The balance of power, and the need for advocacy

•November 14, 2015 • Leave a Comment

Please scroll down to the DEAR MAN section if you’re just interested in the advocacy side of this post rather than my personal recent history. That part starts at the stars ***

I am finally on adequate pain relief. Thank GOD. A cancellation appointment came up at the end of last week at the Advanced Diagnostic Pain Clinic at Yale, and I went back again on Tues to get my prescription for a Buprenorphine patch. Because it works transdermally (through the skin), it takes a good few days for the amount of drug in your bloodstream to get up to the steady state which is then maintained, and I believe it should be at that point by tomorrow. It has made such a difference already, for the first time in 6 weeks I feel like I’m able to live again. I managed to cook AND bake yesterday, and then go out in the evening. I managed to swim this morning and then take Joe out with a friend and her grandson to an orchard, where we had to walk a long way, and it was hard, but manageable. I am so incredibly grateful, and so relieved.

I’ve been reflecting a lot on the unpleasantness of the last two months over the last couple of days, partially because I’ve been trying to process it and decompress the stress out of my brain a bit, and partially because I found that the situation triggered some really extreme emotional responses in me and I wanted to explore why that was. In the end, it boils down to me feeling incredibly powerless, at the mercy of another human being who you aren’t sure has your best interest at heart, and very, very alone. These were valid feelings given the situation at hand, but are also some of the very basics of the trauma response. This situation triggered many older memories related to medical care and trauma (especially pain management and birth complications), and also older childhood memories. I knew a couple of weeks ago that I was hitting a bit of a crisis point mentally because of the uncontrolled pain and the lack of a good plan for changing that. In agreement with my mental health provider I reluctantly started back on a low dose of the antipsychotic I used to take because it was difficult to separate out which symptom was coming from which issue. Peter and I were adamant that we wanted to make sure that I wasn’t headed for another psychotic episode – this time of the year seems like a danger zone for me. Along with that pharmacological precaution, I have been trying to use the skills I’ve developed over the last decade in order to not stuff my feelings about these things down which just results in other destructive coping mechanisms. I’ve been attempting to observe them without judging and to sit with them for a while if I’m able to, without giving them inflated or inaccurate value or meaning, or being terrified of them. It’s really hard and really exhausting, but does seem to work, at least to some extent. I have mentioned in the previous post that I had been having extreme feelings going back and forward between grief and rage about the whole situation, but a new one reared its head following further contact with my primary care providers. After another difficult appointment where I again didn’t feel heard or supported, and the knowledge that I wouldn’t be able to get a pain clinic appointment until the end of November, I felt such deep despair. That I would have to exist (I couldn’t call it living), without much more than paracetamol (tylenol) and ibuprofen (motrin) for this level of pain was unbearable. I was sitting on my bed before I went to sleep, and felt as if I was in a kind of black hole, where I felt totally isolated and terrified, and not really able to reach out. It didn’t make sense to me at the time, as Peter was also there and was being kind and supportive, but I couldn’t register what he was saying, I literally couldn’t make a human connection in the middle of that pain, and it was terrifying.

It was then that I realised that this feeling wasn’t actually about that literal moment in time, it was a memory, and a very very strong one. Although it didn’t stop the awfulness of that moment it was a huge relief, because I could then talk myself down a bit and rationalise that although I didn’t have all of the support that I needed, that Peter and my therapist were both advocating for me, that there would hopefully be a solution, and we needed to focus on simply surviving until then. Also the extremely strong feelings of powerlessness also seemed to have a memory component, and realising that helped me to be less defensive in my approach towards the medical staff. However, there is an element of reality in that powerlessness. The balance of power in the conventional medical doctor(/nurse/other medical personel)-patient relationship is waaaaaay squewed in the favour of the healthcare provider, and in many ways you are at their mercy. Add seeking pain relief into this which instantly adds red flags to peoples’ approach to you, and then a mental health diagnosis AND being a woman and you really are basically screwed unless you have a really open-minded physician (This article is a good example of how this kind of discrimination can happen: http://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/). I even started to question my own sanity again (hence agreeing to the antipsychotic). and was incredibly grateful that my therapist had kept careful records, and was able to confirm with me that I didn’t start going downhill mentally until significantly after the pain flare had started. It’s horribly complex when you have an interplay of mental and physical health complaints. I firmly believe that there is a mind-body link, but also firmly believe that it is not a black-and-white cause-and-effect link. I find that my mental state enormously affects my ability to cope with pain, but being in a good mental place, having a good attitude towards it and working hard towards a positive lifestyle in terms of diet and exercise does not cause the pain to go away, unfortunately. So often it seems to be implied to chronic pain patients that this would be the case, or somehow to mentally ill people that their pain is a result of their mental illness. This is mostly bullshit, but even if it was true, IT STILL NEEDS TO BE ACKNOWLEDGED AND TREATED!

Back to the powerlessness, I think most clinicians don’t have a clue just how powerful they are, or how their manner or method of approaching their patients is at least as important as what the prescribe or don’t prescribe – it can be literally life or death. I wish I could have made that primary care doctor spend one day experiencing the levels of physical pain that I was, and then add in 3 kids to the mix, a husband who is a shift worker, and a major exam coming up. Even if he had still refused to prescribe (and I respect that apparently that is the majority approach in primary care here in relation to pain control), I think there would be an enormous difference in his bedside manner, perhaps at least some kind of acknowledgement of the suffering that was occurring. I personally feel that bearing witness to suffering is a key element of good healthcare. Knowing that someone cares makes it so much easier, even if they’re then not able to fix the situation or give the care necessary. Knowing that they are interested in helping you to find the care that you need, and provide the support you need to get by in the meantime, rather than just labelling you as a difficult patient and wanting you out of their sight as much as possible.

***This brings me to the final part of this post – advocacy. I have survived the last two months because of advocacy – by my husband, by my therapist Kim, and by myself when I have been able. They have been able to vouch for me due to knowing me well where the primary care physicians haven’t, and have been able to do research and help me to get the care that I needed. And they have given me hope, that this wasn’t a permanent situation, and that I wasn’t going to be left in this half-life forever. Advocacy is important in all parts of life because we all have times where we are not able to speak up for ourselves, whether it’s our kids because of their age and immaturity, ourselves due to physical or mental illness, or the vulnerability uniquely found during pregnancy and childbirth. We all need advocates, and we all need to be advocates. It’s really tricky though, to put across a case for something or somebody when the circumstances and factors make the picture unclear. A few weeks ago a useful app called ginger.io which I use since it was recommended to me by my therapist published a post about advocacy. It was so helpful, clear and concise that I wrote to them and asked if I could reproduce their work here. They said yes! So here it is:

They use the mnemonic DEAR MAN, which is broken down like this:

D: describe the facts of the situation

E: express your feelings

A: assert yourself by asking clearly what you want or don’t want

R: reinforce the other person for listening and responding to your needs

M: stay mindful of your objective and purpose

A: appear confident by making eye contact and speaking firmly

N: negotiate by being flexible or open to alternatives

An example of this in action would be a situation where a roommate “Josie”, might not be contributing fairly to household expenses. “Josie, I wanted to talk with you about contributing to household finances (DESCRIBE). I feel frustrated because I’m also struggling financially now and trying to keep everything as fair as possible (EXPRESS). I would appreciate it if we could total up our household expenses and split them evenly going forward (ASSERT). I think this will help keep tension in the household down and I’ll be less stressed as a result (REINFORCE)”, If Josie changes topics, redirect to the task at hand (MINDFUL). Make eye contact and keep your tone even (APPEAR CONFIDENT). And be open to Josie’s ideas and suggestions (NEGOTIATE).

