ECT, remission and grief

•July 30, 2015 • Leave a Comment

It’s late at night here, and I can’t sleep because there are so many things running around my head so I thought I would write some reflections on ECT. Electro-convulsive therapy is a treatment which has been around a very long time and is used as a kind of last-ditch attempt at treatment for people with really severe drug-resistant depression. I have never had much luck whatsoever with antidepressants to treat my depression. I’ve been on the newer classes of the drugs (SSRIs and SNRIs) probably 5 or 6 times in the last 10 years and they have never really made a positive difference at all, and have contributed to psychotic episodes twice. My mum works in mental health and recently told me that a lot of people don’t have the necessary receptors needed in order for those types of drugs to work, which makes me wonder why my doctors over the years have continue to flog that dead horse really. 

Last year my depressive episode was so severe that I came incredibly close to taking my own life on more than one occasion; an issue which is quite hard to talk about. I was put on an anti convulsive which is often used very effectively to treat bipolar depression but  only had a slight improvement in symptoms. After there had been very little change in nearly a year my psychiatrist suggested that we try ECT. I was terrified at first – like many, my preconceptions about ECT came from books/films like One Flew Over The Cuckoo’s Nest, and it seemed barbaric and outdated. It can be pretty effective though, and is credited with saving many lives which would have otherwise ended far too soon. I was most worried about the memory loss that is often associated with the treatment, but after speaking with a couple of people who had gone through it decided that it was worth the risk.

I had my first treatment in January this year. At first it was extremely intensive – three treatment sessions a week, meaning 3 general anaesthetics per week! A wonderful friend who happened to be on leave from work following surgery did us so many favours in terms of driving me to and from sessions, and many people helped out with the kids, we are so grateful. I didn’t see many results for some time, and was weaning off antipsychotics during the same period, so it was very difficult. Gradually though I started to improve. During the same time I was switched to a different mental health prescriber who had done some searching and found a research study which compared three groups of patients – those who had ECT alone, those who had ECT combined with an older (tricyclic) antidepressant called Nortriptyline, and those who had ECT with a newer generation antidepressant called Venlafaxine (an SNRI). The ECT & Nortriptyline group came out significantly better than the others so combined with my poor history with new generation antidepressants she suggested trying me on that. I was a little wary – the side effects for the older drugs are more challenging. I had previously been on amitriptyline (also a tricyclic) for pain relief, which had caused me intolerable side effects – waking in the middle of the night and not being able to get back to sleep because of incredibly dry painful eyes being the worst of these. These drugs are not prescribed that much because of these issues and because they are off-patent and therefore very cheap to produce. This means that there are no drug reps going around promoting  them to prescribers and no samples/incentives being given out for them unlike the newer drugs – they’re just not sexy! I thought it was worth a try though so started on these some time in February or March. Over the next few months I saw real improvements, which was wonderful. At the beginning of June I had a really unpleasant couple of weeks of hypomania, which were horrible and worrying. Because I had weaned off the antipsychotics I was able to increase the mood stabilizing drug that I was on, and eventually things balanced out a bit more. As I came back to life slowly there was a strange in-between state where I no longer felt that depressed, but also didn’t really care about anything or have any interest or passion for things that I had previously cared a lot about. I also felt extremely lacking in confidence. Slowly though those have returned more back to normal which is wonderful.

I now live in a strange place – I am no longer particularly depressed. I struggle with some parts of life, particularly motherhood, very much, but it doesn’t destroy me like it did. I am however living with a huge sense of grief. ECT has saved my life, but has taken what I would estimate to be around 30-40% of my entire memories. It is completely random as to what has gone, like holes punched in my brain, and some of the strangest things are completely baffling to me now, it can be very embarrassing! I found it particularly stark over the last 3.5 weeks when I was in England – it has been a big issue in America, but here I am meeting new people and finding my way around new places so it doesn’t involve memory as much. At home however there are so many things that I should know which have gone completely – finding my way around Manchester and Salford, where I lived for 13 years, was almost impossible and so frustrating. I also found I was missing huge amounts of information about my family and friends’ histories and memories we had together. It was really sad, frustrating, and really embarrassing. It also concerns me because I am trying to study for my exams to get my nursing license to work here and am finding it so hard to remember my training or retain new information. I am also having problems with working memory which is extremely unusual for me, and I’m not sure whether that is also a side effect.

Overall I am incredibly grateful for the combination of ECT and Nortriptyline. Along with having a therapist who is excellent and has been so much more productive to work with than anyone I have seen in the past I do think that they have been instrumental in saving my life. Again I was speaking to my mum about the issue and I was very sobered to hear than on th NHS in England, you are allocated 6 sessions of ECT. In people who don’t improve significantly you can sometimes get approval for six more. I have had nearly 30 sessions and didn’t really see improvement until around 15. The overall cost to my insurance has been over $60000, of which I have paid $3000. Much as I hate many aspects of healthcare here I think that there is a good chance that if I had stayed in the UK I would not be alive.

My gratitude for the treatments is balanced with the grief I feel about the loss of so much of my history and knowledge. I would do the same again, but it is a high price to pay for sanity.

Anyway, there are a few musings on ECT. I know many people are very scared of having this kind of treatment but for those with treatment-resistant depression I would really recommend it. It is better to deal with grief than to be dead.

