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 …
Habits. My life is full of them. Good ones. Bad ones. Helpful ones. Ones that I have resolved to end a hundred times over, yet continue with. I have things that I do because I like to. Things that I do because I have to. Things that I do because that’s just what I’ve always done. Some I maintain consciously, some unconsciously; and some are maintained by failing to maintain others. Habits.
I spent yesterday afternoon pottering in the garden. Among my many little chores I spent lifted bulbs from some pots.
Now, I am very new to gardening. My once black thumbs are currently oscillating between a brown and occasionally get a very slight hint of green (until I forget to water the garden for a few days in a row). There is no science going on – it’s all experimentation … almost. I do occasionally look things up on the net. After I write this post I will be looking up what you do with bulbs after you lift them.
Which brings me to the some of the reflections that I had yesterday as I waxed poetical in my head and got very grotty at the same time.
I have never grown plants that were bulbs before. So this year was certainly an experiment. Some grew and some did not. I believe that I probably planted some upside down, but can’t confirm that. I probably over-watered some … they rotted in the soil. Others grew and didn’t bloom. I am not keeping bulbs of plants that did not bloom. Some grew and missed a few days water and got hot wind and died while others did quite well. Some even made it to bouquets for friends.
Yesterday came to the beginning of stage two of my experiment with bulbs. I went to the pots that held the plants that had bloomed that I had liked and decided to lift the bulbs. Not quite sure of the correct procedure I began to burrow. Now the first pot was not so difficult. They were tulips. The second pot I did just to get rid of the bulbs because I still wanted to keep the pot, but needed to get the bulbs out. They too, were easy to find. The daffodils gave me no trouble. And then I came to these other plants – whose name I do not recall – but the bulbs were in little nests that were distributed unevenly around the planter box and while the upper couple of bulbs in the nest were of reasonable size there were also bundles of little balls – I assume new bulbs – that would often fall free and needed fishing for. It took a lot of work to sift through this pot to lift the bulbs.
While I was doing this it struck me that If I were this thorough with everything, much of my life would be a lot simpler. I would not have forgotten to take my medication yesterday morning had I refilled my dosette box when I emptied it. I would not get weary looking at the mess in the kitchen as often if I were in the habit of cleaning up after myself as I went more regularly. I would be exercising regularly by now instead of simply planning to start within the next month. I would not grow weary from lack of sleep. In short, I would be more scrupulous about my habits. Certainly it’s laborious. Yet, there is a purpose to these habits the same as there is a purpose to my clearing the pot. I am seeking to be in the best of health so that I can get on with living and doing other things. Just as I was clearing the pot so that I could plant something new in it that would grow over the summer months. There is a purpose to maintaining habits that are mundane that is anything but.
The second reflection came to me while I was battling one-handed with my bush rose whilst watering it. I was attempting to remove the spent blooms – I’ve been taught to do that, but don’t do it regularly enough so there are lots at present. They’re all over the bush. Some of them were impossible to get to without doing battle with thorns while working one-handed. Others, within reach while able to be grasped and eventually detached, were not easy to remove. I also managed to get spiked by the tree regardless. Ouch. How different the bush rose was from the geraniums which simply slip off the plant with the slightest pull.
I am much more like the bush rose than the geranium when it comes to surrendering my bad habits. How much simpler life would be if when I noticed that I needed to change I were able to simply let go of the old ways like my geraniums. But, no. For me it is work. It requires effort and often shakes up the petals of some of the other flowers during the process. Occasionally, not just the dead rose came off with the pulling, but some of the good ones beside as well. I think my roses are very much like my habits. They grow without effort and bloom. Often they serve a good purpose, but then are no longer needed. Other times they just are. But when they are past their usefulness and deadweight, burdensome – they do need removing. Sometimes it can be done while I’m doing other maintenance like the watering, but I think that I am going to have to go out soon and pull them off myself deliberately. One at a time. Not a job that I see as stimulating, but to encourage the bush to be productive and to keep it looking healthy it needs to be done. Now I just need to take the same path with my troublesome habits and learn to tackle them one at a time and replace them with helpful ones.
Will I be as meticulous in dealing with my dead habits that are no longer blooming as I work at being with my flowers? Will I dig and sift as thoroughly as I looked for my bulbs when it comes to removing them?
Again I set my resolve to commit to tackle my environment and not let it get out of control (The kitchen, living area and study are cluttered again and the floors are past cleaning time). My dosette box should never be left empty – I used to be good with that. There are a number of other things that I need to sit down and map out.
