Tag Archives: mental health

Mental Illness: What Should it Look Like?

I was involved in a facebook conversation yesterday about mental illness and some of the comments people afflicted are receiving:

‘You don’t look like you have a mental illness!’

‘You don’t look disabled!’

To people who make comments such as these, I’d like you to tell me; what should mental illness look like? That’s a serious question.

Mental illness (and I can’t believe I’m about to state the bleedin’ obvious here) occurs inside the brain. Can you see my brain? Yours? No. Some mental illness is obvious by the way someone acts, and some isn’t.

For those who are new to this blog, I’ll let you know that my partner has severe OCD and mild agoraphobia, plus depression. You can’t tell just by looking at him that he has a severe mental illness. Lately, he has started to get worse with a thing we call ‘quirks’, though. This means that sometimes he will make an involuntary noise, which is usually yelled out loud. It often sounds as though he’s in pain, or getting a sudden shiver, or something like that. Other times, it sounds as though he’s doing it to be funny, which he isn’t.

Sometimes he’ll start getting irrationally snappy, or nervous, or bossy (‘we have to get out of here now!‘). But for the most part, you can’t ‘see’ his illness. If you met him, you might not pick that he has a mental illness. It all depends on what sort of day he’s having, where he is, and how well he knows you. He will work very hard to suppress/hide his illness from you if he is feeling particularly anxious, and he is getting better at doing this all the time.

When he can’t suppress those feelings any longer, there is a chance you won’t see it, because he will make an exit, for fear of embarrassing himself.

It’s because of these things that I’m guessing people outside of our family don’t see his illness as it actually is. Let me illustrate what I mean with a few examples:

My partner cannot handle crowds very well, but is improving at this with treatment. In his first year of diagnosis/treatment, he didn’t go to our eldest daughter’s school awards night. (A few years in, he’s still never been) I have been told, ‘these things are important. A good dad would just go, it’s mind over matter’. Now, during our first year of dealing with my partner’s  illness, we were still worming out the idea that he might also be suffering from agoraphobia. OCD and depression were the main points we’d addressed to this point. It was a very stressful time.

My partner had not yet learned and practised techniques and strategies to help him cope with situations difficult for him. We still hadn’t found the right medication for him. I was still learning what my role in helping him was, and there were so many things I didn’t know. I still didn’t fully understand his illnesses, and hadn’t interpreted yet the best ways I could help him and the whole family through his anxiety and behaviour.

We were both hyper aware that we were no longer a ‘normal’ family. We desperately wanted to be normal again, and were grappling with accepting this new reality, and trying to understand whether or not we would ever have a normal future. At this stage of his illness, I was pretty much running the family and household, as my partner battled his demons, or spent full days knocked out on the wrong medication.

He had guilt about not contributing at that point, and I had guilt that there was only one of me, and only so much to go around! Plus, at this stage, my two younger kids were extremely young, so of course that was more demanding of my time. We both battled the ‘not good enoughs’ on a daily basis.

So, when you’re trying to hold it all together and function normally (which was pretty much impossible), to then be told that we were handling an awards night the ‘wrong’ way by ‘normal’ standards, it was pretty gutting stuff. I went to the awards night, and left the two younger kids with my partner at home so that they wouldn’t disrupt the evening. My partner was not at the stage where he was capable of being in a tightly packed room full of strangers, and being made to feel guilty about this, was not helpful at all. If anything, it lowered our morale to the point of it being a set back. We’re both a bit more resiliant to remarks of those who don’t understand these days, so it wouldn’t set us back so much anymore, than it would be a mere irritation.

Two years later, the same person mentioned that she’d seen my partner out driving every day, and that he ‘didn’t seem that bad if he could do that’. So, we have a man who has now found the right medication, has learned and practised some ‘mind over matter’ techniques to help him with difficult situations, and he’s still being criticised? Is he meant to force himself in certain uncomfortable situations, because someone else deems it necessary, then at other times, not challenge himself to improve? Does he need to stay ‘stuck’ in his illness, to prove how sick he is to others? Of course not.

It sometimes can feel as though he’s damned if he tries, and damned if he doesn’t. If he’s not ready for a certain challenge, he’s not trying hard enough, and if he makes a huge acheivement in confronting a fear and successfully completing it, then maybe he’s just not as sick as he makes out he is. On top of that, these comments don’t factor in the idea that those with a mental illness have their good days and their very bad days. He might’ve been successful in one task last week, but this week is feeling more stressed. So, this week he may not be able to complete tasks as well as last week, due a build up of anxiety.