(CREDIT: Ginger.io)

I think is an absolutely brilliant breakdown of how to advocate for yourself, or for others. I will say though that advocacy can only work if there is a level of understanding on the part of the other person in the situation. The second appointment I had with the primary care doctor went badly even with me using this approach, it was evident within about a minute that there was nothing that was going to change his mind and that keeping on trying was probably futile. In that situation, even my husband and therapist advocating for me only got so far. In contrast I approached my pain clinic appointment like this and it went fantastically – the doctor was open-minded and compassionate, genuinely interested in my past medical history rather than blinded by my psychiatric diagnosis, validated my experience and assessment of the recent history, and was open to discussion and negotiation. So yes, it has to work both ways, but if you can go into a situation un-defensively, with strength combined with flexibility and open-mindedness it really really helps.

I hope some people might find this helpful, I know that I would have done if I had found it earlier in the journey. Oh, and I still managed to take my exam, despite not being on much pain relief at that point. Results could be interesting!

Jenn

Ginger.io is a health promotion and monitoring app which can be used by individuals or linked to participating healthcare providers. It provides a way to track your mood and symptoms, along with articles/advice for health promotion, and information on where to get extra help if you are in crisis. Check out their website at: http://www.moodmatters.org

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Coming to terms with things

•October 31, 2015 • 2 Comments

The last month has been difficult beyond measure. The Coxsackie virus (hand, foot and mouth disease) that we had at the end of September has triggered an enormous flare of pain/fatigue/malaise symptoms which I have suffered with on and off since Maya was a baby, and I have been in uncontrolled moderate to severe pain since that time. I tried to bring it up with my GP on multiple occasions and have failed to get him to take it seriously whatsoever, therefore I’ve also been without adequate pain relief. It’s really difficult as I don’t have any of my past medical history on paper (I can’t even find any paperwork to do with it, either I threw it out in England which would have been idiotic but considering my mental state at the time understandable or it has got lost in the move), so I have no evidence to prove what kind of painkillers that I have needed to use to deal with these flares in the past (and documentary evidence that I have come off these drugs between flares between episodes which is even more important). Also the drug which I have found most helpful for this type of pain (a combined opiate agonist/antagonist called Meptazinol) isn’t licensed for use in this country which is frustrating). I hadn’t tried to put in place medical/rheumatology/neurology care because I had been doing so well physically for over a year now, and maybe naively I had hoped never to come back to this place. In retrospect this was a mistake, so I’m in a pickle.

I have my psychology and psychiatry prescribing appointments at the local Community Health Center and have generally had great care there. We moved our medical care as a family over to a different health center as we were advised to by Peter’s family and also had been recommended that there was an excellent pediatrician there, which we have definitely found to be the case. I have generally been extremely happy with the care that we have received from them, but as my psychologist put into words, I haven’t felt “heard” on this issue at all, which is very challenging. I decided to move my medical care back to the Community Health Center as I hoped it would be easier to co-ordinate my care if everyone was under the same roof. To this end I booked an appointment on Wednesday to see one of their doctors and try to work out something more effective with pain relief as Peter has now had to stop work temporarily to look after me and the kids because I am so incapacitated with this pain yet again.

It did not go well. I was extremely anxious as is to be expected after years of being fobbed off or ignored by doctors and other health professionals, but I tried so hard to go into this appointment with an open mind and not on the defensive. It didn’t help that the nurse who came to take my vitals but unbelievably grumpy – not just no smiling or engaging at all, but when I tried to make an effort and ask her how her day was going she kind of just made a dismissive noise in my direction. Not a great start for someone with a bit of a PTSD response around medical personnel (it might seem picky to bring this up, but actually I think even the basics of care should be done with respect and at least civil interaction, it helps, or at least it doesn’t make things worse!). And the appointment? well yet again I didn’t feel heard. I recognize that I am a very complex patient, and can sometimes be a difficult patient, but I always try to treat people with respect and listen to them, and it’s when that isn’t done in return that I really struggle. I found it hard to get across the things that needed to be said, and the doctor seemed to have little interest in really getting to the root of the issue. I came to him desperate, and having been trying to respectfully address this issue with my other doctor for the last month but not making much progress. He said that he would prescribe a mild muscle relaxer, and as I asked he would refer me to the pain clinic at Yale. No interest in referring me to a rheumatologist despite having two rheumatological conditions. When I asked what I was meant to do in the meantime about the fact that I am struggling so much with my activities of daily living, and that my husband had had to take time off work due to me having inadequate pain control he brushed the question off. He was also not interested in my concern that if I continue to experience uncontrolled pain and therefore such a low exercise tolerance, I am likely to end up in much worse pain long term due to destabilization of large joints – this being one of my main motivations in trying to get a handle on the pain.

Earlier in the week I had met with my psychiatric prescriber who had put me back on a low dose of antipsychotics, as this time last week I was mentally a complete mess. I am really struggling still, but I do think that the main reason that I was really not doing well psychiatrically was that I’d spent a month in uncontrolled pain and was still trying to do everything else that I usually have to do plus extra revising, all with very little help. I didn’t really feel heard at this appointment also – the medical model of care treats people in a very standard way – you are a list of symptoms to them, or you ARE the diagnosis, and when you have a psychiatric diagnosis or a fibromyalgia diagnosis people often stigmatize you and make assumptions about you, leading to conclusions being made without exploring the individual factors in a patient’s situation. This week has still been extremely difficult mentally as well as physically, but it has been more manageable as with Peter off I can rest when I need to and have support when I need it. It is hard not to wonder whether had the pain been dealt with earlier I might not have had to go back on these drugs. I’m not 100% sure by any means, and I know that the two times I have become psychotic have been preceded by bad pain flares so it may just be part of the whole picture, but going back on the antipsychotics feels like such an enormous step backwards. It’s so demoralising that I’ve managed to lose 20 of the 60lbs that this medication (and misery overeating) caused me to gain last time, and now all of that extraordinarily hard work might be so quickly undone. But it may be a positive step, if I am heading towards a psychotic episode, maybe it can be avoided and Peter and I and our psychology/psychiatry support can learn to avoid the extreme ends of the spectrum of Bipolar Disorder, and minimise the damage to myself and all of the people around me. Again, the unknown.

On the subject of that damage, I am extremely sad for myself that this is happening, but it’s so much more than that, I am devastated for my family also – for Peter and the kids, and for my extended family. It’s just so horrible having to go back to this unequal carer/sufferer role in our marriage, and to start having to show the kids my limits again. Having to say no to things that are so normal for the average mother, and that have become more normal for me over the last year is truly heartbreaking. Thankfully we’ve been able to protect the kids from a lot of it as Peter is off work, but as he said the other day, “a month ago it felt like anything was possible, now we’re back to complete unpredictability and the unknown”. I know that Peter is going through many of the same emotions, but I am finding myself flip-flopping between the sadness-grief spectrum and the anger-rage spectrum. It’s also a minute-to-minute battle against bitterness, as I see people all around me taking for granted things that I’m not able to do yet again. I can’t express how much I don’t want to be a bitter person. It’s a pretty exhausting place to be, and in some ways the fact that I was doing better for a while makes it harder to be struggling to this extent again than it would have been if I hadn’t had the good time. I am grateful that I am a bit better physically that I was this time last week, as the idea of living long term in the levels of pain that I had then was unbearable. However not knowing what the future holds is extremely tough, and add in to the mix that I’ve got my first major exam for working towards getting my Connecticut Nursing Licence and things just become a bit ridiculous.

