A picture of your future, UK?

•April 29, 2017 • Leave a Comment

In regards to the upcoming United Kingdom General Election, there are some strong opinions being thrown around. The loudest one I’ve heard, is the many people who believe that there isn’t a viable opposition. The opinion is that even if voters hate Theresa May, effectively there’s no point in voting against her.

I beg to differ. I have no idea whether a certain other candidate could gather a functional party around him, but I wouldn’t be surprised if he managed it. Grassroots support is important, and he has a lot of that. I will vote for his party, whether he’s likely to win or not because he opposes privatization of the NHS (National Health Service) – the UK’s socialized healthcare system.

I was a user of the NHS for the first 31 years of my life, and a worker within the NHS for years, both as a HCA (CNA) and as a Registered Nurse. I love the NHS. I loved it for myself, as a person living with several different medical conditions; and as a nurse caring for patients in a very low income area. I liked that both myself and the NHS as a whole paid comparatively tiny amounts for medications compared to other places in the world – the nationalized system effectively makes it a buyer’s market for patients and their healthcare providers, rather than a free-for-all cash making machine for the pharmaceutical companies. I liked the fact that if you did need to seek care privately, that the existence of the NHS caused private healthcare providers to have to make their prices relatively competitive – I had a surgery privately once, and it cost a total of around 3000GBP (my American keyboard doesn’t have a pound sign and also autocorrects spellings to American English!). I like the fact that I didn’t have to ever turn anyone away as a nurse because my workplace didn’t take their insurance. I liked the fact that I didn’t have to comfort distraught people (or experience being that distraught person) who were facing overwhelming medical bills. I liked it A LOT.

I found it difficult also. Over-stretched and under-funded NHS departments failed me on several occasions, particularly in mental health services. Lack of continuity of care, and the absence of long-term access to counseling/therapy led to mental health symptoms regularly reaching crisis point. It also led to me being wrongly labeled as having multiple episodes of “reactive depression” rather than getting the correct diagnosis of Bipolar disorder that made sense if you pieced together my history and looked at the overall picture. It was necessary for me to have surgery outside the NHS, because that particular procedure was not being offered on the NHS at that time (although 3 years later I had the same surgery on the NHS – likely at that point it had been proven that it was value-for-money). Rationing meant that I never got more than 6 counseling/therapy sessions at one time, when I was trying to process childhood trauma and medical trauma. If I had stayed in the UK I would have been allocated 6 (possibly 12 with an extra application for funding) sessions of ECT and would likely be dead now. I knew of people who could not access the extremely expensive new drugs for their medical conditions as they weren’t available through the NHS, or weren’t recommended by NICE for treatment for that particular indication. It’s not some kind of utopian system.

The system here is different. My husband is American, and for the last three years we’ve been living in the North-East (read: one of the most ridiculously expensive areas) of the USA. It’s not perhaps where I would choose to live, but it does have some advantages over the UK, particularly when it comes to healthcare. In this country, IF and when I have had the right insurance, I have been able to access some healthcare that has been critical to me being able to recover physically and mentally enough to be able to work again, parent my children better, and overall not live a miserable life. The two most important of these were long-term therapy, and LOTS of ECT. 30 sessions to be specific. It is no exaggeration to say that these things saved my life.

However, in this country, before the Affordable Healthcare Act (and sometimes in spite of it), due to healthcare costs:

  • People have been forced to abandon their families and move back overseas in order to get the healthcare required because of being uninsurable due to pre-existing medical conditions (yes, this was me – 6 months apart from my husband, 4yr old and 6yr old. 3 months separated from my baby, who was 11 months old when Peter brought him back over here).
  • People have gone bankrupt.
  • People have had to choose to get divorced in order to not lose their houses, or pretend not to be married in order to get the healthcare and support needed to deal with disabilities.
  • People have had to choose treatment options based on cost, rather than on their relative merits.
  • People have had to ration their medications (including those for life-threatening or very painful conditions), because the co-pays are so high.
  • People wait until their symptoms become severe before seeking assessment and treatment.
  • People die.

The Affordable Care Act has improved this, but not for everyone. Those I am particularly thinking of are several friends who are small business owners, and who despite having a good income and good standard of living, still find it prohibitively expensive to afford health insurance. They live at risk of bankruptcy constantly. Outside of people with medical backgrounds, it’s not well understood quite how expensive medical treatment is, which makes the incentive to take out an expensive policy that you have no plan on using (if you’re lucky enough to be a healthy family) is very low. I sometimes wish I could show people an invoice from 1 day of an ICU stay in the US, or the overall bill from my ECT (around $85000/70000-ishGBP).

