Yes, I am still here. Still living, breathing and blogging. Just fell victim to a couple of very shocking weeks (interspersed with some lovely moments, but very few and far between).
This week I’ve barely been able to tolerate daylight, let alone the computer screen – migraine like I have not had in a long time since my medication includes migraine voodoo concoctions … but … amidst my Barry Crocker of a week the week before and the ensuing weekend I became a bit disoriented and missed a couple of doses of my meds, hence the hole in the firewall (just to mix some more metaphors). Yesterday I went to the GP to get a medical certificate for work and stopped at the shopping centre on the way home. Talk about sensory overload! My world had not yet totally stopped spinning so I had this strange spacey kind of sensation as I was walking, the noises were louder and more jarring, lights and colours still bright, smells still sharp. I couldn’t get out of there fast enough!
Work has been crazy and exhausting trying to manage the politics and dynamics within the office. Don’t get me wrong – I like my job. If only work could just be about going and doing your job and coming home again, what a relief it would be! But there are systems and other people that one has to navigate to do one’s job. Equipment that one and space one has to somehow get adequate access to do it. Preferably in a way that lets you stay well without creating more stress than is necessary – which is where the battle lies at present for me. At present it seems that I am destined to bang my head against a brick wall and progress nowhere and to endure life in the office that gets claimed by miscellaneous team members to serve as their staff room – while my office buddy and I are trying to work in it!!!
But alas! These are not healthy things to dwell upon. The goal is to work out how to attack and push through. I had thought that we had had a strategy for the work one, but it is back to the drawing board on that one next week as it looks like this is rapidly fading into embers.
At present I am struggling not to dwell on the difficulties of the last few weeks. I grew frustrated that my usual seasonal dip in mood was dragging on longer than usual, but didn’t really look beyond it for other triggers until much too late. Sitting down with a friend a couple of weeks ago to go over what had been happening clarified things a lot more for me. One of the reasons that I am so focussed on work issues over the past couple of weeks has come about because through sitting down and working through my usual triggers and warning signs with my friend revealed that my workplace is simply loaded with triggers. There is little wonder that I have been struggling to emerge from my usual brief decline and regathering of mood.
It’s so easy to forget to go back to the basics when one gets busy. I can sort of see why Mary Ellen Copeland, the woman who designed the WRAP suggested that going over triggers and warning signs should be something that someone should do daily to prevent relapse. I’m not sure that I would ever go to daily, but I do know that I need to be going over my WRAP a lot more frequently than I do. The whole point of knowing one’s triggers and warning signs is so that you can be alert to them. It’s one thing to know them – but so easy to miss them unless you’re really watching.
So – What do you do with the shockers? Do you beat yourself up over them? There’s no point in that. To me, it seems you need to do is stand back and detach a little. Stand in the moment. Not the future. Not the past. Just the moment. Examine – and for me, it helps if I can find someone to help me stay in perspective … at least to get me going – and learn. This helps me to see cause and effect relationships; it helps me to learn and relearn trip hazards; it helps me see things specifically rather than looming ghouls and it leaves room to remember that there were a couple of good moments in the last fortnight too.
From there I can start with a plan. If the plan needs adjusting, then so-be-it, but perhaps – just, perhaps … next week can be a bit better …
If you have a mental illness do you tell your boss?
Are you obliged to tell your boss? Why or why not?
With discrimination rife in society and difficulty getting friends and family to understand what you are going through, what are your greatest fears in the workplace? Or the study environment? Or wherever it is you spend most of your productive time?
Does your illness affect your ability to do your job at times? In what ways?
Does your boss know? Do any of your colleagues? What led to them finding out?
Whether you are studying or working always consider ahead of time whether you are prepared to disclose your illness. If your current position is non-disclosure, consider carefully any occasions which might arise which might make it more necessary and under what circumstances you may disclose if at all.
Disclosure is always best done in a planned manner. You should have some idea what you are going to say, how you want to say it and how you are going to explain its relevance to your work. If you need some adjustments to your work conditions or some time off, it is best for you to come to your boss with some options that you have considered and reasons for your request. You need your boss to understand that you wish to be healthy and productive as possible and are trusting them so that they are able to best support you to reach a goal that is in both of your best interests. A large proportion of ‘Western’ countries, including Australia, provide legislation to support your right to this.
