I’m clearly no stranger to sharing my life both online and offline, if I was this blog wouldn’t exist and you wouldn’t be reading this now but offline I’m starting to get tired of sharing my story and talking to people about my history and mental health. I’ve spoken to so many people in different settings from pop up cafes to fundraisers, funding bids for work and over 1000 young people through volunteering on the youth service I now run and although logically I know it’s not true it does feel as though there must be a shortage of people who haven’t heard my story by now.
Today I’m running training with my new volunteers on writing their personal story and although no one is forcing me to I don’t feel like I can avoid telling it again it doesn’t seem fair to ask them to share theirs and me not share mine, I’ve been thinking about it for a couple of weeks and Im still not entirely sure why I’m so against telling it now I think it’s partly that I’m tired of hearing it and then the fear of being judged and the shame of not really having achieved much in my life. I really do enjoy my job and it’s not that I think it doesn’t count but I’m in my 30’s and just getting started in career where most of the people around me are younger than me and more qualified. I don’t feel like an inspiration or someone to look up to, hearing other people’s educational backgrounds and qualifications reminds me of what I don’t have and what I’m not clever enough to ever achieve, maybe this is internalised to an extent but I also know the reality of my experiences in education.
When you’re known for one thing or people see you a certain way it can be hard to break that view no matter how much you change or try to move on you’ll still be seen the same way, I’ve talked about my past so many times as a volunteer and although not in great detail there’s a high chance that I’ll be meeting people in my new role that have heard my story, I don’t hide having mental health problems and it’s not like I even could if I wanted to I’ve made sure of that it’s something I’ll never be able to fully hide but even though it’s my own fault I wish I had a choice.
It’s 6:30 on Friday afternoon, I’m stuck on a busy train that smells like a giant armpit and someone is crunching crisps in my ear and dropping crumbs on my shoulder, welcome to commuting. You may have seen some news articles this week about the issues faced by disabled people with priority seat badges not being able to sit down, this is not something new and although the TfL badges are an improvement people have very selective vision when using publigc transport. Of course it’s entirely possible that people with hidden disabilities who don’t want to wear a badge may be using these seats but when every seat at the front of the bus is full or every priority seat on the train is occupied it seems unlikely these all these people have a hidden impairment
It’s not just about priority seats either but the general lack of consideration towards disabled people using public transport and general attitude that we’re a nuisance or in the case of the never ending buggy vs wheelchair debate wanting special treatment and expecting to be treated better than everyone else, people don’t even notice you they don’t look up from their phones or newspapers or even look where they’re going when running for a train. Since I started my new job four weeks ago I’ve been commuting daily, mostly to the office I’m usually based at which is a three minute train ride and a 15 minute walk from home however recently I’ve been working at our other office a bit which is further away plus traveling to my boyfriends every week. Because I’m working at different offices and not always able to use my pc I have a work laptop, like me it’s big and heavy and quite old and because of my disabilities I can’t carry it around easily.
As a reasonable adjustment work bought me a rucksack on wheels so I can wheel around my laptop, notebooks, resources for workshops and any other stuff I need. In the 4 weeks I’ve been using it I’ve had help getting on and off the trains once, the station I get off at rear work doesn’t have a lift so I have to carry it up and down the stairs. People find cases and bags on trains annoying I know it’s bulky but I have no other option unless someone wants to replace my brain, spine and connective tissue so I can carry things while staying upright and not being in pain, today I dropped my stick trying to get up to get off the train it’s metal and wood so makes a loud thud when it falls; some women sitting near me were commenting that the man sitting next to me didn’t pick it up but they were sitting near enough to reach it and didn’t help. I see people with buggies being helped on and off trains or up stairs I’ve even helped in the past but being disabled people get annoyed because I don’t run up and down the stairs or because I need to use the handrail or have mobility aids that take up space.
I know my usual audience aren’t the type of people this post is about and I’m sure plenty of you will be sitting there nodding knowing exactly what I mean so I hope that this post forms some kind of a bond or solidarity with the disabled people who take up space, who use transport, who have to try and navigate an abled world. And if you are a non disabled commenter please offer someone a seat, ask if they need a hand, done be a commuting cockwomble.