There are some positives though. Things have been worse in the past. It might not sound like a positive but I’m so grateful that we’re only functioning at about 60-70% of how bad the pain has been during previous flares. Also, I have more of a long term view – if it’s gone away once, it might be possible for it to do so again. I have spent the last (relatively pain free) year working out regularly, so my joints are more stable and some things are less painful than they would have been when I was so deconditioned from long term poorly controlled pain. And our relationship is stronger and wiser than it was, so where we have had some extremely tense moments, disagreements and arguments about the situation over the last few weeks, we are generally managing to bear with each other in our suffering. We’re learning by trial and error to allow each other to express our very strong and unpleasant emotions about the situation without judging each other for it or taking it personally or making it about us. This is pretty revolutionary. If this was a year ago, it quite possibly would have finished off our marriage, since the year before that we had a similar episode (which progressed and ended in psychosis) which caused us to end up separated for quite a while. Chronic illness of any kind takes a huge toll on relationships, and so many people in similar situations end up divorced. I very much want to remain married.

Even more than those positives, being more mentally well and physically well combined for the last six months has enabled me to learn and re-learn quite a few things about me as a person, which has been extremely helpful in terms of my view of myself, and also my ability to be kind to myself when things aren’t going well. I hadn’t realised how much of a negative effect the anti-disabled-persons rhetoric which the current UK government uses had affected me, and how those attitudes had seeped into the deepest parts of me. So much of Western society bases your worth on what you can achieve and contribute, and when you’re not able to do much tangibly it’s hard to feel like you have much worth. Add to that the general opinion of the government and their agencies that the vast majority of people with both physical and mental health problems are workshy malingerers, and it’s a recipe for psychological disaster. Even though I was always trying to live the very best I could in the situation, for years thoughts haunted me like “maybe I am just lazy”, “maybe I just somewhere deep down don’t want to work hard and want to sponge off the system”, “maybe it’s just all in my head”, “I wish I was a less negative person”, “maybe if I ate better, took more supplements, exercised more, lost some weight I might be well”. It was a constant drain on my psyche for the whole of the time that I have been unable to work, which is now nearly 9 years. Now that I’ve had 6 months of pretty good physical and mental health? All I can say to that is NO NO NO NO NO!!!!! I have LOVED being able to work hard, when I’m well I have no problems taking responsibility, contributing to things, and being enthusiastic. I am in no way lazy. When I’m not depressed I’m not actually that negative a person. I’m doing (or have tried and found no benefit) literally everything I can think of that is suggested in terms of natural ways to improve health and especially chronic pain, and am still in chronic pain and battling mental health problems.  And working? Well, if the pain stays at this level, it’s going to be very hard to do that in any meaningful way, at least in the areas which I want to do. And when it was 30-40% worse than this? There is ABSOLUTELY NO WAY THAT IT WOULD BE REASONABLE TO EXPECT SOMEONE SUFFERING LIKE THAT TO WORK. Honestly, fuck you Ian Duncan Smith, I hope for their sake no-one close to you develops a chronic physical or mental health problem.

So there you go, that’s why I’ve not been out and about much for the last few weeks, or have cancelled things at the last minute, or not been at my usual classes at the gym. I’ve not been shouting about it on social media for a couple of reasons – firstly for a long time I was in denial that it was happening, and secondly because compassion fatigue is a very real thing, and I find it very hard to not be anxious about this as even I myself had an initial “this again, are you SERIOUS?!” reaction to it. I’m hoping for improvement, but in the meantime Peter and I would be grateful for kindness and encouragement, and maybe a bit of practical support when we decide that it’s time for him to go back to work. I’m not enjoying being stuck in the house a lot of the time at all, and would be very happy to have people over more than I have been able to up to now!

If you read to the end of this thanks for persevering!

Jenn

Learning to bend but not break

•October 10, 2015 • 3 Comments

It’s a Friday night, everyone else has gone to bed, and I need to reflect on this week. It’s been tough, very tough, but it’s over, and we survived…again. This is good.

The last six weeks have been interesting. In some ways, things got easier when the girls started back in school, and in some ways much harder. I was in the middle of a hypomanic episode at the end of August and it took a while for that to resolve, but even before it did I started to revise in a much more serious way, as my first exam for returning to nursing is booked for the 9th November. I also got back to working out properly at the gym, whereas in the summer holidays I did as much as I could, but wasn’t able to maintain a decent schedule with it. Ever since, the struggle for balance in every area of life has been fierce. I’m grateful that the temporary medication increase resolved the peak in mental health symptoms, but I was way too enthusiastic in my return to the gym. I managed to hurt myself badly the first time I exercised, and then make myself quite ill  by overexercising for the next couple of weeks. It felt so good to be able to get back to it, that it was hard not to push my body further than it can cope with. I lived with limitations so much more severe than I do now for so many years, that the novelty of being able to exercise has not yet worn off, and maybe it never will. It generally feels ok when I am exercising, but I still find it can sometimes have pretty severe consequences the next day, or a few days after. After a couple of weeks of the overwork-crash cycle I realised that I needed to slow things down. I also had a million things to do that I’d put off over the summer holidays, and still the novelty of not being depressed is so exciting that I want to sort out every area of my house ready to move next summer. After so long of being so depressed and so unwell, now I’m finally feeling like a real human being the battle to not get overexcited and burn myself out is so so so so tough.

Over the last month I’ve had a bit of a tougher time physically, not just due to the exercise. I wrote in a previous post about the enormous improvements I’ve had in my physical health (https://differentblogdotme.wordpress.com/2015/07/13/physical-health-a-strange-miracle/). For a month or so, I’d had higher levels of pain and worse fatigue, yet compared to how things used to be, it was really not too bad. I have so many coping techniques for pain, that it takes a lot to slow me down nowadays. I can’t express how much easier it is to mentally manage pain when you’re not depressed. It doesn’t reduce the amount of pain you’re in, but the emotional reaction is possible to control, if not avoid. I can keep positive for a long time even with some significant discomfort, which is wonderful. However I’ve been having multiple migraines, up to three times a week, and it was starting to take its toll. Then last week happened. Joseph & Maya got Coxsackie virus (hand, foot and mouth disease). They were a bit miserable, Maya couldn’t eat much for days, but they weren’t super sick. I got it too and felt rough, and a bit sore. I felt muscularly weak for about a week, but was very functional, and still managed to keep revising. It’s harder to keep perspective though when you’re sick, or when your children are sick. I know it’s difficult for any mother, but with having been stuck inside for so many years it’s pretty triggering for me, and I get scared easily during illness. Luckily by the weekend we were all doing well, and while Peter was working we had a good and busy time. By the end of the weekend I was exhausted and sore but didn’t think much of it. On Monday, I felt rough, on Tuesday I was very sore but decided I’d still go and exercise (but just swam instead of gym & swim), and by the evening was in agony. By Wednesday, I was in uncontrollable severe pain. This was really complicated by the fact that I had no decent painkillers as I’ve been doing so well for so long that I’d made one prescription from England last the entire time that I’ve been in this country and had taken the last tablet the week before. Chronic pain relief differs from managing acute pain in that you manage it by keeping on top of it taking regular pain relief, and try to avoid the very severe peaks which are difficult to come down from even with strong painkillers. As I use so many different practical and CBT measures to manage pain it took until the pain was pretty ridiculous for me to realise there was a problem. At that point the earliest I could bring my doctors appointment forwards was three days away, and I was desperate. I was also very scared to tell my husband how bad things were as although he is a very good very supportive man, in the past he’s struggled not to react badly when my physical health takes a turn for the worse, unsurprising after so many years of suffering for the whole family. In the end I texted him at work and he was very supportive and said helpful things like “we’ve been through worse, we can manage this”, and encouraging me to think about going to an out of hours doctor. I was far too scared to do that though, seeking pain relief at an out of hours service generally gets you labeled as job seeking, and I’m still really scared of doctors, so wanted to see one with whom I had built at least a little bit of trust.