In relation to that check out Project Semicolon. It’s a really interesting organization which does mental health advocacy and awareness, and particularly tries to raise awareness of suicide and depression, which is often a subject that people are not willing to talk about. Their aim is that people struggling with these issues become aware that they are not struggling alone.

That’s enough for tonight, thanks for reading,

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Physical health, a strange miracle

•July 13, 2015 • 1 Comment

I still can’t quite bring myself to write in detail about my mental health so I thought I’d take the opportunity to do a physical health update. Lots of people won’t know much about my physical health struggles over the years, especially those in the US who have only know me for the last 18 months so here is a bit of background. It’s going to be quite long as in order to understand the complexity and severity of the physical problems I have had, and how things have finally improved you need to know the whole story! I won’t be offended if people aren’t interested, but quite a few friends have asked me about it recently and it’s a bit exhausting explaining it again and again so I wanted to put it down in writing so that I can direct people to this and then answer any questions people still have.

I have always had extremely hypermobile joints, ligaments and tendons, which means that since I was very young I have regularly injured myself doing normal activities, most of the time minorly, but sometimes seriously.  Later rheumatolgists have classed it as Ehlers-Danlos Syndrome type III, as connective tissue problems are becoming better recognised and understood, but when I was little people just called it Benign Hypermobility Syndome. It didn’t feel very benign! The worst of these injuries was at the age of 18 when I was revising for my exams lying on my front in the garden and rolled over to sit up. My left hip subluxed (a self-replacing dislocation), and left a lot of damage. I slowly rehabilitated from this but was left with mild chronic pain, and a hip that locked quite regularly, especially with activities like using a cross trainer at the gym.

At university I was extremely fit – walked about 5 miles a day (fast!), went to the gym 2-3 times a week and used an exercise video to do strength training at home. Despite this, as time went on throughout my training as a nurse the pain in this hip got progressively worse, and I went from taking anti-inflammatories (and ending up with awful stomach issues from their long term use), to taking mild opiates, and then moderate opiates for the pain. By the end of my training the pain was getting much worse and one of the Consultant (Attending) doctors on the unit where I had been a student, now worked part time on and had succeeded in getting a job at noticed me limping and asked me what was going on. As well as a medical specialist he was a rheumatologist and told me to speak to his secretary and come and see him in his clinic. He examined me and took my history and was the first doctor who didn’t fob me off about the issue. He ordered an MRI of that hip, which came back showing a labral tear – a tear in the cartilage of the hip socket. By this time I had qualified as a nurse and was starting my job, having to take even stronger opiates and use a TENS machine to cope with the pain. It was making every day life more and more difficult and was making practicing as a nurse extremely hard. Unfortunately the surgery to treat labral tears was in its infancy at that time and wasn’t being offered on the NHS. A couple of months later the pain was becoming unbearable and I had to go on sick leave from my job, which was devastating as I loved the unit and desperately wanted to work there. Over the next few months I got progressively less and less mobile until I was having to use crutches all the time and even a wheelchair sometimes, and was now on very strong opiates to cope with the pain. It also meant that my ability to exercise went down to almost zero, so I started to become deconditioned, something that is a BIG problem if you already have hypermobile unstable joints.

Finally realising that I wasn’t going to be able to get the surgery that I needed to fix the problem on the NHS we went about finding a private Consultant who would perform it for us. In the end we traveled down to Cambridge for me to have surgery with a really well known and experienced surgeon there. It cost a fortune and was a huge undertaking practically but we hoped it would be helpful. Overall I recovered pretty well from the surgery, and had quite a big improvement in my symptoms, which meant that I was able to get back to work in a non-clinical role on my unit, doing auditing and supporting the senior staff there. Unfortunately because I had become so deconditioned while waiting to find someone who could perform the surgery I needed, my pelvis had badly destabilised so I now had quite severe pain in the sacroiliac region of my lower back. The hip pain had also not completely recovered. After 6-9 months the management of my unit and  I agreed jointly that I probably wasn’t going to recover enough physically to get back to clinical work of that type (incredibly physical acute nursing care), and I left that job. I was devastated about this and became quite depressed, which in turn made the pain more difficult to cope with. I then went to work a less physical nursing job, but found it very boring and unstimulating and left it after about 6 months as I had become even more depressed. I was still taking strong opiates, and as is the case with all opiate use, the dosage had to be gradually increased in order to maintain the same level of pain relief.

I became pregnant not long after I left my second job, and although I became a childminder for a while, by about 28 weeks of pregnancy I had had to stop work completely as the hormones of pregnancy cause connective tissue to become more lax, and the destabilisation of my pelvis had got even worse, causing excruciatingly pain. At 35 weeks of pregnancy I developed a very serious complication of pre-eclampsia called HELLP syndrome, which causes liver failure and severe clotting problems. I had to be induced and gave birth to Amelie after a very horrible birth which caused me to develop PTSD. My chronic pain problems persisted following her birth, and it was thought that there may be a remaining damaged area in the hip cartilage that may be able to be helped with further surgery. Luckily by then this was being offered by the NHS, so when she was about 5 months old I had repeat keyhole surgery on my left hip. Unfortunately this did not really improve things, and as pain is often hard to localise in retrospect it was probably the unstable pelvis pain causing most of the problems rather than the actual hip joint. By this point I had developed what seemed to be nerve pain in my hip and lower back, so was put on drugs to treat this by a neurologist. I had unbearable side effects and had to stop this treatment quite quickly. Unfortunately I was in too much pain to do vigorous exercise, although I did take up pilates, which helped to some extent. My depression persisted, not helped by the birth trauma, and I found it harder and harder to cope with the levels of pain that I was experiencing, and how difficult it was to carry out the normal tasks of living, especially with a small baby. I was put on antidepressants for the first time but really didn’t get much benefit from them whatsoever so stopped taking them after a few months.

