The phrase ‘Self Management’ is thrown around freely by users and Professionals as being key to recovery and relapse prevention. Some people with Bipolar Disorder seem to have it nailed. They have good self management routines that work for them and are vital to their recovery. From what I read in peoples tweets and self reports they just need to odd tweak, redirection, refocus to a particular area or time out to attend to them and keep them going. To me, these are the lucky ones. I know they will have worked hard at it but my circumstances have not permitted it, I am not one of these people.
My Bipolar Disorder is Rapid Cycling. I have frequent episodes of Severe Bipolar Depression across the year interspersed with a week or two of mania either before or after. I have found it extremely hard to set up a robust self management plan. Even after many many years of illness and all the knowledge I have gained with it. In my opinion, setting up self management is easier when you are well. Although you can start with small steps when you are ill and develop further in recovery. The more robust it becomes when well the more you can draw on it when well. My problem has been not being well for long enough to set up a robust routine.
After an episode, I am dealing with residual symptoms, picking up the pieces my illness has left behind and attending to neglected business, admin, cleaning, seeing people, giving extra attention to my daughter and compensating for the impact that my have occurred when ill. I can’t fully immerse myself in a me programme. But I am starting to see how I can do both. How it doesn’t have to be perfect. It doesn’t have to read like the literature you might be given, it doesn’t have to be perfect and a few changes can make a big difference.
I went on a 10 week self management course a couple of years ago. It was full of ideas. It covered every possible aspect of the illness and every possible strategy to deal with it. It covered everything you could do to prevent and deal with Depression and Mania. There was handout after handout. It was good information but it was like a full time job. You could tell it was written by a Psychologist and not by someone who actually suffers the illness. For me self management needs to be realistic. We can do more but we needn’t do everything, most of us can’t do everything and it needn’t be perfect otherwise it becomes stressful in itself, we end up doing nothing and we don’t try. We feel like we have failed. That is my experience anyway.
In this article I would like to explore self management recommendations and share what I have done with them to prompt you to think what you could do with them to make them your own. Are there small changes you could make without having a complete life overhaul when you are too ill to get out of bed or trying to completely change the way you live when people without this debilitating illness find such things difficult let alone people with Bipolar Disorder and the additional challenges we face from day to day.
It is recommended that we follow a ‘healthy diet’. This would be 3 meals a day with a mix of food groups, protein, carbohydrate and your 5 a day of fruit and vegetables.
That’s quite a standard recommendation and my eyes almost glaze over when I read it. It’s also not very realistic for me. When I am depressed I have little appetite and if I do have appetite it is for sugar in the form of sweets and chocolate. Obviously this is unhelpful as it causes such dips and rises in energy, along with the copious amounts of coffee I reach for.
There must be a middle way. I decided since I don’t mind breakfast I would always try to have that. If I am depressed it will be toast smothered in something sweet. If I am motivated I might make muesli with some yohgurt and berries or some Porridge. If I am in between I’ll grab a bowl of standard non sugary cereal like cornflakes, Weetabix or Special K.
Lunch I just can’t seem to do. I spoke to a dietician about this as I am seeing one for IBS. I told her how lunch is usually a piece of cake or chocolate. I’m rarely motivated for lunch. It is too much for me to be thinking about making two meals a day. She wasn’t overly bothered about me skipping lunch. But we did discuss swapping my snacks. I’m now having the Nairns Oat Biscuits they do sweet ones like Chocolate Chip, Graze do good snacks, Sesame snaps. She has encouraged me to think about making eggs on toast for lunch for lunch as it’s easy and I’ve done this a number of times or even in the morning. But she’s not pushing the standard blanket dietary plan or insisting on a standard lunch and this flexibility is helpful as it makes me feel satisfied that I’m doing ok.
I always make sure I have one balanced meal a day that fits the criteria in the evening. Then I make sure I get all the food groups. I’m not always getting my five a day but I’m getting some fruit and vegetables and taking vitamins. I do hope to improve but I’m not stressing on it. It could be worse.
My motto for this article could be:
IMPROVEMENT NOT PERFECTION
And that would apply to many of the things we are talking about. You might be given a recommendation but for the first time I’ve started just doing what I can do not trying to do what’s on the list. In the past looking at the recommendation has often lead me to doing nothing or making no changes at all as it’s just too much.
What recommendations do we see?
30 minutes 3-5 times per week?????
Join the gym?????
Do a Yoga class?????
Those tend to be the standard recommendations and if they work for you great but I’m writing here for the people who don’t get on with these standard recommendations. My recommendation would be whatever you can manage although I do recommend trying to put it into a routine.
I’ve tried many forms of exercise only to be thwarted by an episode, unable to carry on and not returning to it afterwards. I’ve had gym programmes, yoga programmes of various types. I’ve reduced the pressure now and am keeping it simple. Walking. Something I hope I can continue on some level if I am ill and really step up when I am well. I started when I was ill just walking with my daughter to school 10 minutes per day. I also walked for a while with a friend but I found I didn’t like keeping up with her pace, the social pressure or being linked with someone else’s routines. I am now walking someone’s dog. It is amazing. I get to walk for over an hour, it is mindful, the forest is beautiful in the morning, the ground under my feet, and it is pet therapy. I started by putting two slots per week in my diary and was getting so much mental and physical benefit I increased it to four times per week. It is also a great way to notice what is going on with your thoughts and slow them down.
At some point I will add a resistance routine at the gym maybe twice a week at least that is a casual goal. But for now I’m taking things at my own pace and not putting any pressure on myself. I want to establish things, feel happy, feel relaxed.
Ok so I feel obliged to describe textbook self management for sleep routines as mine isn’t very good. I’m fortunate that my sleep isn’t overly bad. When it is I take sleeping pills. Evenings are difficult for me. I’m usually very tired by the time I’ve finished dealing with with my daughter and just getting through the day. I also often feel anxious which I think is something to do with the loss of my husband and being alone at night. So often in the evening I want to go to bed soon after my daughter meaning I haven’t had much wind down time or time to do anything nice at home. I do force myself to read a little in bed which I find is a great way to slow things down. When I turn out the lights if my mind is still going I try to do a mental gratitude list as a distraction and often fall asleep doing it. But in honesty if my thoughts are really too fast or I can’t sleep I will medicate.
Disturbed sleep can have a profound consequence to those with Bipolar Disorder and it is important to have a healthy sleep routine. Self management experts suggest you:
Reduce activity before bed
Read or listen to music or the radio at low volume
Reduce screen time-I did actually put a timer for my phone to go off at 9.30pm
Have a warm bath with herbs (Lavender Rosemary Lemongrass)
Make sure your bed is warm and comfortable
Empty your head of ruminations or plans onto paper
Do not drink Caffeine 3-4 hours before bed instead try a milky drink
Do not eat rich food in the evening
Use images of tranquil places if you can’t sleep
I have tried to list suggestions that I actually agree with that are practical and don’t require too much effort. For me a bath at night would be a lot of effort but I might use a Lavender oil burner as an alternative.
Activity level is probably the key self management tool in Depression and one of the most difficult to implement due to difficulties with motivation, energy, fatigue. But manageing it can have powerful effects. I am familiar myself with thoughts of:
“I should be” followed by
“I don’t want to”
“I can’t be bothered”
“I can’t face it”
“I can’t move”
I also find that staying focused for long enough to initiate activity can be difficult so even if I get close to making a decision to doing something, I get ‘stuck’ where I am, in my thoughts, unable to move and have to start the whole process of self persuasion all over again.
According to the experts, activities in Depression should be balanced around pleasure and achievement. For me, activities should be based around whatever it is you can manage. I find that managing to do some simple activities will automatically bring some pleasure. Achievement brings a sense of pleasure in itself. I tend to think about trying to do ANYTHING I can realistically do.
I was looking at one of my handouts from the self management course and there are two pages of things you could do for self care and pleasure and there is not one of them I could do in a depressive episode. So perhaps we need to be thinking about what is our self management when depressed and how can we step it up when we are well.
For example trying to watch a movie at home for pleasure when depressed and going out to the Cinema when well and trying to maintain. Looking up some art that interests you on the internet when depressed, going to a gallery when well. Washing your hair when ill, going to the hairdressers when well. Speaking to a friend by text or phone when ill, having them over for a cup of tea as you are improving.
So back to self management in episode. There are two approaches I have taken so I will share both. The first is scheduling which I do in half day portions. When I have managed to get up, I will divide the time I have into manageable segments and assign activities to the time segments. Activity is stimulating when you are Depressed and that is what is needed most. It might look like this-
10-10.45 shower dress make bed
11-11.45 wash up and tidy surfaces
11.45-12.45 internet food shop
They may look like incredibly boring, pleasureless tasks, but I’ve found in Depression they can be very rewarding. My environment gets completely chaotic when my mood is low. These are big achievements. I find that once I’ve done one it is easier to move on to the next. It’s getting started that’s the thing. There are always many outstanding things to do as usually I’ve gotten behind on things on my way into a depression so I don’t usually run out of things to do. It is good to add some relaxing pleasure options in too like reading or craft if you do craft whatever your interests are.
I don’t always complete the list. I don’t always do it in order. But it gets me moving and I get some things done. I can’t do this when I’m so depressed I’m nearly Catatonic but there’s a point in Depression where I can start to push myself. This is a starting point to recovery. A starting point to self management. The building bricks to the next steps of being able to do things outdoors. In the meantime you are functioning at home, getting your home life back together, feeling some accomplishments, moving around, finding some pleasure, gathering strength, suprising yourself in what you can do.