I’m struggling. As a mental health blogger you’d think that would be easier to say than it is, it’s probably a combination of reducing my Quetiapine, a new job and being utterly exhausted but either way I’m not feeling great. I admitted I was struggling at work yesterday and told my manager that I spent last Friday crying at my desk because I felt so isolated being alone all day, i probably work in the most understanding organisation for someone with mental health problems and despite a fuckton of therapy I still find it hard to admit that and ask for help.
I don’t feel that I’m hard on myself I just think I should be able to manage though of course my brain is now telling me this was all a mistake and that I knew I’d fuck everything up it was inevitable that I wouldn’t be able to cope blah blah blah. It’s one thing when these thoughts are conscious because then I have some control over it but this is like a running commentary in the back of my mind it’s not me deliberately putting myself down but it won’t stop and I don’t know what to do to shut it up. I’m still working out boundaries and what is the right amount to share with people, I feel like I overshared yesterday to someone who isn’t my manage who doesn’t need to deal with my mental breakdowns and now I simultaneously want to crawl into a hole and die and also apologise repeatedly (not sure if this is a mental health issue or just being English).
I do have targets to meet I do have things I need to do and achieve but I’m not under pressure these are things I have a year to do and everyone keeps reminding me it’s only been three weeks so it’s not that. I have a psychiatrist appointment in just over a week and I’m hoping things have levelled out a bit by then, if I’d known it would take several years to come off this medication I might have thought twice about taking it though not everyone has such difficulty with medication adjustments so how would I even know this would be so hard.
Attachment issues are naturally coming out to play because I feel low and I want to cry constantly (which is actually really unlike me) so once again having thought I was feeling ok about someone I suddenly miss them again.
This was disjointed rambling but I wanted to actually start and finish a blog in one go rather then going back and making sure it was post worthy because my head is disjointed rambling right now and I need somewhere to dump it all, I guess one positive is I have no desire to self harm and I’m still over 5 months free.
I took part in a photo project on Facebook for people with chronic illness a few months ago and balance was one of the prompts that stood out for me, people talk about a work life balance and having a life outside of work but another type of work life balance for me is the balance between how I’m seen as a member of staff and a person with mental health problems.
My mental health isn’t a secret it couldn’t be if I wanted it to be not just because of this blog or the very obvious signs all over my body including my hands (big regret) but also because I came into the organisation as a service user which is something I make no secret of but at times it’s hard to know how others see me. This may be my own internalised anxieties or not feeling good enough but I find it hard to know whether at times of stress I’m see as a stressed or frustrated member of staff like any other or if I’m seen as a person with a mental health problem overeating as a result of their mental health.
Again this may be internalised anxiety and probably a generous dose of feeling like I don’t deserve help or that I shouldn’t ask for help and should be capable and prove myself (probably mostly the last part) but because I feel like I should be able to cope and I’m afraid of being seen as incapable I find it really hard to say I’m struggling at work. I know I keep going on about how scary it is that people having expectations for me to live up to but Friday afternoons seem to be the time my brain likes to have a breakdown and I even got left off work early for being mental today, being overtired and alone all day meant I spent more time crying at my desk than actually working.
My mental health and volunteer experiences help me support my volunteers but I worry that I’m seen as less professional especially because of my self harm and the fact that I don’t cover my scars or that people will think I’m not capable; as it is I’ve been judged by professionals when I’ve attended consultations or panels as a person with lived experience or service user rep, metaphorically patted on the head or had things I’ve been dealing with for years explained to me with a patronising smile and yes some of these people may do it to everyone but when you’re trying to prove yourself or been seen as more than just a token or a tick box to satisfy a requirement it’s that bit more frustrating. I keep being told that everyone experiences anxiety at the start of a new job and it’s normal to have doubts but again this is where the difference lies because I always feel I’m waiting for people to see through me and tell me this was all a mistake.