Which plant holds the flowers that are hardest to remove in your garden? Just how carefully are you prepared to dig out your bulbs?
I think I still have black thumbs in the habit garden and it’s time to green up. What colour are your thumbs?
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.”
There are a lot of things I hate about Depression. Take your pick – the effect it has on your self-worth, your energy levels, your mood, how sociable you feel and act, your self-image and presentation, that non-expression on your face … or the medication – weight gain, constipation, tremors, medication for the tremors … the constant need to micromanage your life to prevent relapse routine, exercise, diet, sleep, early warning signs, triggers, medications, appointments and to cap it all off there’s the increased incidence of things like diabetes and heart disease in people with depression. Some of these are direct results of depression. Some are spin-off effects from symptoms played out in the lifestyle. Some are medication related. But by far the effect that I loathe the most is the ‘fog’.
Thinking in ‘The Fog’ is like those movies where a character moves across a misty set barely able to see what is in front of them, working to make out the shadowy forms in the haze before them until the mist folds away just before they meet it to reveal what is there – yet the objective never quite within sight. When I am not well my mind is in stupor. Gears creak. Cogs struggle to turn. I forget things constantly. I lose my place in what I am trying to communicate to someone. These are things I was once very good at. As I get better I can do all of the things that I used to do – but many of them I do more slowly than I once did. It now takes me longer to process things in my head – arithmetic, deciding how to express something carefully, making a decision, figuring something out. Some of this is because of medication – but not all of it. Some is the Depression itself. It has slowed my once quick mind. Recent changes to medications have freed it up a little, but it is still not what it once was.
It is not obvious to everyone. Mostly only to people who have known me for a long time before and after the Depression left its mark. When talking with a friend and therapist with whom I once worked once told me that the difference had made her cry. It was such a relief to know that another person was grieving too.
I had an ongoing dilemma with medications until recently that centred around a Lithium fog. After years on a tricyclic that kept me well in tandem with Lithium, I eventually had to stop the Lithium so that I could use anti-inflammatory meds for chronic back pain that wasn’t responding to any other form of treatment. The result was that the back pain settled reasonably quickly, but it was difficult to keep my mood stable on the tricyclic alone. In the end, my Doctor suggested that a medication change was the way to go and I finished up on a combination of Lexapro and Edronax. Beautiful. I could think. However, like the tricyclic (which I’d been on because SSRIs on their own didn’t work), in reality my mental state was still not really robust. Finally, after much resistance on my part, I restarted Lithium as an augmenting medication to bolster the main ones – and, for stability I did need it. But it really stank. The fog was back. Lithium, I find does slow me down – preferable to relapse and job loss – but still unpleasant. My best news has come with the release of Valdoxan. Given how much I hate and object to the use of Lithium, my doctor has trialled me on this in place of the Lithium as my augmenting drug and it is working beautifully and without fog. So what is now left that is attributable to medication is as low as we can get it.
What has been affected is what I will call my ‘working memory’. The part of the brain that is operating and pulling everything together at any moment so that I can think, move, find information that I know, solve problems, come up with ideas and take action of any kind. It is where what is needed from my short & long-term memory, senses, visual-spatial understanding, communication and organisational understanding and my level and focus of attention are is pulled together and used to observe or interact with the cues, instructions or things in the environment around me to guide my actions in a certain way. It is where, to a large extent I can regulate the speed of my actions also. BUT here’s the thing. When I’m not well my level of attention is affected so I miss information from the environment and not all of the information that my mind needs makes it in. The speed of the working memory slows down, my memory is fuzzier and less accessible, I lose the flow of operations I am doing. It’s like if there is a little man inside my memory coordinating all the information, he ages 100 years and can’t manage all of the information when I’m depressed. When I’m well he returns to almost his original age and moves reasonably well; but he’s been left now with some injuries – back strains and a touch of arthritis that slow him down just a little on the fine and detailed work or when handling really heavy stuff. He can handle it, but he’s not as fast as he was before the injuries that the sudden aging episode left on him. And nor am I.
At times I think walking with a black dog is like walking through the high mountains where there is rarely a day unaffected by mist – not necessarily always pea-soup fog; yet always just a light haze. Not enough to hamper most of the time, but enough to dampen the spirits and frustrate – especially one who is unaccustomed to fog. But the moments when the fog lifts and the sun shines through – Oh my! They are glorious.
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.