The most interesting thing about the whole situation was my emotional reaction. It’s understandable that I would be scared, but I was absolutely terrified. And so so so angry. And so disappointed. I haven’t had severe pain in over a year, which is one of the reasons that I’ve been able to take significant steps towards going back to work. And I’ve so enjoyed being able to work hard – physically and mentally, I’ve LOVED it. And this week it felt like all of that was slipping out of my hands. The unpredictability of chronic health problems, both physical and mental is to me the hardest aspect. When you have both going on, it’s ridiculous, and it’s tough not to avoid dreaming and planning, because of the disappointment when things aren’t able to be followed through on. I also hate letting people down, and that’s happened quite a bit over the last few weeks as I’ve had to go back to listening very carefully to my body and taking a lot more down time than I would have liked to. Tuesday afternoon and evening were horrendous. But amongst the terror and the anger, there was some progress. I did spend time thinking about what I could learn from the situation. I did realise that I had the capability to adjust my expectations a lot more quickly than I used to. I was able to talk myself back from the brink relatively effectively with Peter’s support. I decided early on even before there was any resolution of the pain not to completely give up on my efforts to get back to work, but to work around these issues and deal somehow with whatever my new normal is going to be. I could only do this because I’m not depressed, which meant that the spiral of despair was not instant. I spent a lot of time observing my feelings about the pain and my/our situation without judging them, which is overall a really helpful way of dealing with negative emotion. I’ve learnt so many methods of managing these things, and I’m so grateful for them.

In the end, although Tuesday, Wednesday and Thursday were physically awful, this morning the pain was down from an 8/0 to more like a 4-5/10, and this afternoon all I had to take was an NSAID. I now have some slightly better painkillers, but also today I have hope, as I feel much more back to normal. I have no idea why I was in so much pain, apart from it possibly being a post-viral flare of joint problems. I think though that this episode has been a wakeup call that I need to consider my physical health as much as I do my mental health, and that I am not invincible. My physical health problems are complex, and in many ways incomprehensible to myself and the medical profession, but they are real, and I can’t ignore them. I am learning more and more (while trying to make sure I don’t get obsessed by reading about health, like I previously have when mentally ill) about the effects of trauma on the long term health of the body, because of changes in the brain affecting production of hormones in the body, and the resulting effect of inflammation and pain. When you have unexplained pain, and are diagnosed with fibromyalgia, there is so much implication from our culture that it’s therefore “all in your head”, and not in a helpful way, like an acknowledgement that your emotional trauma has affected your body including its ability to process pain, but that somehow you are to blame for your physical suffering. I have self-condemned so much that either the pain is psychological, that I have some kind of emotional connection to it and therefore feel like I need it. That I somehow am subconsciously needing attention and don’t want to work. But there is more and more research going in to these conditions which shows the neurochemical changes associated with them, and combined with observing how much I’m excited about the possibility of working and studying longer term is helping me to finally let go of those feelings. For the first time in ages I not only feel like I do have something to offer to society generally, but that it might actually be possible for that to happen as I’m not spending the vast majority of my effort trying to stay alive and use the tiny amounts of energy I have left trying to maintain my marriage and mother my children. We shall see.

The other thing that I took away from this is that in the time where things have been easier physically, it has made me appreciate the simple things in life so much more than I ever would have had I not had so many years of extreme pain. Not one day have I taken for granted being able to stand and walk without much pain, being able to lift my kids, push them on the swings, run with them. Being able to hold Joseph’s hands and jump him in puddles. Things that I missed with the girls, and have loved getting a chance to do with Joe. Even if this week’s pain had been the signs of a return to the living hell of severe chronic pain, at least I have had those chances. Also, even if I returned to severe chronic pain, I will never again have multiple small children to deal with in the middle of it. I will never again be trying to deal with breastfeeding a small child through it, I don’t have children who regularly wake in the night, my children mostly walk with me rather than need to be carried. The extremely physically demanding era of motherhood is ending anyway. Even if severe pain returns permanently, my body is stronger through working out, and even in the pain, I still have better range of motion, better joint stability, am more functional, and could continue to exercise even if it is just swimming.

Overall it’s been a tough week, a tough month, a tough year, in fact a tough everything, but when the shit-storms happen, I’m recovering quicker, which is exciting. I’m becoming more able to be flexible and roll with whatever happens in every area of my life, which is making motherhood much easier and the rest of life much more manageable. I’m planning to be much much more careful with how much rest I do and how hard I push myself, within the confines of the fact that I’d still like to try to pass this exam. We shall see. For now I’m grateful that this has been a pause in our story, a semicolon, not a full stop (period to you Yanks). I am slowly learning that the awful times in life are usually temporary, even if they are utterly utterly dreadful. Hopefully. Here’s to a better week next week, goodnight!

Managing the panic

•September 15, 2015 • 2 Comments

anxiety-girl

(credit: Natalie Dee)

I had a rough weekend with anxiety, and it continues today, so I wanted to share with you a little of how I manage it at this point in my life, particularly anxiety concerning my health (although the weekend wasn’t really health anxiety, it was just an unpleasantly bad non-specifically anxious time).

After a moderate day of anxiety on Saturday which mostly manifested in me being grumpy and short-tempered (irritability is a major symptom of anxiety, and I also had a migraine which didn’t help), Sunday morning I woke up with a knot in my stomach, yet not really consciously anxious at all. It’s a strange situation at the moment. I think the longer I live with mental health problems like this, the more convinced I am that brain chemistry is the majority of the problem with these conditions. Of course there are things you can do to make them worse, and thinking patterns/behaviours which are unhelpful, and therefore things that you can do to improve your situation also, but even on a good day when I manage to do all of the helpful things, and hopefully very few of the negative things I still often feel anxious, sometimes very much so. My therapist made the very good point today that it may have been the anxiety related to health that I experienced earlier in the week and on Saturday that resulted in the nonspecific anxiety on Sunday. I guess I hadn’t thought about a delayed effect on brain chemistry.

I have battled moderate to severe (sometimes totally crippling) anxiety for the last 11 years, and am slowly becoming better at doing so. I’m so grateful and so pleased to have got to a point where even on a day like Sunday I actually managed to enjoy my day despite the battle to manage my mind and body. I don’t always win against this, but sometimes I do, and that’s a wonderful thing.

I find that a lot of my anxiety focuses on my health, and that’s unsurprising considering how unwell I have been over the last 11 years. There are a few specific reasons for me to be anxious in this area:

  • Ehlers-Danlos syndrome means that it is very easy to injure my joints, even in the normal activities of day to day life, let alone doing more fun stuff! The best example being that I once subluxed (a self-replacing disolcation) my hip simply by rolling over from my front to my back while lying in the garden. This resulted in two surgeries and years of chronic pain, yes EDS sucks!
  • I have many joints which have been previously injured, meaning that some of them have altered function
  • I suffered with very severe chronic pain for over a decade and continue to experience chronic pain to a lesser extent
  • I have bipolar disorder, meaning that I cycle between depression, “normality” (whatever that is!), and mania/psychosis to differing extents depending on the season of life

So health anxiety is an ENORMOUS battle for me, particularly in relation to my current attempts to get back to work. It is so hard not to worry that I’ll have put in all this effort and spent all this money trying to go back to nursing but then when it comes to it I might not be well enough to manage it and cope with the pressure which that kind of job brings. I had a significant pain flare for about 4 days last week, which is relatively unusual at the moment, and a migraine over the weekend and now another today, unfortunately this becoming quite a regular occurrence. So it was particularly difficult to manage this week.