Even with good insurance, the treatment (particularly non-emergency) you can choose from is very much limited by your income and ability to pay co-pays/co-insurance (the parts of the bill that you are still responsible for even after paying your health insurance premiums). The year that I had ECT, our overall health costs were probably $13000. This felt crippling. That year we had good insurance, so for my ECT bill we paid around $5000 of it out of pocket. This time last year we made a decision for my husband to leave clinical work due to it interfering severely with family life (his shifts somehow fell in a way that meant the kids didn’t see him for 6 entire days), and to take on a “9-5” job. We hadn’t had any experience of having a less than top of the range insurance (We had a great Anthem Blue Cross Blue Shield policy because my husband worked for Yale New Haven Health). The new job came with health benefits, so we figured we would be ok. We were not. The new insurance cost more than twice what our old insurance cost, and covered a fraction of what the other one did. It changed co-pays on medications from $6-$30/month to $20-350/month (in fact I currently have just a discount card and no prescription insurance, and the medications are CHEAPER than on the plan we paid for). It changed therapy appointments from $30 co-pays to $93.53 copays PER SESSION (for most of us – Maya’s appointments were a $156 co-pay because she sees a more senior therapist). It caused me to end up with a $1000 bill for two physiotherapy (physical therapy) appointments. It caused me to not seek treatment for many symptoms because I simply couldn’t afford it. It means that several significant health issues have not been addressed which should have been. These costs are in spite of us getting much of our healthcare at “not for profit” institutions.

Our full outgoings medically for 2016 were $33914.72, broken up as follows:

Insurance premiums  $15,226.77
Payments to FSA/HSA (for prescriptions and appointments) $7,340.53
Extra medication costs not covered by HSA/FSA $3602.12
Debt payments from medical debt carried over from 2015 $3,016
Appointment/procedure/treatment costs not covered by HSA/FSA  $4,729.30
(HSAs and FSAs are tax-free plans which you can pay in to for medical expenses)

 

Our overall combined income for 2016 was around $90000 gross, which seems like a huge amount, but those medical bills are a full 1/3rd of this gross income, therefore much more than that when you figure in us paying regular tax! We also live in a state where houses are expensive and property/car taxes are very high. We have to pay for full time childcare for the little boy (kids start school a year later here, so we have another 18m of this, and part time for the girls. We should have got a large tax return because of our healthcare bills accounting for more than 1/3 of our gross income, but because we sold our UK house (mainly because we couldn’t afford our medical bills even with the good insurance), we got taxed on the profit (they don’t care if it went paying off medical bills or not!), we actually ended up with a $15500 tax bill, which has taken the very last of our savings and now means that we can’t use that to pay off the bills we incurred from the point in June when we had managed to get back to $0 outstanding debt up until December.

This year, we’ve been even more unlucky with medical bills. Five out of the five of us have had a trip to the ER (A&E) this year. Each of the first two cost $3000 out of pocket, the third cost $833, the fourth we haven’t received theand the fourth was my 3 day stay in hospital, which included a CT with contrast, echo and gastroscopy. I am dreading the bill for this, it could be 10s of thousands of dollars. Even without all of the bills arriving yet, we’re over $20000 of healthcare costs IN THE FIRST FOUR MONTHS OF THE YEAR. We have not earned this much yet this year!. If we could both work full time we could cope, and have a plan to pay back this debt –  RNs get paid well in this country, but we can’t. I’ve been getting sicker just working the 2-3 days a week which I current do. It’s such a hard dilemma – if I don’t work, Peter gets sick working too many hours to try to support us and pay the debt (the kids also don’t see him, and I might go mad with boredom and lack of mental stimulation). If I do work, I’m getting sicker and incurring more medical bills. I’m so far from being alone in this, and we’re in such a better situation than so many people. At least at the moment we have enough credit to not lose our house. But it’s hard, and it breeds resentment in me, because not everyone has to deal with this, and the reason that we need to is because the healthcare system here is based on unbridled and unregulated greed. My husband’s trip to the ER was simple – he went for severe abdo pain, had some basic investigations, fluids and painkillers. He was there for a few hours. the bill was $4500 total. WHAT.THE.FUCK. I remember reading a while back about the cost of a trip to A&E in England. I think it was around 300GBP. There is no excuse for that disparity. It is greed, pure, pure greed, exploiting people who cannot live without the care. It appears that hospitals are allowed to charge anything that they want to for people’s care. Another couple of horrible examples of this are the $700ish bill we received for an AP & lateral (front-to-back, and side views)  chest x-ray for Amelie when she was being investigated before we knew she had glandular fever (mono), and the $537 bill we received for blood tests for the same issue. Those are the without insurance costs, thankfully these came down to around $300 after insurance, which is still absurd.

I would be happy to pay for my healthcare, if it was charged at a reasonable rate. I earn more here than in England, I would be able to pay medical bills. But not these. Here, we feel like we are drowning. I feel like money runs through my fingers like water. Our income is enormous, our outgoings are bigger. And it’s hard not to go down this route of thinking – that with this money that I give to line the pockets of insurance companies and high up management in healthcare, I could have started saving for retirement, or for my kids’ college fees. I could pay for the post-grad study which I may never be able to do due to debt, or we could have come out of last year with some savings remaining, not in at least $20000 extra debt (much of it on credit cards, leaving us even more vulnerable financially, and some that is still outstanding and we haven’t got the details of yet). We could have the possibility of moving out of our tiny house, which would help my mental health a huge amount (I’m very aware that I live with huge privilege and that these are very much first world problems!). I love giving, and could give SO much more, and  I could live with less fear of going bankrupt if I get sicker again and am not able to work.

