My Turn

It’s now three weeks since I’ve been back studying with the Open University. To say it’s been challenging so far would be an understatement. I did my best to get organised over the summer, to make sure I’d done as much groundwork as possible – made easier by the fact that I’m effectively restarting two of the four modules I’m taking this year. That said, nothing can really prepare you for the reality of a timetable full of reading, assignments and deadlines.

This week has been particularly hard. My mental health has taken a bit of a dip and all time management, organisational and motivational skills abandoned me. My under riding, inexplicable and plain intolerable anxiety can be tamed with PRN medication (taken as and when needed), but that affects my energy levels and ability to concentrate.

One problem I have is self-compassion (see my previous post), and I tend to plan out my week with no scheduled days off. The problem with this is that, when (inevitably) I have days where I just can’t , rather than be kind to myself and chill out with Netflix, I beat myself up for my inadequate levels of productivity. So this is something I know I need to work on.

Running is no longer a chore. I’ve found my feet with it again, have built up my fitness and am working on increasing my endurance over 6 miles before I tackle my pace…but it’s now just one more thing I have to fit into my timetable a couple of times a week! It’s gone from something I desperately wanted back, to something I loved again, to something that I’m struggling to fit in (?!?!).

It’s hard work, being inside my head, it really is. But here is what I know. Things may get bumpy again, I might have to rethink my medication regime, I might feel bogged down, swamped in work and give myself a constant battering for not getting things/enough done, or for not managing to run 6 miles fast enough. But I choose life. I will finish my degree this/next year and move on to the next thing. Mental illness has had it’s way for too long – now it’s my turn.

Letter to my Younger Self

It may (but probably won’t) surprise you to learn that I don’t like myself very much. I only have a very rudimentary understanding of the origin of these feelings, and I certainly don’t currently feel strong enough to address them. However, as part of an ongoing quest full on battle around trying to show myself a deeper level of compassion and respect, I decided to write a letter to my younger self. Here it is.

Hey there, Little One:

I know you’re wondering what it is about you, why you feel like your own skin doesn’t fit, why people seem to be drawn to you, to mock, ridicule and laugh when all you want is to evaporate, vanish, for them to just not see you. I know social situations are a living nightmare. I know you struggle to find the words, not just to express yourself, but to answer simple questions, that you miss subtleties and say the wrong things at the wrong times. I know all of this is incredibly frustrating, terrifying, confusing and that you don’t know where to put yourself. I’d really like to tell you that this will improve when you leave school and go to university, that you’ll gradually find your feet, grow out of it and make a decent life for yourself. But it would be unfair to lie to you. Fasten you’re seatbelt, kiddo, it’s going to be a long and bumpy ride.

These feelings will persist throughout your adulthood, but here are some things for you to bear in mind. When things like going for interviews or changing job seem impossible, when people say “you can do better” and project societal pressures on you, they mean well, of course they do, but it’s not all that matters. You see, the world you’ll enter just isn’t for you. And that’s ok. No matter what people say, graduating with a degree you (largely) don’t understand and going into a job with prospects, where people expect you to climb the ladder, isn’t what life is about. Don’t exist in this world until all you’re doing is surviving, until it grinds you down to a shadow, until you’ve stopped eating (trust me, sorting that one out is going to be the hardest thing you’ll ever do), sleeping or functioning. Find what makes you happy (I think you’ll be able to work it out, if people give you the space and encouragement) and make a move before it’s too late. In this way, you’ll save yourself not only time, but so much pain – almost too much pain for one person to handle.

Talking of people, keep those who love you close. Don’t spend years shutting them out – you’ll break their hearts, over and over and over again. Be patient with them when they say the things you don’t want to hear (and trust me, there will be many such things). They’re having fear-based responses to the things they see you doing to yourself, they’re trying to jolt you back to what they see as ‘reality‘, they’re being cruel to be kind. I know you hate yourself, that you feel unlovable, that you just can’t fathom why anyone would care less whether you live or die. But there are people who want you here, and you have to stick around because another couple have yet to arrive – think of all the things you have to teach them! You might never be a mum, but you can be the best auntie on the planet (at least as far as these two little guys are concerned).