When Amelie was 11 months old, I travelled down South to help out a friend who had recently given birth establish breastfeeding and deal with the first couple of weeks of life with her new baby. While I was there I developed an incredibly itchy rash all over my body, along with really upset guts, and an overall feeling of being quite unwell. I thought that I had perhaps been allergic to their washing powder or something like that but it persisted when I returned home, in fact it persisted for months and months! The gastrointestinal problems became so severe that eventually I was referred to a gastroenterologist, but they couldn’t find any cause for my symptoms. I gradually started to feel more and more ill and fatigued, and developed all-over joint pain that had not been present before. The combination of these symptoms meant that I ended up with a diagnosis of fibromyalgia, which basically means “we have no idea what is wrong with you, so let us categorise you with everyone else who we can’t diagnose and quietly imply that you’re a little crazy”. Life continued, and I gradually got used to feeling rough all the time, while continuing to live life as normally as possible do as many little things as I could to improve my health like pilates and mild exercise.

My second daughter was born just over 2 years after my first, and was an extremely high-needs child! It was a horrific time of dealing with a screaming baby, a tantruming toddler and chronic pain, fatigue and illness. When Maya was 3 months old I developed flu – proper flu where you can’t even get out of bed. For 8 days all literally all I could do was lie in bed, just about coping with breastfeeding Maya when she was brought to be hungry, but was otherwise completely incapacitated. My mum had to come and stay to care for us as I was so ill. After I started to recover physically, I had a bit of a mental breakdown, developing severe and crippling anxiety. While I had experienced mild anxiety before this was really extreme – an almost physical experience, meaning that I was mentally paralysed and unable to function. As my mum had to go back to work I went with my girls to stay with my parents, and while I was there I went to a local GP and was put on antidepressants again. I returned home after a week or so and slowly returned to functioning, The next few months were such a battle with anxiety and depression, and again I got very little benefit from the antidepressants I had been given.

I gradually improved mentally but slowly went downhill physically, developing mild joint pain all over my body which was generally worse in the mornings, improving throughout the day. When Maya was 9 months old I woke up one morning and couldn’t even lift my hand to my mouth to take my morning medication. I was in excruciating pain all over my body. This persisted for weeks, and when I finally was able to see my rheumatologist it was all put down to my connective tissue disorder. I was told that I should stop breastfeeding immediately and go on the combined oral contraceptive pill as that can be helpful for people with hypermobility. Desperate, I agreed and did what they suggested, but instead of getting better I actually got worse. Two months later I developed a severe sinus infection and was put on Doxycyline – an antibiotic. The pain in the rest of my body got dramatically worse and I ended up being admitted to hospital because the pain was so uncontrollable. Many tests later and doctors concluded that I had some kind of autoimmune joint pain, possibly Lupus but they were unsure. I was put on an antimalarial drug which can help in these situations and had some mild improvement from that. The next few years were generally a disaster, trying to be a mother of two children with severe chronic pain and illness is just dreadful. Along with the joint pain from the time of the admission to hospital I just felt constantly so unwell, the only way to describe it (although I’m aware it sounds very overdramatic) was that I constantly felt as though I was slowly dying. I was utterly desperate, unconvinced by the tentative Lupus diagnosis and spent countless hours researching what could possibly be wrong with me. I paid privately to see a different rheumatologist, and had to have quite a lot of help from many different people to cope with daily life and looking after the kids. It was hellish for my poor husband and very tough on my kids and extended family. I became severely depressed, and yet again tried antidepressants with very poor effect. I was so hopeless I wished I was dead, living with such severe pain and feeling utterly dreadful all the time is awful, but not being to play properly with my kids and struggling not to be very short-tempered and irritable all the time is even worse. I was constantly terrified that my kids would be very badly affected by how incapacitated I was, and had to put them into childcare so much earlier than I would have liked to if I had not been ill. I felt like a complete failure as a mother as I had had so many forced choices about my parenting that went against the things that I considered really important in parenting. My marriage was under constant strain and life felt very hopeless. The desperation I felt is difficult to describe in words.

Over the years I tried various things to help with the pain. I tried hydrotherapy, which helped a bit. I tried physiotherapy, which helped a bit. I tried pilates, which helped a bit. I tried chiropractic, which helped a bit. I tried complete dietary changes – I went dairy and gluten free, which helped my gut issues a lot. I took a really extreme approach and cut out all sugar (including fruit and natural sugars) out of my diet for 6 months. This helped significantly but was totally miserable. I tried various supplements including probiotics, all of which cost a fortune but made little tangible difference. I saw a nutritionist and was recommended to reintroduce fruit sugars and unrefined sugars but to do some other tweaking of my diet, which helped a bit, and slightly improved my depression, which had been made worse by being on such a bloody miserable anxiety-producing diet.