It scares me that the UK is going down the route of privatization, because it will be great at first. There will be posher/fancier buildings, there will maybe be better care. Then the private providers will increase their costs, and the NHS will no longer have the infrastructure to return to providing the services themselves. You will be trapped, and will be at the mercy of people who can charge exactly what they want for services, and you will have to pay, even if it means that you lose everything. You may need healthcare that you cannot afford. You may have to choose between co-pays and basic day-to-day needs. You may die because you couldn’t get care.

So I’m not here to convince you to vote for any particular candidate, but I am here to paint a picture of my experience as a chronically sick person and healthcare worker in both systems, and to ask you to consider it very carefully before you vote for a party who is committed to a plan of privatization of the NHS. It puts your future and your children’s future at risk. Now excuse me, I have to go and work my job helping sick people to get better, and hoping that working this job doesn’t make me sicker.

“Work challenged”

•March 10, 2017 • Leave a Comment

I passed my NCLEX-RN (National Council of State Boards of Nursing Examination – Registered Nurse) this time last March – it’s nearly a year to the day. The NCLEX is the registration exam which is required to practice as a Nurse in the USA.  I can only begin to describe what this achievement meant to me, and to my family. Not only is it a pretty tough exam, but studying with three kids and a husband who does crazy shift-work hours, along with managing physical and mental health problems has been an extremely difficult balancing act. Now that I’ve passed and have been working for a year, I’m looking back on the last 18 months and wondering how I managed to do it all. It’s certainly been the most grueling year of my life, although thankfully not the most difficult overall – it’s still wonderful being mentally pretty stable.

When I first passed the exam, I hit my next wall of dealing with the anxiety of trying to find a job that had all of the necessary requirements for myself and my family. It had to pay well, as Peter has sacrificed a lot of salary for being able to do a greater share of the childcare to release me to work, and to generally be around more. It had to be part time and physically not too demanding so it wasn’t impossible given my finite physical/mental capacities. It needed to be mentally stimulating enough to not mean that I end up depressed because I know I am capable of more, yet not so stressful that it triggers a serious mental health episode. It needed to allow me to ease back into nursing slowly, accounting for continuing to re-learn the parts of my nursing knowledge which were erased by ECT, and the differences between US & UK nursing. We were dependent on finding childcare for Joseph, and the job needed to either be very flexible hours, or to not start until September as the kids all get 10 weeks summer holidays (but financially September would have been WAY too late). Finally it needed to be an organization who would interview me despite not having worked for 9 years, and who would be flexible with references. Not much to ask then! Basically, I was looking for a rainbow unicorn of a job, a bit like this:

different

(drawn for me by Amelie at the age of 5, and the source of the name of this blog – https://differentblogdotme.wordpress.com/2012/12/23/why-different/)

The problem is that rainbow unicorns don’t exist, according to everyone:

rainbow-unicorn-cute-unicorns_that_like_rainbows_by_kiwi24-d2xesro

Probably the biggest awareness that I had alongside the practical requirements that the job needed to have, was just how enormous my anxiety around work was. Primarily I was anxious that I would not be able to get back in to work, or if I did that I wouldn’t be able to remain in it (either through not being able to cope pain-wise, or that working would trigger a manic or depressive episode). Alongside this was the fear of what that disappointment could do to me psychologically if I took the risk and tried. I was worried that if I failed I would have let myself and my family down and would have wasted huge amounts of time and money. I felt like I would struggle to sell myself in interview, not because I didn’t believe that I would have good things to offer to an employer, but because I didn’t know if I would be able to follow through on those things.Being out of work for 9 years affected my confidence dramatically, and although I had regained a nursing license, and therefore my overall knowledge had been assessed as adequate for nursing work, my practical clinical skills needed a lot of work before I would feel confident again. I was also in a difficult place for references, as it had been too long since my last jobs to get references from them, and I also lost both jobs due to disability – one because of my physical health, and one because of my mental health. Along with all of those practical considerations, I was mentally so daunted about going back to work because of the ongoing symptoms from chronic pain & fatigue (Ehlers-Danlos syndrome and fibromyalgia), bipolar disorder & PTSD. Every single one of these issues can be work-limiting, and the combination of them all is pretty overwhelming. I have a much more limited number of spoons than an average person (if this doesn’t make sense to you see: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) which means that balance in work/family life is even harder than it usually is.

When I passed the pre-NCLEX exam back in November 2015, I went to a local pub with Peter for a very rare night out together, and we talked through these anxieties. I wasn’t really able to celebrate that I’d passed the CGFNS (Commission on Graduates of Foreign Nursing Schools) exam, or be that excited about the future, as I felt so beaten up by life and daunted by the future. He said something that felt really weird and annoying at the time but that in retrospect was so helpful – he said something like: “Jenn, it is ok to try and fail” or “you do have permission to fail”. Failure in our culture is such a taboo, and having felt like I’ve failed career-wise up to this point has haunted me for a decade. I’ve  watched it get harder and harder for Peter to earn enough money for us to afford to live and pay healthcare bills, but I worried that if I tried to take a part of that and then wasn’t able to continue, that it would affect our relationship really negatively.