And now we’ve moved on to a slightly more positive note, let me say this. Things will get better. You’ll work out what you want. Maybe even more crucially, you’ll work out what you don’t want! You’ll realise that there is a place for you in this world and you’ll have the courage to go and get it, or at least try. It won’t be easy. At times it’ll feel like the universe is against you and you’ll be knocked down, again and again and again, but you’ll get back up, again and again and again. That in itself is the most remarkable thing about you. You’re tenacious, fiercely determined and you JUST WON’T GIVE UP.

So, yeah, things are hard, Little One, and that’s not going to change any time soon. But just hang on tight, put up with it all with as much bravery and dignity as you can manage and you’ll be a better person because of it. Before you’re very old, you’ll have gathered more insight and wisdom than most people do in a lifetime and, who knows, maybe you can use that for good one day.

Love,

Louise (aged 37 – see, you got that far) x

Running Battle

If you follow me on social media, you’ll know I’ve been trying to find my running legs again. It’s been more than a year since I ran the Glencoe Marathon and, I’ll be honest with you, there have been points where I questioned whether I’d ever run again. Not because I had a bad experience. On the contrary, training for, and running in, that race was one of the best experiences of my life. I’d do it again!

No, the doubt didn’t come from a bad experience; it came from the shit storm that’s been late 2019/2020, and I don’t even mean COVID. However, as is always the case, though it doesn’t always feel like it at the time, the storm blew over, things brightened up again and, in a moment of reckless (I don’t know if that’s spelt correctly, but auto-correct seems to think so) abandon, I decided to take Henry back to Cani-fit a couple of weeks ago, and supplement this with an independent run on a Monday afternoon.

To say I’ve rekindled my love for running would be an overstatement. For now, I’m tolerating it, gritting my teeth and getting on with it, whilst desperately trying to be easy on myself. Here are some of the things that I’m trying to bear in mind, the things that were at the forefront of my mind as I puffed my way along the beach and back this afternoon:

1. My sense of self and body image is currently dreadful; I hate the way I look, I hate my shape, I hate the way sports clothing feels against my skin and around my waist. So it takes a lot for me to put on my running kit and leave the house. The fact I’m doing so, despite these feelings, makes for a decent effort.
   
2. I’ve been pretty unwell this year. In fact, this is the worst year I’ve had with my mental health since about 2013. And that predates COVID…the laughing stock that has become the Community Mental Health Team, and my care plan, since March would need another post.
   
3. Until a couple of months ago, I was on so much medication that I couldn’t get out of bed before lunch time. No blame for this lies with me, it was sloppy prescribing and even sloppier follow up. I’ve been slowly chipping away at the doses of some of my medications, and eradicating some altogether. This isn’t happening overnight, it’s a gradual process. It has to be. Anyway, the point is that I guess it’s only natural that I should be a little out of shape.

So, as you can see, there are good reasons why I’m struggling to rekindle my passion for running and exercise. But, as my last point above illustrates, I now have less “help” with my brain chemistry so may need to rely on endorphins going forward. I’m also studying full-time this year and need something to keep me from focusing too heavily on my work or, before I know it, my mental health will have gone down the toilet again.

I know time will heal. I look forward to the time when I’m quite comfortably trundling along, enjoying putting one foot in front of the other, taking in the scenery and listening to good music. I’ve already added distance and shaved a minute per mile off my pace since this time last week. Oh, and Henry and I have loved seeing everyone at classes again, it’s nice to be back at one of the places where I feel most accepted.

Life in Lockdown

I was watching a question and answer session on Scotland Tonight a couple of days ago, based around maintaining good mental health at this time and I can’t tell you how validating I found it when one of the experts reminded us that those struggling are divided into two main groups – those who are finding it hard to adjust to lockdown due to lack of normal routine, not being able to see loved ones and general ‘cabin fever’ and those in the minority, with pre-existing mental health diagnoses.  A few people have said to me recently that I should feel relieved that I’m suddenly in the same boat as everyone else.  Comments like these are probably very well intended, but they’re also damaging.

The things that bother me most about lockdown life are not the isolation, the inability to see loved ones, the social distancing…it’s the uncertainty and lack of (or less accessible) support from mental health services, on whom I and my family have had to rely heavily in the last few months.  In the wake of COVID-19 and the ensuing withdrawal of face-to-face help, I experienced a sense of abandonment so intense that I can’t even begin to describe it.  I was deeply depressed, utterly lost at sea (in my own boat, not sharing one with everyone else) and could see no way of carrying on.  How could I even begin to cope without the encouragement of professional people paid to remind me that I had to get up, washed and dressed every morning?  You can think what you like about that last (rhetorical) question, but it’s honestly where I’ve been for a number of months.

