Alone

 

Question Time!

I am thinking about writing a report or possibly a book in my next year of uni, regarding how personal friendships affect people who live with mental illness. I also want to focus on the role of the internet in outreaching to others in search of help, whether this is good or not, websites specifically for people who live with depression etc

I’d be really grateful if you could all fill in this questionnaire. Obviously, if not enough questions apply to you, don’t worry, but have a look through anyway. Please reply to this post with your answers. Also, if anyone has any ideas for questions I’ve missed, do let me know!

 

How do you classify your mental illness?

 

How long have you lived with it?

 

Are you receiving treatment for it? (therapy, medication etc)

 

Do you feel that your friends and family understand your illness?

 

Have you ever been a member of a real life non-medical group or organization specifically for people who live with mental illness?

 

What was your experience of this?

 

If not, why not?

 

Have you ever been a member of an online non-medical group or organization specifically for people who live with mental illness?

 

What was your experience of this?

 

If not, why not?

 

Do you feel that it is good for people who suffer from mental illness to seek out people with similar problems to help them get better? Why?

 

What do you think the effect of the internet has had in the role of reaching out to others?

 

 Do you think that the internet is a good way of gaining support with your illness?

 

 

 

 

Anarchists living with mental illnesses

Our Dark Passenger is a zine produced by anarchists who live with mental illnesses, about their experiences and about ways for the community to support those with mental health problems. I havnt finished reading it yet, but I thought it may interest some of you. It is available to buy from Katipo (Aotearoa) or you can download and print it from here - inside, outside.

PS - It comes with this warning:

WARNING

Parts of this zine are likely to be triggering to those who have a history of self-harm or mental illness, so please use your own discretion when deciding to read.

If you think you are likely to be affected negatively by this zine, please DO NOT read it!

Please see here for more information.

 

I think I should be perfect…

One of the things I’ve struggled with over the last few years is how my mental health has affected my career and vice versa. A large part of my identity has always been entwined with what I do and how well I do it, and it all started to unravel when I found myself deeply unhappy at work.

Obviously, the first thing I thought about was changing my job, but I wanted to stay in academic librarianship and there were very few positions available at the pay rate I was receiving. I did get interviews for all suitable vacancies in the vicinity, but didn’t get any of the jobs. This happened over the course of several months and I was gradually having more time off due to stress related illnesses such as IBS and asthma. Things spiralled downwards until I was routinely bursting into tears at home (though I did my best to hid tears and distress at work…), and feeling out of control. Ending in being off sick for several months.

Since I was a teenager I’ve always wanted to live by some “feminist ideals”- I wanted to go to Uni, get a well paid job, support myself financially, get my own place etc. I didn’t want to get married or be dependant on a man (though I always envisioned having a male partner). I managed all that, so it came as a shock when I realised I had depression. I shouldn’t be depressed! I was living by my ideals and hadn’t had any major upsets in my life.

However, through counselling and therapy I’ve realised I wasn’t just living my ideals, I was trying to be ideal… I put a lot of energy and care into trying to be very good at everything, and didn’t like to ask for help.

It all came back to that common cause of distorted thinking: Perfectionism.

Having to re-evaluate my life due to my ill health (mental & physical) has made me come to the somewhat painful realisation that I am not what I do. Therefore, my job can be just a job and I can be good at it without it being the major focus of my life. It doesn’t matter if the house is a mess, or what wage I’m earning (as long as we have enough to live on) or whether I’m the perfect friend. I can be me, with all my imperfections and the people who matter will still love me.

Now I just have to figure out how to be just me!

 

 

Breaking the Silence

I have been registered as a writer here for some time, but have been reading everyone else’s contributions and thinking “there’s no way I can write as well as that!” Regardless of my feelings of inadequacy, I feel the need to at least introduce myself and do what I promised the group and myself I was going to do, by beginning to contribute properly to the blog.

