have been me”, shouldn’t have been who I am, I’m not real, everyone knows my thoughts and intentions are something other than what I think they are (something bad) – but this is different. Feeling I should have been in the other person’s place when they are suffering… that I wish I could take it on for them… that I want to take it away from them (but it’s more than that)….

Is that a typical Borderline Personality Disorder feeling? Or typical of Personality Disorders in general? Do you ever experience these feelings?

I’m sorry this is a badly written post.

Ginny xxx

 

 

Post op confused.com

Post op confused.com

I’m sorry for such a long silence. On Thursday last week, I had my small operation. It has taken me a few days to get back to the point of being able to write again. Anaesthetic and I are not the best of friends so the first couple of days after the op were not very nice. Now it’s good to be back! I’ve missed you all and I’m looking forward to getting caught up, both here and with your lovely blogs. I still have pain but it’s manageable.

The operation did not go in the way expected and it isn’t medically bad, but it is confusing.

The plan of the operation was to do a laparoscopy and laparotomy – look inside the womb, look outside the womb and at the surrounding organs, remove the endometriosis and insert the coil, all under general anaesthetic. (I don’t want to bore people going into too much detail as I’ve posted on this several times before, however you can read more about it here , here and here.)

I had been told for around the last 2 years that I have endometriosis and that this is what has caused the last 10 + years of heavy, really long and painful periods, bladder problems, constant pelvic pain, back pain, amongst other things. So I was expecting a big benefit of the operation to be removing the endometriosis and that therefore my symptoms would reduce or go away afterwards.

When I saw the consultant right after the operation, he said that they found no endometriosis at all. I don’t have it. It was the wrong diagnosis. They cleaned out my womb (eeek!) but found nothing wrong with my womb or the fallopian tubes. There were no cysts and no growth of cells outside the womb or onto other organs like the bladder, which they had previously been sure there would be. They did insert the coil.

I was stunned. Of course, it is really good that I don’t have endometriosis. From the reading up I have done over the last couple of years (for example, here), I know what a terrible condition it is. On the other hand, this outcome has left me really confused. It has left me without any specific explanation for my symptoms. It means I do not know whether or not I am going to get the improvement in my symptoms, especially the debilitating pain, which I had so much hoped for after the operation.

Also, I felt really stupid, fake and that I must be imagining it all. I shouldn’t have had the operation – yet again I’m a fake – my mind was screaming at me. The doctors were kind and they said it wasn’t my fault and wasn’t wrong that they did the operaiton. It was their decision to do it and my symptoms had worsened to the point that they needed to do it, if only for the exploratory purposes of finding out exactly what is going on. Endometriosis growth typically does not show up on any kind of scans – the only way to find out 100% for sure if / where it is present is to operate.

It’s a good thing they have checked out the situation. If it was essential to look inside, I almost kind of wish they’d have done it years ago rather than giving me all different kinds of medications potentially to treat the wrong thing. However, I do understand some women find that whatever the exact problem is, medications like the Pill and tranexamic acid can manage the symptoms and that’s how it’s treated, even if you can’t remove the root cause (kind of weird to try to get my head round).

Everything feels very confusing. My head is getting noisy at times with all the thoughts of being fake, having imagined it, having deceived people, specifically having deceived people into helping me and treating me. Fraud, fraud, fake, you made it all up, liar…. the voices say. When you have that struggle in your head already, having a load of “unexplained” physical symptoms that are horrible in themselves but are hidden and not able to be proved (you can’t see them on a scan, for example) is horrible and really triggering.

The doctor said that there could be a problem with my ovaries. I’m not sure exactly what problem he is thinking of. I was still reeling from the “no endometriosis” news and was still confused and foggy from the anaesthetic. I will have to check that out with my GP. The doctor also said that some women do have really heavy painful periods simply because of hormonal problems.

The coil I’ve had fitted should help with that. It’s definitely a plus that they have been able to insert the coil. All being well, I can have it for 5 years before it needs to be changed. It is good that it was done under the anaesthetic because for various reasons, some to do with the effects of the sexual abuse when I was a child, it is too difficult for the doctor and painful for me to fit it without anaesthetic. The doctor explained that the coil can take 3 – 6 months to settle in. (Seriously? 3 months? What’s it up to for goodness sake – is it popping out to buy a new 3 piece suite at Ikea? 😉 Still…) Then, it’s hoped that I will have no monthly periods, or that they will be much lighter.