By this point my husband and I had decided to consider our family complete at two children because of my health issues. We both would have chosen to have one more child if I had been well, but thought that it would be irresponsible to do so considering how unwell I was. However we had not yet taken permanent measures to ensure this, and in 2012 discovered VERY unexpectedly that despite our best efforts, I was pregnant again. I was UTTERLY terrified, I was struggling so much to cope with two kids and chronic illness, how on earth was I going to manage with three?? I had a massive increase in anxiety straight away and by 16 weeks of pregnancy was basically not functioning mentally. Yet again I was put on SSRI antidepressant/antianxiety meds, and yet again got minimal improvement from them. In fact I just got worse and worse overall. The rest of the end of that year is really hazy in my memory but I know that I was admitted to hospital several times with awful physical symptoms and worsening mental symptoms. It all culminated with a terrifying hospital admission where I became psychotic and was eventually admitted to a mother and baby psychiatric unit when I was about 30 weeks pregnant. At the time I was also in so much pain that I was mostly wheelchair bound, and on ridiculously strong opiate painkillers, which I was terrified would affect my baby. I was also so scared about taking the antipsychotic medication recommended but was basically told that if I didn’t I would be detained against my will and forcibly medicated. I told the psychiatrists several times that I thought that my physical pain had worsened massively since I had been taking the antidepressants, and eventually they agreed that if I kept taking the antipsychotics I could come off them. The physical pain got quite a lot better quite quickly as did the psychosis and I was eventually discharged at about 37 weeks pregnant with a diagnosis of Health Anxiety, as if that could explain all my symptoms both physically and psychologically.

Following a thankfully uneventful birth my physical symptoms actually improved significantly, and although it was a complex time psychologically (to be written about later!) I actually improved significantly over the next few months, which was just as well as we were preparing to move to the USA to help care for Peter’s mum who was terminally ill. I worked extremely hard over those next few months – trying to pack up a house and organise a move whilst caring for three children and being chronically ill and in pain took a huge toll on me both physically and mentally. We moved in October 2013, and within two weeks of arriving in the USA I took a nosedive physically and was extremely ill again. Due to issues with insurance due to Peter not yet being employed in the States we knew that if I was admitted to hospital there we would probably end up bankrupt. It soon became apparent that I was going to need hospital care, although we had no idea if it would be medical or psychiatric, as the symptoms were so complex and interlinked. We decided that I would return to England with Joseph, to live with my parents for a while and see how things went, with Peter and the girls staying in America to get established with work and school and try to maintain some stability. This was a heartbreaking decision but overall seemed to be our only choice.

When back in the UK I remained very physically ill and very unstable mentally. After a few weeks I had another major psychotic episode and ended up stealing my parents’ car and leaving their house with Joseph late at night, convinced that we were in danger and trying to get to a friend’s house for their help. I was stopped by the police and taken to hospital, where I was assessed and again told that if I didn’t accept treatment I would be detained against my will. I was admitted to a mother and baby unit (this time in Nottingham in the midlands) and remained there for three months, wildly psychotic (although relatively quietly so), but thankfully well supported by staff and family and friends (the treatment in the first mother and baby unit in Manchester had been dreadful). I will be writing more about the experience from the psychiatric point of view later, but what was interesting is that over the next few months I had quite a lot of improvement in my physical health. In fact when I was discharged 3 months later I was able to gradually decrease my painkiller use and was able to walk with relative ease for the first time in years. I was still using painkillers but it was much less, and some of the stiffness and general feelings of being generally unwell had improved too. I remained very very depressed, but was very grateful to be feeling at least a bit better overall.

In April 2014 I returned to America to be with my family, physically more stable but mentally a mess. Again I will write more about that later but I continued to have significant improvements in my health over the next 6 months despite reintroducing dairy and gluten into my diet (I was simply too depressed to keep going with that!) with minimum worsening of my gut issues. Six months after returning to America amazingly I felt physically well enough to start going to the gym again (also motivated by having put on so much weight from taking atypical antipsychotics – massively affect your metabolism, and from being miserable and eating too much). This was pretty astounding as I had wanted to be able to do this for years, but had always been in too much pain and feeling too unwell. Starting back at the gym was both difficult and wonderful. At the beginning, all of the old hypermobility injuries caused me a lot of grief, especially my shoulder which I injured at university doing judo, and which made getting back to swimming very painful. Gradually though, the working out strengthened my muscles, which re-stabilised my joints, including my pelvis, which was the source of so many of my problems. I also started having ECT (electro-convulsive therapy, also to be talked about more later), taking a mood stabiliser (an anti-epileptic called Lamotrigine), and taking an older style antidepressant called Nortriptyline, as there was some research which found that the combination therapy was more effective than the treatments on their own. I was diagnosed with Bipolar Disorder, which is probably the diagnosis which best fits my mental health experiences over the years, but diagnosing mental health problems is notoriously difficult, so I take it all with a pinch of salt. The combination of treatments gradually improved my mental state enormously, but amazingly, my physical state improved dramatically too, including my pain levels. By spring of this year, I sometimes felt pain free, which was possibly the most bizarre experience I had ever had. After over 10 years of chronic pain, the feeling of being pain free was so odd that I literally felt like some sensory input was missing from my brain. It was WONDERFUL, but really really weird. It took months for me to get used to it, and it has only been in the last month or so that I have stopped having a constant awareness of NOT being in pain. I still have some minor soreness in my joints some mornings, and vulnerable joints which sometimes cause me pain, particularly in my back, pelvis and neck, but I see a chiropractor and do stretching and exercise, and generally I manage it all with very minimal pain relief at all. I think some of it is likely the move to a warmer, less damp climate, but overall this is AMAZING, considering I spent around 10 years on strong opiates. I am so grateful that I never developed a mental addiction to them, as although I became very physically dependent on them, and had to detox off them several times (extremely unpleasant), I didn’t have to deal with the torture that is addiction.