When you plan what to disclose think in terms of how you are affected by your mental illness more than your diagnosis. You may, in fact decide to disclose only the effects of your illness and not your diagnosis, stating that you have “a condition that affects …”. You may identify symptoms or you may simply describe what it does to you and how that affects your work eg my condition means that I have less energy than I used to have. This means that I have to be careful how I plan my time and that I have to take holidays at regular intervals throughout the year to maintain stable health. I need to be careful to use my meal breaks and leave on time so that I don’t become over-tired. Or my condition means that I need to take medication. When I change medications, sometimes I am more sleepy than usual and over-sleep or become very drowsy in the afternoons. Sometimes my speech even gets slurred and I sound a little intoxicated. So if I’m changing medications I need to take a week off, otherwise I find that I’m coming to work late all week and I sound as though I’m tipsy for half the afternoon and I don’t get much done and am at risk of making faulty decisions or overlooking things because my head is all foggy – especially in the first few days. After that I will be fine at work again, but might over-sleep a couple of times in the 2-3 weeks afterwards while my body gets used to the new meds. It doesn’t happen very often. I’ve only needed to do it 2 or 3 times, but each time I’ve been glad that I did.
You do not need to disclose specify personal or medical information if you tell them about anything at all.
You should also think about when to disclose. That is – when you are applying for a job, before a job interview, during the interview, after you have been offered the job and before starting, during the time you are employed after you have worked there for a while, if you become unwell and need to or never. There are pros and cons of disclosing at each point of the way. Sometimes your circumstances will have presented you with little choice to prevent awkwardness – you may have become unwell at work and have it become obvious that something was wrong or you may have symptoms that you are aware will soon become obvious if arrangements aren’t made to cater for your needs. Again, despite prejudice and stigma in some places you have legal rights to have your needs and confidentiality met and protected within your workplace in most western countries. Further, in Australia at least, if you become unwell because the employer failed to attend to your needs having been made aware of them, you are entitled to compensation under work cover. It is however, worth serious consideration whether or not you are going to disclose because unfortunately discrimination does still happen and there are people who do fail to respect privacy and you never know where they are until you find them.
Some helpful things to consider at each stage of the employment continuum.
Prior to interview
Why you might …
You are able to to discuss the organisations policies and support resources when exploring the prospective position
You are able to get an idea about your employer’s predisposition to your needs from the word go.
If you have restrictions on any key job criteria due to temporary limitations because of recent relapse/graded hours return to work plans.
Examples of Why you might not …
Risk of discrimination influencing whether or not you get an interview.
No work related needs arising from your mental illness.
You don’t believe that they need to know/believe it irrelevant to job.
At the job interview
Why you might …
You are able to address people after creating a positive impression of yourself and demonstrating your capability.
You can gauge their understanding of your meaning and clarify appropriate questions about your needs.
You are able to discuss with the employer positive traits that you bring to the team that you have learned through your journey of recovery.
You are able to discuss your needs and what your potential employer would be able to accommodate or explore during the interview process.
You can brief them as to whether your referees are aware of your condition and how it affects your work and offer consent to discuss previous workplace arrangements with other employers if they have gone well.
Why you might not …
Risk of discrimination in job selection.
You don’t feel that you have needs that require accommodating or can manage them without support from your employer.
You might worry about where information gathered by panel members will go and whether people are trustworthy to maintain your privacy.
Concern that even if you get this job, opportunities for advancement could be limited by poor understanding of your illness.
You might be well and consider it unnecessary at this point in time.
You might not want to distract the panel from thinking about your abilities by talking about areas of need.
When contacted with an offer of employment
Why you might …
You are able to discuss your needs without risk of missing out on the job due to discrimination.
You can arrange to enter the work place with a plan in place that accommodates your employment needs and commence as you mean to continue.
If required and with your consent, the employer can arrange appropriate mental health sensitivity workshops for managers or staff by organisations such as Beyond Blue or circulate general anti-stigma/population health information among routine organisation circulars, yet not make it obvious that it was for your benefit.
Allow development of appropriate support and mentoring systems.
Why you might not …
Fear of stigma, gossip and/or discrimination.
Currently well and don’t feel that you are affected at work.
Work does not need to know.
Protection of positive image and opportunity for advancement.
During the course of your employment
Why you might …
You decide that your employer is trustworthy.