This means the next step is to wait to see what happens in the coming months with the coil, and to find out what may be the issue with my ovaries. In addition, I will potentially need some more investigations. They may need to look further into what is causing my bladder issues, since it wasn’t endometriosis growths. This could be part of my fibromyalgia, or the neuropathic symptoms.

I’m also at the start of being investigated for a potential connective tissue disorder. I’ll leave that one for another post as it’s rather a long story, but I have just found out that it can contribute to a lot of gynaecological problems, as well as joint problems and pain.

Thank you so much everyone for your support in all your lovely kind comments leading up to the op. I do feel guilty now after you gave me all that support and it then turns out to be not at all the diagnosis that it was thought to be! I’m sorry. I feel really bad for posting before having been so sure it was something it wasn’t. It was what the doctors had told me it was, but I still feel bad. Your encouragement and friendship still really means a lot whatever the ultimate diagnosis and treatment is. I’m thankful.

Ginny xxx

[Image sourced from memecenter.com – with thanks]

Op tomorrow – and a short silence

Here we are. It’s my op tomorrow.

Surprisingly for me, until I left work today I was not feeling nervous. Then my colleagues who knew about it were all so supportive wishing me well. ..and ah yes up popped the anxiety again. Hallo there 😉

Tonight I have several things to do – check my transport for tomorrow, to see if there’s an early enough bus or if I need to get a taxi, get some groceries as I may not be able to get out for a few days after the op, text my friend who is very kindly bringing me home on Friday, call Dad, tidy up at home, pack, get myself ready….eek. But plenty to think about which is probably a good thing!

Thank you so much for your support, messages, wishes, prayers and caring. It really means a lot at the moment. I never expected to find so much friendship through blogging and I’m hugely thankful.

I imagine I won’t be able to post for a few days whilst I’m recovering. I’m sorry in advance for the silence. You are in my grateful prayers and I’ll be back in touch as soon as I can.

Ginny xxx

Gynae update – almost op time

Warning gents (or anyone for whom this may be TMI! )- look away now if you wish 🙂 !

It’s almost op day.

My surgery is scheduled for this Thursday. (It was postponed by one day because of the junior doctors’ strike.)

On Friday I had the pre-op assessment, where they check things like your blood pressure, that you don’t have particular infections,  or any conditions they need to be aware of which may make anaesthesia more risky. Thankfully all went fine.

This afternoon, I’m going in for an MRI scan. I was just about to get on the bus to the hospital when I got a phonecall to say the scanner was broken and my appointment was canceled! I really put my foot down. I need to have the scan before the operation. I questioned when they booked it (after an A&E doctor and I had kept chasing!) the fact that it was so close to the operation and was assured it would be fine. After the severity of symptoms I’ve had there was no way I was going to risk the operation getting postponed because they didn’t do the scan. I don’t usually insist for things like this but today I did. They were not forthcoming at first but I’m now to go at 4.30pm and wait however long it takes for another scanner to be available. I’m just thankful it’s being done today so the op can go ahead.

On Thursday I have to go in for 7.00am. All being well I’ll stay in overnight and come home the next day. I’m so so much hoping they can do what they want to and it fixes something. They are doing exploratory surgery, they are hoping to be able to remove some of the endometriosis and they are going to insert the coil. Depending how bad the endometriosis is they may not be able to remove all of it (they think it has probably grown over the bladder because of some of my symptoms and if it has grown through the bladder they will need to do another operation). I’m really hoping they can remove what they need to and that having the coil helps prevent it returning (I’m not sure about how effective they think that’ll be) and makes my periods lighter. Taking the Pill made no difference and I have still been bleeding for 3 weeks at a time but because the coil releases the hormones in a more localised way in the womb, it’s hoped it’ll be more effective. I was not too keen on having the coil but things have got so bad now I feel I have to try it. They are not willing to consider any other treatments til I’ve tried it. I’m kind of feeling trapped by that but I am also very thankful that after 10 years + of problems, a thorough investigation is now being done.