So yes, here I am, possibly stronger than I have ever been physically, not in extreme amounts of pain, able to be so much of a more physically involved mother than I had ever been able to before, finally being able to start rebuilding my marriage, struggling mentally but vastly improved and much more stable than for instance, a year ago. I am considering the possibility of returning to work part time, which is something that I have wanted to do for years, but had never been able to because of both my physical and mental health. I am so overwhelmed by it all, and still find it hard to believe myself some of the time. Peter recently joked to me “so would you recommend psychosis and ECT as a treatment for chronic pain?!” and I had to laugh and say “I don’t think I would EVER have chosen to go through something as awful and terrifying as that, but I’m extremely grateful to have come out the other side with such positive effects”. In some ways I am scared to tell people about it, as I know so many people who live with chronic pain and disability who haven’t had the kinds of improvements that I have and may never do so, but at the same time I want to be open about my experiences and also tell people that there is hope even when there seems to be none. I don’t think we will ever fully understand what was wrong with me either physically or psychiatrically but I have my theories, especially given recent research findings suggesting that even mental health problems may have an immunological basis, meaning that autoimmunity (combined with the genetic connective tissue problems) could easily have been to blame for both my physical and mental problems. If you managed to get to the end of this ridiculously long essay, well done for your impressive persistence! I promise to write more about the mental health side of things at a later date, when it feels slightly less raw than it does even now.

Bye!

Jenn

Update overview, June 2015

•June 5, 2015 • 2 Comments

Hello people! I’ve been meaning to write an update for a very long time, but have been battling so much with the day to day that it’s just been too much to do so. Now that I’m finally experiencing some improvement, I’m going to try to put some of the last year and a bit down on paper. I haven’t posted much at all for 18 months now – briefly, I had a second psychotic episode in the autumn (fall) of 2013, which lasted 3 months or maybe even longer this time. I spent most of that time with Joseph in hospital in a mother and baby unit, then was discharged and spent three months in England living with good friends and recovering away from my family (Peter had taken Joseph back to the USA to let me rehabilitate) before I came back and joined them at the end of April 2014. I became extremely depressed after the psychosis resolved and spent most of 2014 in a fog of awfulness. In early 2015 I started ECT (electroconvulsive therapy), which combined with antidepressants has made life bearable again, although I continue to battle daily. The past 18 months have been extremely complex so I’m going to write this update in bite sized segments, I don’t think anyone will have the energy to read it all in one go! First a practical and slightly superficial update….

I am completely flabbergasted that I’ve now lived in America for over a year, it feels like I’ve only just arrived! The good thing about it being that long is that I finally feel like I’m adjusting and getting used to living here, like for instance finding my way around, adjusting to the culture and mostly fluently speaking American English, which is enormously different to the original version! I get a lot less utterly baffled looks during conversations nowadays which is nice, and my children now speak an amusing combination of the two, which can be very entertaining. Amelie and Maya sound 100% American, (despite still using some UK English words) which I feel a little sad about, but I guess it’s a reflection of them being well adjusted to being here. Joseph still sounds pretty English due to him spending the majority of his time with me. I do catch him saying things like “ready, set, go” and w, x, y and zee though, so I’m sure with him it’ll change soon, and I’ll probably feel a little sad. We are coming back to the UK for a visit in July and it will be fascinating to see what happens to the way they speak while we’re visiting. They’ll probably end up sounding Australian!

Life here is incredibly different from day to day life in England, in some ways much easier and in some ways much more difficult. There are things that I miss intensely about the UK – most importantly the people, but also some practical things like good quality sausages and bacon and crumpets! Some things however are much better about living here, it’s all swings and roundabouts. Peter and the girls miss England too, Amelie still cries about it sometimes and recently wrote a letter to her best friend from school in England which we posted C/O her old school. I so hope that she gets a reply!

Peter is doing incredibly well in his job(s), really flourishing, despite how difficult life has been overall (he’s pretty shattered unsurprisingly), and is starting a post-Masters Certificate at Yale University in September (I know!) so that he can finally be a Nurse Practitioner here. Although he worked as an NP for a few years in England, his UK qualification isn’t quite transferable as there are a few areas in his knowledge/experience that need to be filled in. He doesn’t need to do another full Master’s thank GOD. In general life we are making friends and feeling better knitted in to our community, and are slowly rebuilding our marriage after all the fallout of my illness/the lengthy separation, and all that he is going through with his mother’s illness. His mum (mom!), the main reason that we moved here continues to soldier on against very difficult circumstances. We’re all very grateful that she’s still with us and seems to still have some treatment options and good care at Yale New Haven Hospital’s (where Peter works his main job) excellent Smilow Cancer Centre(er). Peter’s Gran continues to be well and look bloody marvellous for her age (although she no longer feels it!). She delights in seeing Joseph and I every Thursday morning, and the girls and Peter whenever we can make it over. It is nice living close to extended family on both his mum and dad’s sides, particularly for the kids.