This blog is a bit all over the place but what (I think) I’m trying to say is that the balance between work and life is more complex for me than just work and outside work.
This existential crisis was brought to you by caffeine and chocolate.
Tonight* my brain is spiralling down into doom and failure convincing me that I’m a fraud just waiting to be caught out and that I’ve someone convinced people into believing I’m something I’m not, that people will soon realise this and see right through me and that giving me a job, responsibility and letting me run a service is a mistake. I’ve had the talk about imposter syndrome with someone before, someone I respect who to most people would never appear to feel this way I even bought myself a print of the picture used in this blog to try and convince myself that actually I’m not the imposter I think I am.
The feelings of responsibility and expectation are once again terrifying me, for a long time I’ve believed that if I never try I can’t fail and I can’t screw things up but I’m restless and wasn’t feeling stretched anymore by the things I’ve been doing. I’ve spent a large amount of this evening crying as my thoughts continue to spiral and snowball collecting more and more until it becomes and avalanche (sorry for the naff metaphor) anxiety has been creeping in recently and I’m trying to tell myself that it’s normal to feel some anxiety about a new job.
It doesn’t really matter what people say because my brain won’t listen, I know I’m not the only one that feels this way and I also know that I did well in my interview but facts and emotions don’t mix and the fear is strong. I wanted this job so much and I still do but the loss of security and increased responsibility and the worry of everything going wrong is very much on my mind (and in my dreams).
Today I have my induction with two other new members of staff and I’m hoping that I’ll just be treated like any other member of staff and not have to hear everyone say I know everything and that I’ve been here forever because this is still new to me and there’s a lot I’m going to have to learn.
Guess who’s back? Back again, dinos back, please like and share.
So it’s been a while, I’ve had to do lots of writing for work recently which hasn’t left me with much brain capacity to write for enjoyment, but I’m back and return with a rant.
This week is Mental Health Awareness Week and the theme is stress which is ironic as stress and work are the reasons I haven’t blogged recently. It often feels like a week can’t go by without there being some kind of awareness day/ week/ month so far this year we’ve had time to talk day, self injury awareness day, university mental health day, eating disorders awareness week and no doubt many others. This month is borderline personality disorder awareness month normally I’d write something about these or use them as a springboard to write about a related subject but this time I’m writing about other peoples way of promoting these awareness days.
I know that I often use these awareness days and campaigns to promote my blog and that’s not what I have an issue with but people using it to promote their illness or compete over who is the illest especially on social media. Mental health problems and chronic illness already have so much stigma attached and there are so many misconceptions around them, the biggest areas of stigma I’ve found are within the medical system from Drs and medical staff I’ve had several occasions where I’ve been poorly treated and discriminated against due to my mental health and especially self harm. So why when there is already stigma attached do people within the mental health and chronic illness “communities” claim to be “raising awareness” by glorifying their illness or posting things that just add to the misconceptions?
Posting pictures of your self harm as part of an awareness day isn’t going to reduce stigma, posting pictures of your face scratched up or countless pictures of your starved body is shocking and attention grabbing but ultimately adds to the idea that self harm is purely graphic and bloody, that personality disorders are all about self harm or that eating disorders are about being thin and fragile, mental illness is complex but it’s not pretty and we don’t need more images of fragile, delicate white girls or bloody and bruised bodies in the name of raising awareness. If I had £1 for every time a health professional made a throw away comment about people with personality disorders or treated someone’s self harm in an unprofessional or even cruel way I would be a wealthy Dino.
We need to change how we raise awareness and avoid glorifying mental health problems as a way to show the reality of living with a mental health issue because the reality isn’t just what’s visible and just showing that side of things not only gives a very narrow view but also undermines people who don’t experience mental illness this way, it’s a broad spectrum and everyone is different and we all experience things, everyone has different symptoms and lifestyles, mental illness is invisible not everyone has scars (at least not physical ones) and that should be the message we send that mental health problems aren’t uncommon and they’re increasing and you can’t always tell just by looking at someone.