Now, I can only speak of our experiences with mental illnesses, and I can’t claim to know what it’s like for other people with mental illness, and I don’t want to. But I would like to ask those who (understandably) don’t understand what it means to have mental illness a few things:

Mental illness doesn’t have a certain type of ‘look’ about it. Can you please stop fixating on appearances, be it looks or your perception of the behaviour of the mentally ill?

Can you please understand that mental illness is a work in progress? You don’t see the work going on behind the scenes. Sometimes, if you see someone with a mental illness doing something you’ve heard them claim they can’t do, you are watching the work in progress. It doesn’t disprove that they have mental illness, it just proves they’re trying to beat this thing. If you feel a need to comment on them not seeming to be particularly mentally unwell today, the most helpful thing you can say is, ‘well done!’ Let this person or their carer know that you’re impressed with what they’ve acheived. Saying, ‘you’re doing so well today!’ will actually help that person in their treatment! It’s so much more constructive than, ‘well, he seemed ok last week, I don’t see why he can’t do it today!’ Judgemental comments like these can even hinder progress.

Whether someone with mental illness is having a good day or a bad day, acheiving or regressing, it’s great to sometimes acknowledge, ‘I know how hard this can be for you’. Reinforce that you know they’re doing the best they can at the time.

To finish off, I’d love for anyone not dealing with mental illness (be it yourself or a loved one/friend) to simply understand that there is a whole big picture behind mental illness. You don’t see it, but compassionate people can try to use their imagination. Choose empathy. Even if you don’t understand a particular illness much, attempting empathy is more useful than blind judgement.

 

 

 

 

It’s Not Laziness or Depression

It’s been a long seven weeks since I became quite ill and started seeking medical help.

I ditched my incompetant doctor who was as useless as tits on a bull, and my new, wonderful doctor has almost immediately (by the second visit!) done some proper testing and given me some concrete answers.

There’s a reason my hair has been falling out and breaking off.

There’s a reason my muscles and bones are all in excruciating pain.

There’s a reason I’m exhausted to the point of being bed ridden for most of every day.

There’s a reason for the headaches, dizziness, weakness, brain fog, and inability to walk a straight line.

There’s a reason I seemed to be suffering depression, and the antidepressants didn’t help.

The reason is that I have a vitamin D deficiency. All it took was a doctor with enough brains to run a blood test.

I started taking supplements yesterday. I’m slowly feeling an improvement, but on doing some research, it sounds as though it might take quite a few weeks to feel a lot better.

What a great feeling to know I wasn’t just imagining all this! That I wasn’t lazy, or being a sook.

I’ve never been diagnosed for this before, but it does make a lot of sense to me. I have a mild lactose intolerance, so I don’t have dairy often. Sometimes I risk it if I’m craving, then pay the consequences. We’ve moved to a town that snows in winter, at the end of winter. I have no appetite, so don’t eat as much as I should be. I feel the cold more than regular people, so my skin is covered up more. It makes sense!

We still have to look into a few other health issues, in particular gyno problems, and find out why I’ve lost over ten kilos with no effort in such a short space of time. But I have the most fabulous doctor and I trust her! She is looking into absolutely every possibility, in a way I’ve seen no other doctor do, ever. I have hope that things will get better.

I would like to add a bit of a disclaimer though: if you’re reading this and some of it sounds like you, don’t just rush out and buy vitamin D supplements! If you aren’t deficient, you can run the risk of developing toxicity. If you suspect you might have a vitamin D deficiency, please go to the doctor and get a blood test. Don’t experiment with it yourself.

I miss my blog so much, hell, I miss my life so much! I’ve been living out of my bed most days, sometimes surfacing to take the dogs for a walk when I can’t stand resting anymore. I can’t wait to be up and about, happy and healthy. I finally feel as though that day is coming closer. I hope you are all very well, and if you’ve ever had a vitamin D deficiency, I’d love to hear from you. Also, if you think this info could help anyone else, you’re more than welcome to share this post around.

 

 

Red Cross, I Want to Say Thank You

 

Anyone who’s a regular here is probably well-versed by now in the details surrounding our house fire.

I don’t know if I’ll ever be able to fully convey the sadness, fear, panic and isolation we felt at that time. We were so overwhelmed and felt very helpless. We’re lucky to be insured of course, but when you have a fire two days before xmas, what happens is that shops close. Banks close. If you think about the types of services that would be helpful in a situation like that, let me break it down for you: they were closed. We had a lot of waiting ahead of us. In terms of getting the house fixed and in a suitable living condition, we are still waiting six months on. I thought we’d mostly need painting and the like done, but as asbestos has been ripped out, ceilings have caved in and so on, more and more problems with this house have unfolded. Anyway, this post is not about that.