Amelie just turned 8 (eek!) and is her usual brilliant bubbly self, maturing and getting more interesting every year. She starts a new school in September because of the insanely broken up system of the (thankfully good) school district we live in – a different school every 2 years for ages! She thrives at school as she always has. She is so mature in some ways, and still so young in others – this tween stage is interesting.

Maya is very nearly 6, and is definitely improving in every way with every year that passes. She gives us a lot less reason to worry than she used to, although she still has a lot of trouble managing her emotions, as was dramatically demonstrated in Amato’s toy store this week, WOW. She has coped better than we could have hoped for with starting school this year and she and I are going to be spending a lot of time over these summer holidays working on her reading. We are hoping for a teacher next year who can work with her quirks and bring the best out in her. She also still gives the best snuggles ever.

Joseph is wonderful as always, although he’s had a rough couple of months – splitting open his chin, breaking his leg and then getting chicken pox when he still had his cast on, extending the amount of time he had to wear it for as he was too poxy to take to the outpatients clinic! I am SO grateful that he has finally had it removed and although wobbly is able to walk again, but despite it being hard work having to carry him around loads, after the first 3 days he has coped incredibly well with it. He has continued to be smiley and enjoyable to be around, moving with a hilarious bum-shuffle. I’m also revelling in the fact that his speech is really good for his age, the exact opposite to what was the case with both of the girls. It’s such a revolution to be able to have proper conversations with him, and for him to be able to clearly state his preferences and opinions – it’s led to so so many less tantrums and definitely means that of all our children at this age he’s by far the easiest to parent (although still very TWO, and hard work at times). This is a blessing considering how hard some other areas of life are.

I have slowly settled back into mothering the three of them all together, and although it is still incredibly tough there are more better days than there were. It is amazing how resilient children are, and astounds me how it is much quicker to rebuild a relationship with a child than with an adult even when you have been separated for quite lengthy periods of time. I’m grateful that the girls were at an age where they could have a pretty decent understanding of what was happening, and although they did used to ask if I was ever coming back, the wonders of Skype helped maintain those relationships. I’m not sure I will ever forget how vividly I remember arriving back and realising that Joseph didn’t recognise me whatsoever. It was totally heartbreaking, but three months separation is a long time when you’re only 11 months old. Luckily our relationship before he came back to the States with Peter was excellent despite the seriousness of my illness. Amazingly I managed to care for him all the way through my psychotic episode with relatively minimal assistance, I’m not quite sure how on earth I managed that. I do remember that it was astoundingly difficult! I am eternally grateful for the existence of mother and baby units in the NHS in the UK, so that I did have the support that I needed. Had I been in America I would have been completely separated from him and I’m sure it would have hugely affected him both in the short and long term and made my recovery much more difficult.

We have had several new additions to our family including a naked (sphynx) cat called Serena (Nina), two betta fish called Steve and Sophia, and currently 5 caterpillars which will soon become painted lady butterflies. For a self confessed (very much) non animal lover this is a pretty big deal, and I continue to be very ambivalent towards them all, although Nina has designated me “her human” (or fuman, as Maya would say), so won’t leave me alone. Joy.

So there are the basics! I am going to get into the nitty gritty of the mental health stuff in the next post. Thanks for still being around! Jenn

Highlights

•March 10, 2014 • 2 Comments

My friend Jonathan has just lent me a keyboard to attach to my iPad so I thought I would write a little update.
The last four months has been pretty horrendous to be honest! I had a major psychotic episode, and at the moment now have the horrible working diagnosis of having undifferentiated schizophrenia, although community mental health aren’t sure that’s what’s wrong. For my part I have no idea, although I do know I was completely bonkers for a while. I was very lucky to be admitted to the mother and baby unit in Nottingham, which was worlds apart from my experience last year in Manchester, with a very intuitive trusting team of people who I managed to form genuinely therapeutic relationships with which was brilliant. There were a few funny moments along the way too, the best of which was when I was in A&E and was asked if I was allergic to anything, whereupon I shouted like a drunk person “ONLY BULLSHIT!!!!”. That was pretty funny…. Now I just feel really sad, really embarrassed, and extremely de-skilled and low in confidence.
I made the difficult decision with Peter to send Joseph back to America to be with his sisters and around his Grandparents in what we hoped was everyone’s best interests, and to help me have the space to rehabilitate. That has been one of the most painful decisions of my life, and being separated from the whole family, but particularly my baby, is heart and gut-wrenching every single day.
When I first came out of hospital and made that decision I was still quite psychotic, and so filling my time seemed easy, it was novel seeing friends whom I had not expected to be able to see for some time, and I managed the first 3 weeks or so fine. After that it has become harder and harder, and to be honest I think that a combination of the drugs bringing me down and my circumstances are making me extremely depressed. It is back to being extremely difficult to get out of bed in the morning or to motivate myself to do anything. It’s probably at least another 5 or 6 weeks before I can go back to America (it’s a long story), and that feels like forever. Everything seems completely pointless, and the idea of going back to America like this is terrifying as I’d be no use to anyone. I am hoping that the (ridiculously overstretched so I get basically no input because I’m not threatening to harm myself) CMHT will put me on some antidepressants too, I can’t really go on like this.