One day I’m going to be sued for my constant use of song lyrics
Recently things have been relatively OK I’m not saying it’s all wonderful but mentally I’ve been reasonably stable; I’ve had my first medication increase of Lamotragine and it’s hard to know whether it’s helping or not as this is probably the first time I’ve not been in crisis or extremely depressed when changing or adjusting medication, to add to this today I got a letter from the mental health team offering me an appointment in March with the recovery and support team presumably following on from the referral the psychiatrist I saw in December made. Yesterday I saw a friend I haven’t seen in a while and was telling her that I’d stopped going to the group I’d been attending due to it being a toxic and unsupportive environment that made me feel worse not better so with the recent mental stability getting the letter about the mental health appointment has just added another decision the think about, if I’m offered more treatment will it make things worse? Do I want it? Is it suitable or would I be better off considering something else I’ve been looking into?.
Life doesn’t come with a manual, I’m still trying to find out who I can complain to but for now I have to try and work things out myself and try and decide what the right thing to do in certain circumstances or what decisions to make when opportunities come along. One of the problems is that opportunities don’t always come along at the right time and that’s without the complication of not knowing when the right time is. For 7 months I’ve been working and earning on top of my benefits (all legit please don’t report me for benefit fraud) and it’s been the best, most intense, stressful, exhausting and rewarding 7 months, it certainly hasn’t all be smooth sailing with days where I was going solo bobbing up and down desperately trying to stay afloat and times when I was drowning and having 4:30 Friday meltdowns which involved texting my manager and almost quitting.
But 7 months in the grand scheme of things isn’t that long and in a perfect world I’d have more time to prepare and put myself in the best position to take on more not just skills wise but mentally too and feel as stable and secure as I can and ready to take the next step in moving off benefits another struggle here is my chronic illness I cannot manage full time and even if I was in perfect mental health I couldn’t physically cope on full time hours. I feel that so much of my self worth recently has been tied up in this job I’m told a lot how good it is that I’m working and being payed but as much as I’m enjoying having more money it’s more the feeling of being an equal on the same level as staff and things that come with it such as socials or attending the staff away day.
Sometimes I think I do too good a job at treating my mental health as something separate that I’m almost lulled into a false sense of security that comes with stability when realistically I still have to fight the urge to tell my manager everything I’ve done each day if he’s not in, let him know I’ve uploaded it onto the shared drive and where so he knows I’ve been working, of course I know that not only does he trust me to work alone but he doesn’t want to know every email I’ve sent or every webpage I’ve read for the workshop I’m writing. I’ve had a few relationship anxieties too despite MBT helping me with this it’s hard to explain to someone without mental health issues that people I’ve been close to or very attached to weren’t just people I worked with and that although they have moved on it’s still at times a struggle for me.
Although I’m handling it better I’m still not a fan of change and if anyone knows where I can hand in my resignation of adulthood please let me know until then I’ll be building a pillow fort.
*mentions medications, doses and side effects and self harm
Let’s talk about medication; the world and his wife and their depressed friend seem to have an option on the subject, the internet is full of memes about going for a walk in a forest and you know the Daily Mail will have something to say on the matter but the reality isn’t just popping a pill and everything is better it’s much more boring, frustrating and often unpleasant. I’ve been on and off medication almost half my life and I’ve been on some form of medication consistently for around 10 years. I’ve tried almost all the common antidepressants – citalopram, venlafaxine (made me throw up so much), sertraline (no effect but made me sick when I took myself off it), citalopram again (worked well then stopped working), seroxat – the scary one from panorama (worked well then stopped working, made me very mental coming off it), duloxetine (still on this the most effective and long lasting though I’m now on the maximum dose) I’ve also been on and am still on an antipsychotic quetiapine.
I loved quetiapine it helped me sleep, it lowered my anxiety and evened out those wonderful BPD mood swings it was great until I decided maybe I didn’t need it anymore that I was tired of being tired, I wasn’t in love with it anymore but it didn’t want to let me go. When I first reduced my dose the withdrawal was horrendous I remember the nausea that made me late for college because moving made me want to throw up, I lay on my sofa and cried for a day before breaking 6 months self harm free and phoning my care coordinator begging for diazepam instead they gave me promethazine this took me to three types of medication.