This past month I’ve really not been great physically. I had 4 days off work because of the pain and bleeding. I could only stand up for a few minutes at a time because I was so dizzy and in so much pain. I’m still having only 2 weeks between periods and they are lasting well over the supposedly usual week. My fibromyalgia and arthritis are bad at the moment too but the gynae symptoms are having a big impact. So Thursday can’t come fast enough!

I’m grateful that I got referred to a consultant who is taking things seriously at last.

Right, time to head off to the hospital and pray that everything is in order for the scan now!

Ginny xxx

 

5 Things – update

I’m sorry for the late update. Yesterday took a rather unexpected turn. If I tell you one thing to be thankful for was the nice A&E doctor, you’ll start to get the picture! :-0 🙂

I fainted at work and had so much pain I went to A&E. I wasn’t sure whether to go or not especially as this is now chronic, but work pushed for me to go.  It was the worst pain yet. It was probably the right choice to go as if things had got even worse later at home I’d only have been even more stuck and maybe ended up going anyway. As it was, they were able to give me a stronger dose of analgesics which have started to control the pain so that is really good. It took about 4 hours before I could walk slowly without feeling so dizzy I thought I’d faint again. I got discharged home in the late afternoon.

Roll on the surgery…

Still, I promised to update with the 5 things I’m thankful for, so here goes:

1 – That I have a caring manager and colleagues who really did seem to care more about my health than the trouble my absence would cause on a busy Saturday. How different this was from all my previous experience.

2 – The particularly caring doctor at A&E. It matters so much to feel listened to and that a plan is put in place to manage and cope better with symptoms when they can’t necessarily be cured immediately.

3 – The friend who most unexpectedly was in the area and came to bring me some grocery essentials and stayed to talk a while.  Someone caring enough to go out of their way to give practical help and give me company made a huge difference.

4 – A sea of beautiful daffodils spotted on the way to work. Pretty things are close at hand if you force yourself to look.

5 – My hot water bottle and my blanket!

Ginny xx

 

 

Meanwhile, in gynae news. ..

(Apologies gents – look away now if you wish 🙂 !)

A special thank you to those of you who have been wishing me well with the gynae treatment. I got some more good news this week – a date is set at the end of April for my surgery! I’m very surprised it is so soon. I’d expected to be waiting months.

I’m really pleased that this hopefully means some help and some answers soon.  Today I’m in a lot of pain again and feeling very faint and I’ve had less than two weeks between one period ending and the next starting….ouch….. so it’s good timing for this news.

I have to attend a drop in clinic to have a pre-assessment before the surgery. I’m also expecting to be sent for an MRI scan.

All in all I just feel very fortunate that things are moving quickly.

Ginny xx

Tuesday coffee group

Tuesday coffee group

Today is my day off. This morning was horrible with very bad back pain and feeling really low, but I managed to get out to a weekly coffee meeting. I can’t always go to this because of my work but I like to go when I can. I first started after I was in hospital, when another patient told me about it. It’s a kind of support group for local people with mental health needs, although it doesn’t take any particular structured form and is just like friends meeting for coffee. Most of us, including the lady who coordinates it – a lovely caring person who unobtrusively helps and advises many people in need – have been inpatients at some point in our lives. We all face a variety of mental health challenges. We don’t necessarily tend to be in touch between meetings but it is something regular in the diary to look forward to and where we know that we can talk about how things are if we need to, not talk if we don’t want to, where we empathise with each other and where there isn’t the usual pressure to keep up a front and appear “fine”. I think these sources of peer support are few and far between and I’m very grateful for it and the little cafe that welcomes us for a few hours every week.

Ginny xxx

[Image from “Gilmore Girls” (episode PS I love you) – created by Amy Sherman Palladino, all rights belong to respective artists]

A closing drawbridge and a silent cry – Eating Disorders and Personality Disorder – #6

A closing drawbridge and a silent cry – Eating Disorders and Personality Disorder – #6

Protection in Emptiness

Eating Disorders and Personality Disorder – #6

“Closing the drawbridge” – eating disorders and rigidity

PLEASE READ WITH CAUTION – this post contains discussion of eating disorders (primarily anorexia), description of my eating-disordered thinking patterns, and a link to an article about studies on calorie restriction

[Wow, again it has been too long since I have posted in this series. Sorry.]

