A Family Perspective of Caring for Someone with Bipolar Disorder Part 1

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I wanted to add something a bit different to the blog today. I’m very close with my family and wanted to show their perspectives of my struggles living with Bipolar.

My Husband’s Perspective:

“I had been in the hills of Scotland on a mate’s stag do, and I’d had no signal since we had left behind the last town a couple of days before. We’d driven back towards civilisation to visit a nice looking pub we’d passed on the way. Looking forward to catching up with my girlfriend, I turned my phone on. It got signal, then the texts started to arrive. They started out asking how I was getting on, but then descended into ranting about I didn’t care and how she was sitting on the floor on her own drinking whiskey. The messaged said that if I cared I’d have messaged back by now. Uh-oh! I didn’t know at the time that this was a low. I didn’t understand what had gone wrong. I hadn’t warned that I’d be out of contact but hadn’t realised that I wouldn’t have signal where we were staying.

This sort of thing is fortunately kept in check by meds now, but I still have to bear it in mind. The main change that living with someone with bipolar has made to my life is that I need to make sure there is somebody nearby who can help on a crisis. If I go away, we plan who is going to be near to make sure there is someone to call if needed. Having caring family around helps a lot with this! The other side to this of course is coming back home to discover that it’s spotless because ENERGY! It make it more interesting; you don’t know exactly how each day’s going to pan out. Well OK, maybe that’s not a good thing. However, I think it makes us stronger too. If we can cope with this, we can cope with a lot more that life has to throw at us!

I suppose I’m well placed to have married someone with Bipolar, having already lived with a close friend who also has it. Living with someone before and after diagnosis also gives an interesting point of view. I like to think of it as a wave, like a sine wave in maths. The centre of the graph, the X axis, is where most people live their lives emotionally. The peaks and troughs are where I see people with Bipolar living – always in highs and lows.

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The thing about a sine wave is that it always cancels out. The time spent below the line is the same as the time spent above the line. It’s just that following someone with Bipolar means that the lows are that much lower, and difficult to deal with. However, that means the highs are much more extreme (and potentially fun) to be around. I think what I’m trying to say is that although ‘normal’ people seem to live on a straight line, we all follow that up and down curve to an extent. It doesn’t matter whether we look like we’re on a straight line of a graph or a curve going up and down all the time, we all average out to ‘normal’ people. Although with pre and post diagnosis things are quite different, I wouldn’t change a thing about my friend or my wife. They’re just as important to me wherever they are on my graph, however high or low their peaks and troughs are.”

My Mum’s Perspective:

“You were always strong willed, determined, and sometimes a raving tyrant of anger! You were quiet at school, in primary and early secondary, but not shy. Always creative, especially with reading and writing. You were a tomboy who never wore dresses and a typical teenager; you wanted to shock everyone with your clothes. In your teenage years, you became reclusive and spent hours in your room. Then the next thing you wouldn’t stop talking and rant for hours. I noticed this when you started work, some nights it was like verbal diarrhoea! It was like someone had turned the on switch but there was no off switch.

It is hard, difficult to deal with. I didn’t want to accept anything was wrong with you. The year you moved out things became very difficult. You wouldn’t eat, you were very thin. Then you became very depressed. But you do have long periods when you’re stable; a normal young woman. You can go for long periods of time with just a few small dips and highs. But when you go down that’s really down, that’s it. I find the lows worse to deal with than the highs.”

After this chat I received this text message from my Mum:

“There are times when you are speaking to a friend who is struggling and to trying to encourage them and being normal and speaking to your dad and interacting with normal conversations. Then when I saw you tonight just phasing out during our meal and so focused. Your face and eyes it scared me and your mood has changed so dramatically it was as if you were no longer with us! I want to cry now. So poorly, so poorly I want to help so much what can I do as a mother it is heartbreaking. Do I let my daughter read this or am I being selfish and looking at my needs as well, but I love her so much and want to mend her but what do I do and how do I do it? I want to make the right decisions when she is poorly. What do you do? What is best? What do you say? I’m scared of saying something wrong. Scared of doing something that will make things worse it’s like a balancing act or walking on a tightrope.”