There is a brilliant allegory written by Christine Miserandino, a woman who has Lupus, describing how life with chronic illness of any kind is like having a certain number of spoons, and that each task you have to do takes a certain number of those. The full article can be found here, and I’d really recommend reading it – if you are someone who struggles to identify I think it clarifies things well: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. The main idea is that for an average person, there is less of a limit on the availability of “spoons”, but when you live with extra challenges there is a very finite limit of how many you have available – for instance you may have to sacrifice functioning normally later in order to enjoy or manage something now that a well person wouldn’t even have to think about. When I was at my physically most unwell, between 2-7 years ago, it was such a horrible game to play – what I could manage compared to what I would have to give up in order to be able to do so. Having young children made this a million times harder, with there being so many things that I literally couldn’t do, and also trying to balance remaining well enough to function whilst still actually doing some enjoyable things. It was HORRIBLE. I have also fought this battle in relation to my mental health, and continue to do so although I am so thankful that physically I don’t have to think about it so much any more most of the time. However, mentally I hit my limits nowadays much much sooner than I used to, and because of that have to be much more careful about self-care than I previously was (and I’m still growing in this area!). When I am in a phase where I am higher than usual mentally, I can end up enormously overdoing it, burning out badly and ending up very depressed. Having only been diagnosed with Bipolar Disorder for just over a year and half (although it’s the only diagnosis I’ve ever had that enables me to make sense of the mental health problems that have been happening since my teens), I’m still learning how to balance these fluctuations. And it’s only because my physical conditions have improved and my children are getting older and more independent, that I have enough “spoons” (I hope!) to begin to return to work, which I’m equally excited and terrified by.

Whatever the cause of my anxiety on a particularly day, I manage it in a similar way. It’s a mash-up of CBT, mindfulness, distraction, thought-challenging and various other things that I’ve learnt along the way. Here are some things I find helpful:

  • Working very hard (and finally being less depressed enough to make some progress) on not being angry or judgemental with myself for being anxious.
    • Being anxious about being anxious is such an easy trap to fall in to, and it makes things so much worse. I think my final acceptance of the brain-chemistry aspect of these things has been really helpful with that, along with having finally found an antidepressant which works (having been tried on maybe 6 different ones before and found them all useless. I’m going to write about that more later). I’m counting depression and anxiety as equally brain chemistry related here which is why I’ve mentioned the medication I’ve never yet been on a medication specifically for anxiety apart from when psychotic, but there are many people who have found real relief from medications for anxiety. It doesn’t work for everyone, and it’s a scary prospect, but if you’ve been struggling for a while and aren’t coping by using other methods alone it’s worth a try. There is stigma around using medication, but I think many more people than we expect are on psych meds, people just don’t like to talk about it.
  • Being around people who empathise well with people with anxiety.
    • There is a lot of judgement out there, and it takes bravery to put yourself in social situations when you’re anxious. But being around others is so incredibly important, even just for the distraction aspect of it, for me I am much more anxious when I am alone. Unfortunately I am often very grumpy when anxious, so it needs to be understanding nice people! I’ve found when opening up about this issue I’ve found that so many others who I wouldn’t have expected to be are fighting this battle as well. This doesn’t have to actually be in person if it’s too scary to start off with. This is where the internet comes into its own – find a nice group to join where you can get some support. I am part of a small online mental health group made up of women who have been in the mother and baby mental health unit in Nottingham where I spent 3 months 2 years ago. It’s a lovely group of very supportive women who have all been through serious mental health problems and are a different stages of recovery, and it’s a great place to vent and get practical advice.
  • Not underestimating anxiety.
    • Anxiety is a serious mental health problem, not just worrying too much over things. Telling yourself (or others)  “it’s just anxiety” or “everyone worries about things sometimes” ignores the impact that this condition can have on people’s lives. I’m by no means saying that everyone who suffers from mild anxiety has a major mental health problem, but that it can be such, and by downgrading it to classify it as something not very serious you do many people a disservice. During my worst anxiety crisis, three months after Maya was born, a very well meaning person told me “it’s just anxiety Jenn, it’s a paper tiger”. I wanted to scream back “yes but the paper tiger is ripping my mind to shreds!!”, but instead I just self-condemned more which made recovery even more challenging.
  • Recognising patterns of thought which are repetitive and unhelpful and challenging them or reframing them with a different emphasis.
    • I have repetitive self-condemnatory phrases which come to mind more when I am struggling with the anxiety. I have to catch them, challenge them and talk myself down when that happens. It’s hard!
  • Constantly challenging myself to live the the particular moment/day/hour/minute that I’m in.
    • I try to do this whilst actively planning for the future rather than worrying about it, as at one extreme this approach can lead to procrastination which makes anxiety much worse! Trying to keep my mind focused solely on what I am doing at that particular moment makes all the difference, particularly in terms of connecting with and enjoying time with my kids. I know this is an incredibly easy thing to write about and an incredibly hard thing to do, but I’ve found it to be like a muscle, it gets easier as you use it more, and again with less depression I actually have more energy to do this and find it pays off hugely.
  • When I’m panicking about fitting things in, stopping and slowing down a bit for a while.
    • I am often overwhelmed by the amount of things I need to get done, and about trying to get any kind of quality time in with my husband, kids and friends whilst doing them. I have to be strict with myself when it gets really bad and slow down, telling myself that if I work slowly and steadily I’m likely to get much more done than if I run around like a headless chicken trying to fit things in.  I sometimes use mindfulness techniques to do this like stopping and focusing on my breathing for a while to re-centre myself.
  • Learning to take care of myself in the stage of life that I’m in.
    • It’s really tough making time for yourself when you have small kids, but it’s so important. This doesn’t have to be major chunks of time away from everything, but just allowing yourself to be kind to yourself really helps. Yesterday that meant actually lying down on the sofa while I made the 10 phonecalls I needed to make, rather than standing in the kitchen like I normally would. Today it meant allowing myself to take an hours nap rather than doing the things I had on my list. Both of these made a huge difference to how exhausted I felt by the time Joseph woke up and the girls got home and today it was particularly important because I have a migraine and am already understandably irritable . I also ended up going for coffee with a friend last night instead of studying, which meant I studied at lunchtime instead of cleaning. I could panic about how I’m going to fit in the stuff that I left, but again I’m choosing to be kind to myself and realise that many things can wait, and I’ll be more likely to have the energy and motivation to do them if I have friends and I’m not miserable.
  • Breaking down tasks into smaller chunks
    • I am often really overwhelmed by large tasks, again particularly as I get very little uninterrupted time to achieve anything with three kids around. I have found that the only way I can manage bigger tasks is to break them down and do a little bit at a time. I find that I work better by doing little bits of several different tasks at one time than I do trying to tackle one large one which means I often procrastinate. This is definitely at least partly a personality/way my brain works thing and may not work for everyone.
  • Recognising that modern life IS anxiety-provoking, especially parenthood.
    • The media bombards us constantly with ideas of what we should/shouldn’t be doing, and it’s overwhelming. Once you have a child it gets a million times worse, and the responsibility you can feel to provide the “perfect” parenting within your very imperfect situation is so tough to manage. Also we were not designed to live in isolated nuclear families with no extended community, and this makes modern parenting so incredibly difficult.
  • Understanding at least a little about biological functioning and how the brain works and hormonal fluctuations affect us
    • Our bodies were not designed for artificial light and it can really affect our brain chemistry, particularly white/blue light in the evenings, which affects the body’s productions of melatonin and therefore our ability to fall asleep/stay asleep.We were not designed to lead such artifical lives e.g. exercising at the gym versus in nature. Also extended periods of stress can dysregulate production of a hormone called cortisol, which had an enormous affect on brain function and anxiety levels. Parenthood alone is an extended period of stress!
  • Limiting your social media time, and making sure you take everything you can read with a pinch of salt.
    • People mostly display their best side on social media, so you get a very false view of things compared with the actual reality of how people are living day to day. Two examples of this are the album of photos which I put up from our visit to England and how much it looks like we had an amazing time. We did, but the photos don’t show just how stressful and exhausting and emotionally overwhelming it was also.  Another one which hit me hard recently was that I had to look back through facebook for something and ended up spending time looking at my photos from around the time of Amelie and Maya’s births. In the vast majority of them I look really happy and as if we’re thriving. There are ones of times when I know I was seriously suicidal when I look absolutely fine. It really shocked me that actually the only external evidence of the mental and physical battle that I was fighting is the odd photo of me looking really pale/really flushed, and a few where I was wearing wrist braces or occasionally using a wheelchair. It was shocking to see how someone looking in from the outside could have interpreted my life compared to the painful reality. Also, when you’re really depressed the temptation is to dissolve into various things in your phone in order to not have to deal with the unpleasant reality of the moment. This works briefly (apparently it gives us a little boost of serotonin every time), but generally makes things worse overall. I really struggle with this, and often think I’ve cracked it, only to fall back in to the habit when life gets a bit harder again.
  • Spending time with people who have older children, and for me also just watching my children as they get older.
    • I find it so helpful realising that the things that I worried about so much when they were tiny are either not as important as I thought they were, are things that they grow out of with age, or are much less dependent on my abilities and influence as a parent than I thought they were. For me, having 3 kids really helps with this as I have parented them in a relatively consistent way, with three incredibly different outcomes! So much of a kid’s character is innate and it’s so interesting to watch that develop over time. I haven’t historically had that many friends with kids older than mine (unless they’re WAY older), and I so wish I had done, I think it would have been really helpful! Also within this, realising that life IS crazy, and that you don’t have to have long periods of one on one time with each of them to meaningfully connect with your kids. Little moments are really valuable, and can be done creatively, or in fact not very creatively, as I’m not very creative!
  • Eating well.
    • This is hard, and I am very variable on it. Too much caffeine is definitely bad for my anxiety, so I only have one cup of caffeinated coffee a day, and not too much tea either. While I was in England this made things difficult! Blood sugar fluctuations can affect mental health a lot, especially anxiety so trying to avoid big peaks or dips is important, and particularly difficult while you have young children as it is so easy to forget to eat, or grab mainly high carb snacks that are easy to eat on the go. I also find that weight gain has a horrible effect on my mood, both anxiety and depression, but depression makes me comfort eat. It’s an unpleasant cycle. I also have had the problem of medication (antipsychotics) related weight gain which has been really really difficult. Addressing this is important to me, although it is going annoyingly slowly.
  •  Exercising.
    • This is so helpful for me, and it’s so wonderful that I’m actually well enough to do it now. I find if I’m feeling depressed or anxious and I go and put in time at the gym, it balances me out really nicely. Being fitter also actually gives me back “spoons” as my body is stronger and I’m less at risk for injury, stronger, and more able to do physical things with my kids without paying for it later. An extra factor to this is that apparently posture is a significant contributer to mood, and that therefore hunched posture can contribute toward mood disorders. This is really difficult to do when you’re very depressed and when you’re anxious, but may help.
  • Prayer.
    • I am variable on this. I have struggled with my faith a lot since my last psychotic episode but am trying to still continue to incorporate this in to my life. It has been helpful to me in the past and continues to be so for many people.
  • Music.
    • I use this a lot. I find it to be a really helpful distraction. I have finally put some speakers in my kitchen and often listen to music when preparing food and doing admin. It’s made a big difference to two annoying boring tasks where I used to often have my mind wondering uncontrollably and worsening my anxiety. I listen to an enormous variety of things depending on my mood, both Christian music and not. It’s not that I don’t ever want silence, but too much silence allows my mind to race in an unhelpful way. I have had a lot of trouble falling asleep during times of mania and hypomania. Over the last few months, and during this last episode recently I’ve got in to the habit of listening to a couple of songs on my headphones when I lie down in bed. For me it stops the anxious habit of dissecting my day or worrying about the day to come. It’s such a simple thing but has been pretty revolutionary for me, especially because I really struggle to be self-controlled with my sleep hygeine!
  • Therapy.
    • It’s easier to find good counselors here than it is in England because there is much more of a therapy culture and it’s generally covered by insurance. But it is possible in England, and it’s worth asking your GP to refer you if you feel you need it. Some counselors/therapists have a sliding scale for payment which takes into account your income. I think there are also online CBT courses you can do if it’s hard to access counseling because of availability, finance or childcare. Getting an independent person to give input in to your situation can be really helpful.
  • Writing things down.
    • I find that getting things on paper/in type means that they’re no longer spinning around in my brain. It really helps, whether it’s in a journal form or emails to a trusted friend or therapist. I have gone back to doing it recently and am finding it very useful.
  • Not taking a deep breath!
    • That advice which is so often given is quite misleading. Deep breathing actually increases your heart rate and blood pressure. Slow controlled breathing is much better, and I actually find that blowing air out through my lips like a horse really helps me when I’m having a difficult moment. I look and sound like an idiot, but it helps.
  • Mood tracking apps.
    • My therapist and health centre use an app called Ginger.io, but I know that there are lots of similar applications like it. It’s interesting to see the fluctuations in your mood in a concrete manner, rather than relying on memory which when you’re battling with depression and anxiety isn’t the most reliable source! My healthcentre has it set up that if certain entries are made which are concerning then it flags it with your health provider who can then contact you to check on your welfare. Pretty clever.