However, following a phone call with a good friend last weekend, I was inadvertently made to realise that my, albeit rather shaky, future doesn’t have to depend on constant support and advice from mental health services…I can use them, but I don’t have to rely on them.  Rather, my future is a bit like play-dough, my own to shape and if I’m strong, determined and resourceful enough, I can survive using my own methods and tools.

And so it was on Wednesday afternoon that I found myself joining an online art session (what did we ever do without Zoom, by the way?), hosted by a mental health cafe (an actual brick building, based in London) who are currently obviously closed but still supporting people virtually…but you don’t live in London, I hear you cry?!  You see, the current global situation is awful, but its also brought out the absolute best in people.  The aforementioned friend put me in touch with them and I was welcomed with open arms, accepted and treated like one of their own…and I actually really enjoyed it.  I’ve even spent the last few days finishing the drawing I started:It’s no masterpiece and it can be whatever you want it to be, if the message doesn’t immediately jump out at you, but it kept me busy for a few hours! 

Not only have I been drawing, but I’ve been planning my days a bit, trying to build in some routine and so I’ve been studying as well.  Nothing heavy, and nowhere near the level I was at, but it’s keeping my brain ticking over until I feel ready to pick up where I left off a few months ago.

So what point(s) am I making?

Don’t assume you know how people feel or that we’re all suddenly feeling the same way.

Reach out and talk to the right people (those who do understand).

Draw inspiration from the strength of others.

There’s humanity everywhere.  Don’t underestimate the kindness of strangers but, equally, don’t forget to give back – pay it forward.

Similarly, the likelihood is that friends who truly understand have their own problems or concerns, so don’t bleed them dry without replenishing some of what you’ve taken.

Dig deep, be resourceful and come up with your own tools for managing things.  These are different for everyone so don’t be afraid to branch out and be an individual – I’m solving chemistry problems for fun lol.

Plan your days but don’t overdo it, especially if, like me, you’re in the very early stages of recovery (or indeed aren’t convinced you’ve even got a full recovery in you).  Following on from this, listen to your body and sleep as much as you need to.

Lastly (and this is cheesy), LAUGH!!  Even for a minute. I normally detest this sort of advice but, as I said to a (different) friend last night, it really does help lift your spirits, however fleetingly.

 

 

One Good Thing

I recently tried writing daily gratitude lists to help remind me of the little things in life that make the biggest differences.  However, it lasted about two days because it turns out that even that small task seems insurmountable for me right now.

If you read this blog at all, you’ll know that, at the beginning of the year, I put a lot of faith into a new medication regime that my consultant came up with.  I gritted my teeth, put up with side-effects and withdrawal simultaneously and, when that got too much, I relented and went into hospital for a couple of days, just to allow everyone (but mostly me) to exhale and work out a better way forward.  We’re now roughly three months on and I’m feeling disheartened, because things have plateaued…and not in what I’d call a good head space.  My mood is lower than I can ever remember it being.  I don’t think the current global situation is helping – partly because a lot of people are dying and partly because services and resources are less accessible – but it’s not the cause.  Being isolated doesn’t bother me…in fact, it’s a specialist subject of mine.

Anyway, back to the gratitude list.  I was talking to a friend earlier about how little I currently achieve on a daily basis.  My levels of productivity are low, I’ve deferred all my OU work until October, I literally spend hours and hours watching/rewatching Netflix/Amazon Prime movies/shows and boxsets on iPlayer.  Once I’ve walked Henry of a morning that’s me done for the day, I don’t want to talk to anyone, I have no energy, I sleep a lot, I don’t care if I eat…life is hard.

BUT I did ‘achieve’ one small thing this week – I managed to clean up my normal living space upstairs.  It had been left in disarray since right before my hospital admission and I was struggling to go in there at all but, with all the resolve I could muster, I went up with my mum, gathered rubbish, filed all my uni stuff away, cleaned, hoovered, changed the bed and washed the windows (okay, my mum did those last four things lol).  The result?  It’s no longer the shit show it was and is sitting nicely, ready for me whenever I’m ready for it.  I don’t know when that will be but I’m fine where I am, in the converted playroom, for now.