My final area of struggle was concern about the fallout that could come from me going back to work. In a very real way I have been concerned that people will look at me and say “if she can do it, then why can’t that person with the same/similar issues”. Or “if she can do it now, why couldn’t she do it years ago”. I want to stress that it’s important not to underestimate what had to fall into place to enable this to happen:

  • I needed the courage to try, despite there being no guarantee of succeeding.
  • I needed support from my husband – including his encouragement to try, even if it could possibly lead to failure.
  • I needed the correct support from doctors, including some dramatic treatments like enough ECT to finally make it out of depression for the first time in my adult life.
  • I needed the support and time to rehabilitate my brain, particularly my memory, from the damage that is caused by the brutality of those treatments.
  • I needed, and will continue to need ongoing care – psychiatric to ensure that I’m on the right medications which allow me to remain stable with side effects which don’t completely interfere with my ability to work, and pain management & general medical to manage the physical symptoms. My doctor-related PTSD makes this hard.
  • I needed, and continue to need good quality long term therapy/counseling input, which requires more than just the 6-12 sessions you get on the NHS. In the USA I’m able to access that without crippling financial consequences, and therefore for the first time in my life I’ve had the opportunity to build genuine therapeutic relationships with practitioners.
  • I needed a great chiropractor, as the EDS symptoms mean that without regular chiropractic care, I have much much lower functionality.
  • I needed a gym which had childcare, as I needed to be able to rehabilitate myself physically, and then to stay fit and active in order to be healthy physically and mentally. In England, the only place I could access that was a particularly expensive and exclusive gym, which was so far from my house that it was very limiting. Here, the local reasonably-priced YMCA provides free childcare while you work out – amazing!
  • Still on the subject of physical rehabilitation, I needed to be non-depressed enough to be able to motivate myself to exercise, and to deal with the initial increases in pain that it brought. Linked to this is that I then needed the flexibility and self-control  to adequately rest to enable me to have the energy to fulfill all of my other responsibilities despite the post-exertional malaise that fibromyalgia causes (it’s easier to push through, but it eventually leads to extreme pain and fatigue which it’s hard to recover from, but pacing is a hard lesson to learn when you’re naturally very Type A).
  • I needed insurance good enough to pay for that ECT, medical care, and therapy – the ECT cost as much as a small house (In the UK I would have been allowed 6 sessions. If there had been extra funding applied for I might have got 12 – here I had 30 sessions of ECT!), and credit good enough to borrow the money we needed to pay our out of pocket expenses for this (Paying off this debt was one of the biggest factors which meant that we needed to sell our UK house).
  • The final (and possibly most important) thing I needed, which wouldn’t have been possible in the UK, was to not have the DWP (department for work and pensions – in charge of governmental disability support) breathing down my neck and looking to take away any kind of disability support the moment I started to have improvements in my mental and physical health. I cannot state enough how awful it is to exist within that system – the one which determines your eligibility for support by assessing what you “can” or “can’t” do, with little to no acknowledgement of invisible illnesses or allowance for fluctuation in symptoms. The system which knows (or cares) so little about the reality of living with disabilities, that they give no flexibility to slowly rehabilitate from severe episodes of illness, and then structure the hoops you have to jump through to get their support in a way that many people genuinely cannot access them. Added in with these difficulties, the political leadership of the UK currently is extremely cruel to people with disabilities and health problems (in fact anyone who is at all vulnerable and struggle to advocate for themselves), and the mainstream media seems to constantly be reporting on these groups as being “scroungers” or “work-shy”. It makes you start to question your own sanity, and whether really there is something deep in your psyche that makes you not want to work, or to contribute to society (which in itself is a vile concept – that you can only contribute to society if you work). The resulting impact on stress levels and the snowballing effect that this has on your ability to manage your chronic conditions, including increased pain and worsening mental health should not be underestimated. It’s a form of societal torture.

So this is it: I am work-challenged. It makes things very, very difficult, but I’m now sitting here having worked for a year, and I’ve not become severely mentally ill. I’ve experienced fluctuations in my physical symptoms, including several very bad flares, but have not missed any work because of them (I’m not working full time, or I definitely would have done). I’m spending this week between jobs resting, exercising and trying to regroup mentally in preparation for starting my new job next week. I’m both excited and very nervous, and it feels like it’s my first legitimate job in a decade, since I got it based solely on my experience, my interview and my excellent references from the job I’ve been doing for the last year. It was nice to read through the job description and agree that I could without any exaggeration say that I believed I could fulfill the requirements of the role.

I’m hoping that the next year brings a little more stability to our family through Peter and myself having more family-friendly jobs, and us getting good health insurance back (we’re back in huge amounts of health debt due to having had very poor insurance for the last year). I’m just glad to actually have a job, and I’m finally feeling less crazy mentally as I know that there was never anything in me that was lazy and didn’t want to work, the circumstances simply didn’t allow it. In fact, I love working. I think I’m actually a better mum now than I was as a (very impaired) stay-at-home mum. As one of my heroines Ruth Bader Ginsburg said when she spoke about her career, having her kids gave her a break from her work outside of the home, and her work gave her a break from her kids. It’s a privileged place to be. Looking forward, I’d like to push things a little further and try to do postgraduate study when Joe goes to school in 18m. This is a terrifying but exciting option. It will be fascinating to see where we are next March.

