Taking Care

Evening all,

This week is Dementia Awareness Week over here in the UK, so I want to talk a bit about my grandma.

I read once, in a book discussing witchcraft practices, that it often skips a generation, like a grandmother teaching a granddaughter how to make crafts. When I think of my grandma growing up, that’s how I think of her. Not as a witch (I think she would have had an aneurysm if anyone had called her a witch, although she happily helped me with making broomsticks and witches’ hats during my ‘Worst Witch’ phase), but teaching me how to knit and sew and plait, and make cards and bookmarks with stickers and fine-liners. She was active in the WI as well, doing much the same thing in her community. But when my grandpa died, it was like a switch flipped. I remember her saying ‘Losing your life partner is a very different kind of loss.’

She wasn’t wrong. The initial depression passed, sort of, but the agoraphobia and anxiety didn’t. Then she started forgetting where things were, and when things were, and having conversations twice. She was diagnosed with dementia – Alzheimer’s – about two years ago now. The last time we met, she didn’t recognise me until I took my hat off. That was last Christmas. I doubt she’d recognise me at all now.

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It’s sad, in some ways. She, who was once so independent, who used to bodily turf Grandpa out of the kitchen so she could bake or cook, who had no issues teaching me some respect for my elders, is now almost totally dependent on carers and nurses. She, who could talk for hours about her family, and what it was like when she and grandpa were first courting, now has trouble remembering what was said five minutes ago. But in other ways, she’s very lucky. Dementia itself is insidious by nature – cognitive changes which occur suddenly and devastatingly tend to be result of stroke or traumatic brain injury.  Grandma never noticed the decline, or never cared enough to point it out. A report released earlier this week by the Alzheimer’s Society stated that 48% of people with dementia said they feared becoming a burden, and I think that being aware of the loss of memory and identity that comes with most forms of dementia is possibly worse than simply having the disease itself. But she’s happy where she is, and that’s the important bit. As long as she’s happy, I can’t feel sad for her. I feel worse for my dad and my auntie Helen, who are shouldering the majority of the administrative burden and who, unlike grandma, are more than aware of the decline.

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It’s not an isolated story, either. I used to do a lot of phone work for a charity for the elderly, and the number of people phoning looking for advice regarding their parent who had just been diagnosed with dementia, or a person with the early stage of dementia themselves, was astounding. And this is without the Tories’ latest social care policy announcement, which could see many people robbed of their assets to pay for their social care after they die; their new means test places people with assets of over £100,000 on the ‘rich’ end of the spectrum – well, okay, but included in this means test is the value of their home, which, unless they’re living in a council flat, is highly likely to be over £100,000. Considering it was much easier for a lot of people to buy their own homes back in the 50s, this means that, simply for having social care needs, a pensioner with dementia and their families could lose everything. They’re terming this ‘the Dementia Tax,’ and it’s clear why; those living with chronic and debilitating conditions which severely impact their ability to live day-to-day, like dementia, are those likely to be hit hardest by this. Rightly so, there are many calling this both ‘grossly unfair’ and ‘electoral suicide’, among some less savoury words – it strikes some of, if not the most, vulnerable people in society. Yes, in a lot of ways, my grandma is very fortunate; she has savings put aside for this scenario, and she has family to help her out. With any luck, she’s set to be happy where she is until the end of her days.

On a more positive note, I’m running 10km next Sunday in Manchester, in aid of the Alzheimer’s Society, who commissioned the report cited above (the whole thing is well worth a read) and who aim to support those living with dementia and their families, both at home and in the community. My JustGiving page is linked below, but don’t feel obliged to donate. Just, maybe have a think about what you’re voting for, before you cast your ballot – in the UK or elsewhere.

Stay awesome, everyone.

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JustGiving

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Old Lady in Chair

 

 

Words Are All We Have

I HAVE INTERNET AGAIN, and it feels good. Hopefully everyone had a fabulous Christmas and is looking forward to an awesome New Year. We spent it very quietly at Dad’s, and surprisingly for us, had all the leftovers done with within two days, which has got to be some kind of record. Mum, unfortunately, is still making turkey pie,among other things – I am not complaining about this.