The pleasure and sense of achievement you get from your morning list often gives you some motivation and energy that you can use to do some ‘nice’ things for yourself or with yourself in the afternoon.
These days I don’t always use the schedule. I either just write a list with a few things on it or I just start being active. But on reflection the scheduling is less chaotic and more gets achieved. Things work better if I do use it. There will always be a call to go back to bed. For me anyway. And I don’t deny myself that if I have made some achievements. But I try to put a limit on it. I get a certain amount of things done. I set an alarm and give myself a specific amount of time and then try to get up again. This can be difficult and a bit of a setback but with the fatigue of depression sometimes I don’t really have an alternative.
It’s an overused suggestion but still a good one, that finding a creative activity helps. Anything will do. I’m not skilled at all but I’ve tried various things at home, drawing and painting, sticking sequins into a pattern onto a piece of wood with wood glue. This last episode I found collaging. I went onto a recycling website and got people to send me their old magazines and made collages depicting depression and mania. It was so therapeutic cutting out all the words and images and arranging them how I wanted to.
In terms of contact with other people I don’t have much. I have one person who I text regularly throughout my episode who understands me best. Family aren’t nearby. There isn’t really anyone to come over. I probably would allow a close friend over for a cup of tea. I’d probably find it difficult to go out. But that could be a goal. If I’d managed to shower and dress on the schedule then it would be a possibility. This is an area I would benefit from looking at. Using the small social network I have.
As I do more inside I find gradually my ability to do more outside returns. I’ll gradually start going to the shops, post office, seeing people. So keeping some self management during an episode is clearly important. Activity when well will depend whether you are working, volunteering, what other commitments you have. Balancing activity is of course important to reduce risk of hypomania. I was working until my husband died of Cancer. Since then I have been Volunteering in a school for the Deaf, writing and keeping busy as a Mum and trying to self manage.
I do recommend some sort of work for self-esteem, sense of accomplishment and mastery, a role. Even just a few hours a week. It also provides social interaction if your social contacts are limited. There is something very valuable about giving. There are many exciting volunteer options it can inspire you for your future. I don’t think self management can be all about pleasure, exercise, sleep and getting your diet right. Those things are key. But for me, my life can’t be all about that. Even with all the time in the world I’d never get it perfect so I might as well put some other things in my life too. There will never come a time that you’ve got it all so right that you can add something else. Maybe paid work needs to be at the right time but volunteering for a few hours you need to be well enough to do it but not perfect.
The good thing about volunteering is you can walk away if you become unwell. That is the reason I haven’t taken a permanent job presently. I need a longer remission time to feel confident enough to do that. But the self management is developing and I’m happy with that. Finally I’m away from my all or nothing approach and I’m allowing myself to bring things into action at my own pace. But it’s allowed me to explore new skills like writing. I would never have written a book if I’d been in my permanent job although I do need to get off my backside and find a publisher.
Managing activity in Mania/Hypomania is more challenging in some respects. Everything is going so fast, you are so full of ideas and energy of motivation, getting so many things done, you are faced with the opposite task of trying to slow down and reduce activity. You also need to have spotted it. Not only spotted it but be willing to change it. I think a willingness to change it must come from knowing the consequences of what will happen if you don’t. In NA Narcotics Anonymous they have a phrase, their definition of insanity as being:
“DOING THE SAME THING AGAIN AND AGAIN EXPECTING DIFFERENT RESULTS”
Not managing Mania effectively will nearly always end in disaster. So it is vital to attend to early warning signs and act accordingly. I fully understand the desire to go along with the buzz, to go along with the creativity, the productivity, but the end result is never good. And the symptoms often become unpleasant as the mood elevates in any case. So as soon as you notice your mood elevating is an ideal time to do a costs and benefits evaluation as a sort of reality check. You can keep coming back to this as the desire to override your management strategies comes into play.
Useful management strategies can be:
Reducing activity level
Making time for calming activities
Simplify your routine and stick to it
Using the word “STOP” internally if you notice thoughts racing or activity level increasing again and find something else to focus on
Try to eat regularly
Practice listening to the person you are with instead of talking, sit on your hands, look at their face, tell yourself to listen
Don’t make any big decisions without seeking 3rd party advice
If you are excited by a plan or an idea, wait 48 hours before making a decision. Write the idea in a book with advantages and disadvantages
Controlling stimulation through your five senses is also something you can employ. For example:
Sight-You may like to simply sit and close your eyes to reduce stimulation. Sitting and watching a candle can help. Or imagining a peaceful scene.
Smell-I am a great fan of Lavender oil. Recently my mood was elevated and I couldn’t find the burner. I was desperately trying to slow myself down so I simply lay on the sofa and periodically inhaled it from the bottle. You may have your own calming scents.
Taste-Some people find certain drinks calming. I am not one of those people but I know people who really do find relaxing teas and milky drinks another useful addition.
Sound-Music can have a profound effect on mood. When my mood was elevated recently I didn’t realise quite how much the music I was listening to was elevating it further. Relaxing music is good, at a low volume or even apps with relaxing sounds. Some people might like to lay down with ear plugs in to shut out stimulation completely.
Touch-Can be used in a number of ways. Pets are wonderful. If you don’t have a pet then a sensory art material. Not to make something just to squeeze or mould, clay for example. Or even a decent stress ball. Swimming if its done calmly, mindfully focusing on the water. Or a massage as long as you are clear it should be relaxing and calming. Finally that good old failsafe a warm bath. I always find it a predictable suggestion but you can treat yourself to something really sensory from Lush or some other kind of addition that will turn it into a spa like experience. I find if my mood is elevated I have to force myself to stay in and benefit from it. To get the benefit from a Lavender oil bath you need to lay there for 20 minutes.
If none of it works and you have emergency medication, don’t forget to use it.
Watching for triggers
Negative thinking is probably the biggest trigger for depression and the biggest maintaining factor. CBT is really helpful but again in episode most people don’t want to get out a pad of paper and fill out all the columns to analyse a particular thought. If you can use the STOP technique here that I introduced in mania. So you notice yourself ruminating on “She didn’t text back, she doesn’t like me anymore, she thinks I’m a freak”. If you can put a STOP in and just ask yourself “Is there any other possible reason why he didn’t text?” You might then find yourself able to say “Oh yes she has a full time job where he is a manager, he is caring for his sick Mum, he has a football match today, he is taking his son after school”.
It might not be enough, you might still be waiting for that text. You might need to repeat the process the same day. You might need to ask yourself “What is the evidence he likes me?”. Play around with the idea. But putting a STOP in and forcing yourself to reframe can help. At least it works for me. Another thing that works for me to a degree is trying to limit rumination time. I say to a degree as its hard to implement. But set 2 times e.g 11am and 5pm. These are your worry times where you have 10-15 minutes to ruminate. The rest of the time you need to use the STOP technique and say no it’s not time, I’m doing ………whatever your doing now and worry time is later.
Anxiety for me comes in the form of shallow breathing mostly and a feeling of unease and I need to address it more consistently as I tend to push on with it until it triggers depression. Although now I’ve seen that happen I’m being more mindful. The only things I’ve found useful for my anxiety are sitting down, laying down, following my natural breath in these positions, and writing a journal.
Perfectionism-I’m putting this in, not because it’s so much of an issue for me now but it used to be so I guess it’s been part of my journey. Someone mentioned to me that it’s a common trait in people with Bipolar Disorder. I don’t know if this is true but what I am going to say is relevant whether it is or not. It is simply about your best being good enough. My self management is more helpful to my illness now I have accepted that. My ideals for it used to be so high that if I didn’t meet them I felt like I had failed and wasn’t helping myself.
You would think I would have covered this already. The reality is, I’ve done Mindfulness courses, read Mindfulness books, I know how to do Mindfulness. It can be of enormous value as a treatment support in Bipolar Disorder so if you can do it and it suits you, your Physician supports it and you like it that’s wonderful.
The reality for me is that often I didn’t really like it. I had a few experiences of unpleasant imagery and it just wasn’t for me. But I don’t think that was the main reason it didn’t work, it was just the timing and my ability to be disciplined to incorporate something like that into my home life.
For me I am exploring how to find mindfulness in different ways. Walking meditation is an accepted for of mindfulness for example. This I love. On the commons, in the forests. Mindfulness that isn’t of the traditional lying down sort is something I would like to explore further.
But it doesn’t have to have the ‘Mindfulness’ label. Basically any form of relaxation can help with Bipolar Disorder and is worth exploring and you will proabably be more inspirational than I am at getting it into your routine.
It is recommended that you build up from 5 mins 10 mins 15 mins a day etc It is supposed to be a daily practice. But again we are not in the business of setting expectations and failure. See what you can do.
At the end of this article I am attaching a basic sort Mindfulness exercise I do like. You could use this for both polarities and as a STOP exercise for negative ruminations.
On my walks on he common, I find I naturally step into a mindfulness section when I am ready. I become aware of the birds, the trees, the terrain, the sky, the weather. I’m combining this with the use of positive affirmations and it is having excellent results. I complete feeling peaceful and contented.
Protective Factors refer to the things that protect you from becoming unwell or help you to recover more quickly or in some case keep you alive, I am talking about my own case and that is my little girl.