So there we are, it’s a very brief overview of the last few months, but I just wanted to check in and say hi to everyone. Hope you’re all really well! Jenn

Intermission

•October 23, 2013 • 2 Comments

Joe & I are back in England! We’re settling in to our temporary home in the UK for a while and although I would have never chosen this it’s very nice to see my family again when I wasn’t expecting to see them until next summer! It’s going to be extremely odd living at their home for the first time in 13 years, wow…

The trip over went ok considering. It was a bit brutal, especially until we got on the plane, but thank God it was underbooked so Joe got his own seat and I actually got a whole row to sleep on, which I managed thanks to a very low dose sedative. Sometimes there’s a place for these things.

Peter dropped me off with my dad at Heathrow and we made our way back here, and it’s extremely surreal, partially because I’m sick and living with my parents half way across the world from my husband and daughters, and partially because my brain is so out of it I feel like I blinked and woke up in a different country. Strange strange times!

Health-wise I am fractionally better, possibly because I’ve been able to rest more today, maybe also because I’m not eating much (can’t), and breastfeeding much less (part time feeding from one side, long story!). I’m hallucinating less although it’s still happening. The breathlessness and balance problems are pretty terrible, the pain is significantly better. Overall I feel less like I’m about to imminently die and more like I’m just very very ill.

Joe is taking to mixed feeding like an absolute rock star, and I’m so grateful! Both the girls ended up being mixed fed due to flares of my health issues and both of them were a really nightmare to bottle feed, especially Amelie. It was Peter’s job and he HATED it because we both found how laborious it was really frustrating. Maya was a little better but slow, and amusing breastfed-baby-ish in that she would never ever take more than 3 or 4 oz at a feed. Joe? Well he’s a 6oz or however much you offer in about 5 mins kind of guy, brilliant! And he doesn’t care if you switch to a different bottle/teat, or whether it’s breastmilk or formula in the bottle. So incredibly helpful! So now I’m not feeding off the left side at all, and only feeding on the right side when I feel able to and only for short periods (feeding makes the hallucinations and breathing much worse). It’s a massive relief, and I’m proud of myself for being pretty laid back about it (I had hoped Joe would be able to not ever have any formula, but that’s just pride really, it’s not poison!). He’s having some formula, some milk from me, some milk I’m expressing, and I hope to perhaps source some donor milk for him too. Maybe at some point I’ll be able to go back to feeding him more, maybe I won’t. I’ve done the best I can with what I’ve got, what more can I do?

In a week or so I would LOVE some visitors. Come on, you know you want to, I live in the next road to the Cadbury’s factory now, sometimes you can smell the chocolate!

Grateful to not have snuffed it yet, and hoping to make a plan re. medical care tomorrow,

Thanks for all the messages, Jen ximage

Peter got me the best coffee mug EVER yesterday. I need a lot of coffee nowadaysimage

My boy looking cute and round just before we left yesterdayimage

Post-flight sleepy snuggles. A parcel arrived just before we left, apparently last week while high as a kite I bought another sling. This is a Beco Gemini, and I can only assume I bought it as you can use it forward facing and I expect there’ll be some wheelchair time for a while. When Maya was little and I had an episode like this I just used to attach her to me on the wheelchair with reins, it was less than safe!

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Looking like a goon but actually quite enjoying bottle feeding my boy. Glass bottles with silicone sleeves by Born Free, brilliant!!

A thin veil

•October 21, 2013 • 2 Comments

I come back to England this evening, well it’ll be tomorrow before we arrive. I’m pretty scared, but also pretty resigned. I still have awful physical symptoms, pretty severe psychiatric ones and feel like I’m about to die. I have no idea if that’s a delusion or a reality, but at least tomorrow I should know, which is a huge relief. I can’t wait to get on with a. dying b. getting some medical treatment or c. getting some psychiatric treatment. This limbo place is a living hell.

I am working hard on acceptance and surrender as it seems to make the physical symptoms slightly better and certainly overall makes everything a lot more manageable than when I am resisting. There are so many things I wish could be different, not least of which the devastating sadness I feel because on the last day I spend with my kids for a long time (possibly forever), I’m only well enough to grab snippets and moments of time with them. I am having to tell myself that we’ve had a lot of good time together, and hopefully will be able to again at some point, and that stressing about having to get “quality time” with them today is going to mean I miss out on any good bits that we could have. I have to say I hope that Peter and I have some time together on the plane because what with the practical management of all this I feel like I’ve barely talked to him in living memory. I can only begin to imagine what he’s feeling.

Along with last year this is most definitely the weirdest situation I’ve ever been in. Either because of physical or psychiatric changes I feel like the veil between this life and the next is very very thin, which fills me with joy and sadness at the same time. There’s been a lot of random laughter and crying, I’ve definitely regressed to a younger age emotionally, but in some ways there’s good in that. The girls are enjoying it anyway.