I have been affected by depression for many years. My mother (a nurse in psychiatry, with depression herself) can pinpoint times when I was only five or six years old where I showed signs of depressive illness. It really started manifesting when I was 15-16 and I went through several years of bouncing from one doctor to another, trying drug after drug after drug, and all the time spinning downwards with self-destructive behaviour; self-harm, drug and alcohol abuse and four separate suicide attempts, all to try to quiet the voices in my head and end the feelings of despair. When I became pregnant with my son I stopped the alcohol and drugs, was put on paroxetine and adopted a healthier, more ’stable’ lifestyle. It was around this time I started to be taken seriously by doctors. I am almost certain that had I not become pregnant, I would not be here today. My son indirectly saved my life. It felt like because I was pregnant, the medical professionals saw me as an adult all of a sudden, and they needed to ‘make me better’ so that I would be an adequate parent. I was put on the paroxetine because my (male) doctor didn’t know what else to try. There was nothing else to try. The benefits to my mental heath outweighed the risks to the foetus who later became my son, so my pregnancy was also my first experience of the dullness of a drugged mind.

Paroxetine is numbing and addictive. It prevents me from reaching the very lowest of my lows, but in kind it also prevents me from reaching the highest of my highs. As a teenager I was a creative soul; an artist, a painter, a poet. Paroxetine strips away my creativity, it leaves me standing cold with a paintbrush in my hand and a furrowed brow as I stare at a blank canvas, wondering what it is I am supposed to do. My anxiety makes me very forgetful, and sometimes I forget to take my tablet. It has a very short ‘half-life’ so the effects of withdrawal are felt rapidly in comparison to other antidepressants - within 24-48 hours. I begin to feel dizzy and unbalanced, like the fluid in my ears has frozen over and I have no idea if I am upside-down or back to front. When that dizziness begins I have to take the tablet within a few hours, because otherwise I will begin shaking and vomiting. When I pop that pill after forgetting, I know I have a two to three hour ‘window’ of creativity. There is just little enough of the drug in my system that colours look right again, and everything is bright and glowing and loud and my brain buzzes with ideas. Then it kicks in again and I go back to normal, struggling to squeeze out even a sentence or brush stroke.

I moved to the house I live in now two years ago, and met Dr R. Dr R is a wonderful woman, a feminist, the kind of doctor who never hurries you and takes her time and doesn’t fob you off with antibiotics or painkillers or long words. Dr R has admitted I am likely to be on paroxetine for life. It took me a while to become comfortable with this, but I accept it now. The withdrawal is physically painful, and the slight dampening of experiences and medical dependency is a small price to pay for the sake of staying stable around my small child. I don’t advocate antidepressant drugs - in fact I advise strongly against them - but I recognise through my own experience and from the experiences of others that for some of us, they allow us to lead fairly normal lives.

Alongside my depression I suffer from anxiety disorder, and this is more detrimental than the depression, which surprises many people. The general public seems to perceive anxiety disorder as ‘worrying’ or occasional panic attacks but it is so much more than that. My own experience of it includes not only anxiety and panic but also obsessive-compulsive disorder, extreme paranoia, delusions and aural hallucinations. I was recently referred to an organisation which deals with psychosis, as the gateway psychiatrist feared that my previous drug abuse had triggered it (a theory that not all psychiatric professionals agree on). I had a session with the psychologists there, who concluded that it was not psychosis but anxiety that caused my symptoms. I was loathe to become dependent on more drugs, and am now in the beginning stages of Cognitive Behavioural Therapy with a wonderful woman who treats me respectfully, with dignity, like a normal person.

Living as a woman with mental health problems is difficult; living as a mother with mental health problems is more difficult still. I remember a few weeks before my son was born, out with his father (now my ex) and his mother (my son’s grandma). She, not being well-endowed in the tact area, expressed her concern about my mental illness, and wondered whether I was worried my son would be taken away once social services caught wind of my inadequacies. I had not even thought of it until then. I laughed it off and assured her that I would be a fit parent, but in the back of my mind I wondered. Did she think I was going to ‘go loopy’ and harm my child? Did she think I would be a bad parent because of my illnesses? After my son was born I was scared to go to my doctor, scared to talk to anyone about my mental problems because I was afraid they would perceive it as a sign of weakness and decide I was unfit to look after my baby.