You become unwell.
You encounter difficulties or are not performing to standard because of symptoms or medication side effects and need to offer reasonable explanation or require support, alternate work arrangements or time off for medication reviews etc.
You are being harassed or bullied.
Why you might not …
It might not be necessary.
Protection of positive image and opportunities for advancement.
It might result in harassment and discrimination.
You are able to manage your needs without workplace support.
Never disclosing
Why you might …
Protection from gossip and discrimination.
Protection of positive image and opportunity
Privacy
Stable health
Lack of necessity
Why you might not …
Difficult to prove entitlement to compensation in case of illness, relapse or deterioration due to failure of workplace to meet needs for psychological health if they were not disclosed.
Relapse or need for hospitalisation might put your job at risk.
Might discover a positive attitude to mental health issues within workplace.
Legal obligations under occupational health and safety act where specific work related tasks are affected resulting in serious risk issues.
What did I do about disclosure to my employer with my job?
For me it was simple. I told mine. I disclosed at interview. I felt that this was necessary because I had taken my previous job without learning to manage my mental health well and my references would have reflected that in the answers to some of the standard questions that interviewers ask referees no matter how careful the referees were. I chose to take control of this situation at the time of my interview because having reached interview I could present myself as a competent individual in person, demonstrate that I was healthy and create a positive impression before and whilst disclosing. I also needed to disclose because I wanted to work less hours than the position entailed and needed to offer a good explanation. I told them that I had depression, how it affected me in terms of energy levels, concentration, seasonal patterns, medication changes and how I managed these things to be able to work. I spoke of arrangements that I had previously made with my former employer that had been helpful and asked if they would be amenable to such strategies. I also used the opportunity to tell them things that I had learned and accomplished through the experience of working, the determination and dedication that it entailed and the commitment to my job that resulted so that I could achieve personal satisfaction through working. In my case this had a positive effect and outcome, although it doesn’t always. I don’t disclose before I have the chance at interview to sit down and talk with the employer so that I can get a gauge on how they are reading what I am telling them and to avoid preconceived assumptions about what I will be like that are difficult to shift. There are always risks associated with disclosure, but my reasoning is that if they are going to discriminate when I am well, I would rather not have to deal with them if I were to relapse.
When I am in the workplace I lay low for a while and watch what goes on around me. As long as they are not untrustworthy, I tell someone if they are closely and directly affected by my health so that they are not left in the dark if I have to take leave at short notice. That’s usually only one or two people. Often they are among the first to notice that I am off my game, so it can work in my favour because when someone who I work closely with starts asking if I’m okay and comments that I’m not myself before I notice anything, it gives me a cue to step back and check my early warning signs and triggers. Over the course of years there have been a couple of people who have learned how to pick my good and bad days at least as well as I do myself and also to support and accommodate me through the bad ones and to lean on me in return when I’m good. I’m pretty limited in what I disclose to start with, but with proof of worthiness comes more trust.
My current situation in my new workplace is new to me. I have always had employers who were fiercely protective of my privacy before. I have little in the way of evidence about my current manager, only the report of one other worker about two specific occasions of breached privacy. I have, however worked in a place where it has been possible to work with my information kept private and so I am prepared to stand for my rights in both privacy and in workplace accommodation now. If I expect the respect of others, there may be times that I need to stand up and remind them what it entails. This is however new to me and the workplace is one with strange dynamics.
I have included in the Fact Sheets menu this week a document called “Choosing Your Path. Disclosure: It’s a Personal Decision“. It’s about disclosure of ‘disability’ (or illness) in education and training after High School and employment and the processes of application, entry and engaging in the roles. The booklet discusses legal issues, reasons why one may or may not disclose at various stages of training or employment, responsibilities and some of the considerations to ponder in making your decision. Also have a look around the Beyond Blue website as they have a number of resources for work sites and managersas well as fact sheets about telling your employer about your illness and maintaining good mental health for tertiary education students. Lastly, I have listed a book called “Tackling Depression at Work” in the Books menu. I’ve not yet read this one, but it was written by reliable people and has been well reviewed so should be worth a read. I have listed the book at the publisher’s site, you may or may not be able to find it cheaper elsewhere if it interests you greatly.
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:
Toes
Feet
Lower legs
Thighs
Butt
Abdomen
Lower back
Upper back
Shoulders
Chest
Upper arms
Lower arms and wrists
Hands
Fingers
Head
Forehead
Eyes
Nose
Cheeks
Mouth
Jaw
Tongue
Neck
Shoulders
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.
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:
Body chemistry:
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.
Your boss might need a medical kind of approach too. With them I would also look for information for employers on one of the mental health support websites. BeyondBlue has a good one (http://beyondblue.org.au/index.aspx?link_id=7.980&tmp=FileDownload&fid=1176 ). It has another one about whether or not to disclose if you are considering the decision (http://beyondblue.org.au/index.aspx?link_id=7.980&http://www.beyondblue.org.au/index.aspx?link_id=6.1068&tmp=FileDownload&fid=356 ). I would stick to workplace issues only and be clear about how your efforts are going in relation to getting or staying on top of your work. Make sure that you are clear of your work place rights. If you are in Australia, BeyondBlue spell them out more specifically or direct you to a source. I’m not sure where international readers would need to go. Mr Google would, I’m sure.
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…
I’ve got a headache that I’ve had on and off for a few days now. I’m so tired so much of the time. I’m disorganised. My house is a mess and getting less clean than I’d like it to be – it’s not grotty, but without action it could get there without a lot of effort … I’ve spent the last couple of days off loafing in my ever comfy PJs and while I’ve gotten up and done stuff, I’m sure I said ages ago that I was going to stop doing that…
Hang on. These things are all among my early warning signs. I’m off my game. Nothing serious yet – but now is the time to act. I’ve been going really well for ages. It’s not even my Depression that’s knocked me off my game – it’s the damn cold that I’ve been fighting. Yet this I do know. In the past relapse has often followed physical illness. The dog acts when he knows I’m not at my best. He takes advantage of weakness.
So what do I do now? Give in? Panic? Book an extra doctor’s appointment? Nope. Now is the time to reach for my WRAP – my Wellness Recovery Action Plan – something that I should probably be going over more regularly to remind myself of the daily and weekly/regular things that keep me well. In my WRAP I found that I’ve been neglecting a lot of these over the last couple of weeks and that I have gotten sloppy with a couple of my routine maintenance markers over the past couple of months. My work WRAP (my own experiment) shows me that I’ve not been sticking to my wellness goals about leaving on time and planning my day either – no wonder I’ve been feeling like I’ve been run over by a truck.
Now is the time to restart the action plans. I need to tell someone that I’ve noticed that I’m off my game and that I’m acting on it – that way they can ask me how I am going with my action plan in a couple of days to see if I need some help to get things moving again or if I’ve been able to self-start again solo (often harder than I think it’s going to be). I’ll wait to see how things progress and talk it over with my friend before I rush into moving any appointments forward. I think I’m okay if I get reorganised at this point.
So its back to setting alarms and keeping them for going to bed and lights out at night. I’ve been letting the sleep run thin.
I need to plan my meals rather than look in the fridge and hope that there’s something I feel like eating in there. And I probably need to start putting more attention towards the balance of what I eat because I don’t think I’m eating enough fresh fruit and vegetables (that’s a new strand to the plan for me).
I need to put away the things that are lying around and creating clutter.
I need to clean the house. When that goes to my list though it will read room by room and the floors will be separate. That way I can do it in parts and feel like I’m making headway when I cross things off on my list.
I need to set up a routine for maintaining my housework.
I need to set aside time for doing things that I like to do.
I need to work out how I want to prioritise a couple of things that I have going at the moment so that I can put away what I am not going to finish in the immediate future and finish off what I am doing in my ‘projects’ department.
I need to set aside time for some meditation and prayer.
I need to make sure I leave work on time.
I need to make better use of my diary and go back to keeping a list of things that I need to do to mark off and prioritise – this works well for me
I also really need to put some effort into starting to exercise and to spending more time outdoors.
If I need help with anything, I can and will ask.
I’ve been good with most of my other stuff but things involving routine, and doing things that I’m not instinctively motivated by (like exercise and cooking for anything other than guests) are difficult. It may get easier. Who knows? My goal is to find something that I enjoy in the things that I find difficult to do at some point – but not now. Now the need is to just do it.
We all fall down. We all need to know the best way to get up again too. Take the time to be prepared. I use the WRAP (http://www.mentalhealthrecovery.com/wrap/ . You can now download an old edition of this from “Recovery X-Change” http://www.recoveryxchange.org/downloads/RxChange%20WRAP%20WorkBook.pdf if you want to check it out a bit more closely). There are a number of different systems people have. The most important thing is to be ready to be ready.
All I have is a cold. It does not have to become a relapse.
Right now though it’s approaching bed time. So rather than editing anything else. I’m going to post this and head for the sack. Good night.
I sat down to do my WRAP a few months ago. My Wellness Recovery Action Plan.
The idea is that you describe what you’re like when you’re well, what helps you stay that way, what your triggers are and what you plan to do when you encounter triggers to prevent spin-off effects; then what your early warning signs with an action plan for what to do if you notice them emerging; also what happens when you’re feeling much worse and again what helps in those instances. You also make a crisis plan, identify supporters and how you agree that they will support you/what you would like them to do for you, identify people who you don’t want involved in your care/treatment and people who need to be notified, your current meds etc. There are a whole bunch of different ways of a similar process. Mary Ellen Copeland’s Wellness Recovery Action Plan is the one that I have been using – and hence describing (see link to website). The point is then to read it regularly – she recommends daily and to stay on top of your management plan and to know yourself, to recognise when you are not yourself; to be watchful and vigilant for triggers, warning signs and symptoms and to act immediately, instinctively. Also she recommends to have a couple of others who check in with you regularly to help out and give you their perspective or who will tell you if they notice that things don’t seem right.
I think that almost the hardest part of the process to complete was the first question.
“What am I like when I’m well?”
It had been a long time since I had been well for longer than a few months at a time. What’s more, I have changed. I am not the same as I once was. This battle – this relationship with my dog has changed me. What am I like?
I was in my mid twenties when I had surgery for a massive aneurysm. Somewhere over the period of the next five years came the prodromal and early symptoms of Depression without being diagnosed until I was almost 30. I have been wrestling to learn self-management skills until reasonably recently. It has been a long time since I was truly healthy, although between brief periods of mood change or minor undiagnosed episodes in my twenties until my eventual breakdown with depression I’m sure I was fine.
My point? What am I like when I’m well? I don’t know anymore. What’s more, it always feels like such a silly question to ask other people. I mean – asking people to help me to identify what I’m are like when I’m not well … that makes sense because I know that my insight is not at its sharpest. But well? Shouldn’t I already know that?
Not that I was ever good at describing myself. Always self-critical, I was never particularly sure why people wanted to be friends with me after leaving school when I had hadn’t had many friends at school. But that’s school for you – start school somewhere awkwardly and the perception sticks with you til you leave. Even as an adult I struggle to have a clear picture of what I am like.
What am I like when I am unwell? What helps when I am unwell? These questions I can answer reasonably these days. I have even thought to discuss some of this with others or take notice of comments that they make.
But to know myself well. To know the self that has been changed by this dog of an illness, by periods of chronic pain, by a swollen blood vessel in my brain waiting as a time bomb for its final burst – but found before it could; the self that has been altered by periods of self-imposed hermit style living apart from the workplace. This is a person that I must relearn. This is a person whom I have lost and who has changed while she has been away. She is a stranger.
I need help to know this person. Friends. Family. Memories. Time to explore the things that interest me again, to develop new ones. To reflect. To do. To explore. To discover. To learn. To grow. To live.
She appears when the black dog prowls. But she’s not a superhero.
Her superpower? She melts into the weave of the sheets and the very mattress on my bed like 3 day old macaroni cheese sauce on the lounge of a bachelor pad in summertime. She can barely roll over and will do anything not to. Almost anything. She won’t wet the bed. She will tell you the most atrocious lies in the universe. Anything to make you go away and leave her alone there. She barely eats or drinks – far too much effort. She stinks – goes for days at a time without a shower or cleaning her teeth. The thing she does do is sleep. She excels at that … except when she needs to.
And she can never tell you how she got to that state.
I am pleased to say that she has only taken a firm hold on my space a couple of times, but cleaning up after she has even attempted to gain entrance is a nightmare. It’s hard work chasing her out when she’s just passing through and catches me out. Next thing I know, there she is sitting there. She’s not looking like moving anywhere. She looks like she knows she’s not welcome, but can’t bring herself to move. A lazy visitor. In the way. Impeding the things that need to be done. And looking like she’s stay the year out given the opportunity. She has no sense of time. Little sense of purpose. And little sense of the ‘other’.
And then I look over my shoulder and see my dog pacing. He’s never still when she’s around. They feed off each other. Stalker and sidekick.
I am learning that the secret identity has more pitfalls than safeguards.
Superman. Batman (without Robin). Spiderman had pretty lonely existences – and they were the good guys. Secrecy is isolating.
Maybe just one or two people need to know about my secret identity. Need to know now while she’s not around – so that they know to come looking before too long if I disappear; so that they know what to do with my secret identity before she takes over again completely. So that they know when to say “Bulldust!” and when to be gentle. So that they know that I am also vulnerable to her bullying ways for short bursts while I am physically sick. Not everyone – just a couple of people. Perhaps then one or two will know to come not call. To peek in the fridge. To offer a lift rather than remind me. To ring just that little while after I say I’m planning to be up in the morning for a chat – til I sound like I’m awake and alert and up for the day (and to try again in ten minutes if I don’t answer in case I was in the shower or just missed the phone).
It’s hard to disappear when there are a carefully selected few making constant contact and stripping away the secret identity.
Soothing the dog.
Because everyone needs someone who will come looking. The biggest question is – is there anyone I trust enough for that task?
Do I want to share the ugly signs that show that my black dog is starting to pace? That the secret identity is moving into play? How do I decide who to share with? How much can I ask of people who put up with so much from me anyway?
But if it means avoiding the black dog at his worst …
If it means I can keep a job ….
If it means keeping a friend …
If it means not exhausting my family through another painful and exhausting regathering process …
If it means keeping some perspective on life …
Perhaps I am asking less of people than I am by struggling on alone. If only I can bear to share the secrets with those close to me …
… in exchange for those that they have already discovered that I have been too blind to see.
I was talking with a friend yesterday who commented on the extraordinary difficulty of the last few years. She asked about how I’d coped with my depression at different times, what kind of treatments I’d had, the other health problems that had intruded – because there have been significant episodes of those also – just to poke bruises into bruises and how I felt that all of this had affected me. None of these things are new topics. They are things that I have had a lot of time to reflect on over the past eight months in particular and to use to build into my Wellness Recovery Action Plan. But here’s a question it raises for different periods of my life over the last eight – no, realistically the last thirteen years – if I count back to my surgery:
Who walks whom? Was I walking my black dog? … or was he walking me?
For large proportions of that time, my black dog walked me. How I responded to that varied. Sometimes I trundled aimlessly along behind him without the energy or fight to do anything else. Sometimes I would simply sit down and refuse to be moved anywhere and let him pull and tug away at me or haul me along as I sat. Other times we would do battle – although the amount of energy I had to put into the fight would at times be outweighed by the dog’s.
For example, I injured my back and had chronic pain for months. Months I fought the pain and the black dog became just another thing to fight, but my fight was strong. However by the time the back was better, my fight was gone. My energy was gone. Before I knew it, my black dog was taking the lead as we walked and I had simply fallen in step with him without the wherewithal to reclaim authority.
Exhaustion does that.
Walking does that. Especially uphill battles.
How does one keep on walking day by day without getting exhausted? By walking. By familiarity. By over-familiarity with the scenery. Boredom. Work. Idiots. Medications. Side effects. Doctors. The same stuff as everybody else. The bloody dog.
I don’t know how to answer that. All I know is that I can’t afford to let the dog lead when I am exhausted. I need to stay the one who is the walker and the dog needs to stay at heel.
I think the answer is more related to ‘how do I know how far I can walk?’
I think the answer is related to ‘how do I know when my dog is getting ready to challenge my authority?’
Perhaps the answer is more about pace than distance. More about awareness than knowledge.
You take a puppy to puppy school and you learn nothing – your puppy doesn’t get trained. I think that this is also true of depression. You don’t train black dogs, you teach their custodians how to keep them in check. Some are easier to keep in check than others. Mine’s resistant – a mongrel of a thing – but others have worse. At least I can work with mine.
My black dog needs a leash. It should not have a halter. It is not a guide dog.
It must walk at heel.
I must keep my black dog at heel. I must be alert to his movements. Too often I have let him have his head and too often I have paid the price.
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.
livingwithablackdog 