I’m going to write a list of some general protective factors but it might be worth thinking about any that are specific to you that are not on the list.
Taking medication regularly
Contact with family
Contact with friends
Contact with an animal
Regular routines (sleeping, eating)
Being organised/avoiding chaos
Not taking on too much
Taking a regular break/time out/holiday
Keeping a journal
Taking part in regular exercise
Enjoying a regular hobby
Forward planning for celebrations/holidays etc
MOOD RATING SCALE
Getting to know a mood rating scale if you don’t already, can be really helpful both to identify when you are going up or slipping down and also to communicate with Professionals as they should be familiar with them and if they are not you can share. This one from Bipolar UK (see below) is easy to use and you can always make a more personal version with your own specific symptoms. If you use the mood rating scale, you can make timely interventions in terms of increasing your activity level or decreasing it and be mindful of keeping your self-management approaches established.
It is hoped that if you are well you will now be:
Making some improvement to your diet
Introducing some exercise to your week
Be ready to maintain structure when you are Depressed and increase activity when you are well
Be proactive at sensibly managing a hypomanic mood
Be proactive at maintaining good sleep hygiene
Have some simple strategies for dealing with other triggers
Explore using a Mood Rating Scale if you haven’t already
Trying a Mindfulness Meditation
Which is probably a good place to end. So if you came to this article thinking your self management wasn’t very good I suppose there are many different possible outcomes. You may be thinking actually it’s not bad, it’s better than hers in which case good for you. Or maybe you found this article helpful and as I intended feel the subject has been a little demystified. And more importantly you can see with an illness like Bipolar Disorder you don’t have to do it perfectly, any effort will have a positive benefit and is a starting place from which you can develop who knows into an athlete or an expert on diet or outstanding at a particular thing. But to me you need to lay the seeds you are capable of laying at a particular time remembering things go up and things go down. If this has helped one person that is good.
Ideas explored deeply in my upcoming book “Finding My Sorrow-A Memoir Of Extraordinary Love & Journey In Grief & Bipolar Disorder”.
Grief in those with pre-existing Bipolar Disorder is an area which is poorly addressed in terms of literature, understanding and practical support. Grief Counselling for Bipolar Disorder should be provided by someone not only trained in Grief Counselling but also someone who has a good knowledge of the condition. These people are hard to find and often sufferers are referred to standard bereavement services and it is pot luck who they are assigned if they get any help at all.
You will hear in my story how much of a trigger grief became for me. It is widely stated and obvious that “grief is a trigger” with bereavement being such a stressful and traumatic event but the impact of it and medium-long term effects on the illness has not been explored in detail in the mainstream. This prompted my own analysis and I have come up with a theory.
I will be interested to find if this resonates with any other users as they examine their own journeys. I appreciate everyone is different even within their Bipolar Disorder so am sure there will be many stories but I believe my simple proposition makes obvious sense.
If you find, particularly with reference to Bipolar Depression that the ideas make sense to you, please email me email@example.com as I am collecting a list of future interest for sharing thoughts on it with a view to possible workshops on self managing this area. This is simply as an expression of interest or to share your thoughts. It is completely confidential.
In 2015, I was living with my soul mate, a happy somewhat insular life with our beautiful then 6 year old daughter. I was working 16 hours as a Speech & Language Therapist and after a somewhat yo yo pattern of sickness, had achieved some stability and was in work regularly and working hard.
In 2015, after prolonged pains in his bones and back, my husband received a Cancer diagnosis with months to live. Within 10 weeks he had a Basilar Artery stroke as a treatment complication, went into a coma. After a week we were told he would never wake up and the life support was withdrawn. I became a lone parent Widow.
My initial response, was typical, survival instincts, organising, getting things done, attending to my daughter. Shortly after this the Grief came. I attended counselling for 12 sessions and felt things were resolved. Then I almost felt cured and left with a sense of elation and gratitude. I carried this gratitude for the next couple of years, rarely revisiting grief. Making trips round the world, Barbados, New York, Florida. Paul would have wanted us to be doing this I would say. Everyone I met I had a gratitude speech ready about my life with Paul. I started taking my daughter to festivals and gigs. Let’s live for today, let’s enjoy now. We barely had a moment to breathe I was always booking something. I never felt any bitterness or anger only thanks for what we had.
But there was also the reality of my illness. These euphoric jaunts were punctuated with frequent crippling depressions. I’ve never had obvious triggers so initially I just accepted them as part of my rapid cycling. Finally I had to see that the frequency had increased and despite optimum medication intervention they were continuing to arise. Grief was a trigger, grief was triggering episodes. But what Grief? Where was it?
This was answered when my husband’s Mum died. I had an excessive response and was dissolved into a state of grief that wasn’t moving after the funeral and beyond. It was classic delayed grief. I returned to Grief Counselling. It was my gift that the counsellor was a trained Psychologist with good knowledge on Bipolar Disorder as well as an excellent grief therapist. I saw him for 4 months and whilst I was doing this my theory on Grief and Bipolar Disorder emerged.
I believe Bipolar Disorder itself delays grief. Due to the emotional extremes we experience there is little space for grieving to take place. This would be especially true for someone who rapid cycles or suffers repeated episodes across the year. There is a clear and distinct difference between Grief and Depression. When we are in a state of Depression we are out of touch with Grief. It is not accessible due to numbness and disconnection from feelings. When our mood is elevated we are so concerned with euphoric, happy or creative goal driven distractions, it is also nigh impossible to access Grief. We may only see glimpses of Grief in either of these states and then it disappears. Or more likely may not notice the presence of Grief at all but it is likely that it is there.
Then in the periods of remission I am usually slightly above normal mood and full of gratitude to be back to health, recovering, catching up etc, there is not room for Grief there either. So when do people with Bipolar Disorder go through a Grief process? Particularly those who have Rapid Cycling. We need to find a way to over ride the mood symptoms so we can grieve properly. Find simple techniques to observe and process the Grief despite the mood symptoms so we can move on and avoid being stuck in a never ending cycle of hidden Grief triggered episodes. In my case I have done that whilst writing my book with live examples during illness. It is an ongoing process but now I have the simple strategy underway I believe I can reduce the number of Grief triggered episodes as I am working through my grief. It is not sitting under the illness anymore. I have brought it into the present.
The bare bones of the strategy is simply coming to the awareness. Not just intellectually but on a practical, psychological and physiological level. Grief needs space. You need to train yourself despite manic symptoms, despite depressive symptoms, to notice where grief is trying to break through. For example that sense of unease in your stomach like something is wrong. I find I experience anxiety which if I stop and employ certain strategies like stopping and sitting and checking in with myself and trying to identify the source, if it is Grief related which it usually is, I may start crying and become aware of my thoughts around my loss. Whereas the typical response I might normally have is to keep moving.
When feeling depressed just forcing a 5 minute check in many of the days on a week as I can manage, writing at the top of the page “How am I” can have a profound effect at connecting me with my feelings. The other thing with Depression is the tendency to curl up and roll over and ignore any discomfort of feeling. Just focusing on it for 5 minutes can help to connect with reality and see if there is a grief component. The Manic response is to be constantly moving onto something, something that needs doing and something more interesting. But again it is possible to ground and find your Grief by making some space.
Simple things to try:
Activity 1 When anxious/when depressed/when manic/just because! Making a focused time. Sit and do nothing but be present. Stay exactly where you are for 5 minutes, see what comes. It’s very simple. It’s all about making space. I would bet it will be tears. We have a lot of unspent tears and need to allow them to come out in the spaces we will make for them in order to override the effects of Bipolar on grief and allow that grief to be released.
Activity 2 for daily practice 5 minutes journal time “How am I?” check in with yourself. As little or as much as you want to write. But make that check in.
These are not rocket science. But actually when you are in a state of Bipolar illness do you need rocket science? These simple strategies work and have facilitated my Grief process enormously. These are the main two strategies I am using. When you are in an episode of illness you might not be able to do a whole mindfulness activity but you can just sit and notice for 5 minutes. You might not be able to do free journaling but you can answer the question “How am I?”. These are all the things that I have needed to do. Cultivate some discipline around these very simple things.
You might be surprised at the things it triggers and be prepared that sometimes it may be an intense emotional experience. But at the end of it you will feel better and you will have found some of your sorrow and processed it. I used to like writing about it afterwards but I like writing and I was writing the book to share. But if you think that would help do that. Look after yourself, wrap up in a blanket. Sleep. Sometimes a sugary tea will be enough. When I first started with these techniques I had some strong reactions. These days I may only spill a few tears for 5 minutes and move on.
I have processed a lot of my Grief now. It will always be with me but that is ok, you can’t keep hold of all the happy memories without being aware of the loss.
The effects of Parental Bipolar Disorder is not extensively covered. Most articles understandably are about managing the condition and ‘doing for’ the sufferer. But many sufferers out there have children and it is easy for their needs to go unnoticed especially given as they are often silent about them and do not express that they have any. Every family has different experiences with children with different personalities but many of the core issues are the same even if they manifest differently in the child. I am going to share my personal experience and some of the things we have learned with the help of a therapist in the hope that they might be useful to someone else.
