Who cares for the carers?

People with mental illness usually have a support team around them. Psychologists, psychiatrists, mental health nurses, social workers, general practitioners. People in mental health organisations such as the Richmond Fellowship (this link is QLD but you can google other states). People handing out medications and people providing emotional support. For the most part, these people do fabulous work in paving the way to wellness.

But there is a whole other population that often gets overlooked. The family and friends. Husbands, wives, sons, daughters, mothers, fathers. The carers. They are often excluded from treatment due to “confidentiality”. How do carers help monitor medications if they don’t have accurate information about which prescriptions to fill or how many tablets are needed? How do they help regulate moods if they aren’t up to speed on which strategies have been used in therapy? And that also means they are unable to provide feedback to give the professional team a full picture of what is happening for their loved one. While I can’t speak for all carers, I know that the ones I have spoken to genuinely want to help support the road to wellness. And they want to respect personal space and privacy.

During periods of illness, carers are often confronted with some pretty tough stuff. Major mood swings. Irrational demands. Thought processes that aren’t based in reality. An inability to reason. Violence; to self and others. Hospital visits. Self-harm. Suicide attempts. Manipulation. Sometimes even homicidal tendencies. And they are often in the middle of the fray, caught up in the maelstrom of chaos.

Chaos

Watching the people they love most in the world go through these experiences is heartbreaking. You watch your spouse with depression stay in bed day after day, week after week. You know that they are in pain and you try everything you know to help them. Encouragement, tough love, praise, cajoling, bringing friends in. You try talking to the doctors but you don’t get anywhere because they can’t talk back. You take over the running of the household, managing the children, cooking, cleaning. And you listen to your husband or wife talk about their inner pain and how much better off you and the children would be without him or her in it. You feel helpless and scared. What if they kill themselves? You wonder what else you can do to help. You don’t always understand why they can’t get themselves out of bed and rejoin the family. You feel lonely because the partner you knew isn’t there anymore. You feel alone because you don’t have your best friend to bounce things off. And you feel hopeless and helpless because the professional team won’t talk to you and tell you what you can do to help. Not to mention feeling guilty, fearful, resentful (of the illness), and a whole host of other emotions.

If you are a carer and can relate to this, please understand. You are not alone. There are hundreds of thousands, or even millions of people with mental illness, and each of them very likely has a group of family and friends around them, feeling exactly the same way you do. That is a lot of people feeling like you.

Exhausted. Stressed. Alone. Afraid. Confused. Helpless. Guilty. Isolated.

That is a lot of stress to deal with. And when you feel it for long periods of time, it is really important that you take care of yourself. Some very simple strategies can make a big difference in how you well you bounce back from the stresses and ultimately in the quality of your life.

When you’re looking at specific strategies there is one thing to keep in mind. Given the amount of stress most carers experience, sometimes thinking about doing extra can be overwhelming. So keep things really simple and you’ll be able to incorporate some of them into your normal routine. Try these:

• Take 3-5 long, slow deep breaths. Try to focus on slowing your breaths down and smoothing them out. This will get some oxygen into your brain and help you think more clearly.
• Pamper yourself. Take a bath, paint your nails, get a massage. This helps you relax your muscles and allows those stress hormones to dissipate.
• Surround yourself with nature. Visit a garden, sit under a tree, get your hands dirty with soil. This will help ground you and release the stress.
• Slow your brain down. Meditate, do yoga, or simply sit on your own for a while and breathe.
• Do something you absolutely love.
• Laugh.
• Connect with other people. Often speaking with other carers can help you realise you aren’t in this on your own and give you a chance to pick some brains about strategies that others have used successfully.
• Talk to someone. Sometimes seeing a professional can help you sort out the jumble in your head and give you some direction.

Australia has a network of carers organisations in each state that provide support for carers. They offer a variety of services, including access to support groups, workshops and counselling. They can also link you in with other services you may need. You can find details on each state’s organisation here, or call 1800 242 636 from anywhere in Australia. Some other countries also have carers organisations, including the UK and USA. Other support organisations in Australia include ARAFMI and COPMI (for the kids).