Of course, it wasn’t all fun and games – we heard the devastating news on Tuesday that the amazing Carrie Fisher had passed away following a heart attack on Christmas Eve. Not only a wonderful actress and an all-around amazing woman, Carrie was also a big favourite of mine because she never kept her mental illness quiet, and her service dog Gary was a feature at many of her public appearances. I recall – I think it might have been my Mum – well, someone I knew once, talking about Star Wars and how much I loved Princess Leia, and that other person just turning around and saying, ‘Well, you know Carrie Fisher’s a drug addict, don’t you?’ As if that negated every single one of her achievements. As if that was the sum of her life’s work. She lived all her life with bipolar disorder and everything that entailed, and she not only survived, but thrived. She wrote some incredibly funny, incredibly honest memoirs, she starred in one of the biggest blockbusters on the twentieth century, and don’t even get me started on her interview comments prior to ‘The Force Awakens.’ She was human. We’re all human. We all have our weaknesses. Let’s remember her as a woman who did not survive her mental illness – she lived with it, and my God, did she live.

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Carrie herself wrote a brilliant column for the Guardian, and in November she wrote one about living with bipolar disorder. She absolutely says it better than I ever could. The column can be found here.

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In other news, in my internet travels I came across another article – this time in the Telegraph – talking about a 2008 interview with Daniel Radcliffe (of eponymous Harry Potter fame) in which he discusses living with dyspraxia. I’ll admit to being quite surprised – I like Harry Potter but I’m not a rabid fan and the eighth film pretty much wrecked the entire franchise for me (Fantastic Beasts notwithstanding), so I don’t follow it that closely.  Also because dyspraxia is not usually a condition which makes the news – or anything else for that matter. More recently, Cara Delvingne of Suicide Squad and Paper Towns gave an interview in Vogue in June 2015 in which she talks about having depression and dyspraxia and being bisexual – a cocktail of conditions very close to my own experience. And it needs to happen more. I notice that, when I talk about my dyspraxia and my experience with it, barely anyone bats an eyelid – but the second I bring my autism into the mix, everybody wants to know.

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Regarding Daniel Radcliffe, his statement about living with dyspraxia was responded to by the Dyspraxia Foundation USA. It has its own page. Yet the corresponding foundation in the UK made almost no mention of it, and regrettably they don’t keep archives as far as I can tell.  I don’t believe that one condition is any more important than another, and autism is sometimes the more obvious of the two – nevertheless, learning that you have something wrong with you, no matter what that ‘wrong’ may be, is a very scary moment. You’re being suddenly thrown into this scary void that not everyone really understands, and the more people that come out and talk about these problems, the better. I have to sit down and explain what dyspraxia is every time it comes up, and it does get rather wearing. I have to explain to prospective employers when I go in for interviews, that I’m not being rude or nervous, I genuinely don’t like to make eye contact – and only about 50% of them are sympathetic to this.

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Carrie Fisher was spoken of as being incredibly brave in talking about her mental illness. I’m not sure brave is the right word. Gutsy, yes. But also absolutely the right thing to do. We need to talk about these things, and to coin a feminist shout that echoes through the inter-web at various points, “Representation Matters!” Be that on the big screen, small screen, or real-life celebrities talking about what makes them human – their flaws and foibles. They make all of us human, as much as we’d like to ignore it.

Talk. It’s hard, but it’s worth it.

Stay awesome everybody.

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Picture Credits:

Carrie Fisher

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Cara Delevingne

 

 

Christmas Crackers

First off, I’m a bit annoyed with myself. This was supposed to be going up earlier in the week. Regrettably, I then went to my Dad’s, who turned out to have no internet. Oh well, it’s forcing me out of room and into being social, which I guess is the point of having a family Christmas.

For a long time, Christmas has been a bit of a weird time for me. Up until the age of about 16, it was me, my Mum, and my Dad in a mildly stressful but ultimately happy dynamic. That fell to pieces at 17, and at 18 I outright refused to come home. Ever since, Christmas has been a mixture of the weird and the wonderful. More weird than wonderful, to be honest.