It could have been him

•August 15, 2016 • 2 Comments

As I’m writing this today I’m still shaking internally with those awful thoughts of “what if….”

Yesterday I did something that could have killed my child.

On Saturday I was working and my husband had the kids, and as I walked into a patient’s room both of us stopped short at the same time as we listened to the news on her TV. The story was of yet another parent who had forgotten to drop their child off at daycare, and therefore had left their child in the car for the whole working day. The child had not survived the heat – apparently temperatures in that car had reached over 140 degrees farenheit, equivalent to 60 degrees celcius. I felt sick to my stomach.

The extra trauma that a parent/parents who this happens to (and I say “who this happens to” instead of “who do this”, because this isn’t something a parent even dreams of ever doing), is that hundreds of keyboard warrior trolls flood their newspage article pages with comments displaying vitriolic levels of hate and contempt for these parents. The comment things along these lines: “I can’t BELIEVE anyone could ever DO that” “I would NEVER do this” “I’m a GOOD parent, this happening shows that they are a BAD parent”. It makes me want to puke.

Maybe years ago I might have judged these parents a little, though I’ve never thought that attacking grieving parents with judgemental words would be acceptable. But I’m a realist – life is crazy, especially when you end up moving on from one kid to two, three or more, and you have a million things to remember as a parent. Once, when Maya was a baby, I left her in the car briefly by accident when we got home because Amelie instantly had a meltdown when we got inside the house. Thankfully it was winter/spring/autumn/nowhere near the one week of hot weather we get in the summer in England. I’d have been more concerned about her getting cold or hungry than ending up dead. That incident though has meant that I’m more open to the possibility of doing this by accident. The change of climate is a huge factor though – since we got to the USA I’ve been much more aware. I try to never leave the cars unlocked on the driveway unless all four windows are down, and I warn my kids about never playing in the cars unless I’m with them. It’s even more important for me to be careful because of having ECT-related memory problems.

Despite being aware, and despite trying to be careful, and despite having been a parent for 9.5 years, yesterday it still happened – I left Joe in the car (3.5yrs), in 100 degree farenheit/38 degree celcius weather, with all of the windows up. We had been at Peter’s dad’s house for the kids’ cousins’ birthday party. He and I had had an argument just before we both left the party, and we had both cars there as we hadn’t arrived together. I got all of the kids in the big car and drove home, which is basically right around the corner. The kids had been fighting in the car and I’d said that they could watch TV when we got home if they all agreed on which programme. They found something that they could agree on. I was distracted and exhausted. We got home, and I took all of the bags from the front seat inside (I always do that first as a throwback from when Joe was smaller and I needed to field him from ending up in the road the moment he got out). I heard the girls come past and thought I heard his voice with them. He’s at the age where he’s less dangerous so I no longer need to know his exact whereabouts at every moment, and apparently this has made me complacent. I listened to the TV go on as I started to sort through all of the swimming gear and I assumed that all three of them were watching. I started to make dinner, and do various little jobs which needed doing.

About 10 minutes later I was down in the basement doing washing, when I heard my eldest upstairs start to say “Joe’s sleeping….no Joe’s on his tablet….NO I THINK JOE’S IN THE CAR. MOM I THINK JOE’S IN THE CAR!!!!!!”. We both ran out there, to find all of the doors closed, and Joe crying, strapped in tightly to his car seat, with sweat pouring down his face. It had certainly been less than 15 minutes, the car was slightly in shade, it was 5.30pm instead of the middle of the day, and the car had been left with its windows down for the entire time at the party. It had also been in the shade for at least an hour before we left the other house, and had the windows down on our journey home. More importantly though, the external temperature gauge in the car still said 94 degrees farenheit (35 degrees celcius) temperature, and it was hotter inside that car. If all of the above factors cooling for down the car hadn’t been in play it would have been vastly hotter in there.

If it had been another 15mins that might have been it for Joe. If it had been another hour the “might” turns to a “probably”. We’ll never know. What I do know is that I held him for a long time sitting on the grass next to the car, trying to get him to drink, being grateful that my negligence hadn’t killed him. Also feeling incredibly thankful that my daughter is so passionate (to the extent of being slightly pathological) about safety, and that she is so aware of her little brother’s whereabouts – I wouldn’t necessarily expect that from a kid her age. As I put him to bed last night I thought that we could so easily have been like those parents in Texas. This morning I was being asked by my little boy to make different instrument noises during breakfast, and listening to him giggle at my dreadful attempts. They got up this morning to face another day preparing to bury their child, and trying to work out how they can live with the guilt of what happened to him.

If it could happen to me, it could happen to you. My leaving doors open as a visual reminder to make me remember to make sure that no-one was left in there failed dismally for many reasons. I didn’t check; the girls closed the door without letting him out (they don’t usually do this, in fact they usually free him from his car seat and climb out together on the drive); and there is a storage pod and our camper currently blocking the line of sight from the house to the car. My safety precautions were nowhere near enough. Amelie was so upset with herself for shutting the door, but I kept telling her that it wasn’t her fault. This was my responsibility. My child. My oversight. The more important thing for her to remember is that she possibly saved his life.