6 weeks after my daughter was born I had a depressive episode and went into a mother and baby unit for a few weeks to change my medication at speed but it was quick and did not seem to have an effect despite my initial worries. My husband came every day and the nurses facilitate as much normal interaction with your baby as possible. When she 18 months, bigger and more aware, I was in a mixed state and needed a residential treatment for 3 months, I was overwrought with worry about attachment but also very unwell. But my husband brought her to see me everyday and I was reassured by professionals that as long as the child had one strong attachment there shouldn’t be a problem. Obviously this has implications for those with young children who are single parents.
The professionals were right though we picked up the pieces and carried on as normal and had no problems in our relationship at all. There were no further admissions in the years that followed and during times when I was very ill at home my husband stepped in and she appeared to find this security enough to compensate for the fact that I was ill and out of action.
The problems appeared after my husband died. Piglet (that is her code name as she likes the character from Winnie the Poo), has found it much harder to cope with my illness since I have become a lone parent. She has lost her support system, her Dad who would take over as the pillar of strength and security when Mummy was ill. Now she is effectively home alone with it as so many children are. It started about 18 months ago. I was rapid cycling quite fast. She appeared to be coping as she has on all subsequent episodes. But as I came out of the episode the problems started. She had a genuine fall and fractured her leg. But following this there were two questionable hand fractures.
The Consultant said it was unlikely the hands were fractured at all. They had looked like it on the emergency room x ray but in the Orthopaedics follow up 10 days later there was nothing. He said the amount of pain she was reporting was excessive. Too high compared to what the xray showed and was anything going on at home as he felt it was Psychosomatic. Some time after this she started vomiting her food and becoming randomly more labile in mood. She also didn’t want to leave me, becoming distressed if she had to and was declining sleepovers which she previously loved.
I found her an excellent counsellor thinking it was delayed grief. But as we went through the process the counsellor reported that she felt a more present issue than the Grief was Piglet dealing with my Bipolar episodes. She has never been very good at talking about her feelings and obviously with this she didn’t want to upset me. Her emotions were coming out physically and in behaviour. Interestingly she waited until I had recovered so she knew I could take her anger.
She attended counselling for a year and we did some really useful sessions all together looking at the illness, talking about it, learning about it and acknowledging it, as well as finding useful strategies for Piglet. It really made me think too. We get so absorbed when we are in an episode and no matter how much we love our children sometimes even meeting their basic needs is hard let alone considering what their emotional needs are resulting from what is happening to us. If they don’t show signs it is easy to think they are ok.
Everything went back to normal until I had a very severe episode this Autumn. I was virtually catatonic for the entire first month when Piglet was returning everyday from her first month at secondary school. A time when you really do need your Mum and your routine, she had none of that. I continued to be ill for a further month. Piglet appeared to be fine. Coping with her new challenging travel arrangements, being in a bigger school with many many more children, new children, new teachers, more homework. As soon as I was somewhat recovered from the episode it started, the vomiting, her being moody, exhausted, not wanting to get up in the morning. It took me a while to realise what had happened. This was the transition from me recovering to being well and all my mothers instincts kicking back in.
I just looked at her one day and couldn’t believe how fragile she looked. It was this post episode stress thing again. I named it. She denied it. I pushed a little and said “Look of course its been stressful, you’ve had all this on and your coming home to a Mum with Bipolar Disorder who is not well and not giving you all the support you need”. I put everything I had into re-establishing a routine, dinner at 5.30pm, bed at 8.30pm, asked the school to give her a break from week day homework and just giving her my full 100% attention. I offered her to return to counselling which she declined. But she really responded to those normal things that I just can’t put in place when I’m ill. She fends for herself a lot when I’m ill as I think a lot of children of Bipolar parents do. We just manage, somehow get by. But these are little beings with big needs and it has to come out somewhere somehow.
I feel lucky that we have come to the point where we can talk about it. Children with Bipolar parents tend to want to protect the parent. Initially they may feel they did something wrong. Even once they are past that stage they don’t want to make it worse. They want to protect you. They notice the parents fragility and that is why they hold in their own feelings until the parent is strong again and then it just comes out. My daughter has spent a lot of time denying that my illness has any effect on her whatsoever or that I am difficult to be around in any way. I don’t think she wanted to upset me.
I am still having to reassert “It’s normal to find it stressful to live with someone with Bipolar Disorder”. “Coming home everyday from school and finding me exactly where you left me cannot be nice”. We are slowly starting to laugh about things and this time she gladly accepted my post episode nurturing and did not deny my assertions that she was suffering from stress and exhaustion. I think she even used the phrase “I’m feeling better now” by which of course she inadvertently acknowledged that something was wrong.
I’ve just had a significant manic episode and she appears not to have found that difficult at all. I always think that’s easier for her as I can be super functional and if not super extravagent and superfun but I am mindful that it is still a big change and may be somewhat unsettling. It is something I want to explore. It stands to reason it will be effecting her I’m just not sure how.
I’m not sure how much I can change ‘in episode’. But I do want to look at her support systems and have them more robustly established. We did a little bit of work on this on therapy and used some during the depressive episode but it was still a little ad hoc. I’d like to think I can try and find the energy to keep her evening routine a bit better during episode. But that is easy to say now and harder to do when I can’t get out of bed. Some of the things below are things we have done that have been useful that might be food for thought. You will need to adjust for age.
Strategies for supporting children of Bipolar parents
Brainstorm “What does Depression look like?” “What does Mania look like?” Try and get the child to find words that go with each polarity. What is Mummy like when she is well? Get the child to find 3 positive words to describe Mummy? Mum find 3 positive words to describe the child.
Self Care Take a piece of paper each and spend time writing down and drawing images to show the things that make you feel good, things you like to do etc.
Who can you call? Agree together 3 people the child can call if they are worried about your behaviour or want to chat to someone when you are ill. Get them to store these numbers in their phone if they have one. Ideally the child will choose and you will agree but if you are really not happy you could say “Can you think of anyone else?”. Emphasise to the child that it is really ok if they need to call these people when you are ill either because they are worried about your behaviour or simply because they want someone to talk to.
It is also a good idea to tell the child that Bipolar disorder is an illness like any other illness. It is not a secret and they can talk to whoever they want to talk to about it as wherever they can find some support is a good thing. Some children might even need to know that you can’t die from it, they can be secretly harbouring this as a worry but be afraid to ask. Ultimately we all have to find our own way to parenting the best we can whilst suffering this disabling condition. But the key thing in my opinion is communication. Communication takes the fear away. Communication breaks some of the power of the illness down and gives you and your child the feeling like you are back in charge. And finally of course Communication is the key to any good relationship. Despite everything we go through, I am proud to say I have the most amazing relationship with Piglet. I’m far from perfect when I’m ill but I make up for it when I’m well, we have the best of times, she has the best of experiences. We adore each other and I don’t think she’d want anyone else. She has said she thinks I’m brave and she is proud of me the way I battle this illness. I just want to ensure that her needs continue to be met and the impact on her is reduced. This will be vital in maintaining her mental health and reducing her risk factors for inheritance.
My soulmate died of Cancer over 4 years ago. It was sudden and unexpected with under 3 months from diagnosis to death. My whole life changed overnight and I was of course completely devastated. My grief has not been linear. It has been broadly in 2 separate periods, delayed by my Bipolar Disorder, primarily episodes of severe depression. I am 44 years old.
I have not had sex or been on any significant dates since my husbands death. I have not had any sexual encounters. This has been my choice and I am not ashamed of it.
I am not a freak, I do not feel desperate, cranky or frustrated yet sometimes I feel an unspoken and sometimes spoken pressure from others that it is something that I ought to have done. It might be good for me.
Earlier on in my grief, perhaps in the second year, I did feel wanting and since I suffer from Bipolar Disorder when my mood was slightly elevated I went thorough periods scouring the usual sites, Tinder, Bumble, unsure of what I was looking for, sometimes thinking I was looking for dates with a potential partner but mostly looking for a hook up. At those times I may have slept with a delivery man were the opportunity to arise!
I set up a number of dates and then cancelled them either when my mood dropped, I lost my nerve or when the potential date annoyed me in some way before we’d even met. I met with one guy. He was a “Serial Monogamist” (great choice, that!) who engaged in several relationships at once and promised to satisfy all my needs. It went very well but when we met and I told him I was free on the weekend, he informed how new women to his ‘hareem’ were allotted weekdays only and the regulars were given the weekend. You can imagine my response, I politely told him to “stuff it” and that never happened. I do have my pride.
After these periods of exploration my desire to engage faded. I decided I didn’t want to set up something cheap and meaningless, seedy even. I was worth more. The touch and intimacy that goes with sex in that context would have a different flavour than that you get with someone you love in any case, that which I had had for the previous 11 years. It wasn’t what I wanted. I need a connection of mind, body and soul, it might sound slightly sentimental. But when you have experienced something so whole and complete, anything else feels like settling. If I was 25, partying, drinking or smoking dope, connecting with someone with the right equipment might suffice but as I am now, I think I would feel a lack and I would rather a complete absence than a lack of a complete sense of fulfilment.
I am quite capable of meeting my own sexual needs anyway and have found that to be the case since I realised that the trawling the dating rooms for something light was not for me. I have had no compulsion to seek it even when my mood has been elevated. I miss another person but it is my person, the person for whom I still grieve. It won’t be a stranger or someone I get to know superficially. I want the connection I had or at least the sort of connection you get with someone you love. I want to feel a connection of hearts in the bedroom at the same time as the connection of skin.