See, now my Dad has a whole new family (and cat). Josh is still in the picture, obviously, and my sort-of-stepmother has a mother, and three kids of her own, two of whom have long-term partners. Christmas Day rocketed from three people to about nine in the space of a very short time. New house, new town, new people, new baby this year…for an awkward dyspraxic-autistic kid it was like being thrown into the seventh circle of Hell. All my little Christmas traditions went completely out of the window, along with my comfort zone. Which incidentaly, I’ve never found since.

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I’ll be honest, I spent the first year of it all drinking steadily. I think I drank about half a bottle of Amaretto, plus some bubbly with dinner. Worked for me, since Amaretto I can drink pretty well without being too ill. My boyfriend and I, however, agreed that it wasn’t a very healthy comping strategy and I abstained last year. Big mistake. Massive anxiety attack slap-bang in the middle of dinner.

If there’s one day you don;t want to be having an anxiety attack, it’s Christmas, made worse when Dad wanted some help and then got pissed when I couldn’t give it to him and accused me of throwing a tantrum just to be awkward. Anyone who knows me knows I grew out of that phase aged about 15. Would he or my stepmum listen to me? Absolutely not. And ever year since, something about Christmas has devolved into some kind of massive argument. Needless to say, I’m not looking forward to it this year.

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Well, that’s a lie. I still love the spirit of Christmas; the pretty lights, the good food, and the crap telly. The one time of the year the family really comes together in the season of forgiveness n’ all that. Thing is, I feel more and more like a guest in my own family a lot of the time these days. Mum’s got her lot, Dad’s got his lot, and I’m left somewhere in the middle, drifting from one to the other as time and money allow. I’d stop; but Josh IS my Christmas tradition now. I’m not sure I could ever really stop seeing him, even if the rest of the visit is awkward as hell. My Dad’s partner’s family are lovely people, but occasionally I’m not convinced of how much they understand about a condition like mine – nothing obviously wrong, just a different view of the world that they’re not necessarily expecting.

It harks back to a point made by by our old friend in this post here – If you misunderstand something, it’s Your Fault. It’s not the nicest feeling in the world, misunderstanding something and then being told off because you misinterpreted it. This applies to all the times of year, not just Christmas. And I’m not throwing a tantrum – I’m being overwhelmed. Anxiety attached to autism is not restricted to small children in supermarkets – it occurs in adults to, even adults who are borderline. Dyspraxia itself comes with its own dose of social awkwardness, and I find, especially with me, it’s often this that creates the anxiety; they aren’t mutually exclusive. You screw up in public, you aren’t sure why or how, and nobody will explain it to you.

So think about your family neuroatypical this Christmas. If they’re scared, or triggered, or down, try talking to them. We exist, we’re valid, and it’s not just up to us to make Christmas amazing for the whole family.

Stay awesome, and have a Merry Christmas/Happy Holiday, one and all. I’ll finish on a word from Tiny Tim (A Christmas Carol)

“Bless us, every one.”

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Picture credits:

Trees in snow

Snowflake

Mental Health Top Tips – What’s Top and What’s Not (Part 2)

Good evening interweb!

Hope we’re all hale and hearty, and we all had good days.

I had a busy day. Oh, the life and times of a Masters student – deadlines deadlines deadlines. Ah well. I signed up for it, I shouldn’t complain.

Anyhoo…yesterday I did a rundown of half a list of Top Tips for taking care of your mental health. This particular list was taken from this page of the Mental Health Foundation website. I see these things everywhere and wanted to poke my nose into how much actually works and how much is wishful thinking.We started with 1 to 5 yesterday, here are 6 to 10.

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I’d like to put in a short apology to people who tried to follow some of my links the other day – it only occurred to me later that linking to scientific papers while on my university-access computer was fine, but not all of you would have that luxury so; if you can’t access all of them, apologies.

Anyway. Part 2. Part one to be found here .