If I’m not able to post again, thank you for reading, and coming along with us on this crazy journey. If I was right about being physically ill, would you please come together to collectively spank the medical and psychiatric professions for how they treat people like me, and the three hospitals that discharged me while still ill last year could do with holding to account also. I have carefully documented this whole journey with photos etc. in case they’re needed. I hope it’s just a mad obsession and all a load of shit.

Thanks,

Jen xx

 

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Not very happy about this at all but these are the kind of situations that formula exists for. Fucking Similac though?! ARGH. Every time I breastfeed I end up having loads of hallucinations and seizure-type thingys though so needs must. Trying to source donor milk for when we’re back in the UK

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Joe is suitably unimpressed, but also a fabulously flexible baby thank God. And I’m hoping that probiotics (and better formula than that when we’re back in the UK) will help and that he’s not going to be horribly dairy intolerant like the girls :/

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Me last night. Not looking or feeling too hot!

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But hey trying to make the best of today

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Methinks this one speaks for itself 😉

 

 

 

 

I did not expect this

•October 20, 2013 • 9 Comments

I am getting sicker by the day, so severely that I need either medical or psychiatric treatment and 24hr care. I cannot get it here, as our insurance only covers emergencies and not pre-existing medical conditions until Peter has been in work for at least 30 days. It’s an odd feeling knowing that in England I would have been in hospital days ago, but I literally cannot go here, unless we want to be bankrupted. It’s an experience that’s very un-English, and in some ways I think it’s good for me to have experienced it, as terrifying as it is.

Thankfully we have two families supporting us now, so I am coming back to England. Tomorrow evening Peter, Joe & I are getting on a plane to London, where my parents will pick me up and help me to get the support I need, while I live with them in Birmingham for a while and convalesce. We’re realistic that the last time I got this bad it took months to get better. I’m just hoping I don’t miss Christmas again. Peter will fly back the same day to look after the girls, keep trying to work out the job/housing situation, and be a little removed from the situation as it’s incredibly hard to care for someone who is this ill when they’re your wife.

I still don’t think I’m mentally ill, I think I am in metabolic crisis, which is causing both physical and psychiatric symptoms, and that there are a few things that could be causing it. I think if I were to get a psychiatric diagnosis it would probably be ultradian bipolar. Along with all sorts of other things I am now hallucinating much of the time (small sensory/visual/auditory ones, I’m just ignoring them now). I will be taking diazepam for the flight.

Please pray, particularly practically that the airline would allocate us an extra seat, as it would help us hugely to be able to take Joe’s car seat on and have him sleep in it on the way over, and that I wouldn’t end up uncontrollably screaming again like is happening an awful lot at the moment (it’s an involuntary sensory sensitivity thing, we’ll be buying some noise-cancelling headphones on the way to the airport and I will be wearing sunglasses. I’m going to look like a proper nutter). Also there are huge practical things that need sorting out, particularly school for Amelie and some kind of nursery for Maya, and possibly an au pair or nanny to help with childcare once Peter starts work.Obviously the financial implications are pretty huge too. Most of all we’re all pretty devastated, we all just want to get on with life here, and yet again it’s interrupted. Whatever it is, living with this illness is awful. I think I am handling it better than last year though, every time these crises happen (and they have happened many many times before, since I was a child, they’re just much more severe nowadays), we learn more and more about how to handle them well, which hopefully means that the recovery will be quicker each time. I am surrendered, which is really helpful, I feel like I’m going to die, and I’m OK with that. It will be rubbish for my family if I do, but they would be ok. It would be much better for me than living like this. I don’t want to die though, I want to get better and come back and make another attempt at starting life here in the States. I’m grateful that I believe that I will be with God if I do die, I’m not scared at all of that, although the terror about living like this long term is very strong.

I will need to be left alone for a few weeks, but after that would really love visitors, it’s going to be horrific to be separated from my family, but I’m trying to see the positives and be glad I get to see some wonderful people again a lot sooner than planned, not least the Stacey’s baby Burt not long after he/she arrives!!

The girls and Peter went out today and bought me a build-a-bear rabbit. It has a recorded message in one hand that says “you’re the best mummy in the world, we love you!” and the other plays the StarWars theme (How very Keasty, any guesses who chose that one?). It is soft and lovely and has made me cry with happiness a few times today. Also I had a woven wrap sling set apart for Christmas from the money that my Gran gave me, and today in one of the small episodes where I could walk I wasn’t safe balance-wise to carry joe downstairs so I got it out and perfected a new carry (my brain is a mixture of completely non-functional and ridiculously acutely good at things at the moment!). Have wanted this sling for so long, I LOVE it! Yep I think an early Christmas present is in order….

Please keep encouraging me, it means so much to have contact from people in the midst of this. You guys are fab, Jen xx

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This is called Robin’s hip carry. The wrap is called Kokadi Amadeus Im Wunderland. It’s a size 5, which I’ve never used before, it works really well for me! (non babywearing folks feel free to turn off with boredom).

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These colours are a little more accurate

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This is Hippety Hop

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And this is my StarWars fanatic, who has finally gained the confidence to wear this t-shirt again after she was teased for it in England because it’s a “boy’s”t-shirt. Dammit. I have to shop in the boys section to get them angry birds t-shirts too. It’s well annoying!