That’s all I can think of for now. It may be a bit garbled. I hope it’s helpful for people and doesn’t come across as me trying to tell people that I’ve got it sorted. I really don’t, and on Sunday when I came to the end of the day and had managed to have an enjoyable day despite bad anxiety I still commented to Peter just how exhausting it is to manage it effectively. To those of you who battle with anxiety and get up in the morning and face it another day however “successfully” or not, you’re warriors. It’s a hidden battle, but there’s lots of us fighting it. You are not alone,

Jenn

Oh, and just to make you giggle: http://www.buzzfeed.com/erinchack/comics-that-capture-the-frustration-of-anxiety-disorders?utm_term=.mwmXMn3o9&sub=2650461_1752757

 

Responding to Aylan

•September 4, 2015 • 4 Comments

This blog is usually a mental health blog, particularly a perinatal mental health blog. Today however I am going to take a break from the usual focus and look instead at an issue which has been troubling me for a long time, but has become even more weighty after the horrific images of people arriving on the shores of Turkey and Greece, both alive and perished have been hitting the international news in the last few days. I have struggled to know whether to write about this, and feeling that my doing so is likely to be insignificant compared to many who are doing so, but I have decided to do so despite my reservations in the hope that it might help even in a very small way.

The refugee crisis in Northern Africa and the Middle East has been going on a long time, with people risking their lives in desperation to reach Europe in the hopes that they will be able to find safety and refuge there. It is estimated that as many as 20000 may have died trying to cross the Mediterranean Sea in the last two decades, and in the last two years the problem has become critical, with over 2500 dying attempting the crossing this year. It has been in the news regularly in relation to the war in Syria for at least the last two years, both in England and throughout the world. Last week the bodies of around 70 refugees who had been exploited and then abandoned by human traffickers were found in a shipping container, and to be honest no one really batted an eyelid. But this week images have come to light which have shocked people in to realising the seriousness of what is going on, and the reality of the struggle for these desperate families who are risking everything because they have no other choice. It has finally dawned on the general public, including myself, that we need to wake up.