6. Ask for help

This is the one that gets to me the most. Don’t get me wrong; asking for help is always a good idea. But I often wonder if people truly understand just how scared one gets when you have a mental condition and need to ask for help. It comes back down to stigma. No matter how much we might understand in today society of technology and science, there is the pervasive idea in the community that people with mental health problems are different or ‘broken’ in some way. Internalised and treatment stigma is among the leading causes of people not seeking help, and stigma itself fourth overall . In a more accessible format, the campaign ‘Time to Change’ pledges to tackle stigma and help mitigate it’s impact on people, and for more information on this campaign, follow the link  here.

As a society we are taught to be independent, particularly in the Western world. For myself, I was terrified of coming forward about the fact that I was suffering; I was scared of being judged by my family, my friends, my future employers; of being told there was nothing wrong with me and that there was nothing anyone could, or would, do to help me; that I wasn’t ‘doing mental health right’ because in relative terms I didn’t consider myself especially serious. In spite of NHS guidelines and targets, the waiting list for psychological therapies is frighteningly long, in both adolescent and adult mental health services – clearly, this is very dangerous, but bear in mind not everyone can afford private treatment.

I could go on all day about the damaging effects of mental health stigma and the under-funding of the public mental health system, but I’ll cut it short there or we’ll be here all night. In summery – asking for help is fine; feeling like you can ask for help is a bit more complicated. But sometimes, you have to be brave.

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      7. Take a Break

Fun fact: according to the Mental Health Foundation, mental health issues account for over one-fifth days of work-related illness a year. Stress accounts for 40% of all work-related illnesses and is the second biggest cause of workplace illness after back pain (according to my lecturer, but it sorta makes sense). On the one hand, we need to work to live, unless you have a medical reason not to (“I’m a lazy bastard” is not one of those reasons). On the other, the fact of having a mental illness can make getting, and indeed keeping a job, that much harder. It’s the biggest Catch-22 I can think of – we all need to take a break, but actually can’t take a break because, as the old song goes, “money makes the world go around.”

In day-to-day life, however, it’s a much simpler proposition. There will come a point you are so stressed you can’t concentrate, that everything gets too much – that’s when you stop for a sec. Or an hour, or a day. You can’t stop permanantly – living with a mental health condition means exactly that – you have to live as well. I personally go for a walk (or on Youtube if it’s raining). Me-time is a good thing, especially when you’re an adult and you have much less of it.

Last thing; The list classes this as ‘take five minutes from your day-to-day activities or a lunch break at work.’ An aside here – 100% of the working population is entitled to a lunchbreak if they work over a certain number of hours per day anyway. It’s law.

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      8. Do Something you Love

I could lump this under at least three other headings; Keep Active, Take a Break and Keep in Touch. Again, we return to endorphins and the pleasure system of the brain; I draw your attention back to the links I included in Part 1. It’s true; doing something you love makes us happy and I don’t need science to tell you this.

From personal experience, and the testimony of others, one of the hardest things about having poor mental health is lack of interest in doing the things you love. It’s another Catch-22, especially with depression as you no longer feel like you have the energy to do what you love. Not to mention the slightest screw-up while doing this activity you love, can feel like your best friend coming in with a baseball bat and just whacking you in the head with it. We have to try that much harder to get enjoyment out of life. Which doesn’t mean we shouldn’t try in the first place, but for the people out there who say ‘Oh, you love doing that, why don’t you do it more if it makes you happy?’ – try and understand, some days it’s just not going to happen.

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      9. Accept Who You Are

I’m grouping this under Ask for Help. Yep, self acceptance is a wonderful thing. As Tyrion Lannister put it, “Know your failings. Wear them like armour and they can never be used to hurt you.” I swear, every single song or book or magazine article these days is about ‘be who you are and say what you think,’ and all that jazz.

There’s a wealth of literature on self-actualisation; the same for self-esteem and self acceptance. It’s empowering, it’s awesome, as part of a therapy program, I believe it’s very useful as a tool for life. It’s not like flipping a switch, though, which the article seems to be implying; that’s delusional. It takes work. I’ve spent four years cultivating confidence in myself, and I’m still not totally there yet. My standards for myself are so ridiculously high, I doubt I ever will be. And some days that’s fine and some days that isn’t fine, but I can’t imagine dropping my own standards as I’d have nothing left to aim for.