After this I increased the dose twice and things were ok until I tried to leave quetiapine again and it let anxiety and depression came back in, at this point I was just starting my new job and was also suicidal from the medication withdrawal, this then led to an increase of my antidepressant duloxetine now up to the maximum dose, the anxiety was unbearable so propanolol a beta blocker was added; 3 little pink pills a day.
A referral back to the mental health service and a medication review with a psychiatrist i’d met through my work with commissioning groups and we decided to try lamotragine an anti epileptic but not until I’d had a blood test to check my liver and kidney function oh and watch out for a rash because this can suppress your white blood cells.
My view on medication is that I’m neither for or against it, for some it’s a life saver and others it’s poison that dulls the emotions and sedates people into compliance but I do think people need to be more aware of what they’re taking and how it could affect them. Medication and the side effects are one of the reasons people with enduring mental health problems die on average 20 years earlier than the general population many of the health initiatives around weight loss and stopping smoking aren’t helpful to people who’s mediation has ground their metabolism to a halt or has increased the effects of nicotine on the brain and that’s not even looking at the social side of eating or smoking amongst people with mental health problems.
Medication has and continues to help me in combination with the therapy I’ve had it helps me do my job which in turn benefits my mental health, had I known more about the side effects before I was put on an antipsychotic maybe I’d have decided not to go on it but even if I’d made the same choice at least I’d have had all the information needed to make an informed decision.
There’s still a lot of stigma around being on medication and those memes about taking a walk in a forest really don’t help, there’s no shame in being on medication so please take your meds.
*For the purpose of this post i’ll be using the word disabled to mean people with a physical impairment, I do consider mental health problems to be a disability but for clarity i’ll refer to mental health seperatly.
So my brain whirred into action last night thanks to an Instagram post by the amazing feeding of the fox. There’s a type of self harm that’s rarely mentioned; self neglect comes up in the context of depression but even I’ve never seen a discussion around the connection between disability or chronic illness and self harm or disabled people deliberately not taking care physical needs as a way of self harming. There are times when I say yes when I should say no, times when I will push myself because I don’t deserve to rest, times when I don’t take painkillers because it’s an indirect way of inflicting pain on myself, going to places that aren’t accessible or doing things when I’m not well enough.
Any disabled person will also tell you there is a big divide in the treatment of physical and mental health problems the two rarely mix and the mental health services are not always good at recognising the impact that physical disability or chronic illness can have on mental health or that the things that could benefit you mentally aren’t always possible physically (like going for a walk or having a bath), being told I should do more exercise after I’ve explained that I have chronic pain and chronic fatigue can result in me feeling lazy and making myself do things that result in pain or injury and an increase in fatigue and related symptoms. This is where the lack of understanding or knowledge of the connections between mental health and physical impairments is such a problem because for me it can be an increase in symptoms but for others it can be much worse.
Then there’s the other side the health services who treat your body as if your mind isn’t a part of it, although I’ve always been disabled to some extent in the last couple of years my mobility has got worse and I’ve been using mobility aids and dealing with more pain and fatigue.
At the beginning of 2017 I tried to access psychological therapy for long term health problems. I wanted help accepting my chronic illness and dealing with no longer being able to do the things I used to and things people my age can do, I wanted some support in balancing my physical health and mental health. It took several months for them to tell me that they don’t offer support for chronic pain, between that they rejected me because I was under mental health services (I was in the process of being discharged and they were completely different services), they then said my self harm made me too much of a risk and they said they didn’t think I’d be able to manage classroom based psychoeducation (thanks for that).
Last time I checked neither my body or my brain can function without the other yet services treating each are still very separate and mental health services are often not accommodating for people with physical impairments and often aren’t accessible there’s also an assumption that if you’re disabled and have mental health problems then of course you’re depressed because you’re disabled because who wouldn’t be?
Ableism unfortunately is still well rooted within the medical profession and the even within the disability communities there is still too much separation of physical impairment and mental health issues.