So I’m grateful that I managed to do that.

In terms of where I go from here (otherwise) who knows.  I’m thinking about cutting out one of my medications myself, but I’m not sure if that’s assertive, autonomous or just plain stupid.  It’s one I’m sure isn’t doing me any good (I’ve been more depressed, with chronic intrusive thoughts, since I started it), but I’ll sleep on that one.  If I’m brave enough, I’ll phone someone next week who is more skilled in making these sorts of decisions than I am.  If I’m brave enough.

Lockdown

I have to give Nicola Sturgeon credit where it’s due…at least she had the balls to use the word ‘lockdown’, which is more than the guy who passes for our PM, but looks more like a giant baby, did.  Also, I find her far more assertive and reassuring…why is she not our PM?  Oh, yeah, #indyref2…I don’t suppose that will be her priority again for a while.

Anyway, my political view (for what it’s worth) aside, this thing is really getting to me – way more than I anticipated.  For one, and I think I’ve said this in previous posts, I basically self-isolate anyway.  The only reasons I’ve left the house this year so far are for medical treatment or to walk Henry.  So I tick all the boxes that currently qualify me as a model citizen.  I can’t really pinpoint the reasons why this is affecting me but thought I’d bash out some thoughts…

…I’ve said this in a previous post, but I’m useless on the phone so I find it tricky to navigate the mental health services on which I so desperately depend without any face to face contact.  I’m also still having my meds tweaked.  I recently stopped one of two antidepressants I was taking, and seem to be a lot more tearful than normal.  I’m also more panicky, which hasn’t been an issue for a long time.  The panic seems to be (partly) related somehow to food/eating.  This is something I’ve not been doing much of, I’ve lost some weight which is raising alarm bells amongst those who know my history and meal times have become a battleground once more.  Tonight, I actually managed to eat some scrambled egg, beans and toast (I only allowed myself this after having walked Henry for a total of about 2 hours today, but this obviously won’t be possible going forward) but immediately dissolved into a hyperventilating, blubbering mess on the kitchen floor…I used to do this a lot during ‘refeeding’…??  Anyway, as of tomorrow, one of my new meds is to be increased so I’ll just have to wait and see what impact that has.

So, yeah, it’s a confusing time, overall.  I’m trying to keep myself busy in the house – I’m watching A LOT of Netflix/Amazon Prime (and have plenty of recommendations if anyone needs any lol), I have a 5000 piece jigsaw on the go (which is less relaxing and more frustrating, while I figure out a workable strategy), I’m playing a lot of PS4 and I’m managing to read a bit.  Weirdly, I miss studying despite not really having the capacity to sort out the dog’s dinner I left on my desk sometime around Christmas, much less read and understand anything…maybe that will come in time.  But all the while, I’m coping with this constant undercurrent of acute anxiety and low mood, a kind of inertia that wants me to stay in bed all day and an incredible sense of guilt at how unproductive I am, that I’m serving no purpose but to use up oxygen so vital for the survival of the rest of the human race.

[Just as an aside, if anyone reading this is a frontline member of NHS staff, I have nothing but respect and admiration for what you’re doing just now, and I pray that you all stay safe during this difficult time.  On behalf of service users everywhere, thank you 🙏 ]

COVID-19, Mental Health and Phone Phobia

NOTE: these are only my thoughts, and are by no means representative of everyone with mental health difficulties.

Perhaps a lesser reported impact of the recent Coronavirus outbreak is that had on people who struggle with their mental health.  Until recently, I was under the local Crisis Resolution and Home Treatment Team.  Upon discharge from their service, I was promised regular contact with my own named nurse.  This was more than a fortnight ago, before current guidelines/extra measures were brought into play.  Since the aforementioned discharge, I’ve seen my CPN once (two weeks ago) for about 20 minutes and have had no other contact whatsoever.