And all I can really say here is; try telling yourself you have to accept who you are when every thought in your head is telling you (in a very rational tone of voice) that who you are is a useless oxygen thief. Self esteem comes with time, and with help.

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      10. Care for Others

Again, one that could go under Keep in Touch.

This to me brings in some themes along the line of altruism, or the act of giving or acting on someone’s behalf without expectation of any reward. Whether you believe this truly exists or not is up to you, but some thoughts about “Altruism born of Suffering” and “Gift-Love” (if you say so mate) published online in Psychology Today Show there is some truth to this. There’s also an idea that one becomes happier spending on other people that spending on ones-self. So, as odd as it may initially sound, there is some merit to this.

Therapy is a two way street, as is friendship. I find talking to my friends very soothing and I like to think they feel the same way about me. This is one of those things which is quite idiosyncratic. In my experience, my friends which suffer from mental health problems are some of the sweetest, kindest people I know; but there does come a point you have to stop caring for others and start caring for yourself. Where that point is is up to you.

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So there. We have some tips which are useful and work, and others that need a little more thought before you just jump straight in. The take-home message I want to drive home here is; It is never as simple as the posters make out. Mental illness is a deeply scary and deeply complex issue – much like the brain itself.

I will be back at some stage with more in the crazy world of mental stuff. I want to try and stick with the mental health theme; it’s good for my course, it’s good for my brain and the more dialogue we have on these issues, the better.

Remember to care for yourself and your nearest and dearest. We all gotta live on the planet.

Stay awesome!

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Picture source – head

Picture source – heart and brain

Picture source – Yin and Yang

Mental Health Top Tips – What’s Top and What’s Not

NEWSFLASH: Today (10/10/2016) is World Mental Health Day. I’m ashamed to say that Facebook had to inform me and it almost completely blew past me.

You may have noticed the mental health is very close to my heart. Today, 1 in 4 people in the UK have been diagnosed with some kind of mental health problem.  I personally have never been shy or retiring about the fact that I am one of those people. I have been through CBT, I feel far more in control of my low moments; but from personal experience, the truly bad days never really go away.

This is not the case for everyone. I know people who have been in therapy for years and it has done nothing for them. I know people who believe there is no help for them and therefore refuse to seek help altogether. Around a year ago I wrote an article regarding the crash of Germanwings flight 4U9525 and the stigma surrounding depression (to be found here), so I won’t return to those issues in as much detail here.

The other thing that cropped up on my Facebook was The World Mental Health Foundation (who sponsor World Mental Health Day) stating 10 Top Tips for looking after your mental health. These tips appear to be ubiquitous; most of them are listed in every single self help book, mental health leaflet, motivational poster and God knows what else that one can find in any relevant charity or GP office. However, this doesn’t mean they should be discounted.

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Because I can rattle for England and in the interests of keeping this post both readable and digestible, I’ll post five tonight and five tomorrow.So, let’s have a look at the first five:

  1. Talk about your feelings

The oldest one in the book, but nonetheless a goodie. Talking can be massively cathartic, and ‘guided talking’ (which is how I like to think of counselling) can lead you down mental pathways which are very illuminating.

Unfortunately, it isn’t that simple. There is no such thing as ‘one size fits all’ in mental health therapy – which is a good thing – but not everyone responds to them, not to mention that a significant proportion of people relapse following completion of treatment. Add this to the fact that most people don’t want to talk about their feelings. In spite of the advent of the internet,(where any idiot can post their opinion – case in point; me), we live in a very insular society.

Do not get me wrong: talking about your feelings is healthy, particularly in those feeling isolated and scared. It’s up to the individual, however, to decide whether, and indeed when, to talk and when to stay silent. You shouldn’t push someone into talking if they don’t want to; it helps nobody.

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      2. Keep Active

This is one I am a big fan of. I know not everyone is into fitness, but I love going for a run or a cycle if I’m feeling down or stressed. There is a literal stack of evidence that exercise improves mental health; it releases endorphins (the brain’s internal pleasure hormone) which promote general wellbeing, not to mention the physical health benefits. I could sit here spouting them all day (but I won’t, because that’s not why I’m here).