This of course compounded on top of the anxiety I already suffered, plus the inevitable anxiety of the new mother. My ex, though a sufferer of depression himself, had no sympathy for my feelings and my dependency, anxiety and feelings of inadequacy were the cause of many, many arguments. Then my son had a near-fatal accident at three months; my ex tripped on the stairs and dropped him. He suffered a broken skull and collarbone and massive brain haemorrhaging. We were told he would die, and then after two bouts of brain surgery when it emerged he would live, we were told he would remain blind forever, he would probably never walk or talk, he was lost to us. By some miracle he made a full recovery; the only signs now are the large scar which arcs over his head from the surgery, and hemiparesis in his right arm - stiffness and slight inability of movement. A few months later my ex and I were irreparably damaged and we went our separate ways. Living alone has helped my healing considerably; our relationship was a destructive one and he could not give me the support I so desperately needed.

This has gone in a totally different direction to that which I intended when I first sat down and began typing! It turns out I have a lot to say; about the ways men and women are treated differently by the mental health system, about the ways mentally ill men and women are treated differently by society, about being a mother with mental illness, about the inadequacies of the system (I ‘live’ on Incapacity Benefit, though it’s barely enough to live on), about the history of mental illness and women’s ‘hysteria’, about theories on genetic predisposition towards mental illness. I can’t fit it all in today, but I have at least broken the ice and told you part of ‘my story’, how I came to be in the place I am now, how I came to this blog, what I am all about. I have never written about my mental health issues in detail before. It is cathartic, and it is important that our voices are heard. Now you know me, and I have my topic ideas here to jog my memory, I have a feeling you’ll be hearing a lot more from me. Thank you for giving me your time, and thank you to the creators and other writers of this blog for allowing me to have a voice.

 

University Challenge: Part Six

Suggestion To My University/Universities In General/The Government: Money, please?

 

I have a part-time job, which I was extremely lucky to get. I work in a lovely shop, with good people. It has a fairly relaxed atmosphere and I don’t feel under pressure. In fact, I actually look forward to being there most of the time. I was worried about getting a job while being at uni because I knew that there would be time, and most definitely energy, conflicts. With all my uni work to do, I wasn’t sure whether I’d be able to handle it. I can’t say it’s easy, but generally having this job is a really positive thing and helps with my mood. The thing is, like most students with part-time jobs I’m on minimum wage and am actually told by my uni not to work more than 15 hours a week. I earn roughly £56 a week… and I pay £37 of that to my therapist.

           

As most people who have tried to obtain therapy through the NHS know, it’s basically impossible. All through my teenage years I was kept on waiting lists, offered counselling instead (which I didn’t find helpful at all) and given anti depressants which generally made my mood drop even further. I started seeing private therapists a few years ago, and eventually I found someone I felt could really help me. And she has. In the year I’ve been seeing my current therapist, I’ve seen such significant changes to my mood that I actually feel like I won’t always be depressed. I’ve felt positive about my life. This is a huge thing.

           

When I look back over my bank statements for the past year I cannot believe I’ve survived up until now without getting (even more) massively into debt. I pay for rent, bills, a monthly bus ticket (which I need to get to my therapist’s office), food, books and my weekly appointment out of my student loan and my savings (which are rapidly diminishing). I’ve bought basically nothing for myself in the way of treats (clothes, CDs etc) because I just can’t afford it.