Recently I questioned whether my bereavement had altered my sexuality having a “crush” on a girl who was more straight than anyone I’ve ever met. But I realised in my grief counselling that I was trying to choose someone, something that was completely different to what I had, even as far as their physical manifestation that somehow felt ‘safe’. I’ve never been attracted to women. They also had characteristics of my deceased husband. Our friendship was similar. Part of me is maybe still not ready for a relationship either. The loss was so much, I know I can’t replace it and I have some fear about what will come in its place, what another man will be like.
I get asked by people who haven’t seen me for a while if I am seeing anyone yet. They want the best for me. They want me to be happy and they assume that this would. There is a little discomfort in this question and I find it a little irritating as it doesn’t really go anywhere when I have to say no and I have little motivation to explain my reasons. I just can’t be bothered. My Mum is constantly choosing celebrities for me to marry and I have fallen into this practice sometimes become obsessed with a particular rock star for a couple of days thinking we will be together. Again this seems to be me choosing something that won’t actually happen. It is safe to wonder and be a little delusional.
It is extremely hard for me to meet a real person in any case. I am a lone widowed parent with little childcare support managing my own mental health challenges on top and looking after my wonderful school age child. I have a small friendship group so don’t get invited to many parties to meet people and that is how I would like to meet someone. I want “The Perfect Chance Meeting”. I’m not keen on dating apps and I don’t have the time to invest in that process. I know it can be successful but I also know a lot of time is needed to go through all the duff dates to find that rare gem and I don’t have time to go on all the duff dates.
There is the additional problem that my soul mate was a truly outstanding and individual man. I don’t know what I’m looking for. I don’t know what I want. I don’t have a type. Where do you start with that? This distinct person needs to just arise before me. The right man, the unique individual needs to crop up. He then needs to be prepared to share me with my daughter. She will accept him, she wants me to find someone though if he has a garden and a dog he will get more points! He needs to accept my Grief and Bipolar Disorder. But he will receive a lot of love, have alot of fun with us and be with quite a unique individual in return. I’m not looking for somebody the same as my husband. I know that won’t happen and would be a foolish endeavour, impossible in its mission from the start. Just someone kind, intelligent, emotionally insightful and fun to hang out with, off the top of my head.
I don’t know when or if it will happen. But in the meantime, I am ok, I am fine with it, I am not wanting and I am not ashamed. I don’t need a man in my life to be happy. I have enough to focus on as it is. In becoming my better self-managing my grief and my mental and physical health, being a good Mum, being a better daughter, a better friend. We have a lot of roles in life in addition to that as a wife or girlfriend. These require work and time and are fulfilling, and in completing them I will be a better wife or girlfriend when the time comes. Although I think losing your spouse probably makes you a better wife or girlfriend as you will value what you have more second time around.
I have written this article for any women out there in a similar situation with similar pressures so they know they are not alone. There are so many widows who choose to quickly enter new marriages, new relationships, need to connect with men during their grief. I respect their choices. But I am in a group of widows whose choices are not always respected or understood and are even sometimes pressured by other widows. I wish you the best on your ongoing journeys and whatever they will bring.
A follow up post to “Who Put Razor Blades In The Ice cream”
When I was a child I wanted to be an actress. I was talented. I had done it since I was about 5. I had good feedback from drama teachers and was in a local amateur drama group where I always got the main parts, I could learn lines overnight. I remember one time, when I was about 16, the entire play was just me and another young guy. I played in a theatre and in halls. On my 13th Birthday I recall the joy of a real dressing room with a light bulb framed mirror and a delivery of flowers. I felt like a star.
When my special kind of extroversion started to become crushed in my teenage years and I experienced dark, depressed moods, that were different to normal teenage angst, my life started to crumble. I look back on my school life with real sadness. I wasn’t happy at all. I felt very alone, coming from a very happy household and a mother who’s life’s mission was for me to be happy, I didn’t feel able to share it with anyone. It was my secret.
I am under the impression that people look back on their school years with smiles and laughter. I look back on mine with shame. I was ashamed of who I had become. I still feel like it’s something I should hide. I still feel people oughtn’t to know how unhappy I was in school. How I became a completely different version of myself. I lost myself and in doing so I lost my best friend. These things are catastrophic when you are at school and I didn’t make peace with it until about a year ago. I also still get into a mindset of thinking that people will leave me if I am depressed and it’s only slowly that people’s behaviour demonstrate to me that that is just a deeply buried negative cognition.
Joining college for A Levels was better. I had a friendship group where I felt I could be myself more. But I was plagued with darkness in between and beneath the good times we had. I think I got through my A Levels self medicating, partying and feeling better for my good friends. But I’d stopped acting and I didn’t know what I wanted to do anymore. I was studying Psychology for one of my A’Levels and in the typical way that people with a dysfunction sometimes do, entertained ideas of becoming a Psychologist. My Uni application form was a mess, I’d applied for Psychology, Midwifery, Drama and a mixed Arts and Sciences course at Central School Of Speech and Drama.
I had taken a year out to travel. But I’d had a massive party whilst my parents were away and there was an incriminating message left on the answerphone pertaining to the use of drugs. When my parents got back my Dad was chilled but my Mum was not. We had a huge fight and I thought “Fuck it I’m moving out”. It was a little impulsive because it then meant I had to get a job and use my money to pay rent and couldn’t save money to go travelling but I enjoyed my independence and at least I could be depressed in peace when it happened.
When I went to my interview at Central, the course I had applied for was no longer running. Buy they felt I would be a good candidate for the Bsc Hons in Clinical Communication Sciences which after 4 years gives you qualification to start to practise as a Speech and Language Therapist. I had to make a separate application for interview and exam as the course was oversubscribed but I got a place so thought it must be meant to be. I moved to London.
I remember a distinct point, doing a class presentation when my communication failed me and it was clear to me retrospectively that this was the illness creeping up. I’d always been outstanding at presentations and I was well prepared but I suddenly felt cluttered in my brain. I couldn’t think what I wanted to say, couldn’t process my thoughts, couldn’t concentrate, nothing made sense even thought I knew the subject matter well.
After missing classes and eventually weeks off at a time with a classic depressed then hypomanic pattern, being away from home gave me the freedom to do what I needed to do. Seek help, see a Psychiatrist, get a diagnosis. It wasn’t difficult for them to make and from what I knew myself then about mental health conditions by then, it was no surprise to me. So in a way it was a relief, I felt hope about getting treatment.
I was probably one of the three strongest students clinically in my year and I got 3 jobs whilst others were still looking. Academically without the illness I could probably have got a first. These were heavy Science, Psychology and Linguistic based subjects and I didn’t do enough reading or revision and missed a lot of classes but still managed a high 2:1. I was happy with that anyway.
I did some great things in my first job interspersed with a lot of sick time. When I was there I worked hard and performed well for the most part. Except for when I was there and should have been at home but felt too bad to say so. I just realised I’m supposed to be lamenting here and it’s not ALL bad.
I think the sorrow comes from what it was like when I came home from work and how I felt inside. I see people without the illness as having a normal social life and doing life giving activities. I came home from work, I drank, I smoked, I became extremely hungry because of it and developed Bulimia as my way of compensating for the way I was eating (and other reasons probably). It was lonely. I was deeply unhappy. I was hanging out with people purely as company to get high with no real interest in them at all other than one of them dealt coke.
It was convenient as they were in the pub opposite my home, everyday, so it was effortless to get it and the guy had a soft spot for me and was always keen to have a young girl hanging on his arm so I often didn’t need to buy it. Eventually I would end up in an episode and I grieve the repeated chunks of time lost in states of Psychological pain and distress, the yo-yo psychiatric admissions and constantly pressing the pause, play, rewind buttons on my life.
I grieve today for the girl who was in such a mess and lost most of her 20’s. I’m sad she was unhappy. I’m sad her progression in life came to a standstill due to a mood disorder that was hard for the doctors to manage and her own inadequate coping strategies. I am sad she had so much potential and it was partly wasted and partly killed off by the disease. I wish she’d had more solid confidence and self respect.
My A Level friends were less than impressed with the company I was keeping and judged the way I was living. One withdrew and didn’t voice it until 10 years later. That made me really sad as he was one of my special ones. Generally I ended up arguing with them over random things when I was drunk at their parties and ostracising myself from them one by one. I was aggressive and confrontational and I felt like they didn’t understand me and that’s what made me worse. They didn’t, they didn’t understand that I was ill. I did a couple of bad things and I was going to leave a full stop there but it doesn’t make for a good sentence so I may as well confess.
I punched my friends boyfriend on one occasion. I don’t remember making contact with his face and it wasn’t hard but I remember the furore and it obviously didn’t go down well. But I did something which in my mind was worse. They were all drunk playing with an inflatable slide and water in someone’s garden one evening, having such a great time. I was sitting beautiful, drinking, morose and smoking cigarettes, unimpressed with the endeavour and finding their juvenile noise hard to cope with. I held my cigarette discreetly at against the back of the plastic slide, slowly it deflated.
I probably didn’t see anyone after that. I don’t even know who the person was who did that. Nothing makes it right of course but we were growing apart. I remember going to one of their gatherings with my best friend from Uni in the middle of nowhere, late at night outside of London. We got there and after 5 minutes were giggling in one of the bedrooms working out how we were going to escape. It was very late, before UBER but we managed to get a cab organised, sneaked out like naughty children and took a long, expensive ride home.