Despite the world’s closing down over xmas time, we still had needs. The four (at the time, it’s now three) kids in our care still needed things. A roof over our heads until the soot could be cleaned out. Food. Clothing. Sanity.

Our insurance company put us up in a motel. We scraped what food we could salvage (we only lost half of our food), and rationed it strictly which the two younger kids struggled to understand. We tried to choose food that wouldn’t overcrowd our bar fridge in the motel and had to choose things that didn’t need to be cooked. We bought some food with the money we had on us. We also had some other help which I’ll go into in another post.

I’ve been wanting to write my ‘fire thankyous’ for a long time now, but felt a need to make sure I do it justice. Today is just the beginning.

We didn’t manage to get any sanity then, and not for a long time. I’m sure regulars would’ve noticed how stroppy I get in my writing sometimes. Just know that if I seem bitter and pissy at times, I am working to get past all that. It’s just that it’s been a shocking and devastating experience for us. It’s taken a lot over the past six months to just get out of bed, and take care of business. The business of getting on with it, even when you think you can’t anymore.

Now. Clothes. We lost most of our clothes as well. In the shop where the fire started, was where we stored the clothes we were using. There’s so much more space in there to do that. Also, it’s where I would dump baskets of clean clothing, before I found the time to sort, fold and put them away. We were in the heat of Summer. In our house part of the home that was not burned, were all our Winter clothes. Were they burned? No. Covered in soot? Yes. We took these soot-covered Winter clothes and wore them in the hot Summer. There were one or two pieces that were more suitable for Summer, so we’d mix it up a little bit with our Winter pieces! All the clothes we had did end up getting washed at the motel, but were still soot-stained, and we knew we’d have to replace all our clothes when we were capable, because the reality is that they were destroyed.

Here is my son on one of the few days we managed to get them to the park to escape the cabin fever of being squished into a motel. Most days it was too hot for the park, so we’d wait until afternoon/evening, then it woud rain! You can see my beautiful son modelling his flanellette pajama pants with a singlet top and gumboots. The two little ones only had gumboots left as shoes.

We looked and felt like derros. We were stressed, and added to that, we felt like losers who couldn’t dress their kids properly. At the park that day, few of the kids would play with our two little ones. My eldest daughter was wearing something more ‘normal’ that day, and the difference in how she was treated was palpable. I worried what all the other parents thought of us as a family, and more importantly, as parents. It was shattering.

We did manage to get together a few other clothes, and I’ll talk about that in future.

Anyway, where does Red Cross come into all of this, you’re probably wondering? Well, we’d had some friends recommend to us to ask Centrelink about a Crisis payment. Of course, this had to wait until Centrelink and the banks re-opened after xmas. New Year’s was coming, so we had to act pretty quickly. Every single towel we owned was destroyed in the fire. We had showers and dried ourselves at the motel, but when we came home, we were on the nose until we could get some towels! A few of us dried ourselves on some sooty bedsheets when we got really desperate.

I can’t remember the reasoning behind it, but for some reason we didn’t qualify for the Crisis payment. Centrelink assigned us a social worker. I’m not sure exactly how Red Cross got involved, but the point is that they did. They asked one major chain store to donate a voucher from their store to help us with clothing. I won’t name this company. They led us to believe that they would help us out for a week or so, then decided they wouldn’t be going ahead with it. Well, that’s their perogative.

So next, Red Cross approached Target, who almost instantly agreed to donate a $500 gift card at our nearest store. I raced into town with the help of a good friend, and because there was a very good sale on at the time, managed to get many, many new clothes and some towels at good prices. Not bad for a family of six!

Red Cross and anyone else who supported us at this time have a place in my heart forever. I plan to make it my mission to spend a lot of time on this blog supporting Red Cross in the future as a way to say thank you, and to help them do what they do best.

What they did for us during that crisis was fantastic and a huge relief, but they have done so much more for us than that.

When my mother had a stroke a year or so ago, she spent three months in rehab, learning to walk, feed and basically, function. It was a stressful and depressing time. Finding motivation was something she did well, but she too had days of feeling overwhelmed and helpless. She lost so much when she had that stroke. Although she’s been incredibly strong-willed even up to today, she can’t do a lot of things she used to do.