The most powerful and most distressing of these pictures are these:

REFILE - CORRECTING BYLINEATTENTION EDITORS - VISUALS COVERAGE OF SCENES OF DEATH OR INJURYA young migrant, who drowned in a failed attempt to sail to the Greek island of Kos, lies on the shore in the Turkish coastal town of Bodrum, Turkey, September 2, 2015. At least 11 migrants believed to be Syrians drowned as two boats sank after leaving southwest Turkey for the Greek island of Kos, Turkey's Dogan news agency reported on Wednesday. It said a boat carrying 16 Syrian migrants had sunk after leaving the Akyarlar area of the Bodrum peninsula, and seven people had died. Four people were rescued and the coastguard was continuing its search for five people still missing. Separately, a boat carrying six Syrians sank after leaving Akyarlar on the same route. Three children and one woman drowned and two people survived after reaching the shore in life jackets. REUTERS/Nilufer Demir/DHAATTENTION EDITORS - NO SALES. NO ARCHIVES. FOR EDITORIAL USE ONLY. NOT FOR SALE FOR MARKETING OR ADVERTISING CAMPAIGNS. THIS IMAGE HAS BEEN SUPPLIED BY A THIRD PARTY. IT IS DISTRIBUTED, EXACTLY AS RECEIVED BY REUTERS, AS A SERVICE TO CLIENTS. TURKEY OUT. NO COMMERCIAL OR EDITORIAL SALES IN TURKEY. TEMPLATE OUT

A paramilitary police officer carries the lifeless body of a  migrant child after a number of migrants died and a smaller number  were reported missing after boats carrying them to the Greek island of Kos capsized, near the Turkish resort of Bodrum early Wednesday, Sept. 2, 2015. (AP Photo/DHA) TURKEY OUT

Photo credit: Nilufer Demir, Reuters
These photos show a three year old Syrian boy, Aylan Kurdi, being picked up by a rescue worker after his body was washed up on the shores of Turkey when the boat carrying himself and his family sank, killing him, his brother, his mother and several others.
Again I struggled to know whether to put these photos in, especially as they seem to be everywhere you look at the moment, and because I myself find them so distressing. But photography is a powerful medium, and it takes images as shocking as these sometimes to galvanise complacent people (again including myself!) in to action where it is so easy to ignore other people’s suffering as we go about our relatively comfortable lives.
I have been thinking about why it is these photos in particular which have troubled people, when photos of utter desperation from the same situation have hit the news repeatedly for such a long period and I believe that it is for several reasons. Firstly I think that this has become and will likely continue to be the iconic image from this episode in history. Photographs which reflect the struggle do this, and are seared into the collective memory forever, like the man standing in front of the tanks in Tianenmen Square, Kim Phuc, the child running naked from the napalm attack during the Vietnam war, Dorothea Lange’s powerful black and white photograph of a struggling mother during the Great Depression, and many many more.
Secondly because this image humanises this particular struggle in the way that none other has done yet. It is easy to think of refugees (do not dare to call them migrants) as “other”, even as sub-human – politicians must do that in order to be as heartless as they continue to be, but when we look at these images we can’t do that. This kid looks like one of our kids. He is obviously well cared for and loved. He is well dressed. He looks like he’s been playing on the beach and has fallen over. But he is dead, he has drowned because his family have been so desperate in their current situation that they have risked, and lost everything trying to get to a place where they can find safety and security. There are other photos like this one, many others. They should be hard to ignore, but we do. It shouldn’t take a photo like this to make things different, but it does. We should have compassion always, but we don’t. We are all racist to some extent and we all have to switch off at least some of our compassion to continue to function in a Western society in light of what is happening in other parts of the world. But these photos challenge our normal defenses which keep out other peoples’ sufferings, and they will not let us ignore them, they make us look again. Every mother I know who has seen these cannot talk about them without tearing up. I found myself sobbing in a DMV line (queue) yesterday. We are waking up. Maybe these images make us realise that “Shit, if circumstances were a bit different this could be me, my children, my family. My baby boy”. And we have to respond to that. Or at least we should. It is GOOD that we are heartbroken by this.
But why is this touching people’s hearts in a way that other crises haven’t? For people in the UK, there is a massive political disillusionment which feeds into this – our current government’s approach to those who are poor and those with disabilities, and particularly to people seeking refuge is despicable. And people are fed up of it, and fed up of not knowing what to do in a situation like this, and want to come together to make a difference. Our Prime Minister David Cameron’s recent comments about how the response that we as a country are taking are being a part of working towards a political solution in that region are so hollow. Could he look Aylan’s father in the eye and say that as he faces having to continue life as the only surviving member of his family? The UK has always prided itself on being a bit “other”, and so far have totally refused to be a part of any Europe-wide plan for providing safety for refugees. There is ongoing political and media rhetoric about a “swarm of migrants”, and the implication that it would be utterly crippling for our country to take in any number of the people who need help. There is a horrific refugee camp in Calais in France where thousands of desperate people wait hoping to get in to the UK, and where conditions are absolutely appalling, and the UK just spends more and more money on fences and security to keep people out. It is understandable that people are afraid, particularly with our social healthcare system and social security provisions (slowly being dismantled by the same government), but no-one is asking the UK to take in ALL the refugees, just our fair share, and now even local authorities are coming forward and saying that they will take a certain number of refugees and provide housing and assistance. The pressure on the top politicians is rising, as it should be.
But here’s another problem. Conflict is happening all over the world, not just in Syria. There is suffering and injustice everywhere. It always has been and always will be, this is not new or surprising. Media and the internet means that we know about it, that’s the difference. We have had widespread media coverage of many previous humanitarian crises over the last 20 years such as the Bosnian genocide, the plight of orphans in Romania, the suffering of the famine in Ethiopia, the horrific violence in the DRC, which continues. There are enormous social issues in both England and America which demand our attention, and focus on local  issues which have been largely ignored for years such as institutionalised racism is good. People understandably often balk at helping those in other countries when there is so much suffering right on our doorsteps. The scale of global and local suffering is overwhelming. I AM OVERWHELMED. I am a mother of three young children battling serious mental illness trying to study for huge exams, with a husband who works long hours and various other challenging life circumstances. Even taking the time out to write this blog post contributes to my overwhelm because I am SO pressed for time. It’s easier to be an ostrich, to ignore these issues. But we must not be ostriches, So what can we do?
The best advice I can give is do something. Find some way to help with the immediate problem. There are some incredibly low-bar easy way to do this. The easiest I can think of is to join political petitioning civic movements and organisations like change.org or avaaz.org or citizensuk.org sumofus.org moveon .org,
who raise awareness of these issues on a day to day basis. This takes virtually no time or effort, but these organisations have achieved massive things through the grassroots support of people like us.
Sign these petitions:
and then any other related ones which come through the above organisations.
Join communities like these to give you ideas of how to help. Two examples (among many many others are):
Sponsor a child if you can. We have just started sponsoring a child again after having not done so for a while (not a Syrian child, a child from the West Bank in Jerusalem), and are doing it this time through a charity called World Vision, who work with vulnerable children all over the world, and are particularly open about how the money donated to them is used, which I find reassuring. There are many many charities who do this kind of work. It makes a difference.
Give financially if you are able, any amount helps. There are so many organisations who work with refugees in Europe and beyond, and I obviously can’t list them all, but this list from the Independent is a good start, and also lists more grassroots groups you can join:
This is a BRILLIANT practical article, please read it! Notable things from it if you can’t is that supporting organizations like these – Medecins Sans Frontieres (Doctors without Borders in America) and the MAOS – Migrant Offshore Aid Station are a great place to start. But 
Volunteer if you can – if you have skills which could be useful, are at a life stage where you have the freedom to do so, and can get time off work to go and help. DO IT!
More than this though, I would encourage you to slowly change your lifestyle and attitude to incorporate caring for those less fortunate than yourself in both the local and international community. It’s great to be moved by a critical situation, but it is harder and much more powerful to make a long term commitment  to make small (or big!) changes in lifestyle. You don’t have to do this, and if you can only give to the current situation as a single act of kindness, it is very much still worth it. But if you want to do more, once we’re past the current crisis and looking towards the long term I’d recommend starting really small. Because the overall issue is enormous, trying to do too much at the beginning is likely to mean that you don’t continue it, which would be a huge shame. Yet small lifestyle changes are the kind of thing that, if everyone adopted them, could mean a HUGE improvement in social justice worldwide. Here is a list that I can think of off the top of my head:

Buy an extra item at the grocery store for a foodbank,  or volunteer for a foodbank.