A generation ago this would have been a local tragedy. But because of modern media spreading these stories quickly across the globe, there is growing awareness of this risk. People are starting to create apps like this: http://www.kars4kids.org/safety-app/. If you don’t like or can’t afford high-tech, there are things you can easily do which are still extremely effective, like leaving your phone/wallet next to the baby’s car seats so that you can’t ever forget to take your littlest one(s) with you.

As much as I’m embarrassed to admit that I did this, I’m writing about it in the hope that our close call might make even one person take a little more care instead of assuming that this will never happen to them. However careful you are, if the circumstances are right, it could be you. Especially in hot climates you can’t be too careful. Judging parents in these situations just adds to the extraordinary suffering that they are already experiencing, and I expect that more people have these close calls than ever admit to it. In the meantime this mama is just grateful to still have my baby.

IMG_3060

 

I am done.

•June 15, 2016 • 4 Comments

Dear world,

I am done. I am so so done. I am done with being associated with people who are mostly filled with hate and judgement. I am done with feeling the deafening roar of silence in the face of violence, because either they feel like violence is more justified due to the victims’ “lifestyles”, or that we should accept horrific things happening to us because “we deserve so much worse”. I am tired of platitudes, and Sunday morning faith, of lack of community, of there not being true transparency between people of faith because there is so much judgement, that we are scared to show our true selves. I am tired of hearing of scandals involving leadership of churches, and tired of hearing of people who are advised by their spiritual leaders to forgive and reconcile with their abusers, and then ending up further victimized, or sometimes dead. I am tired of hearing about the awful turmoil affecting LGBTQ youth in Christian or other faith environments, and reading the stats on their suicide rates. I am tired of hearing justification after justification of hate in the name of religion, and particularly in the name of Christ. I am tired of right wing religious people creating a false issue – smoke and mirrors around transgender people’s use of bathrooms, of them inferring that all trans people are depraved pedophiles out to get our children. I am tired of hearing the true stories of abuse of children and vulnerable adults, and seeing time and time again that the perpetrator is ::usually:: an entitled power-hungry white man in a position of authority (not in any way suggesting that this is the only group of people who abuse, but the people who are trying to legislate agains trans people are totally blind to the fact that many if not most abusers look more like them than they do a person who has transitioned) I am tired of racial divides, and of seeing people of color in prison for possessing ::sometimes for life:: for possessing a bag of weed (the mandatory life sentence for a third offence in some situations), while a convicted white rich rapist gets a few months in protected custody. I am tired of hearing right wing political propaganda preached in the church, and of people aligning themselves to a nation who are committing apartheid because they have some kind of theological belief that a massive spiritual/political end times is coming, and that somehow that trumps compassion and human rights for marginalized groups. I am tired of being considered a lesser human being because I am a woman, because I have mental health problems, because I live with chronic pain and have to take opiates. I am tired of seeing and experiencing being part of a “justice” system that is a million times stacked in the favor of abusers in every nation.

Following the awful atrocities committed in Orlando this weekend. I am done with being part of groups of Christian women who debate all the things which one should be afraid of getting involved in, lest they somehow contaminate us or our children spiritually , but who are happy to ignore marginalized groups of people who are right on their doorsteps. BECAUSE THEY ARE MARGINALIZED BY THE CHURCH. I am done with seeing what happened in that group on Sunday – that a thread on how to deal with being attracted to someone other than your spouse (not a bad thing to debate, I’m happy to be a part of that) got constant attention, yet when someone finally posted about the Orlando killings, there was a shockingly low level of sorrow shown about the events, and even less compassion shown to the victims and their families, just that deafening silence. I would have thought that perhaps it was because of it being Sunday, and therefore people being busy spending time with their families – after all, I didn’t even head about Orlando until mid afternoon because I was in bed sick, and then spending time with my kids and husband. I wanted so hard to believe that this was why, but then there was that other thread, which told me the opposite. I wanted to believe that the lack of my Christian friends and acquaintances condemning that violence was due to them having a policy about not posting about these things, but I remember, I remember one of the last high profile mass shootings, and seeing them debating gun control and utterly condemning the violence, because the victims were “nice” Christian people (although I also saw racist bastards condoning this violence because of the color of the victim’s skin).

I am tired of being mainly silent about issues of my childhood, because it might cause distress to other people (respect for other survivors of this issue is the only reason why I have stayed silent to this point – I have not wanted to rip the scabs off people’s wounds when they are not ready). Tired of feeling like I live with a piece of duct tape over my mouth. Tired of feeling like I’m seeing a church’s reputation being held up as more important that the acknowledgement of deep evil committed, and a humble desire to support or at least validate the worth and suffering of those involved. Of instead every year finding more women who were hurt in the same situation and finding my survival methods stripped away because I can no longer tell my psyche that it is not real, that somehow I made it up for attention. I am tired of not finding a safe place in the church (different churches) to work through my issues. I am tired of people speaking instead of listening. I am tired. I am tired of never finding any kind of mentor – someone who has walked through their suffering with integrity, and not repressed their pain and called it Godliness. I am tired of not knowing if I am a Christian anymore, and of the fact that living on the fringes of the church, especially now living in America, has made me more and more feel like I do not want to be associated with this God who they say they serve, because he is not the God that I see in the bible, or that I believed in for so many years. I am tired of utter certainty being preached, instead of an acknowledgement that we all interpret what we read through our biases, and choose which bits we feel that ourselves should live by, and that we feel others should live by also. I’m tired of people trying to combine Church/Islam/others with the State, and trying to legislate others’ behavior – but only the ones which bother us personally/affect our finances/offend our sensibilities.