At rehab, they would hold bingo sessions and a few times, my mum won! Because her confidence was on fairly shaky ground, this made her feel happy at the time and capable. She won the two Trauma Teddies you see in the photo above.

My mum shares a birthday with my youngest daughter. For the first time ever, she wouldn’t be seeing her for their birthdays. She’d bought all her birthday presents right before her stroke amazingly! But can you imagine how pleased she was, to be able to earn these cute gifts for her granddaughter, hot on the tail of a stroke? That’s empowerment! I remember when I used to work in a women’s and children’s refuge, we had a cupboard full of Trauma Teddies to cheer up the kids going through a rough time. If you’ve never seen a troubled child receive one of these bears, let me tell you now, it is magical. Priceless.

I will be knitting these bears myself very soon.

Even then, this isn’t the end to how Red Cross has helped us. Two and a half years ago, my partner was diagnosed with severe OCD, depression and a little later, mild agoraphobia. He was tortured. I couldn’t cope with him yet, as I hadn’t learned how to. I had/have a carer support worker, and she suggested that I get a PHaMS worker (Personal Helpers and Mentors Program). This service is also provided by Red Cross. It’s mostly for people with an actual mental illness, but it can also be for people affected in other ways, such as carers.

My worker at the time helped a great deal. Once a week, she’d come to our home to talk to me and help me to wade through the myriad of obstacles I was facing with my partner’s illness. In time, we found that my partner would benefit from a worker of his own, so he was assigned my worker (because he knew and trusted her) and I was assigned a new one. In time, I found I no longer needed the service. My partner, though still sick, has just stopped needing a PHaMS worker now.

If it weren’t for his worker, he would never had gotten onto the disability pension, which in turn means I wouldn’t have gotten onto carer’s pension. She also helped him to get to appointments when he was too anxious to attend, and would often go with him, not just to help make him more comfortable, but also to advocate for him. To help him remember what was said, or to remind him of what the specialists needed to be told.

She gradually managed to get him to start leaving the house for walks, which is a much bigger deal than it sounds! She was very positive with him, always giving words of encouragement and pointing out his good qualities. She helped us to find services which could be helpful to our situation. She helped him to come up with plans for each step of his recovery, like little goals. She helped to troubleshoot issues he was having, ‘stuck points’, if you will. If he appeared to not be progressing in certain areas, she helped us to find strategies to get him through that.

She was always kind and compassionate. She was such a fierce advocate for mental health.

In short, Red Cross has given us support when we couldn’t find any. Help when we needed it. Hope when we had none. So it’s with much love and gratitude, that I say thank you from all of us, for all you’ve done. I want to do everything I can to support this brilliant charity, starting with this blog. I can start by spreading the word. Telling you the great work they do. Asking you to support them so that others like me can get the much-needed help when they need it.

If you’ve ever been helped by Red Cross, I’d love to hear from you! Comment below and tell us what they’ve done to help you. If you’d like to say thank you to Red Cross, give a donation, volunteer for them, hell, even share this on Facebook, Twitter or StumbleUpon! Put the word out there so Red Cross can keep up the good work. Ditto if you haven’t been helped but respect what they do.

Update: I have set up a fundraising page as my way of saying thank you to the Red Cross. Click here if you’d like to donate. I’d also like to make it clear that because I’ve set it up via Every Day Hero, I won’t see nor touch your money at any stage of the donation proceedings. As far as I can tell, the money goes straight into Red Cross’s account at regular intervals.

OCD on TV

I‘m so pissed off right now. We’ve been dealing with workers in the public sector, trying to put out some OCD fires.

(For those who don’t know, I’m a carer to my partner who has OCD. Without being too specific, there are other sufferers in our little family, too)

It’s becoming increasingly difficult to get these workers on board to help us at times, or to respond the way we need them to, because of all the myths floating around about OCD.

I mean, some of the myths have been based on fact, but have been misinterpreted into something it’s just not. I think television plays a huge part in how OCD is perceived in society. Don’t get me wrong: I know it’s not fictitious TV’s ‘job’ to educate viewers on anything. The writers and actors are being creative, telling a story. What irks me though, is that whenever I see a character on TV portrayed with OCD, it’s regularly the same theme, time and time again:

- OCD sufferers are really neat and clean

- OCD sufferers are really organised.

- OCD is funny, but pretty harmless.