 

 

I applied for Access to Learning (a grant you can apply for if you are struggling financially). This took forever. I had to obtain bank statements from the last three months, my housing contract and a letter from my therapist’s office, photocopy the whole lot, fill in a ten page form and return the whole lot to the welfare office. This is great when you’ve got little to no time/energy/willpower to do anything… */sarcasm* They took weeks to process it and then sent me a letter telling me I hadn’t included a copy of my Disability Assessment Report which they had right there in the welfare office. I finally had to go to the Welfare office to talk to someone who informed me that I needed to provide them with another piece of evidence before they could begin to assess the application. I was exhausted and feeling terrible. At this point, I hadn’t been eating properly because I basically couldn’t afford food. I broke down in tears in front of the man I was talking to. He didn’t really know what to say. I finally obtained the last bit of evidence and after more time had passed received a letter stating I would receive a lump sum of £691.

 

This sounds like a good result (and don’t get me wrong I’m grateful!) but all it meant was that I didn’t go overdrawn. Within two months I was right back where I started. The money had disappeared: rent, bills and weekly therapy took it all.

           

About a month ago I made the decision that I would try and cut my therapist’s appointments from once a week to once a fortnight. I was not happy about this decision at all, but my situation being what it was, I didn’t feel I had a choice. I had survived a couple of breaks like this when my therapist took time off last summer so I thought that maybe it would be all right…

           

In short, it hasn’t been. Turns out there’s a big difference between weekly and fortnightly therapy sessions. In no time at all I’ve felt hopeless, suicidal and like I’m sliding back into my old ways, how I felt before I started therapy… It has made me realise that I need to keep seeing my therapist every week. There’s no other option.

           

But can I afford it? I’m currently trying to apply for my loans for next year, screaming with frustration because it looks like my parents earn just over the amount required for me to get extra financial help… My financial situation doesn’t seem to count for much. Even though I’ll be 21 this year and I have moved out of their house, I am still apparently dependent on my parents. They help out as much as they can, but to be honest I feel awkward asking them. My father is currently in therapy himself and is having to halve his working hours because of his own depression and my mother is retired. I don’t honestly feel like I can just ask for money as and when I need it.

           

My Disability Allowance doesn’t seem to cover things like therapy. It covered my laptop (definite plus) and my fortnightly (or thereabouts) sessions with my mentor but not much else of use. I guess it’s assumed that if you turn your nose up at the NHS, then you have to fork out for private therapy out of your own pocket. Never mind that the NHS have either ignored me or treated me with disbelief regarding my depression for years… My point is, if my Disability Allowance is willing to provide me with things like ‘textbooks specifically to help with my disability’ (which is what? Self-help books?) and ‘taxi journeys’ (presumably when I don’t feel I can get the bus, but to be honest phoning for a taxi is even more difficult, let alone having to ask for a receipt to photocopy and send off for reimbursement), then why isn’t it possible to gain help with my therapy costs?

           

The reason for the title of this entry is that I’m sure this is a government issue rather than one personal to my uni, but it is infuriating nonetheless. Why should I have to put a price on my own sanity? I’m not saying it is my university’s responsibility to pay for my therapy, but if they’re willing to give money towards other issues regarding disabilities, they’d do better not to make it so complicated for me to gain financial help when I need it.

 

Update…

So, I finished my two essays on Monday, and it was tough and pretty horrible, but they’re in now..!

That evening, I may have had a little drink, to celebrate. Now, I’m clumsy and poorly co-ordinated at the best of times - I have dyspraxia, which is immaturity of motor neurone connections in the brain, and means that things like playing tennis, where you have to try and judge distance using something extended from your body at a moving object, is kind of really not possible for me. I have a total phobia of team sports because I know my body will let me, and the whole team, down. It’s like, even if my brain is telling my body what to do, the calculations always seem out.

Anyway, as I was walking out of the lounge to go upstairs to bed on Monday night, my calculations messed up bigstyle, and my right foot slammed into the door jamb. All my toes are fine, except the fourth one, which was throbbing with pain that night, and has since gone green, blue, greeny blue, bluey black, black and now is greyish. It has also gone from the size of a chipolata, back to almost normal, since Monday. Still, as I’ve either broken it (little toes notoriously break easily and are hardly ever even x-rayed by hospitals) or just really badly bruised it, jogging has been out.