Our relationship has changed for the better since this conversation. Speaking to my Mum recently she had this to say:

“I don’t think like that anymore. It doesn’t help either of us for me to be walking on a tightrope with you. Now if you upset me, I tell you and treat you and talk to you the same as I do with your brothers’. I’ve learnt that there is not much I can do to help. Material things, taking you out doesn’t help you. What I need to do is listen to you and be there. I can do practical things like helping you clean the house and taking you food shopping. It’s taken me a long time to learn this, but I can’t change your illness or take it away.”

My Triggers for a Bipolar Episode and How I Manage Them

Bipolar can be triggered in a number of ways and it can be different for each person. It has taken me years to correlate certain situations and experiences with the onset of a Bipolar episode, depressive or manic. Here are the triggers I’ve identified that effect me;

Stress – I don’t deal with stress very well, tending to unhealthily bottle up how I’m feeling and how much I’m struggling. A build up of stress sets off an episode of depression or mania. I am slowly learning to recognise when I’m stressed and deal with it head on. I am more aware of stressful situations and plan ahead if I know an event, social situation or work will cause me stress. Looking at a stressful situation from a logical and objective point of view helps me to minimise it’s impact. I ask myself simple, logical questions such as, “What’s the worse possible outcome?” “How likely is that outcome?” “What practical steps can I take to reduce the stress in this situation?” If I can find an answer to this last question I’ll ask others for help. I think this is key; knowing when to ask for help. It’s too easy to keep pushing ourselves and forcing ourselves to deal with situations alone. Asking for help is not a sign of weakness, a notion that I still struggle with, but I am working on. I’ve blogged about how stress effects me in the post Why I gave up my full time job

Sleep – If I sleep less than fours hours a night for three or more days I often find myself in a hypomanic or more serious manic state. During the week I have to be strict with myself and go to bed between ten and eleven every night. On the weekends I stay up later, but by Sunday again I need to turn back to my routine before bed. What I need to work on here is a more concrete bedtime routine. What usually traps me is not being able to fall asleep and then giving up, and staying awake for most of the night. A routine will help me to relax and making falling asleep that much easier.

Alcohol and other drugs – Too much alcohol and other substances have a negative impact on my mental health. They often make me depressed, and alcohol especially stops my medication working the way it should. Alcohol in itself is a depressant, and teamed up with other substances I take causes me to behave erratically for days afterwards and can lead to depression or mania. I still drink, but not to the excesses I used to. At one point I was drinking everyday, which was extremely detrimental to my mental health. I go into more detail in the post How much is too much: Alcohol and Bipolar

If these three are all combined together it can be dangerous. I am much more likely to become very ill if all three are in the mix. Stress often leads to me not being able to sleep, and in turn I will drink to help me sleep and to relax after a stressful day. Having identified these three main triggers has had a positive impact. It’s not always possible to avoid stress, but I know in theses situations that I have to watch out for warning signs for a Bipolar episode. I’ll make family and friends aware that I’m stressed, and rely on their support; whether it be a listening ear or helping with the practicalities of the stressful situation.

Awareness and understanding of these triggers is empowering. I am more capable of dealing with Bipolar than I was a couple of years ago and that can only lead to positive outcomes and stability.

Where I Am Now, A Mental Health Update

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I haven’t written about the state of my mental health for awhile, as I’ve been focusing more on thought pieces on the blog. I’ve spoken about my journey in this post My Journey so Far, Living with Bipolar Disorder Today I’d like to focus on where I find myself now and the recent state of my mental health.

You’ll all be happy to know it’s almost all positive! I seem to have finally found the right combination of medication. It’s been a long road (I was diagnosed in December 2012 with Bipolar) to find the right mix for me. Many of the number of medications I’ve tried I’ve struggled with intense side effects that have altered and decreased my quality of life. Now I find myself on a combination that’s only side effect is to make me feel drowsy. This isn’t a problem as I take them just before I go to bed. I am currently taking Lamotrigine, that stabilises my mood, Aripiprazole, which is an antipsychotic and Sertraline, an anti depressant. These have by far kept me the most stable I have been in years. Since May of this year, my mood has been stable without any major depressive or manic episodes. Three months of stability may not register as meaningful to some, but for me it’s huge. My life has been so constantly controlled by my fluctuating moods since I was a teenager, that these past three months have been like living in paradise. I can’t quantify in words how much it means to me.

The only blip I have had is struggling with back pain. It’s totally unrelated to my mental health but has impacted on my sleep. A lack of sleep for me is a trigger for a manic episode that then ultimately leads to depression. I spoke to my doctor and I was given pills to help me sleep until my back improves. Being honest with my GP and being aware of triggers and warning signs has prevented me from becoming ill. It’s taken years to specifically identify when an episode is on the horizon and what circumstances can alter my mood. I’m still learning about the disorder and how it effects me. I look at this process as becoming an expert on my own mental health. Expertise in any subject takes years of study and that is precisely what I have to do when it comes to my mental health.

I’m currently thinking about returning to some form of part time work. It would give me more of a concrete routine and bring in regular money. At the moment I’m freelance writing when I feel I’m well enough to do so. It means I can turn down work if I need to and take a day or even a week off from writing. Money is tight, but being stable doesn’t have a price and is more valuable to me than any possession. I’m lucky enough to be in a position where I have a partner that works full time, which provides me with some security. I’ve had to apply for PIP (personal independence payments) as my DLA (disability living allowance) has ended. I’m nervous that I will be turned down as they have become much stricter regarding mental health conditions since I applied for DLA four years ago. If I’m turned down, I’ll appeal immediately!

I’m hoping to have some form of therapy to help me manage Bipolar and continue to live with stability. Again the last three months have been incredible. The relief I have felt has given me more clarity, but at the same time has been a surreal experience. It isn’t the norm for me to be stable, and it feels strange and alien to me, like someone experiencing depression or full blown mania for the first time. I’m getting used to the stability and realising this is how life should be. It should be calmer and softer, more even and tranquil. Of course there are ups and downs, but they shouldn’t be as harsh, with sharp edges ready to cut me. I have relaxed for the first time in years, I feel safe in my own mind, rather than being terrified of it turning on me when I least expect it. All I can hope for is that it lasts, but if it doesn’t I feel prepared and ready to deal with it.

A Story of Self Sabotage

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I am an expert at self sabotage. Over the years I have inflicted these self destructive tendencies on to myself. One example was when I was at college, studying childcare. The first year went smoothly and I was achieving A grades on every assignment. In the second year however, I changed.

My moods became erratic and I suffered from what I now know were bouts of mania. The class had a new lecturer for the year and our personalities clashed instantly. I would refuse to do assignments because to me they were illogical and pointless towards passing the course. When it came to coursework, this particular lecturer would hold me back and tell me my work wasn’t good enough. I became obsessed, and would bitch and moan, rant and rave about her to everyone. I ignored her suggestions and advice and accused her of singling me out, because I defied her during classes. I wasn’t going to pass the course if I didn’t take on board what she was saying and finally there was a meeting between me, her, another lecturer and the head of the course. I was infuriated that it had come to this and convinced myself I was being victimised. I knew more than she did. I was more intelligent and she was wrong. The meeting did not go well. Fearless anger was directed at them. I don’t care what this meant for the future. The three of them were waiting for me in the room. They had their chairs at angles, making a semi circle. I was motioned to sit in the chair opposite.

“Katie, we’re meeting here to discuss your academic performance and your attitude towards one of your lecturers, who is here today.” The head of department turned to the lecturer, who shuffled in her chair before she began.

“Yes I would like to say your attitude towards me has been unacceptable. You constantly argue the point with me and challenge me in front of other students. I have given you advice and support with your coursework after lessons, but you have ignored my suggestions and become aggressive. You seem to think that I don’t know what I’m doing; that I’m incompetent and you have told me this.” She had been sat forward in her chair, speaking animatedly. I could hear the frustration and anger in her voice, masked by her politeness. The head of the course remarked,

“We don’t expect this type of behaviour from our students Katie. Do you have anything you want to say?” I sat fuming across from them. I remember staring furiously at my lecturer as she had spoken. I hated her. I hated her ugly clothes, and the disgusting worn leggings she always wore. I wasn’t about to choose my words carefully after what she had said. Not being able to help myself, I said with barely taking a breath.

“I don’t agree with you, I don’t agree with anything that’s been said. I work really hard, I know what I’m doing. I have already taken A levels and have passed all of them with high levels of attainment. I’m intelligent and articulate, more so than you.” I glared at my lecturer as I said this, looking her up and down. To me she was a disgusting piece of shit with her worn out baggy clothes and red bloated face. I continued, “Because of this, I think she’s jealous and has taken a dislike to me. She has chosen to single me out from the rest of the class and victimise me. I am the victim here, the victim of her unprofessionalism. There is absolutely nothing wrong with my work. Last year I had straight A’s and all of a sudden, since she started my grades have dropped, and all because she doesn’t like me.” I refused to speak to her directly, not wanting to show her any respect. Until my last remark when I turned to her sneering, “And yes, I do think you’re incompetent.” Shaking, trembling with anger I stopped, silently awaiting for their reply. My lecturer responded, this time with more vitriol than before,

“I don’t appreciate your tone. You’re acting completely unreasonably.” She turned to the others, ignoring me, “See, this is what I was discussing with you both earlier, this is the attitude I’ve had to deal with everyday.” I couldn’t believe that she was treating me this way, pretending I wasn’t in the room, that my existence didn’t matter. I shouted,

“Don’t act like I’m not here, it’s insulting! This is the attitude I have to deal with everyday.” The other lecturer, who had been sitting quietly throughout piped in,

“You seem very angry. I think maybe you should calm down, so we can have a reasonable conversation.” That was the worst statement she could possibly have made. I felt patronised, treated as a small child that couldn’t regulate their emotions. I was twenty one years old, an adult, who didn’t need telling how angry she was. I was seething. How dare they treat me this way, me! At that moment I thought of myself as the most important person on the course, that I was special and deserved to be treated as such. No, actually I believed I was above everyone, the most important person in the world. They couldn’t treat me this way, singling me out when I was in the right and they were in the wrong. I couldn’t make them see the situation my way and I couldn’t understand why. It was infuriating. The anger inside continued swelling and I was ready to burst with righteous anger. The head of the course began again with a more resolute tone than before.

“Katie, you need to understand your behaviour right now is completely unacceptable and is exactly the kind of attitude we have been speaking about today before you arrived. We expect you to show some respect for your lecturers, even if you don’t agree with everything they tell you. Now according to your lecturer, with the quality of work she is seeing at the moment, you will not pass this course. If you refuse to go to one to one tutoring and your attitude does not change, I’m afraid we will have to ask you to leave the course.” How could they? How could they! I though to myself it was unfathomable that i could be treated this way. In my mind I was being punished for being intelligent and daring to have my own opinions. I couldn’t contain myself. I said with a nasty, vindictive tone as I pointed to each one,

“Well fuck you, fuck you, and especially fuck you.” The room was quiet and stunned. I continued, “I’m not letting you force me out, I don’t give a fuck about this course.” I stormed out the room, me heart beating hard and my head pounding. I went to the bathroom and cried angry tears. I was intensely frustrated. Then I began to laugh, laugh while I cried. I didn’t know what else to do. But I felt vindicated. I had made my point.

I realised later, when I was in a more stable frame of mind what exactly I had done. I was two months away from finishing the course. I could have just shut my mouth and carried on, but instead I decided to throw away two years of work. I had no back up plan, no job to go to. I sabotaged my life. Through sheer luck, everything worked out, but this is just one example of how I sabotage myself when I am unwell. It can happen when I’m manic, but depression likes to get in on the act too. Looking after myself and looking out for the warning signs of an episode and staying away from triggers is my best defence against self sabotage.

Self Honesty

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Honesty. A subject I harp on about often. I like to think I am an honest, upfront individual and that this is reciprocated by the people around me. Mutual respect – if I’m honest and open with you, then I should expect the same in return. However, there is something that evades me – self honesty. I am not honest about what is going on within my own mind. I creep around an emotion for fear that if I face it I will become engulfed by it. It’s not a healthy attitude to have when you suffer from Bipolar.

At the end of last year, I was in the middle of a severe bout of depression. It was one of the longest stretches of time I had felt so low. Everyone has had that moment when you NEED to cry. Whether it be through physical pain, grief and loss, a break up or just after a ridiculously shitty day when everything that could have gone wrong went wrong. So you scream, cry, sob, but then afterwards you feel a release. You feel better, somewhat restored and ready to face life’s next challenge. Engaging with that raw emotion and facing up to it is what allows us to carry on during difficult circumstances.

Looking back to late last year and I found it immensely difficult to cry. That sounds strange, coming from a person who has faced up to the fact they are depressed. I have made excuses for myself; that I’m a strong person and I don’t need to cry. Blaming the medication for dampening down emotions. The people around me won’t want to see a blubbering wreck. Even that crying is self indulgent. But these are all lies. I had been lying to myself and denying a healthy response to my ill health.

This is something I have learnt to recognise on my own. Counselling through talking therapies was unfortunately unhelpful, but for one point. Six sessions past and I had not cried, not even once. I had found the whole process frustrating. The exercises, assessments and ‘homework’ straight out of a textbook and not tailored to suit my needs. This frustration boiled over during the seventh session when the counsellor informed me I would not be referred for further support and assessment as he had failed to,

“Gain enough evidence.” I felt that there was this magic combination of words that I had to use to continue to receive help, that I was completely unaware of. His questions began again and I returned with answers as best I could. Then he stopped me and said,

“I’m not getting what you are trying to say.” All I could manage before I started to cry was,

“I don’t know what you want me to say, I’m explaining how I feel.” And that was it. I started crying and couldn’t stop. I couldn’t drive I was crying so much and I had to stop at my Mums’ halfway home. When I managed to compose myself enough to get home, I spent the evening sobbing. The next week I was hollow, numb, burnt out. The next weekend I felt something again. But again I couldn’t cry, something was holding me back that I didn’t want to recognise. I was scared to cry, to have that release. If I cry, I will break that barrier, I will be out of control and unsure of what I would do to myself.

This was where I found myself at the end of last year. I had repeated the pattern, years later. I wanted to be strong, and not give in to the depression. It culminated on Boxing day when I could no longer bottle up how awful I really felt. the tears flowed, and along with them the negative, painful emotions I had suppressed.

I am slowly realising I need to take my own advice. Facing a problem head on; being honest with myself about the emotions I am feeling and facing up to them. It will be painful, but I will heal faster and hopefully gain further self awareness.

A letter about Depression: Shutting down and Disappearing

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To my family and friends:

I’m sorry I disappear. Sometimes I disappear physically; not bothering to keep in touch and sometimes emotionally; I shut down to cope with being unwell. I do this to an extent to protect myself. I don’t want to be judged or rejected for who I am.

Unpredictable tendencies have shrouded my adult life. If you have spent a considerable amount of time with me you may just have noticed. One week I can be full of energy and enthusiasm , ideas and creativity flow easily. I don’t want help from anyone because I feel that I can do anything and everything. I may talk incessantly and very quickly. I may make jokes and comments that are confusing and might only make sense to me.

At times I can become very depressed. I don’t mean that as if others describe it; as having a rough day, a down day, feeling fed up. It may last days or it may last for months, I can never tell. That only thing I know is that suddenly I can no longer function as I used to. All my energy and enthusiasm has gone. I will feel numb and become difficult to talk to. I don’t want to see anyone or go anywhere. I can feel overwhelmed with the idea of talking to people, to the point of crying uncontrollably.

When I’m low I shut down and my concentration wanders. I’m not being rude when I don’t respond to what you say, or take weeks to reply to a message. I simply can’t interact socially; I can barely get out of bed.

Sometimes you may feel you need to tread carefully with me. I can be overly sensitive, irritable or just aggressive. I know that this can be frustrating, it is for me. I have never liked the term ‘treading on eggshells.’ The idea that people I care about feel they can’t act naturally around me is upsetting. If you feel you can’t, then let me know; it might help us both feel more comfortable in each others company.

I have always found it difficult to keep in contact with friends and extended family. I don’t want to use it as an excuse but I think my illness is one of the main reasons for this. If I have lost contact I wasn’t trying to be rude or standoffish I was merely trying to feel healthy again, to be on a level kilter for a change.

I will never apologise for being honest about having Bipolar. It needs to be talked about and I can’t be around people that are uncomfortable or disagree with this notion. I may lose friends, but I’m ok with that. People are too often happy to live their lives in denial, pretending everything is as perfect as their Facebook page. I will never be like that.

I hope we can stay in touch, and that my openness about my illness has helped you understand why I sometimes act the way I do.