I am tired.

I don’t know if I am a Christian anymore. I am angry, I am hurt, and I am confused. And I do not see in most of the church a safe place to be that – to work through that stage of grief. I am finally starting to be in touch with 30 years of repressed anger, and most Christians would try to argue me out of that, not understanding that if their God exists, he’s at least as angry about these issues as I am.

But I am also grateful. I am grateful that I have a husband who accepts my anger, even if it’s difficult for him and my kids when it spills over onto them. I am grateful to have just a few friends who listen more than they speak, and when they do speak they do it with grace and a lack of ego. I am grateful for seeing the outpourings of love to the victims of the recent shootings, and the brave and fierce woman who stood up to that young man in court even as he showed no remorse, and was basically let free by a judge who shared his fraternity and was impressed by his swimming times – telling her that the safety of this young man was far more important than hers, or any other women whom he may come across – of the extreme anger poured forth rightly from many people all over the world, at that injustice. I am grateful for people of all faiths and no faith coming together to condemn what is wrong, and focus on what is good. And I am grateful that there are things that have improved for our generation in this, despite all of the dogma which says that the world is getting progressively more awful. I am grateful to still be alive, and to be able to hold space for others in their suffering as some have held space for me.

This is very much a stream of consciousness, typed in a stolen 45 minutes on the first day of my children’s school holiday, and I don’t know if I will go through and edit later. I am aware that I may get negative responses to this, and I honestly don’t care. I’m all about the constructive criticism, but if there is judgement without listening, platitudes or hate, frankly people can fuck off. But overall I am hoping that I and this blog can continue to be a place where people can be honest, and hear back from others that you are not alone, you are accepted, you are loved. Because if Jesus existed I know that’s where he would start, not by highlighting every way that we are failing to meet perfection as we walk through life.

So today I will keep breathing, and hope that tomorrow I wake up less exhausted and more able to continue to love.

Jenn, xx

Looking forward

•January 3, 2016 • Leave a Comment

It’s the new year. And like everyone else I’m looking back over the last one, looking forward towards this one, and generally taking stock. 2015 was interesting. It was pretty extreme in some ways, starting at a point of severe depression, enduring eight long months of regular ECT treatments to climb out of that depression, dealing with two episodes of hypomania, and the day to day challenges of managing a severe mental illness. It also included being physically well enough during the first half of the year to get properly fit for the first time in years, and the 19lb weight loss (losing some of the absurd gain from taking antipsychotics combined with misery eating) which came from that. There were 3 months or so of wonderful crossover between good mental health and good physical health, and I and therefore my whole family were able to enjoy things that we had never been able to do as a family before. Then in the Autumn I faced a return of physical symptoms which had been mostly absent for a while, and had the mental challenge of coping with that return and the loss of those previous gains. I also managed to acquire a new back injury, whilst swimming, of all things. This change in physical symptoms landed me with a brief stint back on antipsychotics (mainly because of the challenge of accessing adequate care and pain relief, meaning that five weeks into the flare I was literally losing my mind trying to cope with the pain and life with very little support), leading to a 14llb weight gain in one single month. I then gained a few more pounds from using eating as a method to cope with the combination of stress from pain and fatigue, studying for an exam, and the holiday season which is so much more intense in this country than it is in England! I enter the new year only 2lb lighter than I was this time last year. At least I’m not heavier I guess.

Back to that exam – I passed! I took the CGFNS nursing knowledge exam for nurses who have qualified outside the US to prove that their knowledge is adequate to be considered eligible to take the NCLEX exam – the general nursing boards/registration exam. The few weeks leading up to the test are a blur of severe pain, and I actually only had adequate pain relief prescribed by the Yale Advanced Diagnostic Pain Treatment Center (a brilliant place!) the day AFTER the exam. It’s a bit of a miracle that I passed! Getting permission to test for the NCLEX has been much easier than getting permission to test for the CGFNS, so I’m scheduled to take that on the 13th February. I am taking a Hurst course this coming week (three very long full days, it’s going to be a massive change of pace!) which I’m hoping will give me the knowledge needed to direct my NCLEX study, because I’ve done literally nothing for it yet!

This brings me to my biggest challenge of 2016. Managing my return to work. I haven’t worked for nearly 9 years now, mostly due to poor mental or physical health, often both. I’ve also been a stay-at-home mum (I HATE that name!), but before Amelie was born we always planned for me to work part time from when she was about 7 months old). Returning to work is an enormous source of anxiety for me, which I think is understandable given the circumstances! It’s also really exciting, as I’m sure if I can physically and mentally cope with it that I’ll love working part time. It’s been such a frustration to me to never be able to truly use the knowledge that I gained in my training, and really do what I wanted to do. Hopefully this year that may happen. I’m going to write more about work challenges for people with chronic health problems in the next few weeks.