Many books about eating disorders, in particular anorexia, mention rigidity of thinking as a symptom which emerges as restriction of food increases and weight drops. When I worked at an eating disorder service, it was frequently described in inpatients on the ward. I’ve been pondering why this is and how much did I experience it when I was anorexic. I never used to think that my eating disorder was about control, although I now would take that back and I think I did use it if not exactly for control, in order to separate myself from my mother’s abuse and protect myself (and, I thought, others too) from demands, emotions and the dangers I felt they presented.

Perhaps it is logical that counting calories and measuring portions and exercise, forcing yourself to adhere to a punishing regime of starvation and painfully excessive activity in the very weakened physical state of anorexia, requires a strong, almost angry, obsessional drive. Sticking to this above and against all the natural urges of your body to keep you well and nourished, to the point that your body consumes its own muscle for energy, requires a steely determination that must be fuelled from somewhere. This could be seen as rigidity. It could easily spread to other areas of cognition and daily routine.

Certain chemical changes in the brain are thought to contribute to this rigidity as well, I believe. Two studies were conducted in the 1950s, using as participants conscientious objectors to National Service and former prisoners of war. One of these is the Minnesota Starvation Experiment, where starvation was imposed on physically and psychologically healthy participants who had no history of eating disorders. As the participants’ calories were reduced and their weights dropped, their thinking patterns became more rigid and obsessional thought and behaviour patterns emerged. When their calories were no longer restricted, they also became vulnerable to binge-eating. You can read more about Ancel Keys’ Minnesota Study here. (It would be considered highly immoral by today’s standards, although perhaps it is worth bearing in mind that one purpose of the study was in order to find out how to care for and manage re-feeding and weight restoration in victims of starvation in several countries following World War II.)

I am not sure to what extent rigid thinking was a big feature in me when I was severely underweight. Others who knew me at the time might disagree! It was mentioned to me on a couple of occasions.

On further thought, perhaps I did not struggle so much with rigidity over, say, my daily timetable – with the notable exception of excessive exercise, as I forced myself to swim a certain distance a certain number of times per week, until I was so exhausted and weakened that I could no longer move through the water which felt ice cold, my legs cramping, and I would drag myself to the changing rooms with my skin purple and blue, bruises appearing that did not heal and no number of layers of clothing warming me up.

However, if the rigidity was not externalised, it was certainly internal. This is what I think of as the “closing drawbridge” of anorexia that locks up or locks away everything we fear. I’ve talked in previous posts about the blissful, safe numbness of anorexia, ensuring my emotions were in check and flattened, and ensuring the evil I perceived in me was locked away to hurt only me, weaken only me, so that I could not hurt anyone else. Locking up the perceived evil locked up feeling, too. No more panic – just obsessive counting calories, distances, how to hide or avoid food. No more fear – just explicable pain, wonderful blanks and emptiness, safe empty gnawing in my stomach. No need to feel others’ feelings. No need to be hurt or be overwhelmed. Just glorious numb, nothing, whiter. lighter, clearer than before. No needing; no taking; just closing down, separated, apart from everything, locked up safe, pushing away and always succeeding, taking nothing in, frozen.

As a friend pointed out to me recently, emotions take energy, just as physical exertion takes energy, so with vastly insufficient calorie intake, there simply is no energy with which to feel. Despite the lack of energy, the drawbridge was shut tight and closing harder. The further I starved and restricted, paradoxically, tighter shut the door and even stronger came the energy driving me on, not to need, not to feel, not to fear, not to touch anyone or anything.

Coupled with that strength came a desperation never to leave this closed up place and never to need or feel again, to remain unreachable, to keep safe away and to keep everyone else safe away from me. If I could just be sure to hurt myself enough and never to eat, this wonderful place would stay with me. The fear of everything the drawbridge kept away joined the energy and both drove me harder and deeper into the numb place of anorexia.