Which has really sucked. My best friend, Anthea, has signed up to do the run now, and we’re going to do it, possibly with my Dad (both are fitter than me!), which means I really need to start training. Only if I run on my toe before it’s better, it’s just going to prolong the whole healing process. Sigh. At the moment, I can walk on it almost normally, with a slight limp. But such are things, yunno. A combination of a bit of celebration booze and a few crappy neurones have conspired to dock me a week, but it’s not the end of the world. I’m going to keep telling myself that, anyway…

In the meantime, mentally this week has been really hard, and I wish I could have done some running. I recently saw a report which said that exercise actually cuts your chances of feeling blue or depressed by a third. ONE THIRD. That’s amazing… I’ll keep you guys posted, anyway, and once the swelling’s gone down and the bruise is pretty much gone, I’ll strap the trainers back on again. Hope you’re all doing ok, and *hugs* to anyone who’s not.

 

Anti depressants

In Marytraceys9’s post Anti depressants from hell she wrote about her reactions to and feelings abut prozac, because this is a group blog we as well as our readers are going to have different opinions on things so I wanted to lay out my feelings on anti depressants.

I have real issues with the psycho pharmacology industry not least because it is all about capitalism in that one of its aims is to make money and another of its aims is to shut people up and keep them docile. I don’t think it has the best interest of those with mental health issues at heart. This article about how a drug company knew their product made children suicidal but withheld the information is an example of this.

I do think psychiatric drugs are given out too often when often other support is needed, I hate that psychiatric illnesses are assumed to be genetic and that medication is seen as a cure for bad genes. I find it bizarre that the same medication is expected to work for completely different people.

I hate that we live in a society that damages us so badly that so many of us end up with mental health issues.

Most of all I hate that I take anti depressants, I hate that I have been so wounded by patriarchy that my brain broke and probably isn’t going to mend well enough that I will be able to function without them

There were recently a whole load of articles with headlines along the lines of
prozac, used by 40milion people, does not work
But that headline is misleading if you read the whole article it says

The only exception is in the most severely depressed patients,

The word depression gets blurred at the edges, comes to mean, run down, fed up, bored with life. but for me it still means, too tired to think, to walk across a room, to construct a coherent sentence, to think about food, to wash my hair, with the taste of metal in my mouth and thoughts of sharp edged instruments, where dying is a release and a reprieve. This is what my life is like without prozac.

Although I know this is not a wrong shaped brain thing, it is a wrong shaped world thing and I know my mental health issues are caused by layer upon layer upon layer of abandonment, betrayal, loss, trauma, body shock, packed down and calcified and not enough time not enough space not enough silence not enough love to say it in.. All the damage that could be dealt with has been dealt with but I’m still wounded and always will be

I have tried and tried to live without prozac and I can’t, it is essential to my survival, and I think anything that helps women survive even if it comes with patriarchal capitalist baggage is okay, is even an act of resistance.

And I think we need to be careful, there is a lot of anti psych med feeling in left wing and feminist spaces, but telling people who have been wounded by patriarchy that taking medication to survive that wounding is somehow selling out or supporting the patriarchy can be wounding them again when we should be supporting each other in dealing with our wounds in the way that is best for us,

society already stigmatises us and tells us we are weak and worthless, we don’t need to do it to each other even inadvertently.

I would love to live in a society where anti depressants didn’t exist because they didn’t need to exist, because we didn’t get so wounded and when wounding happened we were able to heal there and then and had the time and resources to support each other through severe emotional crises. But we don’t live in that society yet and to survive the one we do live in I need to take my tablets every day.