Me in my 20’s is literally someone completely different to who I am in 30’s and early 40’s. I’ve never been intentionally mean apart from that one occasion. I think I’m forgiven now. They are all on my Facebook and often like my posts. We’re dotted around the country. I wouldn’t meet up again. We’re different people. I think maybe we always were. I have to employ spiritual practices not to find their Facebook posts irritating or think things like “you’re a dick” and I force myself to find something to ‘like’ or be nice about. I don’t think I’m envious of the textbook normal lives they display I just judge them thinking you have no fucking clue.
I think I may assume some superiority for the things I’ve experienced, the things I know and the evolution I’ve had, mostly just in relation to these people but sometimes similar people I meet now and obviously I need to work on that. As part of my ongoing evolution. It’s a dichotomy, I don’t want them in my life because of who they are, we’d have no connection but perhaps I’ve still a little anger that they never understood. I was probably hard to help but they never tried. As a grown person I can see no-one owes you anything. They are free to act as they wish. I would do well to remember that the next time I’m on Facebook.
I have one friend left from then, she stood by me, didn’t judge me, she understood and supported me all the way. She lives far away but we’re great friends and full of love when we see each other and I had my best Uni friend too. We’d do coke together. But in a nice way, over some wine, staying up most of the night putting the world to rights, getting to know every tiny single thing about each others lives. Or we’d go out to bars, clubs. But she’d go to bed and I’d stay up until the morning continuing the coke party by myself until every last grain was gone.
Even the overdoses were sad and lonely. I wouldn’t tell anyone least of all my family. I remember one time I was in the general hospital for a few days with no visitors. This kind nurse came in and brought me a little kit of facecloth, soap, toothbrush, toothpaste as I had nothing. Clearly from home. Such acts of kindness you remember but it also reminds me how alone I’ve been for the most part with this illness for 23 years since diagnosis or I would say 30 years as I think I could have been diagnosed in school.
I don’t want to get into a mode of self pity. But this illness has affected my work, my friendships, my family relationships, my economic wellbeing and cheated me of a lot of time. Now I need to get healthy to try and beat the 25% reduced mortality rate as I have a child that relies on me. But what it has done most of all is stripped me of me. My personality. Or has it. It’s a mixed answer.
I didn’t really start living until I was 29 and met my soul mate. I’d worked on myself enough by then to be ready. Everything before that has contributed to who I am, has been part of my learning, part of building my strengths and personal characteristics but it was filled with chaos, pain, fear. My whole life has been a challenge and continues to be. All of those days were so broken. I grieve the lack of a normal life whatever that is. At least I think I do. I can’t picture what it would have looked like having been where I have been. But I know the loss, I feel the pain of it but I don’t know what I would have wanted instead. I don’t know anything else.
Someone recently said to me there is something special about you and its nothing to do with the Bipolar Disorder. And it meant so much. I have had this illness so long I have almost become it. I had started to think the only good bits about my personality were those displayed when I am hypomanic. I have a tendency to think that is me, that is the good me. That is the likeable me. And the depression is the unlikeable version of me. But it is not me. Bipolar Disorder has started to feel like me because it visits so often and I would like to see ‘me’ more often. I am not my disease. I am likeable for me, not my hypomania although I would say until it gets dysfunctional it is somewhat an extension of me and my extrovert character, that one is a fine line. I am not the ugly side, my depression. I need to remember that that is part of the illness. I am working on seeing where I sit for longer periods. My illness strips me of myself for large chunks of the year. But I am getting ‘me’ back.
I wrote this piece as a follow up to my Bipolar Journey because after writing that I became very sad. I actually thought I was going into a depression and became very frustrated and despairing that I had mismanaged a mildly hypomanic mood that had been occurring for 6 days previous. But I woke up crying this morning and recognised it was grief. I know grief now since my husband died. It is distinctly different to depression. This was grief of my losses to my illness. I was so very happy it was not depression as I can manage grief for the most part.
My 30’s have been good. I met the man of my dreams and had a beautiful child. Those things are more important than many of the other things I did not achieve. I experienced loss again in my 40’s when my husband died but at least we had those 11 years. I also worked again in a new job for 10 years and performed well when I was not off sick. I am now building a new future and still fighting to get good management of this illness.
There’s a possibility I will always have some sadness about how much of my life I have lost just in terms of time. The ‘normal’ experiences people have that I haven’t and the things I might have achieved. How much I have faced alone and the sadness I have endured and the things I have done to myself that have been damaging. But the article I wrote about my Bipolar journey is in the past already. I am in the present now. I am playing these cards out better now and I will continue to do so. I am proud of who I am today. I have genuine confidence, for the most part. I have self respect. I have more self awareness than many people. I am intuitive, kind, caring, generous, loving. I am persistant, I am a fighter, I never gave up and I hope I never will give up.
The things I want now aren’t really the things I have lost by having Bipolar Disorder. Yes I’d like to be able to provide my daughter with a house with stairs, a garden and a dog as she’s been asking for 6 years and she may have to wait until she can provide her own. But in the big scheme of things she has a good life, she does not want for anything on the contrary her life is rich with experiences and plentiful in every other way you could imagine. I would prefer it if I owned my own home so I had something to bequeath to her. But she’s bright, I have to pray I don’t die too early so she can be established on her own. I’d like a few more friends so I’d get invited to normal parties and dinners where I could potentially meet someone new. My career is what it was.
But In some ways after what I’ve been through none of these material or even occupational things seem important. It’s not about what I could have been or what I could have had, it’s just some of the suffering I would like to be able to remove. I have the illness now and I’ve accepted it, I don’t know anything else. I’d just like a bit more stability. Longer remission times so I can start over and grow my new life, my next phase and not have a negative effect on my daughter’s well being by being ill. That’s all really.
Ice Cream, Smarties and Holidays-A Happy Childhood?
I was born in 1975 and grew up in the calm and beautiful countryside, one of 3 daughters of 2 striking but relatively normal, extremely kind and nurturing parents with no history of abuse or trauma or significant loss. My parents were loving, as were my sisters, all extroverts, bar my middle sisters an introvert-extrovert. My sisters were significantly older than me coming from my Dad’s previous marriage but that mattered not apart from the occasional jealousy about rules. My Dad owned his own pub, it was a busy, fun environment to live in and my parents still had plenty of time for me as they were well staffed. Both my parents are British. Dad from London. Mum adopted, evidently Cyclothymic, on and off antidepressants and very emotional. There is no diagnosed history of Bipolar Disorder as far as I know on my Dad’s side but there are diagnosed Anxiety Disorders, OCD and Autism. My Dad has always been the picture of mental health and held the family together. Particularly ensuring my Mum’s mental and physical well-being. The mental health history on my Mum’s side is not known as she is adopted.
I had a happy childhood marked with good memories, helping my Dad build our house when I was 2. I remember wearing little red welly boots and a cute t shirt and shorts. He had a fire in the yard. We would mix cement. I’m not sure what helping I did but we stopped for cheese and cucumber sandwiches and it was the start of our special relationship. I climbed a ladder onto the roof of the house one time and nobody knew where I was. Dad’s car wouldn’t start on another occasion and we had to hitch a ride home on a main road in the dark. I felt so cocooned in his care. I remember that journey.
I used to read Mr Men books with Mum. We’d buy a new one every Thursday and get a sweet treat. I’d often get Smarties. One day we met Mr Bump. I also loved Worzel Gummidge. I’d make up dances down our long living room to the theme tune with my friend. It was dream to meet Worzel Gummidge and I wrote every week to Jum’ll Fix It. Am quite pleased that never came to fruition. We also baked cakes and ate them with ice cream.
I spent a fair bit of time sitting on the edge of the bar with big, scary, gentle giants of men bringing me gifts. I will never forget the day a regular customer bought me a Sindy Horse I had so badly wanted. As I got older I would say I couldn’t sleep so that I could join the party. I wanted to crash the discos from an early age. I was efficiently serving behind the bar by the time I was 13 if it was necessary or I could push myself forward.
Our existence was plentiful. Christmas and birthday always presented us with big gifts and full stockings. We took a holiday somewhere abroad, hot and beautiful every year. We ate out. We went to concerts. We were together as a family with only the occasional drama between my Mum and my sisters Mum.
I attended good schools, a mixture of State and Private, sometimes it was hard to get a best fit with my behaviour and at other times my parents moved for a new business so my school changed. My Mum especially wanted the very best for me because of what she hadn’t had. I can recall a little stress but I always settled and found good friends. I finally settled in a State Comprehensive for Secondary and was happy there. I was with some children I’d already joined in the last year of Primary so it wasn’t too daunting. I was naturally gifted academically so I didn’t have to do much work which was fortunate as I found it hard to apply myself and had a tendency to be slightly rebellious. I made friends but I made enemies without trying. I had a supreme confidence on the face of it in school which slowly cracked over time. But I think some people didn’t like it. You were supposed to be scared of certain people and I wasn’t. I also had an ease about my being, my communication, my individuality that attracted unwanted attention.