I used to watch Desperate Housewives a few years ago when it first became popular. I knew nothing about OCD at the time, and wasn’t living the reality everyday as I am now. There was one character, Bree Van Der Kamp, who had OCD. Wasn’t she just the ultimate, uber stepford wife, if you ever saw one? She’d keep her home immaculately clean. She was super organised. Apart from seeing a psychologist once in a while and being a bit annoying to her kids, she was the mother who was pretty much perfect. All the other mothers envied her abilities and would never have been able to keep up with her high standard of mothering.

I never saw her being two hours late in the mornings because her rituals slowed her life down. I never saw her hyperventillating with anxiety, or in a room on her own, rocking! I never saw her fly into a rage because someone near her mispronounced a word and it drove her to distraction.

In all fairness, I didn’t watch this series that long, so maybe that stuff was portrayed? But I seriously doubt it. Also, all OCD sufferers are different, and I wouldn’t expect all to be portrayed with the mispronunciation thing in mind.  But still… she was a ‘cleaner’ OCD sufferer. I never saw her scream bloody murder at the person who dared to unknowingly touch her pen. Just an example of what the reality could look like.

I never saw her run out of the home in a blind rage, threatening to never come back, that she was leaving all of them. But hey, I didn’t watch all seasons…

One show I have watched all seasons of, however, is Glee. Good god, how I love that show. And dear, sweet, harmless little Emma Pillsbury. Another organised little ‘cleaner’. I’m not denying that many OCD sufferers have a cleaning obsession. I’m just feeling that maybe I got a dud deal. I mean, how can it be that at last count, I had three OCD sufferers in this house, and not one of them has the cleaning obsession? It’s a bit hard not to feel ripped off.

When my partner was diagnosed two years ago with OCD, I was well chuffed.

I am going to have the cleanest home ever, and I won’t have to lift a finger.

Yes, sadly, I actually believed that. And, that we’d be super-duper organised. Guess what? Two years on, my house is still a pig sty. Because this illness wastes a shit load of time. My partner has improved a load, but I know he still has his rituals. His ‘checking’ behaviour.

But I need to go back to Emma for a minute. How is it, that when Will Schuester’s then wife deliberately contaminated Emma’s food, Emma sat there, just looking a bit pathetically sad? How did she not go completely postal, or at least glare at the woman with a thousand daggers of death? How did she not at least fidget, or hyperventillate? I mean come on, at the time, the woman was completely untreated, yet in a pretty severe stage of her condition?

Why, for the love of god, do you never see a TV sufferer of OCD, jumping out of a window of a frigging car? Or other, similar, impulsive behaviour?

How is it, that any time I watch a character with OCD on a TV show, the character never seems to feel as though the world is against them? That they are the lowest of the low, the scummiest of the scum? Because that’s the reality for a lot of sufferers!

It’s been scary to learn that many mental health workers we’ve had over time, don’t always know how to deal with it. That, if the police were called to help admit an OCD sufferer, that they may not take it seriously because what? They’ve run away, big deal. What are they going to do? Clean their way into town?

So, television execs, listen up: stop leaving the rage out of your characters who have OCD! Stop giving them such easy, perfect, harmless little lives! You’re not doing some of us any favours out here! Why don’t you throw in some suicide, some good old, ‘everyone would be much better off without me’? You make us carers, on receiving news of a diagnosis, think we’re in for a walk in the frigging park. Well, guess what? It’s not. It’s hell on earth, sometimes feeling as though there’s no end in sight.

Sure, it’s up to us, both sufferer and carer to get educated. Most of us do that. Yet we walk into that early stage, fresh out of diagnosis, with no information just yet. All we know is what we’ve seen on TV. For many workers in the public sector (teachers and police for starters), all they have is what they’ve seen on TV also. Until the information comes. Once we experience the reality as the illness unravels, we are shocked and horrified to learn that everything we thought we knew about OCD is just plain bullshit.

No end to the aggression, the being screamed at, the irrational behaviour and thought patterns. The not getting anything else done because all your energy is spent putting out this person’s fires. Watching someone you love/care about being absolutely tortured by their own mind. By the lies their brain is feeding them. Of course, with treatment, there is some relief, but it’s a slow, painful journey. For sufferer and carer.

In real life, TV execs, OCD sufferers don’t just throw on a t-shirt with ‘OCD’ on it in black letters, and dance on stage with the Glee Club students to Born This Way (awesome song though), and then everything’s hunky dory. Oh no, you didn’t! You’ve got to be shitting me.

PS: The OCD humour really doesn’t bother me. After all, we’ve laughed about it here at home many a time. It’s good medicine. And like my dad loves to say, ‘if you didn’t laugh, you’d probably break down and cry’.

Other reading:

Two Worlds I’ve Lived In

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