 

University Challenge: Part Five B

Suggestion To My Uni: Better organisation in the welfare building Pt 2

 

Update from last entry: I received an answer to the questions I wanted to ask Finance Guy and the answer was basically… ‘I don’t know’. Great… He gave me a bunch of other numbers to call and I was finally told by another Support Lady that I’m not entitled to any money to pay my therapy costs. I’m pretty worried about this because I know I have to keep seeing my therapist every week. My mother has suggested I bypass the welfare office and go direct to the people who assessed me for Disability Support in the first place… Watch this space…

 

I have a learning mentor who I see occasionally and because of poor planning, we rarely have a private room to meet up in. Obviously, the welfare building would be the best place to meet in but the few times she was able to book a room for us to use for an hour at a specific time, the following things happened:

 

-    We arrived to find the room already in use and no alternative available.

-         We began using a room, only to be interrupted by the university chaplain who apparently used it at that exact time each week!

-         We had to resort to using someone’s office because of a double-booking, which meant that another person was in the room working while I was talking about my problems.

 

(There’s really nothing worse than trying to talk about personal problems with someone shuffling papers in the background and whispering, ‘Don’t mind me!’ at various intervals…)

 

One morning we had a room booked for 12 o’clock, only to arrive and be told that the entire building was shut until 2 o’clock due to the Easter holidays! I admit this is a problem that at the moment may not have an answer just because Bath Spa’s campus is not very big, but there’s a definite communication problem here. I was asked recently why I haven’t complained yet but my answer was just that I don’t know who to complain to. The admin is so confusing, I have no idea who sorts anything out. Most of the staff have no idea who each other are…  

 

 

Prepping for Appointments

Shatterbox’s post about welfare services & meetings inspired me to write a bit about the numerous types of meetings I’ve had about my health in the last few years.

I’ve had to have meetings with GPs, Counsellors, CBT Therapists, Occupational Health Services, Line Managers, Section Managers, and Personnel Services. The anticipation of such meetings can make you feel a bit like this:

 

 Here are some of the ways I prepare myself for these meetings:

• Take in Written Notes

This may sound like overkill, but during the worst patches of my depression I would be in tears within seconds of trying to talk about my health, and the written notes allowed me to get my points across even when I was too distressed to speak. They also mean I don’t forget any important points or issues, and can steer discussions back to the areas I want to talk about. My current therapist actually found it pretty useful as it meant she had my case history in my words to refer to.

• Take Someone With You

I found it very helpful to have my boyfriend with me when I went to see my GP about anti-depressants, as I was still coming to terms with being diagnosed with depression, and it meant my boyfriend understood the situation as well. I have found it even more important to have support in my meetings at work with managers, personnel and occupational health. At one point I was having meetings with three senior managers and a rep from personnel at the same time! Four to one in a meeting does NOT help when you’re already feeling very vulnerable. I got my trade union involved and have a union case worker who attends meetings with me, which has been tremendously useful. Just knowing someone else is there with my interests in mind makes it easier to cope. If you’re not in a union then you could ask about taking a colleague with you to meetings instead.

• Talk It Over Beforehand

I also found it good to talk over the issues that were likely to come up beforehand with someone sympathetic. One of my counsellors helped me prepare for meetings about returning to work after a three month absence by discussing what might be a sensible return to work schedule and if there were any duties that would need to be monitored etc. At other times I’ve talked to family, friends and colleagues, depending on who would know the most about the particular situation. It helps me work out what I want to say and what I might want to put in writing.

• Avoid Worst Case Scenario Thinking

This one is very hard to do, especially if you’ve already had a bad experience with the people you’re meeting, and it’s only now that I’m in CBT that I’m beginning to get the hang of it myself. I have a tendency to dwell on whether I’ll get upset, whether they’ll listen to me, whether I’m failing to meet certain standards or expectations… all classic anxious/depressive thought patterns. When I catch myself thinking like this I have to challenge those thoughts - have all my meetings gone badly? No. Have I always got upset? No. Have I usually managed to get my points across due to my preparations? Yes.

Some appointments go well and some don’t, but they’re hoops I need to jump through so I might as well prepare for them.