 

Leonie’s journey with Bipolar

It’s been several days since the last post was published on Kate’s life with Bipolar Disorder. Leonie has the same diagnosis and the other day she spent some time telling me of her experiences. Leonie’s story is one of suffering and sadness. And it is also one of strength, perseverance and triumph. She has taken her illness and the darkness it produced, and has found a way to use a variety of strategies and to create the light of her life. As always, if reading Leonie’s story triggers your own illness, please speak with your mental health professional or call Lifeline on 13 1114.

Leonie was first diagnosed with depression in 2003 and was prescribed an antidepressant. This led to a psychotic manic episode, which was followed by a period in hospital a month or two later. Even though she was heavily sedated and experiencing delusions, she clearly remembers the moment she left the doctor’s office after hearing him say the phrase “it seems likely you have bipolar”.

When she shared the diagnosis with a close friend from her early university days, she was told, “hindsight is 20/20”. Other friends and family agreed. Leonie had been living with bipolar since she was a teenager. Fast forward to 2003 and much of her life had masked the illness.

Leonie gave birth to a son in 1998 and a daughter in 2001. In September 2001, when planes hit the World Trade Centre in New York on 9/11, her daughter was two months old. Leonie remembers her prevailing and repetitive thought was, “how could I have brought my baby into such a brutal world?” Her general practitioner realises now that she was living with post natal depression at the time. In fact, she lived with it following the birth of both children.

With friends living in the state next to the World Trade Centre, and a 2 month old baby, 9/11 hit Leonie hard. Her existing depression led to her spiraling further into the illness.

Not quite that simple, Leonie’s transformation has taken many years

She returned to work part-time at the beginning of 2002 and found it very stressful. She ended up on indefinite long service leave. She felt unsupported, confused and lost.

Then, in January 2003, when her daughter was 18 months old, she looked up to the air conditioning duct in her house to see flames. She got herself and the children out and by the time the fire brigade arrived smoke was billowing from every orifice of the house. While most of the damage was confined to the roof cavity, the rug where the children were sitting when the flames were first seen was burnt by a molten air conditioning vent that had fallen. Leonie became fearful of staying in the house, and also fearful of leaving it at the same time. How much turmoil and confusion she must have been feeling at that time!

While Leonie was taking a shower one day in June 2003 she distinctly remembers not being able to work out why she was in there or knowing what to do next. She couldn’t work out how to turn off the water or grab a towel. She managed to call a friend, who gave her instructions to “hang up, don’t move and pick up the phone when it rings”, after promising to help. Together they dressed and breakfasted the children and took them to day care. They made a doctor’s appointment to see her General Practitioner and went with her friend’s support a couple of days later. Leonie was diagnosed with depression and prescribed Zoloft, an antidepressant. Within a month Leonie experienced psychosis, which is apparently a common result when that type of antidepressant is prescribed to someone with bipolar.

The 5 years between 2003 and 2008 were very bleak for Leonie. She spent most of the time severely depressed, with a few severe manic episodes. Christmas 2008 was very bleak. A few months earlier Leonie experienced a manic episode involving some friends, which affected their friendship in a negative way. Whilst attending the Christmas assembly at her children’s school she experienced a full-blown panic attack. She felt like the worst mother in the world and completely demoralised.

Leonie began thinking about suicide as an option so her family would no longer have to feel the shame she felt she brought on them. She felt they would be better off without her. Even though her husband and mother knew she was low, she hid the extent of it from them.

By this time her file at her mental health centre was an inch thick. Between 2003 and January 2009 she felt like the mental health professionals came through a revolving door.

Bottom: 2008, Top: 2013

The day that produced the turning point came when she saw one specific psychiatrist in that very long line of professionals. She walked in the door at her lowest ever point and was asked to tell her story yet again. The thought of rehashing all the pain and suffering was unbearable. Two minutes in, the psych was on the phone asking for a bed in the closest inpatient unit.

Leonie was in hospital for a month so that her new doctor could observe her closely as he fine tuned her medication. She felt lucky that she had finally found the right fit with a mental health professional. He was intuitive and understood her well.

She was out of hospital another month before another manic episode hit as a result of coming out of such a low. Bordering on psychotic again, she ended up in the emergency room with police hovering for most of the day while waiting on a bed in the inpatient unit. For another month, her doctor once again monitored her closely as he readjusted her medications. Leonie remains on these same medications to this day.