Aswell as making friends with some of the most popular people in my year, the people that everyone wants to be friends with, the ‘cool’ people, I had problems from less popular more aggressive types of children in years much above me. I got into a few little fights. Some were spontaneous and some were planned at a particular time in the field for example. That was a little stressful but I wasn’t going to back out or it would develop into an ongoing bullying. My Dad had always taught me to protect myself, hit anyone who hit me to put and end to it and stop them doing it again. I remember him teaching me a little boxing behind the bar. My parents always backed me up and these incidents gradually faded. Instead, in time I was to become somewhat mocked for my difference as school progressed. I was different in the way I dressed individually and in the way I behaved and it started to show. It wasn’t a big thing, only the odd idiot. But for a soul struggling to breathe, the small things mattered.
Something isn’t right-School Dayz
I can recall extremes of mood from the age of 8. I remember being in a car with my sisters going to the beach. It was a beautiful sunny day and I had been looking forward to going on this day out with my sisters and their ‘older’ friend. But a song came on the radio, “Mooonlight Shadow”, Mike Oldfield. I hadn’t heard it before and it seemed to penetrate my soul with a deep melancholy and my mood dipped. I didn’t enjoy the day at the beach at all, all I could feel was the sadness of the song and my thoughts were inexplicably sad too. That was the first time my mood was triggered.
I was mostly an outgoing gregarious child, leading the way with friends, an initiator, the slightly annoying sister who has too much to say, full of life, a comedian. My drama teacher said I had a special ‘bubble’ and she hoped I would never lose it.
But in secondary school it started to fade and come less. There were more periods of melancholy, deeper ones. I didn’t know what was wrong with me but there was something. Music seemed to especially trigger me. We went on a ski trip. I was buzzing about the trip, we all were. Then someone lent me a tape for the journey and I ended up listening to it on repeat for the entire 12 hours or more it took to get there. It was “The Smiths”. I couldn’t believe there was someone singing songs about feeling depressed, about how I felt. I felt depressed for the whole trip (and possibly after, I don’t recall) and didn’t really do much skiing or eat or socialise just sat in my room, burning incense, holding each stick and watching it go down and listening to that tape and the theme from “The Lost Boys” which is also powerfully evocative.
My little bubble would still come out sometimes and I would have moments of enthusiasm, social charm, going out raving, or to a bar, a movie, being magnetic even, being ‘myself’ again, getting into trouble for being loud, wearing the wrong uniform, smoking in the toilets, being rude to the teachers, sometimes reckless, skipping school and getting the train to the seaside. Anything but the zombie, I was cycling in between the two basically. But never would I say did I fit the description of “normal”.
My friends didn’t know what to do when I was in my low periods. They walked around with me during breaks but we were a group of three best friends and slowly I started being left out of plans. They liked being with me again when I was up but they didn’t know what to do when I was down. I think part of this is that they would ask me over and over what was wrong and I couldn’t give them a reason, I had nothing concrete I could share. Girls of that age like concrete sharing and problem solving. But I couldn’t give them that. It just was, it was just something that was happening. Even the teachers didn’t intervene except one teacher apparently asked my best friend if I was on Heroin! Hanging out with a zombie probably isn’t that cool or that much fun.
To me this was clearly the onset of my illness. I didn’t know and nobody else knew. I didn’t feel I could share it at home. Being from such a happy family made it difficult to share. My Mum had always said she wanted me to share anything but I just didn’t feel like I could share this. I felt ashamed of it, a failure. I didn’t know until I was older that that is a symptom of the disease.
My behaviour wasn’t normal at home. At home I became somewhat of an actor. When I opened the front door every evening after school, I would communicate as normally as I could as I recall. I would always say nothing was wrong if I was asked. But I was difficult to manage. It would come out as anger and non compliance at home. For a very long time I had a volatile relationship with my Mum. We had physical fights where we would both get very upset. We would both be verbally abusive. It was quite out of control. She had no idea what was going on with me and how much I needed her help and I had no ability to express it.
I had no coping strategies. I became obsessed with the blades in metal pencil sharpeners. I would buy them and take them apart but never did anything with them. It was the dawn of the Rave generation and my peer group were going out experimenting with drugs. I became interested in drugs as an option to get me out of the way I was feeling. I worked part time as a waitress and would get good tips. I used to hide my money in the back of a photo frame to buy drugs. When I got up the nerve to ask someone, to buy me Ecstasy or Speed, which was expensive at the time, it didn’t do much. I think it was fake. There were a lot of people taking advantage of school children.
In the Spring of 1990 I could cope with my existence no more. I would go to school, get though the day, come home and get into bed and listen to music that made me cry on my Walkman. My mood had never been this low. I got together all the analgesics I could find in the bathroom cabinet. Mostly paracetamol and Annadin and some other random pills and swallowed them and then got back into bed. It wasn’t a suicide attempt. It was desperation. Sometime later my sister came in my room. She asked me what was up. I ended up telling her. She is a calm and sensible person and told my parents we were going for a drive. We went to the A and E, I can’t remember what happened at the A n E. I think she must have called my parents as we didn’t go home until the next morning. I was invited for follow up with the Community Mental Health Team after but did not attend. I thought it would be too much for my mother.
Spring became a pattern as it has done for the past 29 years. I always have a severe depressive episode in Spring. The following Spring I had another depressive episode, bought a couple of boxes or Paracetamol and this time I think I panicked and told my mother. An overdose on Paracetamol is one of the worst discomfort wise. What most people don’t realise either is that it will rarely kill you and even it does it’s a very slow painful death as your organs shut down if enough damage is inflicted. The hospital give you enormous amounts of charcoal to drink to pump it out of your system manually and you produce copious amounts of black vomit for hours on end. When we returned from the hospital My Dad was angry. He told me, whilst I felt like death, was emotionally devastated and was carrying a hospital vomiting tray, that I would need to attend my part time job in the restaurant that night. You never let people down. I wasn’t wrong in my assumptions that my parents were going to find a mental illness difficult to understand.
I remember my Dad saying something like “It’s up to you what you want do to yourself”. Whilst my Mum gave a smothering overreaction and wanted me to talk. I was referred for Psychiatric assessment again and I think it scared my Mum as I recall her saying “You don’t need that do you?”. I kept the letters under my bed for years because I knew what I most needed in the world was to attend. Since I didn’t go, the G.P requested to see me. But my Mum came in with me and the G.P simply said “You’re not depressed are you?” to which I said “No” as I clearly couldn’t talk and we left. So I was left again, unsupported with these growing needs, helpless and with no strategies. I don’t know if things would have been different if I’d given my Mum a chance. I had the impression she wanted me to tell her what was wrong so that she could fix it because she was my Mum and she wanted to know everything that was happening in my life or running through my head. But she couldn’t fix this. I don’t know if she would have realised it or not. I guess I’m just quite a private person even from my family. I just wanted access to the people to fix it without a go between.
I muddled on to college to complete my A Levels. In a new friendship group. People I’d judged a little in school and thought were maybe less cool who turned out to be the loveliest crowd. More authentic, more real, more intelligent, more supportive. I was exploring new music now. My previous friendship group had been into rave and dance music. These people were into early 90’s indie and alternative rock. It opened my mind to a whole plethora of new pleasures. We went to gigs. We hung out at people’s houses when the parents were away, starting going to pubs and drinking pints of cider. It was fun. I had my dark moods and my lighter moods and both were accepted. Drugs were present in this group as much as the Ravers group but mostly marijuana. I started smoking quite a bit, even before lessons. It made me paranoid at times but I persisted for the good feeling of escape.
In 1992 we went to Glastonbury and I believe I had a drug induced Psychotic episode. My brain chemistry just wasn’t as resilient as everyone else’s and when everyone else was having good time I was in a horror story. We were sitting around the tent amongst 70, 000 revellers, on our first day. I’d not even explored the site. Someone said we’re going to take some LSD. Sure I said. It started off ok, funny, weird, weird-good but then the visuals turned nasty. Everywhere I went I could see a threat, someone coming for me and everyone’s faces familiar or not had monstrous characteristics. I thought everyone in the huge field was talking about me. I lay in the tent terrified, I could hear them all. Everyone was looking at me when we went out. People were saying things that they weren’t saying. There was nowhere I could hide. I did my best to present the impression that it wasn’t bothering me but the anxiety was extreme. I’ve never felt so vulnerable. I can’t remember all the details. I ended up riding out my horror for most of the weekend at the tent and not seeing many bands. But I didn’t tell any of my friends.
We went again in 1993, this time I took Amphetamines, But I still had a Psychotic episode or possibly a flashback. Similar things began to occur and I was convinced all my friends were plotting against me. I was saying unusual things and getting unusual looks and responses back. I wandered the festival alone and ended up crouched in the back of the Samaritans tent, whispering about my situation in case anyone was following me or might hear. I didn’t feel better when I left them so I went back, packed up all my stuff and got ready to leave. My friends couldn’t understand it and they persuaded me to stay and leave as planned the next day which I did. My mental make up seemed to be more fragile than theirs.
Life resumed at college. I self medicated my moods with alcohol and drugs. I achieved average A Level results which was acceptable for being permanently stoned and not doing much work at all and managed to get onto a good University Degree at a respected location once combined with work I’d done on my year out and my interview and exam so I left home for the City. I had never really been a country girl and was excited about the move. I moved in 1994 and have never moved back.
In my first year I moved into a shared house with a mix of very different, good people. One of whom was a heavy dope smoker. So I continued to self medicate with marijuana and alcohol. I was also in a relationship with my first true love from back home, I’d been chasing him for 2 years and he’d finally acquiesced so although I made some new friends I didn’t overly mix as was alternating weekends at his University and mine. I did meet two special girls both of whom I know today. One is my best friend of 25 years and the other is a good friend who lives halfway round the world. But I popped over to visit her 18 years on and it was like nothing has changed except back then she didn’t smoke dope or drink. Now she does and I don’t!