Before you take kids clothes/shoes to the charity shop/consignment store check if your local womens’ refuge needs clothes in those sizes. Please check, places like this often have very little stiorage and big donations of items they don’t need are actually unhelpful.
As I said before, sponsor a child or children
If you are part of a faith-based community give to your local church/mosque/synagogue or other. Make sure they have a commitment to give a significant percentage of their income to support the vulnerable in the local and international community. If they don’t, be part of making a change to that, or move to another place. We have finally found a church that has this as a fundamental part of their ethos, and think that this is so important. Fulfil the mandate to care for the poor and needy that should be a part of your expression of faith.
Volunteer at a soup kitchen or related community project.
Get involved with mentoring vulnerable young people in your community.
Encourage yourselves and your kids to give out of your plenty – give some of the money you receive for birthdays and Christmas and other occasions away to people who need it more than you. Our kids are encouraged to give a percentage of their pocket money and actually take a lot of delight in doing so. They also recently gave some of their birthday money to a friend of ours who is working in India who used it to help buy resources for a summer school that they were running. It’s so important that we involve our kids in things that give them an international outlook.
If your children are moved by a particular issue (because kids are so often better at noticing social injustice than we are, they’ve not yet built up our defenses against it), then encourage it! While we were in England recently, we were walking through Manchester City Centre, and it was the first time that our kids had ever noticed homeless people since they were of an age where they could understand the concept. Maya particularly was really moved with compassion and very distressed about realising that there were people who are in such a vulnerable situation. With homeless people it is often very difficult to know what to do that will be helpful, and while it is good to give to charities helping to combat homelessness, sometimes a practical response is also helpful. I saw an idea to create bags of mini-toiletries to give to people who we come across, and shameless stole it to produce these with my girls:
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(The differentiation between the sexes is because we didn’t think that men would appreciate being given tampons or sanitary towels!). If people are interested I can post a list of what we put in them. Please know that I am REALLY not trying to big up our family by posting this, we are still extremely complacent much of the time, but we are trying and that is good. I have learnt a lot from others who do this kind of thing so I hope that it is helpful to share.
If you have faith then pray, but don’t JUST pray. Take action, however small it is.
These are only a few ideas and I am by no means an expert on these things. If anyone has other suggestions I will happily update this post to reflect them (I’d also like to know if any links aren’t quite right).
This has turned into a bit of a marathon post. If you’ve read this far, well done for sticking it out!
Jenn

Dancing on the edge of a knife

•August 28, 2015 • 2 Comments

For the last few weeks now, I’ve been dealing with something called hypomania. This is a state between normality and actual mania, which starts slowly with an increase in energy, motivation, creativity and ideas, and gradually evolves over time until it becomes a state in which you can be quite unwell. It isn’t as serious as mania by any means, and luckily I have insight, but it is still extremely difficult to manage. At first I felt great, in fact a little hypomania is extremely useful when you have three small children! After a while though, the problems with sleep that come with it, the exhaustion from the constant racing thoughts – almost falling over each other, and so diverse that it’s hard to focus on any particularly train of thought, and the fear of getting really ill is taking its toll. It’s a constant state of adrenaline, but when that has been pumping through your system for a while, eventually you just burn out and feel like you have nothing left, but part of you is still trying to drive forward relentlessly. Where I had had a relatively balanced view of myself for a while I’m now swinging between having over-inflated self-image, and thinking I’m the worst person ever. I rationally know that both aren’t true, but it’s very very hard to be consistently rational at the moment. I’m having trouble reading social situations and interpersonal nuances, and am disinhibited and regularly saying stupid things, or just being overly blunt and not managing to take in to consideration the effect that the things I say have on people – I have no filter again. Because I do have insight, even if it’s difficult to control this behaviour, it’s so embarassing and I feel like an idiot much of the time which makes me want to crawl in to a cave and temporarily give up on social interaction, yet I desperately need social contact to keep me sane.

There are lots of circumstantial things which have contributed to this happening I believe, as well as the cyclical nature of living with Bipolar Disorder, and I’m hoping that now the kids are back in school that in a week or two things will stabilise and even out and that I won’t get really ill. I had a similar episode in June, but it only lasted a couple of weeks, and responded really well to a small increase in mood stabiliser. This time it has lasted longer and I’m scared, although I saw my prescriber and had another small medication increase this week, and I have a really good therapist here which is an extra safety net. I miss England and friends who I have known for many many years, who I wouldn’t be afraid to go and have a meltdown with. I miss my family, and I miss my husband who is working unbelievable hours at the moment and is struggling himself. It’s extremely hard for close family to know how to react when their loved one is in a phase like this, because the fear of them getting really ill again makes it feel easier to distance oneself when what a hypomanic person needs is unconditional love, stability, reassurance, and help orientating themselves properly in the world. What doesn’t help with this is that one of the difficult things about hypomania is that even though in many ways your mood is elevated, it can also make you extremely irritable, which is very difficult for spouses and children. I feel so guilty about this, and have been trying so so hard, but I am finding it so difficult. I think having people to bear witness to the struggle it is to be vaguely normal all the time is important too.

The steps that I’m taking to manage this episode is that along with working with my prescriber and therapist, I’m trying to get back into eating more healthily and exercising again. I also need to work on my sleep and self-care much more. I’m rubbish at self-care, and it’s a hard lesson to learn in your 30s. I’m hoping that I can learn it properly in order to be able to be a good example for my kids so that they learn to work very hard but they don’t burn themselves out in life.

Most of all I feel vulnerable, and it’s an unpleasant reminder of how unpredictable living with serious mental illness is. A couple of weeks I felt great, now I just feel unstable. It’s so hard being scared that you’re going to do something idiotic or overspend or offend someone or damage your children when you’re just trying to stay as balanced as possible.

I hope this makes sense, I’m not sure it was worth posting about, but maybe it is,

Jenn

Different??

•August 18, 2015 • 2 Comments

I’ve been thinking quite a lot lately about the name of this blog and whether it’s a positive or negative thing. I started writing the blog as an outlet when I was in a mother-and-baby psych unit for the first time in 2012/2013 when I was pregnant with Joseph, my final child. At the time I was still incredibly physically ill as well as mentally unwell, and the title reflected how difficult it had been up to that point living with undiagnosed mental and physical illness. Within this particularly it reflected the challenges of dealing with motherhood in this context, because in reality it did and still does make me different, and mean that so many things in life have to be done in an unusual and creative way. This is the blog post which explained how it was named and how it fitted well at the time, especially with Amelie’s (who was 5 years old at the time) assessment of the whole situation: http s://differentblogdotme.wordpress.com/2012/12/23/why-different/?/. Her wonderfully unconditional accepting of our life being that bit more unusual due to my physical and mental health and the limitations we faced/still face because of it was so helpful, as I battled to accept myself in the situation.

So now I’m not sure about the name. What I don’t want to do is imply that myself or others who battle with mental illness are different in a negative way. In fact I want to help to break down barriers of stigma related to living with severe mental health problems and being a mother in this context. At the same time I want to acknowledge and explore the fact that life is different for people like me, but despite that, with the right support, treatment and acceptance life can be good, in fact in some ways there is a richness that you cannot easily find unless you struggle in this way. 

Just a few thoughts, I’m interested to hear what people think on the subject!

Jenn