Career wise, traveling back in time briefly, in about 2005/6, Leonie was working 2 days a week as a teacher. She struggled because she was so depressed. Despite her then psychologist strongly suggesting that she submit a medical retirement, she resisted. The thought broke her heart. In a job that she had previously loved, she felt that she was unfit to do that work forever. But she couldn’t bring herself to submit the paperwork.

Leonie’s doctor discharged her from hospital at the end of May 2008. She experienced one minor depressive episode which lasted approximately a week. At that point she participated in her second, 10-week mindfulness course. By October of that same year she was once again doing 2-3 days of casual teaching each week. She chose her schools carefully as she made these tentative steps, but felt like she had her life back.

The entire year of 2009 saw her regularly working 3-5 days per week (at various schools). In the final term one school invited her to work 3 days a week for the rest of the year. In consultation with her team of professionals and close family, by October she decided to go back to full-time work.

At the beginning of 2010 she began her new job, a position she retains today. At first she didn’t tell anyone at her work about her illness due to feelings of shame and fear of judgement. But after she felt she had proven her wellness, she received incredible support from her boss.

Other than one minor and short-live depressive episode in 2012, which included anxiety attacks, she has been free of mood swings. While she doesn’t consider herself “cured”, and she will be on medications for the rest of her life, her condition is now successfully being managed. She utilises a team of professionals.

The joy after conquering a long-held fear of going down a huge water slide

Psychiatrist, Psychologist, General Practitioner. She combines medications with regular mindfulness training and sessions with her psychologist. She has made significant changes to her lifestyle by exercising and eating healthily. She now gets adequate sleep after discovering that the lack of it contributed to her manic episodes.

Leonie also calls on the support of close family, colleagues and friends. She feels blessed to be a part of a wonderful circle of social support. She now knows, thanks to this amazing support, that she no longer needs to keep the secret and shame.

Leonie feels that the key to beginning her path to wellness was to find that one professional that she could really connect with.

Christmas 2013 and Leonie’s new way of being

Bipolar – The Rollercoaster

Please join us and help me welcome Kate to The Mindset Effect! She shares her experiences in living with Bipolar Disorder. As always, if Kate’s story triggers your own illness, please either see your mental health professional or call Lifeline on 13 1114 for immediate support.

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Living with Bi-Polar is like riding a roller coaster – blindfolded! You never quite know what is coming next and both the ride up and the ride down are equally scary – though for different reasons. On the ride up, well it’s a much better feeling then the ride down, but I just never know when I’ll flip over and start my next descent. Also, out of nowhere every now and again there is a sharp and unexpected turn or the serene hope of a plateau where life just rolls along for a while. The ride down though is always hell. You never know just how low you’ll go or how long you’ll be down there and the sense of being out of control is terrifying some days.

 The first time I truly knew something was not right was about 12 years ago now. I was sitting on my back steps, sobbing so hard I could barely breathe and my flatmate sat beside me, put her arm around me and said she could not understand; I’d been so happy just a few moments before. And I realised I had been and I literally could not explain why I was now crying my heart out.

The mood swings are the most well-known symptom and the roller coaster analogy is obvious there. Sometimes, usually in the low times, these mood swings can occur several times a day as I talk myself out of panic attacks, force myself to get out of bed and try desperately to distract myself from negative self-talk by something more fun, such as painting with my small child or walking my dog along the beach. Then, just for a few moments, sometimes an hour, even on the darkest days, I am truly conscious of a sense of peace, self-worth and activity of which I can be proud. This is on the bad days. The days when I will go and have a shower five, six, ten times a day so I can cry without my child hearing me. Days when I can only force myself to eat something because my child is looking at me, waiting for me to eat too, and it tastes like ash in my mouth. Days when I force myself to get out bed and the idea of dressing is so agonising I just put on the dirty clothes from yesterday (and the day before, and the day before that – I have been known to wear the same clothes for about a week before my partner would literally hide them and put something different on the floor where I’d dropped my dirty ones the night before), and pull my hair into a ponytail.

Then we flip to the mania – the “up” side of the roller coaster. On these days I will be up two or three hours before I need to be, living off adrenalin with very little sleep. By the time my child and partner wake I will have scrubbed the kitchen, showered, shaved, changed outfits half a dozen times until I am in just the right colours for the day, done my make-up, blow-dried my hair, made fancy lunches and been through half a dozen cook books to find something “exquisite” for dinner. I will spend all day in bursts of activity, rapidly moving from one to another with the attention span of a gnat. My child and I will paint, make up a show, play with the building blocks, go swimming, play the Wii, bake cookies, paint again, play with other toys, kick a ball around or play on the swings, until the child throws a massive tantrum and I realise I have run the poor mite ragged all day, totally forgotten to let them nap and there has been no actual meal but just snacks as I rush from one thing to another.

Other days I will shop all day, spending money we should be spending on bills and scheming on how to either hide it from my partner or justify why it was “necessary”. I will spend hours making a three-course meal only to throw it out because one part was not quite perfect and start again on a totally different set of recipes. Strangely enough I have come to recognise these as obsessive behaviours. I tell myself a good mother stimulates a child. Or a savvy woman enjoys shopping for bargains. Or a good wife presents her husband with a good meal when he gets home from a hard day at work. I get an idea in my head and just run with it to the absolute extreme.

Over the years I have often found myself in conversation with myself – this little objective part of me that seems to sit just above my head and questions my actions. In the past I have tried to explain, excuse or escape from its questions and other times I have just yelled at it shut-up, there is no reason, it just is.

With the help of some good Cognitive Behavioural Therapy I have learnt to recognise and listen to that little voice – it is usually the voice of reason, alerting me to unreasonable behaviours, depressive or manic. I have learnt some great coping techniques and some ways to challenge and divert my negative self-talk. I have accepted I will be medicated for the rest of my life and I have become far more spiritual in my search for ‘sanity’ or peace with myself.

It has not happened over-night. In fact there have been some pretty awful times in the last 12 years, but these days I am pretty happy in my skin. I have come to accept that mental illness is actually a lot like physical illness – no-one chooses to be sick, and medication really does help. Attitude is a huge factor in coping as well. To deny, denigrate or despise myself is not helpful.

To accept, challenge and celebrate myself is.

These days, when I don’t want to get out of bed or clean my teeth, cause really they’re just going to get dirty again and who cares? I remind myself that I care. I care about me. I engage in some positive self-talk, I set myself small achievable goals and I remind myself that “this too shall pass”. On days when I am up at 4am and have enough energy to run the New York marathon twice, I drop anchor and breathe, I notice five things and consciously slow myself down. Then I pull out a list of projects I’ve been thinking about, pick a couple and use the energy I have in positive ways – after all, this too shall pass.

And really, that’s the message – this too shall pass. Both good and bad are only passing moments and I do the best I can with them and let them go. I am who I am and, strangely enough, I have learnt that is all I have to be.

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Kate is a mother who is doing her best to parent her child whilst caring for herself through this illness. She sometimes faces the daily challenges of this rollercoaster ride difficult but usually finds peace by walking along the beach and connecting with the water.

The 101 of Bipolar Disorder

Bipolar Disorder is the new version of what used to be referred to as Manic Depression. As the name suggests, it has two states that essentially are opposite in nature; Mania and Depression. The word “bipolar” basically means two poles. Or two opposite states of being. When we think of poles we might think of the north and south poles of the earth, or the poles of a magnet. A person with this illness will cycle between being manic or depressive. The shift from “high” to “low” could happen quickly or slowly. From just a few hours, up to a few days, usually. Sometimes the depression (particularly) could last several months.

Let’s tackle Depression first. If you need a reminder, see our last post on depression and Debbie’s experiences. The major features of depression are a low mood that lasts a long time. It’s often very difficult to get out of bed in the morning, you end up sleeping most of the day and still feel tired, and you avoid many social activities due to very low energy levels. It’s very common to have suicidal thoughts as well. Depression is probably one of the most common and well-known mental illnesses, with 1 in 5 people in Australia experiencing it in their life time.

Mania looks very different. Rather than sleeping for much of the day and avoiding social situations, people in the manic phase will spend most of their time awake. They will be super productive and believe they can do absolutely anything. They might start tackling one task and get distracted by another and transfer their attention to that, leaving the first incomplete. If this happens a number of times in quick succession, you might imagine that a lot of stuff can be left undone! One of the keys about getting lost in this kind of “productiveness” is that a lot of the time it’s not productive at all. One might start washing all the dirty clothes, but in reality the clothes being pulled out don’t actually need washing. Or the dishes don’t need cleaning. So the house could end up rather chaotic. Mania may also include disorganized, racing thoughts which often lead to rapid speech.

Sometimes people in a manic phase may convince themselves that they need the next big thing from the stores. So they purchase expensive products (bags, shoes, clothing, electrical appliances and so on) that they never use. Or they may convince themselves that gambling is the answer and end up with a problem with that.

Severe manic episodes could result in some psychotic symptoms such as hearing voices and hallucinations. Or even the false beliefs of some kind of super human ability.

There are two types of bipolar disorder – 1 and 2. You can find more on the differences at this site. Essentially, people with bipolar 1 experience what I have described above, and people with bipolar 2 have less severe manic episodes called hypomania.

The causes of bipolar are not well-known. Family history is said to play a part, as do environmental factors. Sometimes significant life events can be a factor for people who have a predisposition (family history) to it. Drug and alcohol abuse may trigger bipolar episodes in people who already have it.

Like many mental health conditions, people with bipolar respond well to specific medications, some kind of psychotherapy such as working with a psychologist, and lifestyle changes such as healthy nutrition, exercise and limiting alcohol.

Tomorrow I will publish the experiences of someone with bipolar disorder. This lady is a parent and works hard to balance her illness so she can be the best parent possible to her young child.

 

Living with Depression

I would like to introduce you all to Debbie. She lives with Depression on a daily basis and battles it and other mental health conditions. She is a mother doing her best to parent. And because of her mental health, she advocates for others who live with similar conditions. She has a great blog filled with informative information, so please head on over and have a look around. Details can be found below. I hope you all get something out of reading her story here.

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“That’s the thing about depression: A human being can survive almost anything, as long as she can see the end in sight. But depression is so insidious, and it compounds daily, that it’s impossible to ever see the end. The fog is like a cage without a key.” – Unknown 

There was an end to the childhood/teenage years spent in a household that was unloving and at times abusive at the hands of my Mother whose only way of expression was through her hand and use of a dressage whip. There was an end to the marriage that involved cheating, prostitutes who were more important than me, physical abuse, mental abuse, controlling, and constant hurt. There was an end to the years with the fireman who could not commit and had to keep me as his secret second life. There was an end to the jobs that involved colleagues that chose to bully, discriminate, and use my depression against me because it was easier to mistreat me than ask if I was ok and help.

There were ends to these parts of my life.

What hasn’t ended after decades of severe depression, bipolar disorder, and general anxiety despite various treatments, medications, appointments, and counselling this insidious illness has not shown any end in sight, light at the end of a very dark tunnel, and is a battle that just keeps going and going.

Not a day goes by that the cage that surrounds me, depression, doesn’t have an impact upon my day. After many years with depression, anxiety, and mania have come to terms with the fact that I will always be burdened on a daily basis by this illness. The following will detail how depression, bipolar and anxiety impact upon me.

Depression – the theory, if you can call it that, is once you take medication prescribed for depression your mood should lift or at least improve. When you undergo electro convulsive therapy (ECT) which involves electrodes put on the right side of your brain that pulse an electric current through the brain stimulating the brain to increase neurotransmitters and therefore chemicals in the brain to improve your mood. Despite these measures, trial and error with medications not a day goes by that the feelings of depression don’t haunt me, shroud my day, take my smile, or leave me house bound with a deep sadness that doesn’t lift and takes from me my ability to go about my day.

Mania – Mania is the other end of the spectrum from depression.  It is a feeling of elation, high energy, the feeling you can absolutely do anything, and the ability to do anything.  My manic episodes are not so frequent but when I do have them they last days sometimes weeks and because of how mania makes you feel I go like a mad women the whole time, do a million things at once, and feel like I am superwoman.  While some would say this would be a good thing because at least I am not depressed, it is only a matter of time before I come crashing down, and when I do crash it is with a big bang.  The end of a manic episode is complete and utter exhaustion, at times making me physically sick, and on top of that depression hits me like a tsunami bringing me down in a big way, to the extent that I can’t work, can’t get out of bed, just don’t want to do anything because it is just incredibly hard.

 Moodiness – Everyone is moody at some point in their day and week. It can be caused by tiredness, stress, relationships, work stuff, a whole range of things but when you suffer depression, bipolar and anxiety you are constantly on the moodiness rollercoaster.  My day can involve a range of different moods from being manic, depressed, angry, irritated, upset, and stressed, you name it and my day involves that kind of mood.  Along with dealing with this rollercoaster it is incredibly hard to manage and adds to the stressors of trying to get through the day, getting your job done, dealing with people, and just enjoying the day.

Anxiety – My anxiety involves racing heart, tightness of the chest and throat, the feeling you are being strangled, sweating profusely, shortness of breath, a feeling that you are out of control and something bad is going to happen.  It is neither easy to deal with or easy to get rid of.  While medication can assist in controlling the symptoms of anxiety they still occur in response to your natural flight or fight response, your response to fear or threat, and the circumstances around you.  There have been occasions when my anxiety has turned into a full on panic attack, and it hasn’t been pretty, and has ended with me in hospital until it can be brought under control.  Panic attacks or more precisely the fear of having a panic attack is also a contributing factor to anxiety and can literally cripple people into not being able to leave their home, drive a car, go to a shopping centre, a range of other things, usually linked back to the original source and environment of the panic attack.  I have been one of these people who hasn’t been able to leave the house for periods of time, can’t go to shopping centres, can’t go to social gatherings, and struggles at work.  Anxiety also affects thought patterns and self talk, leaving you with doubts about your ability to do things in your day.

Exhaustion – Nobody can operate when exhausted and when we do it is not at full capacity and our daily tasks are twice as hard as what they should be.  For most people, exhaustion comes, they sleep and then it is gone but for me and many others who live with depression it is not this simple.  I believe my exhaustion is a combination of depression, lifestyle, and my medications.  Whatever the reason the effect of exhaustion upon me is huge, it makes my depression ten times worse, it increases my rollercoaster of moods, it leads to physical sickness, it incapacitates me for long periods of time.  I can sleep for 24 hours straight, sleep on and off all weekend, sleeping is all I want to do and it’s what I try to do any time I get the chance.  The problem is despite how much sleep I get I wake never feeling like I have slept, never feeling rested, and never feeling renewed to start again.  Exhaustion never leaves me, making my days extremely hard and long, affecting my productivity, my ability to look after myself, and sending me deeper and deeper into depression.

 Little to no concentration – Depression affects your ability to concentrate and for me it can become a huge issue, especially if I am at work.  When I have little or no concentration I find my mind wandering off with all its self-talk, finding myself with little motivation to carry on with my day, and struggling to get through what I need to do.  On one hand I want to get things done on the other hand it is like a force is pulling in me in the opposite direction so that I feel vague, disinterested, not motivated, and tired.  Sometimes the feelings that come from not being able to concentrate affect my level of depression, my mood, and how I interact with those around me because it leaves me irritated and frustrated with myself because I want to get things done but can’t.

In a nutshell these are the aspects of my life that depression has dealt me, this is the rollercoaster of most of my days, it is my constant battle, and how I end up having a major depressive episode because like a volcano there is only so much pressure from these that I can handle before I collapse in a heap. The Black Dog is invading my personal space, and I can not function mentally.  I would like to think that there is a cure for these, more importantly for depression, but unfortunately in most cases there is not.  We can take medications, we can see a therapist, a psychiatrist, a doctor or someone else, but we can only ease the symptoms, and hope for a reprieve from depression.  Every day I hope that my day will be easier that I will feel great and that everything will be a breeze but this is very rare.  Some day I have hope that it will get easier.

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About Sad Mum Happy Mum

 Debbie is the author of Sad Mum Happy Mum, which is the story of a Mum living with depression, and her journey to recovery and happiness.  Debbie is a single Mum of a 13-year-old son, a keen photographer, reader, camper and academic, and has lived with depression since her early teenage years.  Debbie’s experience with depression has inspired her to write a blog about her experiences and learnings in the hope of helping others with depression, as well as increasing the awareness of depression and mental illness, and breaking down the stigma attached to depression.  A strong advocate, mentor, and living example, Debbie is determined to provide a safe environment for other Mum’s to talk about their experiences with depression, and is working towards establishing a support group that assists Mum’s living with depression.

To read more from Sad Mum Happy Mum click here.

To visit and become a fan of Sad Mum Happy Mum visit the Facebook page here