In the rest of my life, I hope to continue to rebuild my marriage and my relationships with my children even more, although we are at a much much better place than we were this time last year. I also want to continue to develop relationships with family and friends here (again massive gains on last year, but still hard not having the kind of long term deep relationships that we had in the UK), and continue to make efforts to keep relationships from the UK alive via various technological means! I want to further explore my faith and the challenges that I have experienced with that, and my overall beliefs about life and the world which are still fragile following the earthquake that is truly losing one’s mind. I also plan on addressing my use of eating as a coping mechanism, and trying to lose weight again, despite it being likely to be harder this time, not being able to do high impact cardio.

This year I’m also going to try to write in detail about my experience with psychosis, the times leading up to each time that it happened, and about rebuilding life following an episode. I’m also going to try to write about suicide, as it’s something that isn’t widely discussed, and that I have come very close to on several occasions. All in all I’m going to try to be open about my struggles in the hope that it will help others who have experienced similar things and possibly felt as alone as I have done in the middle of it.

I very much hope that 2016 will be a great year for my family and I, and I hope that if you’re reading this, that it will be the same for you.

 

Resources for further reading

•January 2, 2016 • Leave a Comment

I have two Pinterest mental health related sites, because it’s the best way I’ve found to consolidate groups of articles for future reference. There’s some absolutely brilliant stuff on there, and I’m hoping that it might be useful for people who are looking for more info on subjects ranging from bipolar disorder to perinatal psychosis. There are two boards, one relating to general mental health, and one for perinatal mental health. They can be found here:

General:https://www.pinterest.com/jenkeast/general-mental-health/?invite_code=fbb9f2de770da0b811952d3a1526b838

Perinatal:https://www.pinterest.com/jenkeast/perinatal-mental-health/?invite_code=378cf6952511a4f42f4e50579526745d

An early Christmas present

•December 7, 2015 • 3 Comments

I’ve considered getting a tattoo for ages, probably for at least 15yrs, but I’ve never found anything that I liked enough to want to keep on my body permanently. Earlier in this year an organisation called Project Semicolon started to trend in the online media, and it caught my interest. They are a “global non-profit organization dedicated to presenting hope and love for those who are struggling with mental illness, suicide, addiction and self-injury.” The idea behind the semicolon is that any episode of mental health or suffering is only a pause in your life, not the end – particularly trying to encourage and support those who are tempted to put that full stop/period in place in the form of suicide.

It seems as though the idea has really taken off and that many people, including myself have found that visualization particularly helpful. Many people have started getting semicolon tattoos, and I could see how a visual reminder could be extremely useful on bad days, a little prompt that better days are to come, and therefore not to give up.

I continued to consider doing something with this for a while, but really didn’t just want a semicolon, I wanted something at least a little beautiful. I came across someone who had had it tattooed as part of a butterfly, and I really liked that. I saved the picture and stored it in the back of my mind for a few more months. When you have bipolar and have episodes of mania and hypomania, you have to be extremely careful with making big, or long lasting decisions! I wasn’t taking any chances.

About 3 months ago I got a friend’s daughter (who is extremely artistic and amazing with henna – thanks Kenni!) to draw the basic design on the inside of my left wrist to see if I liked it being there or found it annoying. The henna lasted about two weeks and I really enjoyed it being there, so I started to really consider it being done.

Finally, I decided to go ahead and got a great recommendation for a tattoo artist from a friend of Peter’s who until recently ran his own tattoo parlor. I took the photo to him, and he asked for a little artistic licence as the photo I showed him was extremely basic and he had a long history of inking butterflies so had some ideas. It turned out bigger than I expected but I really like it, and think that I will continue to do so.

The semicolon is straightforward – it’s a constant reminder to hope – that there are many things to hope in and to hope for, and that if today is terrible, it is unlikely that this level of suffering will continue forever.

The butterfly side is a little more complicated. The reason that I chose it is that I am fascinated by the concept of metamorphosis – the change of one thing into something completely different. Earlier in the year we bought Amelie a butterfly enclosure for her birthday. It came with a voucher/certificate to send off to get caterpillars in the mail, which you then fed intermittently until they formed chrysalises. The caterpillars were so incredibly ugly, and when they had wrapped themselves in their cocoon-like houses they looked dead. In fact, in transferring them from the feeding cup to the enclosure, one fell to the bottom of the enclosure. I was sure it was dead, but went to pick it up to place it in the correct place and it wriggled! The sensation was so weird that I dropped it yet again. I was convinced that I had killed it. Eventually the other butterflies emerged, and it seemed like the last one which had been dropped wasn’t ever going to, but about 4 days after the others, there is was: all beautiful when it had been so ugly. It’s a bit cheesy, but my hope for this horrible season in my own life and that of my families is that something very worthwhile, and even beautiful will be able to emerge from what has been a truly awful time.

I considered not making it public (any more than just people noticing it, which will be regularly since it’s on my wrist!), but I think I also wanted to let people know this – that if you have a life which is often, or even just sometimes so difficult that you struggle to hold on to hope, that it’s ok to need help to hope, to need reminders, to need encouragement. To know that you’re not the only one who’s tempted to give up, to know that you’re not alone.

Yes, so that’s an extremely long-winded way of saying “I got a tattoo”. Here it is: