I have been reading a lot lately that has reminded me how frail humanity is. How vulnerable we are. Our bodies, our nervous systems, the balances of the chemicals in various systems that keep us functioning are so finely balanced. And so, so often is our sense of self. Our sense of our own competence and worth. We become vulnerable to so many thoughts and perceptions that we may once have never thought possible – may once have thought weak once this is penetrated.
I have been reading people’s writings – people who are feeling worthless, yet working daily at moving forward – at overcoming illnesses that sap energy and personal reserves like parasites. For as surely as I breathe Depression and Bipolar Disorder, Seasonal Affective Disorders, Psychosis, Schizophrenia, Personality Disorders and Anxiety are parasites that draw upon the heart and soul, the will and desire, the sense of purpose and confidence in one’s own capacity.
And yet as I read I see evidence that these illnesses and disorders are liars. I read words written by brave people who are still wrestling, still fighting, still entering the ring round after round. Sometimes they come out on top. Sometimes they come out feeling hopeless and defeated. But I say this. While people are still willing to step into the ring, they are not losing the war.
The human body, while fragile is also amazingly robust. We survive enormous things. Our bodies fight infections. It is well designed to protect its more fragile organs. It is our sense of self that is the fragile part.
Each person is unique.
Each person has a different combination of qualities – of strengths and weaknesses to the next.
Each person has something about them that is admirable. Worthy of respect.
Each person is entitled to dignity.
It is hard to breathe, hard to grow, hard to believe any of these things amid the lies of mental illness when it is out of control and where it has left its scars. It is hard to believe that friends still care when they are getting on with their lives while you are feeling stagnant and stuck wrestling just to keep your head just above water. If they haven’t been here they can’t possibly understand that you are feeling left behind. And so friendships grow fragile too.
Families tell us anything from we “just need to try harder” to telling us “not to push ourselves” because we’re too fragile. Sometimes they expect the world of us – and sometimes they seem to expect nothing at all. I’m not sure which is worse. Those who push too hard make us feel like we are inadequate and seem to think that we are just lazy – and that does wonders for our sense of self. Those who seem to think that we are too fragile to try don’t inspire hope that anything will ever get better although they mean well. How hard it is for a family to understand if they have never been here. They usually mean for the best – which leaves us feeling guilty for being annoyed by at their lack of understanding. How do we deal with this? Most of the time when we’re not well we’re not in a state where we feel eloquent enough to express ourselves well and we fear that it will all come out the wrong way. Sometimes it has before. And so some of us feel that our family is far from us.
And so we stand; feeling as though we could break at any moment. Our lives, our friendships, our relationships with our families, our very selves.
Hear me say – I believe that people who make it to this point can still be strong. Simply deceived.
Yes, your situation may be fragile. This does not mean that you are weak, undeserving of hope or inadequate.
You don’t have to believe me. You don’t have to believe it’s true as though you have had some kind of epiphany.
But treat the thoughts with the suspicion they deserve. Perhaps the same suspicion that you treat my claims. Keep stepping up for another day. Keep looking for tools to arm yourself with – mindfulness, sensory strategies, CBT, relaxation (see the link in today’s poll), self-affirming statements, support people, distraction, your medications – whatever is positive and works for you.
You too have strength within you. Even you – the one who doesn’t believe me yet.
My parents have come to visit – so I didn’t think I’d have time to blog.
But here’s the thing …
I’m too interested in the things I blog about to leave it alone.
I’ve enjoyed sharing some of my early experiences of Mindfulness. I hope that some people have found it valuable and that it has helped some to grasp a little more clearly the concepts behind it.
Being present in the moment, self-aware and able to be aware of your environment or choose to filter what you attend to. Being able to focus your attention, your thoughts and meditate on or observe things. To be deliberate in all of this.
It is a refreshing experience and helpful for many things from distraction to relaxation, to stress management and through to managing early warning signs and symptoms. If you’ve not had the chance to learn it, I would highly recommend it. It is a more concrete skill than it sounds at times.
I have had fun today. I enjoyed having my 5 and 3/4 year-old niece do my hair for me this morning (one must not leave out the three-quarters!). When I got home (after driving for a quite a distance and stopping to get out of the car and fill up with petrol) I believe that I pulled 7 elastics and 2 clips out of my not-so-very-long hair (ie it had bunches sticking out in all directions).
I don’t think that she believed that I was really going to leave it all in until I actually left.
Playing hairdressers with one’s niece is a lot like a dare. She knew I looked silly, and didn’t really think I’d leave her handiwork in – but wanted to see if I would.
What she doesn’t know is the kind of things I did to my own hair for the hell of it when I was in my teens and went out with still in just because I was bored.
My niece is good therapy for me. When I am with her I forget to be anything but open to what she wants to do (except if it involves running too far or something against the rules). I lose most of my inhibitions and allow myself to play like a kid again. She lets me enjoy the moment in her company for just that little while – and while I am with her I feel whole.
One of the factors that I have spoken of recently that has affected my mental state is the change of season. I become more vulnerable to symptoms of Depression and need to be careful not to be taken captive by them and dragged back under the control of the black dog as he strains upon the lead. October this year has been fraught with tension as the dog hauls away at the lead while I wrestle endlessly to bring him to heel and keep him there. While each time he strains, I have brought him back – it takes a lot out of me and he knows it as he waits impatiently at heel for the next opportunity to pull away. I have had a tiring month.
How do I know when things are starting to get too much?
One of the things that I have decided to work on is paying closer attention to the cues that my body gives. It’s very easy not to be aware of these until I have a nasty headache, my shoulders ache, my muscles are all sore, I have a noticeably palpitating heart rate that makes my chest feel hollow and heavy or I feel exhausted.
I commented in my last post in closing about Mindfulness that one of the areas that I need to work on is that of noticing what is happening in the moment. This is what I am working on at the moment. To start with – to notice the cues that my body is giving me. For instance, when is there a change in the level of tension at key points in my body like my neck, shoulders and jaw? Am I breathing deep, medium or shallow breaths, what kind of rate am I breathing at? Am I aching anywhere? What is my heart rate like?
Now I don’t do this as a checklist and step through it or try to determine these things in a specific way. What I am learning to do is to try to do what is called – in Mindfulness language – a ‘body scan’ at regular intervals.
What does a body scan involve?
Essentially all I do is start out by observing my breathing until I am into the mindset of observe – not control. I then move my attention to my heart and notice and feel the rhythm of my heart beating inside me and the sensations that arise from that and enjoy that for a little bit. From there, I start by noticing the feel of the clothes on my skin, the shoes on my feet if I’m wearing any and then move my attention to my muscles. To scan my muscle I start by placing my attention on my toes of one foot and paying attention to them, noticing any tension or pain or other sensation, acknowledging it and – if it is tension, consciously releasing it from the muscles by either picturing it draining away or stretching and/or wiggling them. I then do the same for the other foot and move on to the next section of my leg and do the same thing. And doing this throughout I might move through the body in a pattern something like:
Lower arms and wrists
I figure that since the shoulders bunch up so easily, it doesn’t hurt to check them again. It doesn’t really matter what order you do it in though, nor how big or small the groups you break them up into are to a certain extent.
After scanning and relaxing all of the muscle groups, I then observe my breathing again for a moment or three before drawing my attention back to what is in front of me to do. It doesn’t take very long, and with practice it should take perhaps a minute – maybe less. If I try to do it when the little ‘beep’ goes on my watch on the hour (when I hear it), I should get lots of practice and stay well on top of these cues.
The goal is to be able to notice the tension before it becomes problematic and to be able to question whether I am becoming stressed before I get there. A lot of people who do this regularly swear by it. I guess it’s a bit like paying attention to when there is tension growing on the dog’s lead when walking a dog. As it grows, it cues us in to the idea that the dog is growing more likely to want to get away from us. Thus it is living with my black dog. I must be wary of tension.
So – here’s to my next excursion into the world of mindfulness. Noticing physiological changes and discomfort and either accepting them or letting them go without blame for their getting there.
Here’s to the next step into managing my Depression. Noticing the cues that early warning signs are present so that I can act. Perhaps October will improve from here on in.
One of the therapeutic approaches that I use to help manage my Depression that regular readers will have come across previously when reading my blog is Mindfulness. Among other things it is helpful for dealing with thoughts, coping with stressors and managing physiological symptoms. It has been used to help people manage symptoms of a range of mental health issues including Depression, Anxiety, Bipolar Disorder, psychotic illnesses, Personality Disorders and Eating Disorders.
My first experiences were vague explanations by people who I worked with about being present in the moment and awareness. These are true and make a lot of sense now – but Mindfulness made the most sense to me after my first experiments with it with my Clinical Psychologist when I was, myself, in therapy. The experience itself made an enormous difference to my understanding and appreciation of the discipline. For this reason, I thought that I’d share with you some of my experiences with the use of Mindfulness.
The first exercise
My introduction to mindfulness included eating a mandarin. The exercise involved taking the time to notice all of the sensations that were involved. The scent of the fruit, the feel of the skin, the firmness of the mandarin before it was peeled, the colour, the weight, the sensation of peeling the mandarin. I was to notice the texture of the inside outside of the skin and then the feel of the fruit without the skin on, the look of the fruit with its segments and the white stringy bits, the juice. While eating it I noticed not just the flavour, but the texture in my mouth and the sensation of swallowing. I paid attention to the sticky juice on my fingers and the sweet smell that it left on my skin before I washed my hands. The idea was to be fully in the moment and to engage and experience all of the senses. To be mindfully – deliberately into eating that mandarin.
The breathing exercises
After learning about the need to experience the full extent of whatever I was doing, I did some breathing exercises with my Psychologist. The idea was not to control the breath, but to observe it – pay attention to the movement of my muscles, the sensation of the air in my body, the sounds of the breath and to concentrate my focus on that. If I was distracted, I would just think to myself “oh, I’m distracted” – or whatever – and return my attention to the breathing. It was hard not to start controlling the breathing – but relaxing. It took focus, but was refreshing and left me alert.
My homework was to practice this and I also had an exercise where I was to start out with the breathing exercises and then imagine the breath that I was inhaling circulating all the way to my toes and paying attention to my toes and then following my breath as I exhaled. From here attention moved, with my breathing, progressively from the toes to the feet, up the legs, along the other leg and then through my body and my hands, my head and back to just focusing on my lungs. If you have ever done progressive muscle relaxation, the process is similar – however this was more to do with gradually moving awareness through the body. Again, the instructions were to allow yourself to just dismiss distraction and go back to the exercise at hand. I also felt more self-aware and awake after the exercise. That one lasted about 15 mins.
The Wii game
There is a game on Wii Fit where you have to sit really still. The graphic on the screen is of a candle and from time to time you get annoying things like a fly or mozzie and footsteps and so forth that come to distract you. But you need to sit upright and still on the balance board for 2 mins to win the game.
I have found that this is a great exercise for my Mindfulness skills. I sit in an alert and comfortable posture. I focus on my breathing and I use my skills that dismiss distractions by acknowledging that they are there and accepting it to deal with the insects and so forth. I can sit for the whole 2 minutes using my Mindfulness skills!
A while ago I was staining a piece of furniture. I needed one hand to hold the tin of wood stain. I was using an elbow and shoulder to stabilise myself in the most awkward position ever (!!). The other hand was occupied with cloth working the stain into the grain of the wood. And there was a fly buzzing in my face throughout.
Now, the same way that you consciously turn all of your senses, you may choose not to do so with some – so I am not focusing upon the fumes. But again, with the discipline to focus on the here and now and what I want and is important, I can also notice and dismiss what I don’t want. The fumes. More particularly in this instance, the fly that just wouldn’t go away. Rather than let it get me irritated and waste all that energy, the practice allowed me to focus on my work and when the fly was distracting just acknowledge “There’s that fly again. That buzzing is loud. I wish it would go away.” Yes I would blow at it to try to discourage it – but no, I managed to deal with the fly without it driving me mad. I considered this to be an achievement!
The job interview
I had a job interview at the other end of town. I had a horrible time getting there. There was more traffic than I anticipated, I think the tail end of a blockage after there had been a prang. Plus I had been pushing the clock harder than I had wanted to be to start with. The end result was that I was late to my job interview.
I was so flustered by the time that I got there that I couldn’t think. My mind was pumping in circles. They handed me the interview question for my preparation and all I could do was think,
“How am I going to pull together to do this?”
So I stopped myself. And before I even looked at the questions I took 2 minutes out of my prep time to do my breathing exercises. I then gradually brought myself back into awareness of the room around me and focused on the task at hand. I was alert. I was focused on the task and I was calm. I had also put myself into a position that I could acknowledge that the situation was less than ideal and just accept it to focus on what I could do something about. I could have compassion on myself for finding myself in an embarrassing situation, yet function within it and set myself to do my best in the here and now. I prepped my questions briefly in what time I had left although I didn’t have time for much depth and then did the interview – again thinking clearly, because I was able to focus on the here and now.
In the end I think the fact that I pulled myself together worked in my favour. I was offered the job, but turned it down. Mindfulness got me through the job interview but it would not get me over the travelling time in peak hour traffic any quicker.
The terrible, no good, very bad day
Then there was the day that nothing went right. Well it seemed like it. I slept through my alarm. Right through. Things went wrong at home after I got up. The trip in was slow. I was very, very, very late for work. Lunch time late. I missed several appointments and was flustered about what was left of the day. I had no idea how I was going to finish the day or face anyone. After freaking out when I finally got to work, I finally stopped and thought, “I know better than this.”
So I paused. I took a deep breath in and let it out, focused my attention and started observing my breathing. I then started to pay attention to the feel of the pressure of the chair that I was sitting in and the sounds around me – not listening, just noticing – the clock, various voices, footsteps; I paid attention to the feel of the clothes on my skin and then turned my attention to my muscles and which ones were tense. I relaxed my shoulders and my jaw and went back to my breathing and did a short version of the breathing exercise where I imagined my breath reaching every part of my body and then just focused on how it felt to breathe for a couple of moments.
After this I allowed myself to think about what I should do next. I had to accept that I was late and that I’d missed morning appointments and that because of that my afternoon wasn’t going to work as well as I had planned. But I could now, thinking in the moment accept that just as it was and act in a manner that was compassionate toward myself, rather than sit there blaming myself for things that I might or might not have done. It was okay that I was a bit frazzled, that was understandable – so I just needed to plan for that too. From there I was able to return to the moment and begin the rest of my day, planning things out and actually achieved a reasonable amount – something I wouldn’t have done in the state of mind I had been in when I arrived.
The road so far …
It has taken a while to learn some of the basics of Mindfulness and get used to putting them into practice, but the journey has been infinitely worthwhile. I still have a long way to go. I’m not good at meditation – I tend to be more utilitarian in my use of it. I still need to remind myself to start and could prevent some situations by starting earlier. However, it helps me to focus and to be able to be where I am, doing what I need to or want to be doing at the moment of time that I’m at. My next step in the journey is to become better at noticing things about myself in the moment. I think that this would prevent a lot of difficult situations and to help me to monitor my early warning signs.
And if climbing back on aft’ one spill weren’t enough –
Alas – staying on top is an art!
For most of us who have passed though one episode of depression – or other forms of mental illness and come out the other side, a common concern draws us. We don’t want to go back there.
Some have a harder battle ahead of them than others. Some have different forms of depression; different forms of anxiety; different forms of mental illness that are more or less responsive to the things that we do to treat them. Some are more vigilant than others – often this makes a big difference … and sometimes life’s not fair. Some do all the ‘wrong’ things and yet never have another episode – but that’s unusual.
What’s usual is hard work with a need to use a range of strategies to stay well. Things like good sleep, exercise, a nutritious diet, keeping up social support networks and getting out of the house, exposure to sunlight and fresh air, use of medications and talking therapies are just some examples of these.
But how do we know that we’re winning? What can we do at the times when we’re worried about how our mood is going to try to prevent it from tipping over the edge into something we can’t manage? How do we know if that new medication is doing anything to change anything at all?
One of the things that is helpful to do at times is to track your mood. How do you do this? You use a mood diary. Ever done it?
The purpose of a mood diary is essentially to get a profile of what pattern your mood is following on a day-to-day basis. At their most basic level, a mood diary will ask you to rate your mood on a numerical or incremental scale every day while you keep it. Some will additionally ask you to record other information such as your anxiety levels, your irritability levels, how much sleep you had the night before, significant events and triggers throughout the day and/or the medication that you took. The good thing about doing some of these other things is that they provide a much fuller picture of what is going on.
If you don’t already know what they are – this process can help you to work out what your early warning signs are as well as your triggers. If you know your triggers and early warning signs, this can help you to monitor them. For that reason, I recommend choosing a mood diary that records significant events in the day. I would also recommend one that includes the amount of sleep that you had the night before as this tends to be pretty universal and fairly influential.
Talk to someone close and ask for their help if you have trouble working out if you were irritable or if they noticed anything in particular that seemed to set you off if you are having trouble identifying these kinds of things – but the object of the exercise is to make observations about yourself – so do what you can on your own as well.
However, asking someone close to you whom you trust to help monitor your mood and to help you get to know your warning signs and triggers is a good strategy. They sometimes see things that you are not in the right place to see or notice when you’re not well because your self-awareness can get a bit skewed. They also see the ways that you differ from the way that you would normally be – so they can measure you against you and not somebody else. Yes, it might be their perception – but it will still be your behaviour and actions and the things that you say and the responses and facial expressions that they are used to that are part of you. Choose someone who you trust and talk with them and let them tell you about what they noticed changing last time and as you have been working through your recovery.
Do I use a mood diary and self monitoring systems all of the time?
Not on a daily basis. When I am well I keep regular tabs on how I am going by talking about it with a good friend and checking over my early warning signs and triggers list regularly to ensure that my awareness of them is good and that I am alert to high risk periods. I use what is called a WRAP – a Wellness Recovery Action Plan where I have identified what I am like when well, what my triggers are, what things are hints that I’m not as good as I could be, my early warning signs and so on …. I go through this regularly. Some people do monitor their mood daily and find that it works well for them. People with things like rapid cycling Bipolar disorder often find that they need to until it slows down and is brought under control. At first I needed to chart my mood a lot more than I do now.
When I am in a high risk period I watch things more closely and have recently resolved to keep a mood diary through high risk periods because I still find myself at sea sometimes and feeling like I’m losing my grip. I am particularly vigilant about my warning signs and triggers as well as their corresponding action plans during periods of high risk. I have to be. Recently I let things go at home and let the dishes and the housework pile up around me – a sign that things are getting away from me and didn’t act and it triggered me (it becomes a cycle). I couldn’t face getting up to look at the house. I didn’t want to go into the kitchen to prepare a decent meal because it was a mess and I didn’t feel up to cleaning it up – so of course my nutrition level went down, my budget blew out and thus the cycle continued. In the end it took a cleaning weekend to put me back on track, followed by a week of very early nights and a lot of discipline. It’s too easy. So I have decided that I need to do something to catch myself more quickly before it gets away from me. Not simply cleaning, just lots of little things. This time of year I need to be very careful about relapse prevention. It sounds minor when I talk about dishes – but when it snowballs, I just keep sleeping and if I sleep through work or go in late consistently and am still going around in circles while I’m at work and don’t have energy or concentration to work – I could lose my job.
I’ve attached today some links to some self monitoring resources and different mood diary sites. I know there’s a lot, but different things suit different people and I think these are important tools. Most mood diaries have room for the full spectrum of mood disorders – both mania and depression.
Warning signs and triggers are important. Monitoring your mood is tedious sometimes – but there are times when it is necessary.
If there are around 7 billion people in the world, then I reckon that there are about 7 billion ways to explain depression. Seriously. Everyone is so different. Just when you think you’ve nailed a way to explain what it is and how it affects you, you come across someone for whom that explanation just doesn’t cut it. Now, I know that it’s not necessary to tell everyone what is going on. It is not everyone’s business and not everyone even wants to know. But sometimes it’s necessary – and necessary that they have an understanding of what depression actually is rather than just what they assume it to be. If someone is going to support you, live with you, take your sickness certificates seriously when they start piling up or you relapse in the work place – they need to understand more than just what they see at surface level.
So how do you get there?
How do you explain that you have this black dog that is constantly with you, even when under your command and at heel?
How do you help someone get past the idea that you could just put mind over matter if you wanted to?
How do you convince your boss that you’re not being lazy? Or taking sickies?
How do you convince your grandfather who is not very aware of mental health issues that you are not a hypochondriac?
Do you find yourself getting into arguments over these things? Being left feeling guilty and doubting yourself because of the things that people say? Feeling frustrated and defeated because they just don’t understand? Or just feeling out of your depth explaining the nature of depression, it’s causes, what perpetuates it and what helps to treat it and to support your recovery? You are not alone. Do you struggle to understand these things yourself?
The first step in becoming more confident explaining what is happening to you to someone else is to become more confident in your own understanding. Write down what you know. Organise your ideas under headings like
My Diagnosis (there are different types of depression):
Definition of diagnosis and Symptoms:
Thoughts (ie what it does to them, not necessarily yours although you may include a couple of less risky examples):
Behaviour (ie what people do because of depression):
Effects on function and everyday life:
Treatments that people use (ie medication and therapies):
Treatments I use: How well my treatments are working (and if you are thinking of trying any others some time):
Things recommended to help recovery:
Things that I do/am doing:
Things that are recommended for carers/supporters/workplaces who are supporting people who have depression:
Resources that I have found that might be handy to give people:
How did you go? Where are the gaps?
The next step is to dig around and fill in some of the gaps in your own mind. Make a list of the questions that you still have. You don’t necessarily need to have them all answered before you talk to someone about your depression – but they are there for you to follow up on for your own benefit. Sometimes you can also make a joint venture out of finding the missing information with the person you plan to talk to if they are someone who you trust. If anyone would like me to work through a series on these or to post any heading in particular I’d be happy to include something like this in future entries. Please put any suggestions or requests in the comments section for this post.
When you have thought through these things for yourself and written them down – if you come to a time when you need to pull your thoughts together for an explanation it is so much easier to do. The next thing to think about is this. What type of person or question are you dealing with?
People like your grandparents and some parents have been brought up in a generation where sickness is seen in form of a disease or medical issue – so with them, I would start by explaining to them the aspect of depression caused by biological factors and that it’s an episodic illness. Perhaps I would give them some information to read, or would talk to them and describe what happens – maybe draw a diagram of a synapse and show them how my neurotransmitters are out of balance. Then I would tell them the symptoms that causes and how they affect everything else. Then I would go back to my drawing and show them how my medication works and talk to them about why I need to keep on taking it. If they were interested and wanted to know more about my treatment, I might also explain that I go to a psychologist to learn techniques to overcome other symptoms too because they have become fairly stubborn and I get lost in them at times – but that I don’t expect that this will be like the medication, and it’s not like lying on a couch talking. It’s about learning specific skills and having time limited therapy that has been show in the research to be very effective in strengthening recovery and preventing relapse. I might then tell them about my goals and what I’ve been working on and how things are going. Lastly I would talk to them about what kinds of things experts say that family and friends do that help. If they wanted something to look at for more information, I would try for something from a doctor or official health site, in large print if I could find it.
For siblings and friends – it probably depends upon how they relate. Some will understand best if you describe it by its symptoms and numerous courses, some will need a scientific approach, others will need an explanation of the treatments that they see you taking and using as an entry point. Usually family and close friends want to know what they can do and feel frustrated when they feel helpless. It’s important to make sure to give them information about your symptoms, your treatment, what your doctor thinks is causing it and what they can do to support you. Sit down with them and talk about what helps if they are involved in your life. If they are not talkative people, gradually feed them things to read.
I’m not going to talk about young to school-aged children here because I want to talk to a friend who is a specialist in this area and do a special post specifically on this topic at another time. However, for adult children my advice is similar to that which I have written for siblings. Generally they want to feel that Mum or Dad is okay. Yes, it’s strange and they start hovering as though they were the parents and can get overbearing at times. Other times they may be so caught up in their own lives that they don’t even seem to notice. In both cases, it’s important that you are ready to educate. If you don’t have the energy for the conversation, young adults will respond to websites. Sending them to http://www.beyondblue.org.au , http://www.blackdoginstitute.org.au and http://www.scottishrecoverynetwork.net will get them well oriented to Depression, treatments and some people’s experiences stories if they look around. There are also great resources there for family and friends. Then they can come back and talk to you about what they have learned.
Then of course there are your parents. All the strategies in the world will not stop their concern at times. This is part of their world. For most people, when things are hard – all a parent wants to be able to do is make it better, easier somehow. It’s the nature of the role and love that they have had no matter how old we get. I am aware that there are people who are not lucky enough to have families who have cared for them like this – but on the whole, a parent’s response to any perception of threat to your wellbeing is a desire to protect you (remember, that one that’s been driving you nuts since you were at least as young as 14). When talking to your parents about your depression remember this. Once a parent – who has considered themselves a carer or a protector throughout your life when you have been unwell or threatened – accepts that you have depression and understands the nature of the illness, they will find it difficult to respond to as well. It is good to have information designed for families and carers for them if they find watching you struggle hard. Make sure that you spend time talking with them about what helps and what doesn’t. Calmly. Write it down first if you need to. I share things to read with my family. They don’t say much, but their education shows in the things that come up when we are talking about my health or my plans for the future.
My observation from working with people who find their parents “too interfering” is that often in by not telling them anything about what they are doing for their depression – is that a lot of the parent’s interference is related to ignorance; and that more, rather than less information about what is going on, better education for the parent and some help to reassure the parent that their son or daughter is making healthy choices goes a long way toward defusing the situation. I know that this is not true in every case, but frequently it is. And while some of the parents need to learn better adult boundaries, others are just desperate for the wellbeing of their son or daughter. It may not be possible to put all of your parent’s concerns to rest. This is not your job. Nor is it your job to protect them from ‘finding out’ – because ten to one odds say that they have already noticed that you haven’t been yourself for a while and are already worrying in secret if bothering to hide it. Explaining the true shape of the issue that you are dealing with and telling them how they can help rather than leaving them to shadow box with the ghosts they imagine is all that you can do.
Sometimes, unfortunately, like we might have been to start with – the people we care about or people we need to know may also remain in denial of depression in someone they know. This is very hard. Sometimes a family member might respond if they come to the doctor with you. Other times it may be a case of letting your treatment and the efforts that you are putting in prove themselves over time. It is hard to be motivated to do this with someone saying that you are being lazy or playing sick. It doesn’t help the thoughts. It can increase anxiety. It is humiliating even to one’s self. If the person won’t respond to your attempts to talk to them or to give them information, unfortunately it is difficult to make their choices for them. However, the best way to deal with them is to prove them wrong. The best way to prove them wrong is to prove that the treatment that you are undertaking and the effort that you are putting in is having an impact. Even if it’s a partial impact that goes in fits and starts – change can be a catalyst for more change. Perhaps seeing a change in you as you progress will convince them that there was something to that information that you tried to give them a few months ago…
Ever want to hear a room full of doctors or mental health workers stop talking?
Introduce debates that have been raised in recent years questioning the effectiveness or the place of medications in the treatment of mental illness. Suggest that there might be evidence of options that would be more appropriate starting points for treatment. Ask them whether they would be ready to choose to live with the side effects that may result from some of the anti-depressants that are out there.
Have I surprised you?
I am not anti-medication by any means. I use medication. Unfortunately, at present, a lot of it although I hope in time to be in a position to reduce this. There are some people who are. They say that Depression can and should be managed by using strategies such as those that I discuss in “Beyond Medicine” with use of lifestyle strategies with regularity and discipline as well as well evidenced ‘talk therapies’ that build skills and resilience like CBT and Mindfulness. Some even think that medication makes depression worse.
There are now groups who go over research that comes out about treatments to see what standards people are using to measure ‘success’ of treatments against and how it really measures up with other treatments if judged by the same criteria (eg http://www.power2u.org/medication-optimization.html ).
My depression falls within the ‘major depression’ and severe spheres. That is within the spectrum of severity where it is clear from research that anti-depressants have a measurable effect. It can be proven that they make a difference. Research is finding not much evidence to prove that medication makes a measurable difference as opposed to placebo or other forms of therapy for mild depression and little more so for moderate depression. Now, that’s not saying that there are no cases where it doesn’t work and all cases where it won’t be worth a shot – or that you won’t underestimate how severe your own depression is. I certainly did at first. What it does say is that it is worth asking some serious questions and exploring a range of other treatments either before or instead of medications.
Consider the some of the side effects of antidepressants.
Short term side effects of SSRIs can include nervousness, anxiety, muscle tics, suppression of REM sleep (and then drowsiness), nausea, dizziness, diarrhea, gastrointestinal problems, different types of sexual dysfunction, emotional blunting and apathy. With long-term use come risks of cognitive changes. Now most short-term effects will pass as the body gets used to the medication, but still …
Tricyclic antidepressants have potential side effects that include blurred vision, dry mouth, constipation, bladder problems, sexual dysfunction, dizziness, drowsiness and increased heart rate among others – again some settling after a short time and others continuing. Not everyone gets any or all side effects, but most experience some.
If you take MAOI anti-depressants, then you can’t eat certain types of food. Potential side effects here include low blood pressure, constipation, vomiting, headache, altered sleep, dry mouth, drowsiness, fainting, sexual dysfunction, weight gain and lower alcohol tolerance.
And people wonder why people stop taking medications!!?! Do you want to take them? How will they help you? Sometimes trying the non-medication based therapies first does make a lot of sense. While it seems easier to just take a tablet, how confident can you be that the tablet will make you feel better? Mine do. But remember, firstly, my Depression is severe and secondly, I also need to bolster it with management strategies that aren’t medication-based. I need both.
Here’s the thing though. What ever you do decide to do – make sure that you are fully informed. Do your research. Also – ask your doctor the hard questions like:
“Why this medication?”
“What are the side effects? How long would I expect them to last?”
“Are there any risks associated with this medication?”
“Will I be able to keep working while I start taking it (if you are working) or will it affect my performance? Should I take a few days off?”
“How will I know if the medication is starting to work? How long should it take?”
“Are there any precautions that I should follow over the next few days/weeks?”
“What happens if this medication doesn’t work?”
If you do agree to try a medication, stick with it as advised. The time frame your doctor gives you for how long it should take to work will be only an estimate. Also, some medications are dangerous to stop unsupervised. If you are trying a medication, consider it a joint experiment by yourself and your doctor. You bring your expertise of your experience and the effect that the medication has upon you. Your doctor brings medical training and independent observations. Both are needed to make an informed decision about where to go with your medications.
If you are on long-term medication, you doctor and yourself share a partnership. Again, you are the expert on yourself, your symptoms, experience and how the medication is (or isn’t) impacting your life. Your doctor is the expert on the medical facts, observations and assessments as well as the medication itself. In any partnership for decisions to work to their best advantage both people should be involved in the decision-making event – even if the right of decision is mostly with one person. This means that both people’s expertise can be used. Sure, ultimately, it’s your life and your right to agree or disagree with your doctor’s medical opinion – but when there’s medication involved and you want to change it or come off it, at least informing them is a smart thing to do. They can then tell you if you need to know about any risks and you can ask them what you need to know to make sure that you are safe. You can also make a judgement call about how much you think you can manage with your own strategies with a lower dose of medication in place and work to negotiate this with your doctor.
Ultimately, I think it comes down to the type of depression that you have. Some don’t need medication. For some the decision could go either way. And there will always be some that need it. However, the question about whether we do or don’t use medication is weightier than deciding whether we can tolerate side-effects or would rather carry a load of self management strategies that may seem burdensome when we feel so amotivated.
We all need the self-management strategies. These have been proven to be effective in reduction of depression regardless of the level of severity. Our decisions about medications need to be weighed carefully. How much of the work are we expecting them to do? They are a tool, not a workshop and not a finished project. They are designed to equip us to work at life. If they’re working, you’ll be able to take up the management strategies that are more lifestyle driven and see your mental health improve to wellness. Sometimes with meds still in the background. Yet for others, in time a mutual farewell to the partnerships with doctors and health workers gives way to a continuing lifestyle-driven means of managing wellness.
It goes through my mind on a regular basis. Like – every time I run out of a few medications at once. And especially on those really special occasions when they all run out at the same time. You know the ones? Or perhaps you don’t.
Me – I have what is known as Treatment Resistant Depression. It means what it says. It’s a bastard to treat. It doesn’t respond to the basics and I go to a psychiatrist who is a specialist. Yay me! It also means that what works is an interesting combination of meds. This is complicated by the fact that my depression is the result of surgery that I had in my early 20’s that also left me with a tendency to partial seizures (now controlled – by medication…). I also have a history of really nasty and persistent migraine that I resisted medication for until the summer when I had them for 4-5 days a week every week for about 5 months and found myself at risk of losing my job over the number of sick days that I was accumulating. I also have low levels of vitamin D and a back injury that has resulted in the growth of osteophytes (essentially arthritis).
I figure that I am lucky to live in Australia where a large proportion of the cost of most medications is subsidised by Medicare – the government scheme to ensure that health care is affordable for everyone. It says something that I generally reach the threshold of what people are expected to pay without further subsidy (Medicare’s safety net) by about October or November each calendar year.
My meds for Depression include Lexapro (also known as escitalopram) an SSRI, Edronax – a SNRI, Lamictal (lamotrigin) which works as a mood stabiliser but is also an anti-seizure medication and Valdoxan – which is only new. I’m taking Valdoxan at a low dose as an augment to my other anti-depressant medication. I’ve tried to go without an augment several times, but it just isn’t enough to hold me – I relapse with the slightest of triggers.
Valdoxan is expensive however because it is not PBS listed (ie not on the Medicare Pharmaceutical Benefits Scheme list) but is sooo much better than Lithium which is what was what was used as an augment before. Valdoxan wouldn’t replace Lithium for someone whose primary medication need was for Lithium – but as an augment it has been great. It helps me sleep at night, doesn’t leave me drowsy through the day, doesn’t put on weight or make my hair dry and frizzy – just costs a lot of money. But it allows me to function so much better than the Lithium did that I don’t begrudge a cent. I also take a very small dose of Abilify which has helped with some other weird symptoms that used to come when I was low on sleep.
Next, I take Topamax to prevent migraine. Much as I hate to admit it – this has proven very worthwhile. While I still get an occasional breakthrough migraine a few times a year – they are nowhere near as severe, don’t last more than a day and don’t leave behind the ghost migraines for days afterward. In short – I can function. On top of this I take Vitamin D supplements and Glucosamine with Chondriatin (and I notice the difference with my back stiffening if I stop taking it).
Finally, one of the fall out effects of my depression has been the decrease in concentration and attention span that has come with it. This year to see if we can improve that my doctor has been prescribing me a low dose of dexamphetamine – and I think it’s working. The catch has been that it gave me tremors in my hands and, in the beginning, headaches – I had finally managed to get rid of all antidepressants that caused this – so it was back to the Propanolol for me to get rid of the tremors. Propanolol also helps with prevention of migraine too, so it adds a bit of reinforcement to the Topamax (not that I would take it if it wasn’t for the tremor!).
That, ladies and gentlemen, totals at eight prescription medications and two over the counter alternative medications. Not what I would call ideal – but they all serve a specific purpose and thinning them out would leave me very vulnerable to relapse – trust me, I’ve tried – under the supervision of my doctor whom I’ve told point-blank that I won’t take something or other … several times. One day I hope to successfully reduce them, but I think that it will take a lot more skill in managing my depression on my part, more research time, planning and preparation.
I buy the Vitamin D and Glucosamine at discount pharmacies.
The rest I go to the same pharmacy for all the time. This helps if I run into any trouble with any scripts or if I’m physically ill – they’ll run it around to my place for me. Also if I get prescribed something else or go to buy something over the counter – the pharmacists there know what else I take and can tell me if it will cause me any problems.
Recently I had to get all my scripts filled at once. It cost a lot of money. At first I cringed. But really, I’ve done this before and its nothing new. It’s about four weeks medication that I’m paying for. I know how much my medication costs. In the end I just shrugged my shoulders and paid. I said to the lady who served me the same as I’ll say to you.
“A day’s wages is not a lot to pay in exchange for the ability to function for a month.”
And I’m not talking ATM.
Have you ever felt yourself to be up against that dragon that you were never destined to slay? That worm you’ll never be early enough to get? The one that leaves you feeling like the Emperor in all his glory when he set out in grand style to show off his ‘new clothes’ just when you think you’ve gotten a hold on it.
My nemesis is time. Not just any time – although we have a slippery time keeping pace with each other continually. No, the ultimate battle is drawn around the time of sleep and waking. Here I am repeatedly mauled by my dragon, eaten by the worm and left with nothing but the Emperor’s new clothes to show for all the effort that I have made to conquer the struggle. I feel as though I am beating my head against a brick wall.
What happens you ask?
I set an alarm clock. Actually I set two alarm clocks ten minutes apart. I do not trust myself with one. I have been known to turn one off in my sleep! I set one to raise my level of consciousness and the other to wake me. For most of the year this is adequate. But then comes the changing of the guard – it starts to get light earlier or later in the spring or autumn and for several weeks my dog hides the alarm clocks. He must. Some nights anyway – because they sure as hell don’t wake me. But then I also have trouble in getting to sleep – so maybe it’s not all the dog’s fault. At times I sleep no more than an hour or two a night. Others I may get to sleep and then wake up at two in the afternoon – ON A WORK DAY! This year I thought that I was winning at work until the seasonal sleep monster set in.
Right now I feel like I am beating my head against a brick clock. In getting to sleep. In waking up. In getting to work. My psychiatrist has given me something to try for the short-term (ie 4-6 weeks) as it’s a regular pattern and struggle and part of a bigger picture of short-term seasonal change in my mood. It’s not a relapse – just a dip. But oh so disappointing because its been so stable for so long. In lots of ways I think I could handle it if the sleep didn’t go out the window. It’s started to affect my work though, so I’m taking the medical option this time. Maybe next time I’ll be able to have the personal strategies down strongly enough to manage it without boosting my meds for a few weeks – but I need to prioritise keeping my job over my pride for this time. I may have to wake up and phone in to work in the Emperor’s new clothes. I do not have to parade through the streets in them.
So for now I get my sleep under control. I keep my mood stable with a little extra help than usual until the season settles. At least I will be able to keep the dog in his place. At least I will stop messing things up so badly in getting to work. It will only be for a few weeks and then its back to the normal cocktail that I’ve accepted will be a part of everyday. Back to using my ‘personal medicine’ or lifestyle strategies to manage life and its stressors. Then I get summer to strengthen my other skills and to be ready for autumn when it comes. Perhaps I will plan a short increase in meds again. Perhaps I will plan time off work. Perhaps I will be enough on top of my sleep to manage it with flying colours.
My Dog loves the twilight of the seasons. He thinks its play time. He loves the dawn. He dances while I wake.
Oh to be able to open one eye and say in my firmest voice.
“Sit. Dog. Sit!”
And have confidence that he’d obey.
One day. One day he will. One day I am determined to slay that dragon.
Some people are Summer people. Some people, spring people. Some are winter people. Some love autumn.
No, I’m not talking about people’s colouring or the things that they like to wear (that is something that I, in fact know very little about). I am simply talking about peoples’ favourite times of year. Some people like to soak up the sunshine in summery garb out in the garden, down at the beach or over at the local pool. Others love to curl up by the fire in their favourite jumper under a rug with a good book and a cup of hot chocolate – or put a movie on. Some love the colours of autumn and the beginnings of that lick of ice in the early evening. And some the radiant brightness of spring, its scents, the new life, the slow steady warmth, the magpies diving at you from overhead…
I never settled to a favourite time of year. I really do enjoy almost all of all seasons – and by the time one ends I am ready for the next. I am not fond of the days that exceed 40 degrees celsius with no cool breeze for long stretches at a time. Hot winds are their own breed of evil in Australia for reasons far beyond temperature tolerance. I’m not a great fan of temperatures at the other end of the spectrum either – especially if they come with a wind. Actually – wind bugs me more than temperature. But seasons – apart from the odd bits like getting up in the dark to go to work in winter – seasons are a delight. Full of life. At least, I always used to think so.
My dog pays attention to the seasons too.
Unlike me, the dog has clear preferences for different times of the year. It took me a while to work this out, but its consistent. The dog is stubborn in winter. He moves slow. He needs more time. He takes more time and holds me up whether I plan it or not and he wears me out more easily than he does during the warmer months. I think he’s arthritic. He gives me no trouble if I allow for the arthritis though. A bit more sleep – 1/2 hr or so more than I need in summer and I’m fine. I just need to be patient.
Summer is usually the dog’s best time of year. He still needs discipline, but he’s more content to walk at heel and doesn’t drag and tug away at the lead. Spring and Autumn are strange. Most of the seasons fall in with the winter and summer behaviour for Dog according to temperature and what the light is doing. In each of these season there comes a point where the light changes – and over these few weeks the dog goes nuts. He is unpredictable. I can not afford to let my guard down for more than a few moments at a time. My sleep gets poor – this starts the ball rolling. My energy levels become low, my motivation to maintain routine relapse prevention strategies gets sloppy and I soooo don’t feel like doing anything about it. It at these times that I have frequently relapsed (almost without exception). I made it through autumn this year. So far I have struggled this far through the last few weeks. Another 3 – 4 should see me through the worst of it.
Until then, its keep on keeping on and stick to the programme. Watch for warning signs – the very time of year in and of itself is a trigger – even without the presence of other factors. Light does funny things to my health in other areas too. It’s like the dog becomes delirious. Here is a time when I need my friends and family – my supports more than any other time of the year. I’m struggling to get to work on time at the moment, but so far my boss has let me cover with time in lieu. Still, I’m determined to conquer that one too. I get there on time more often than not – just not as often as I should. Just now – when I least feel like it – discipline becomes oh so important.
I had my last review with my Psychiatrist this week. We agreed that it would also be possibly a beneficial thing to increase one of my medications for 1-2 months during the peak risk zone while I’m wrestling risk factors and wavering – just for that short-term – and then go back to my current dose afterwards as the weather and season stabilises a bit more.
Hopefully the combination of ‘personal medicine’ or monitoring of triggers and early warning signs with the kind of action plans that are outlined in my post “Better Medicine” with the temporary medication adjustment will prove to be a good protective measure. I’ve had a good year. I’d hate to mess it up now. I’m hoping to get to at least a whole year without a relapse this year!
So roll on to the latter end of Spring. Because despite all of this, I really do love spring. There’s a certain level of hope and promise in the air in Spring that’s unique to this time of year.
I live with a black dog. It follows me everywhere. My philosophy now is that I need to plan for its needs when I plan for my own. I also need time out and restful places to enjoy the warmth of the sunshine on my shoulders.