It’s not an alternative to therapy, mark you. At the height of my depression I was cycling and riding almost every day and I still felt like hell – in fact, it shut my background noise up so that I had more time to focus on the crappy thoughts – which arguably made it a lot worse. However, walks can help on a down day (or night, but if you’re going to go out walking at night, please be careful). Runs as well, if you are that way inclined. But for serious mental health issues, therapies (both pharmaceutical and psychological) are recommended. Exercise is not a cure-all.

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      3. Eat Well

I think this one is a little bit nebulous, to be honest. Laying aside the fact that people on special diets such as coeliacs or lactose-free are perfectly capable of living on these diets and being perfectly fancy-free, it’s a very under-researched area. This doesn’t mean it doesn’t have some merit – logically speaking, if eating the right diet is an aid to weight loss/gain, healthy skin, the improvement of general body functioning – why not improved brain function as well? An article written by Nutritionist Resource (here) links food consumption habits to conditions such as depression, schizophrenia, and Alzheimer’s disease. As with all mental health issues, however, it is never this simple; for example, there is evidence to suggest that most psychological disorders have some kind of genetic component. Don’t panic – these gene variations are small and not particular heritable, but their presence alone is enough to complicate matters when it comes to predicting and managing mental health issues.

I think that eating the right diet is important anyway, but when it comes to staving off or preventing mental disorders, I think that there is too much going on in the brain to ascribe a major significance to this approach – yet. As for the future…who knows?

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      4. Drink Sensibly

The World Mental Health Foundation classes this particular tip under ‘Don’t drown your sorrows in alcohol.’ Not arguing with this at all. They’re right – alcohol is a depressant, not a stimulant, no matter how crazy and alive it might make you feel when you’re out with your friends, dancing on the table with your shoes on your head or something equally odd (I maintain to this day, the video does not exist). Alcohol dependence is not a fantastic coping mechanism and adds a whole new dimension to treatment. Unfortunately, it does tend to co-occur with issues such as depression – keep a sharp eye.

I’d like to add a another dimension to this tip myself however – drink enough water. The average human needs up to 2.5 litres per day to maintain a good level of functionality (link and link). This is surprisingly hard to achieve (or maybe I’m just lazy), but it does make a difference – it aids digestion, brain function, cell function…it’s an all around good idea. Personally, I feel much better in the morning if I’ve drunk enough the day before, and like sh*t if I haven’t.

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      5. Keep in Touch

I would really like to class this under ‘talk about your feelings,’ but I feel this pertains more to having a social life than to talking to a professional or having good ol’ rant to your best friend. It’s also about maintaining good relationships, and being able to recognise if someone is toxic for your mental health. I’ve had to back away from friends sometimes for a good long while because they’re simply not good for my state of mind at a given point in time. There is nothing wrong with this. If they care, they should understand. If they don’t, they’re not worth your time.

Humans are inherently social animals; no matter how much of a misanthrope you might make yourself out to be, as a species we don’t react well to being alone. There have been studies which have shown that social isolation (real and perceived) activates the same region of the brain that processes physical pain; the cortex begins producing a painkiller. Being left out literally hurts. It therefore makes sense that keeping in touch with friends should help with mental health issues. It’s often not easy, however; on a bad day, the idea of being in the same room as someone else can be the worst thing in the world. It’s made worse if you live alone or with people who you don’t know terribly well (like a house-share or a student flat), or if you have to go into work when the last thing you want to do is be social. Having the support network certainly helps, but that same support network should understand if you need some alone time as well.

Okay, that’s it for this half. I hope that’s been at least partly interesting an informative, and I’ll see you tomorrow for the rest.

Stay awesome!

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Note; if anything discussed above has affected you, or you feel like you need to talk to someone, below are some links to sites which can take you further or give you more information. These will be specific to the UK (as I know most about this system) but there will be similar sites for people living in different countries and continents. Help is out there somewhere, promise. 

http://www.iapt.nhs.uk/about-iapt/

http://www.mind.org.uk/

Brain and heart picture source

 Yin-Yang picture source