Combined with my mother’s illness and abusive actions, there was no shortage of reinforcement from the outside that this numb place was good. The only period of my life in which my mother’s emotional abuse and threats reduced and in which she was even caring towards me, in which interactions with her were free of threats and scorn and twisted statements about the harm I was doing to her and my father, was when I was severely underweight with anorexia so severe it was probably life threatening. I was no longer a danger and no longer seemed to be so evil. I even thought perhaps she loved me. I even dared to hope perhaps the evil thing I was sure was in me and that came out and hurt and controlled and deceived everyone, was gone. If I could just stay like this, perhaps it wouldn’t come back. On the other hand with the drawbridge tight shut my body was mine as well, only mine, and the anorexia was mine, and she would never come near me again, literally never touch me again.

(Perhaps that was the one thing that was eventually true in all my twisted anorexic thinking. She did abuse me sexually during the anorexia but afterwards, she didn’t ever abuse me sexually again.)

Until I started to eat again and weight restore, there was only one thing that cut through my rigid defences, and that was singing. I’m not a particularly good singer but I was in a musical at my school (more because I used to be able to dance, than for my voice, I think!) and afterwards I took singing lessons, which were about the only part of my later school years that was enjoyable. Although I enjoyed singing, during the anorexia I would find that the music had a peculiar effect. We didn’t usually sing particularly emotive songs but I would often find music bringing me to want to cry or causing a strange twisting feeling of unease inside me, as though it was draining away the rigid kind of energy but I wouldn’t let it go. My mother prevented me seeking any professional help for my eating disorder but the only two people to whom I did talk about it honestly at all at school were my singing teacher and my art teacher. (My swimming coach was also very concerned about me and to some extent I did talk to her but, for some reason, although I knew she cared and was a safe person to trust, I was never able to be truthful to her, I think because in some way I feared hurting or disappointing her too much.) I don’t know why music and to some extent art, broke through the rigid protective mechanisms, but it did. I know that music can be very helpful in therapy for people with various conditions, including dementia and depression. I’ve never read about it in relation to anorexia but that might be something I should look into!

The struggles I have with overpowering, overwhelming emotions in my Borderline Personality Disorder, are the complete opposite of the protective place I entered in my anorexia, and they are an excess of feeling and needing which are probably, actually everything I feared. If I’m honest the numb place was safer. I’ve long lost the way back there and lost the key to the drawbridge and I hate that and I’ll admit that in the worst times, when I really hate myself and everything I feel and need, I wish I could return and it’s hardest at these times to try not to punish myself with cutting or purging. I’m trying to learn how to choose life and staying connected to other people – and to my body and my emotions – without the unbearable and dangerous becoming all that there is.

Ginny xx

Scared I’ll lose it again

Tomorrow I have my usual weekly group therapy, then I have my monthly care coordination appointment (it’s supposed to be monthly but has been canceled more often than not since October last year). It’s challenging at the best of times when this appointment comes round, especially when it closely follows therapy group on the same day, which is draining in itself.

I’m very worried about the care coordination tomorrow. Last month I was really upset and desperate in the appointment, didn’t get the help I felt I needed to stay safe and left wanting to end my life and overdosed. There was a complete lack of understanding between me and my care coordinator.

I’m scared something similar may happen. I’m scared that I might lose it like I did a couple of weeks ago. I’m so so ashamed of that and I feel dread when I think of it. I’m scared I won’t be able to control what I do and it’ll happen again because I’m so unstable right now, flicking into distress and hurt and anger so quickly.

Also, I’m scared because there are really difficult things I want and need to say. I can’t say everything’s good and fine or that I’ve made progress; I can’t say I think I have the support I need because there are massive issues and have been huge failures in communication and so many things promised have not been acted on. I now operate by expecting nothing from the service and expecting whatever is arranged not to happen. It’s “safer” that way. It doesn’t open me up with hope and trust then twist the knife with another let down or betrayal. It means I don’t ask for help either.

I need to communicate these things. I never do, usually, but if I don’t there’s no going forward. So I’m going to try to say at least some of them and write a letter as well in the next few days.

I do not know how to stay calm whilst I do it. How do you stop yourself losing it? How do you control the aftermath of feelings without harming yourself? How do you keep your emotions level when things that are really deep hurts to you, are unanswered or ignored?

I’d be seriously thankful for any suggestions!

Ginny xxx