Now, however, things are understandably different.  I received word today that, going forward, appointments will be conducted over the phone.  I was expecting this and have done my best to mentally prepare myself…but I HATE talking on the phone (take the hint, people, don’t ever hit me up for a blether 😂).  Believe it or not, I manage appointments far better on a face-to-face basis.  Anyway, my consultant is going to ring me on Wednesday morning (at least I won’t have to get dressed lol), there’s a lot I have to say and I’m scared I’ll clam up and miss things out.  Although I’ve (eventually) noticed a slight shift in my brain chemistry since the change of my medication, I’ve now definitely plateaued.  On a scale of 1-10, my mood is stuck somewhere around a 4/5 (10 being the best I’ve ever felt, 0 being rock bottom).  I haven’t driven in a couple of months, I only leave the house to walk Henry, I’m still sleeping downstairs in the spare room (my own living space is still way too much of a trigger, being the place I totally unravelled* pre-hospital admission, I spend most of my time holed up watching films/boxsets on Netflix or playing my PS4 (self-isolation is my specialist subject), my appetite is dreadful, I’m losing weight…the list goes on.  Will I get this across over the phone?  Or will I just say everything is ‘ok’ and prematurely end the call?  That remains to be seen.

If I do manage to communicate the above concerns, what will be his response?  Will he increase my new tablet?  I know there’s one I still take that he previously mentioned taking away…will he suggest this?  The last time I cross-tapered it went spectacularly wrong, but at least I had 24/7 support.  I doubt that will be feasible at the moment.  If there are changes to be made, how will they be implemented?  I’m assuming the CMHT will alert my GP…?

So, yes, I realise the gravity of the COVID-19 situation and I’m not complaining about how it’s being handled, that’s the last thing I’d want anyone to think.  I know that there are groups within society who are considered ‘at risk’ and who must be protected as far as possible and I’ll absolutely do what I can to minimise the chances of me unknowingly spreading germs.  But I, along with many others, are also ‘at risk’ for different reasons.  Where are our guidelines? 

*euphemism

If I Was Brave

**TW: references self-destructive behaviour and suicidal thinking.  Please proceed only if you are comfortable with the subject matter**

If I was brave…

I’d punch a hole in the wall/wardrobe/my bed, but I’m currently still not sleeping in my own room so I’d effectively be destroying someone else’s furniture.  Why do I still have that insight when everything else is so confusing?

I’d eat.  At the moment, I‘m living subject to certain, self-imposed rules around food.  I haven’t enjoyed anything I’ve eaten since some time in January.

I’d tell everyone to f**k off and leave me alone. 

I’d leave a note, get in the car and make myself disappear.  Heck, maybe I wouldn’t even leave a note.

I’d stop saying “no” when (obstructive) people ask me if it’s really urgent that I see/speak to someone. 

I’d follow through on one of the plans I’ve made to end my life…I formulate many each day.

But I’m not brave, so I’m stuck with these thoughts on a loop and only sleep, if it even comes, brings respite.

 

Monsters and Voices

“I’m friends with the monster that’s under my bed

Get along with the voices inside of my head”

~Eminem

These song lyrics have been stuck in my head for the last few days.  I’m not too sure why.  Perhaps because I’ve finally noticed a bit of a shift in how I feel – I’m less anxious and can concentrate on things for a little longer.  My mood is still very low and I have no appetite at all, but that’s much more manageable than the chronic agitation that goes alongside the anxiety.

Things are far from ideal, but I believe the medication changes have finally done something to my brain chemistry and I’m not impulsively giving in to the voices and intrusive thoughts that drive me to make mistakes and end up in hospital…I’m allowing them their place, acknowledging them, but I’m applying certain techniques and strategies that help me not to succumb to the things they’re asking me to do.  Heck, I’m maybe even making friends with them.

What does this look like?  I’m more peaceful/can sit still (for short periods anyway, lol).  I’ve binge watched a season and a half of a series on Amazon Prime Video in the last four days, where recently I’ve struggled to concentrate for more than 20 minutes at a time and would find myself having to rewind bits of an episode until I just gave up completely.  I’m working at regaining a morning routine (getting up, having breakfast and getting showered…I even managed out with Henry this morning).  And I’m listening to the professionals who reassure me that this is enough for now, that I need as much rest as I can get and that an afternoon nap is almost a necessity, rather than the weakness I often see it to be.  Maybe most telling of all is that said processionals, the Crisis Team, are finally discharging me at the end of this week and my own CPN/named nurse and Consultant (with input from me, obviously) will resume control of my ongoing treatment and care.

So while waking up each morning to the notion that I’m starring in my very own version of “Groundhog Day” remains my current reality, I’m at least getting out of bed and trying.  And then I pop my head underneath the bed and greet those fickle little monsters; they’re free to stay as long as they like because, despite their best efforts, I think I might be stronger than they are.