In the second year I decided I wanted to live alone. My mood symptoms became more apparent then. I was drinking less and had stopped smoking dope. I was once again having periods of being quite ‘up’ and periods of being very unmotivated and inexplicably sad. With no clear triggers. It just happened. I couldn’t make sense of it. I would lay in my room feeling depressed searching my past for reasons. I thought you had to have a reason. I couldn’t find anything to lament over yet I was frustratingly melancholy.
In the third year, I moved in with my boyfriend. We had a gorgeous little ground floor flat with a pretty garden. The lows were becoming more disabling now. I would lay on the bed for 2 weeks at a time. Detached sometimes releasing waves of sadness with music. But mostly I would just lie still, deadened, skip college, not eat, not cook, not do anything. Classic depression. Then suddenly it would shift. I would bounce back up feeling full of excitement. Start tidying the house, regardless of what time it was. Go into the early hours. Make a nice meal for my neglected partner in the middle of the night. I remember one time finding this blue metallic shiny paper as I used to work with kids and being fascinated with it. Holding it, waving it, squishing it saying “Look, look at this, isn’t it amazing”. Speech getting fast. Becoming wired. Hypomanic.
It was starting to interfere with my Uni work now, becoming more debilitating and clearer to me that I needed to see someone. I went to my GP who took the history and referred straight to the CMHT for Psychiatric assessment.
I got my Psychiatric diagnosis in 1996, it was Bipolar Disorder Type 2 with rapid cycling. I was put on an anti epileptic medication. He was reluctant to put me on Lithium as I was so young. This seemed to work, not perfectly but with significant improvements, reduction of symptom severity and improved functioning.
In June 1998 I graduated with a 2:1 and a 1st for my dissertation. In September 1998 I got offered 3 jobs as a Speech and Language Pathologist and took the one that was most well paid. The Occupational Health form asked “Do you have any Psychiatric Disorder” I ticked “No” “Do you take any medication?” I ticked “No”. Then I stopped taking my medication in order to be compliant and honest.
I started work and seemed to be ok for a while, stopping the medication didn’t cause me any overt problems and I performed my job with enthusiasm and charm and set about my duties in a capable manner, making a good first impression. But in the Spring of 1999, it hit me. Like a truck. The onslaught of a depressive episode. So much so that I was put on an anti-depressant for the first time by the G.P. It made me sick, it made me agitated and it made me want to self harm.
I was referred back to the CMHT and the Psychiatrist reinstated the mood stabiliser with limited but some success but with the presence of an anti-depressant now my cycles become more frequent.
The next 3 years are the turbulent bit, to say the very least. I moved out of the flat with my boyfriend of 5 years as whilst I loved him I finally realised he would never stop drinking so I found a spacious ground floor flat of my own with a long garden densely populated with grass and bushes and a little pond at the end to which I later added the company of two rescue cats.
The medication regime didn’t suit me, it didn’t contain my moods and my mood rapid cycled more than ever most likely a result of the addition of anti-depressants. I hadn’t been offered any therapy to learn any coping skills and the intense emotions were sometimes too much to deal with. One day I smashed a big mirror with my fist. I remember being disappointed to sustain only a small cut to my finger. I was hoping for something bigger to give me more of a release of my feelings.
One evening there was a frog in my kitchen. I panicked a ran over to the pub over the road announcing the situation and requesting help. Two men came back with me and dealt with the frog. I became friends with them subsequently. It was probably the worst friendship I could have made. One of them was a Cocaine dealer. I’d done Cocaine once recently at a party and I’d loved it. If you are feeling hypomanic and sociable it enhances and extends your buzz. If you are depressed, it can pick you up a bit. Either way if you love talking you can extend your talking all through the night. It is a Bipolar dream. On coke everything you talk about feels really important. When you are manic everything you talk about feels really important. But on coke it is a little bit more controlled. Thoughts are clearer. There is more focus.
I started using coke quite frequently to supplement my poor medication regime and just because I loved it. I also vaguely started dating a guy more for his bedroom athletics and startlingly large appendage than anything else. He liked to smoke dope so I would alternate with that and Cocaine depending on whose company I was in. I was also drinking quite a lot. My brain chemistry was a mess. I was having frequent episodes. My anti-depressant was being changed but they kept changing to different SSRI-s failing to see that SSRI-s didn’t agree with me. There was a very significant low point where I took a significant overdose and was admitted to a general hospital to clear it and recover. Following this I had my first Psychiatric admission. Here I was introduced for the first time to ideas of self care, self management and self love. When I came out of the hospital the bedroom athletics guy was exercising with my good friend and neighbour upstairs. Apparently they were worried about me and this was their only way of coping. This still amuses me to this day. They hadn’t even called whilst I’d been gone.
When I left I was motivated for change. My mood stabiliser and anti-depressant had been changed. But after time the efficacy expired and I continued to rapid cycle with severe depressions and significant hypomania. I also started to go through periods of denial around the illness. I would say to myself “What if I’m not really Bipolar at all?” I would get confused about it and wonder whether I would be better off medication so I would stop taking it. Over these years I indulged in excessive spending, more cocaine use, self harm-for the most part superficial, bulimic activity, some regrettable encounters with men, significant arguments and confrontational behaviour leading to friendship loss and bankruptcy. My life was out of control. I left my job as was mutually agreeable since I was mostly off sick.
In 2003 I had a 3 month admission that changed everything. I had already started counselling. I got a medication regime that seemed to be more suitable for me. I got a perspective on all the things I was doing to damage myself and damage my chances of recovery or stability. In fact all the things that I was doing that were working against the medication. I quit Cocaine and all other drugs. Someone remarked to me that if I continued to self harm I would get an additional diagnosis of a Personality Disorder so I quit that overnight, it was only minor anyway, its usually a compulsion I can control. Similarly with the bulimic behaviour, although that took a bit longer it seemed that was just a phase too. I finally took responsibility. I realised how badly I needed to refocus on my part in all of this, what I could do to get well, how out of control my life had become. I accepted the illness and I accepted that I needed to live a certain way to manage it. There would be things I needed to do and things that I absolutely couldn’t do if I wanted to be well.
Transformative Thirties, Cataclysmic Forties
I was well for around 3 years (all bar residual or mild symptoms that were managed) during which time I started a new job with less hours. I had a short significant episode and admission in 2006 changing medications with a view to trying to get pregnant and was well for a further 18 months.
I met my soul mate and we travelled to many far away places and I saw many parts of the world that I’d dreamed of seeing in the manner I’d dreamed of seeing them. With a back pack, on buses, in shacks etc. We were together for 11 years. He was special. He liked more music and film than anyone I’ve ever met, he learned to cook and even took good care of his feet which is important to me! He was a good lover and a good friend and the King of Dad’s to our daughter. He helped me establish stability and self reliance further and I learned a lot from him about taking responsibility for my mental health. He was clever. He was different. He was wild.
Pregnancy (2008) was catastrophic for my Bipolar Disorder but I was gifted with my lifetime dream, a little girl, a baby of my own with the man I loved. We were complete. But the rapid cycling returned and I suffered severe episodes primarily depression during and after pregnancy continuing until my baby was 2 years. This continued with 4 significant Springtime episodes in 4 years (2009-20012). It was exhausting, somewhat soul destroying and left me feeling hopeless. I went through many different medication options and combinations and nothing seemed to be quite right.
Ultimately I was referred to a Specialist at Professorial level (2013) to look at my medication regime, see what new treatments may benefit and see if there was something a more highly trained eye or brain and with access to more meds, could achieve. This has had mixed success. Initially there was some improvement with the first Professor. Then my husband died suddenly of Cancer (2014) and this sent things haywire. I’ve never been particular triggered by anything at all. My episodes just tend to ‘happen’ always in Spring, the worst one. And then rapid cycling as my mood takes itself the rest of the year.
But I’ve learned that grief has been a trigger. Since my husband died my mood has been more unstable than ever despite clean living. I have multiple episodes of depression a year, he died 4 years ago. I had to give up my job but I was struggling anyway with Bipolar related cognitive issues which made a post of high responsibility challenging. I have a very complex medication regime which is regularly reviewed and tweaked by the highly skilled Professor I have been with for 5 years and as I process my grief I hope I will return to some more stability. But it has made me more mindful to be observant for other triggers however small.
What has been transformative about my thirties and my forties is the development of inner strength. Of self sufficiency. I no longer lay on the bed waiting to be rescued because I know no one is going to come. I still may lay on the bed unable to move because I am too ill and I still may wish someone would come to help but I know that ultimately, in reality, it’s likely any moves forward will be coming from me. If we have food tonight it will be because I managed to do it, if the environment gets to be improved it will be because I did it. If we get out for a walk it will be because I found the strength. I may lay there so desperate for someone to take over because I feel I can’t do it. But I know no one is coming. When I can do I will. When I can’t I can’t. But I will always try. Because I am all we have. Oftentimes I won’t make it and she will lay on the sofa watching Stranger Things but I will persevere and everyday is a new opportunity to try again. I am the only one who can make a difference to myself and I am the only one who can make a difference to my daughter.