A letter to my Dad who doesn’t understand

What do you want to know? I genuinely want to know. I can tell you things but I do and then you worry. When you worry I then worry about you and if you’re ok. There are many things you don’t know because I don’t feel the need to share every part of my life and I need you to understand that that is my right, normal and not me being mysterious or difficult. When you know I am strugging you want to see me when sometimes, in fact often, I need solitude. I don’t need you to understand it but I do ask that you respect it. You also want to tell me what I should be doing. Can you understand that because I have been living with this for 20 years I might have some ideas about what helps? I have many many coping strategies but there will be times when the only thing I can do is to ride it out.

If I take time off work it is not a rash decision and it’s rarely one I make on my own. It’s not because of a few bad days. It’s because I’ve endured months of almost unbearable pain and because my mind and body can take no more. You may ask why I didn’t ask for help sooner. Almost always I have. I will have spoken to whoever my care coordinator is and we will have been working hard to keep me well and in work wherever possible. We will have considered my medication, possibly arranging an appointment to see one of the Consultants and considered an intervention by the crisis team. I don’t enjoy time off sick, it’s not relaxing, in fact it increases my anxiety that I am worthless as an employee so someone questioning if I should be off or saying that I should be in work does not help. When I am in work, you criticise me for working too many hours especially when I am not being paid for it. But when I am ill, I often spend the hours I am in the office staring at my screen, crying or having panic attacks so I make it up at home or in the office when everyone has left.

You may see days, weeks or months of what you think is inaction but just because you’re not seeing it doesn’t mean that I’m not working hard to regain some equilibrium. I may spend consecutive days at home, probably in your mind binge watching TV. That may be true at times but the reality is that I may not have woken until mid-afternoon because I only got to sleep at 7am. Why? Because when I went to bed I didn’t want to wake up the following day so I stayed awake. You can’t wake up unless you sleep so I don’t sleep. Or it may be that just the thought of going outside causes a panic attack. Or perhaps it may just be that I’m exhausted – mentally exhausted – and that anything other than lying on my bed is beyond me. At times I am so suicidal that any kind of action is beyond me and I’m taking the safest option. You may wonder how I can go out drinking with my friends when I am as ill as I say I am. Mostly because alcohol quietens the voice in my head for just a while and because I made a promise to myself that I won’t self destruct if I’ve had a drink. You probably don’t know these things but why would you? I don’t feel the need to go into detail about my symptoms and coping mechanisms but I would like you to look at my life and my illness from the viewpoint of “she’s doing all she can”. I know that things I do don’t always make sense or seem rational to others but they don’t need to. They only need to make sense to me.

I may not always know what helps but I am pretty good at knowing what doesn’t. I know that re-arranging my bookshelves helps – organising something does as does hours of playing sudoku on my phone. Getting the boiler serviced is important, believe me, I know that. Just as I know I really should look for new utility and broadband providers, however doing these things will make no positive impact on my mood – they will not take away the urgent desire to die.

Things will improve and change. I will reach the day when I submit meter readings again and put away the clothes dryer that has been in the same place for weeks and maybe even research home insurance but not right now.

I live my life at a different level to yours. Not better or worse, just different. And that’s ok. My life is unfortunately about survival most of the time and I have a pretty good track record at that. So celebrate that fact. I’ve had to adjust my expectations, have you?

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Why won’t I accept help

I have been in therapy for a long time and under the care of CMHT for even longer so why am I no better? Why am I still desperately suicidal? I still self harm and I still battle depression on a daily basis. I have tried more medications than I can count and for periods of time some have worked, others not so much. I have had times when I have not needed CMHT or therapy but not many. We have dealt with and resolved a lot of things in therapy but even though I trust him implicitly I still won’t let him loose on the issues that cause me the most pain and distress despite agreeing to at times. The reality is that when it comes down to it, I back away. I still think that he isn’t seeing the real me and that if I tell/show him who I really am, he will be as disgusted as I am, that he will see me for the monster that I am. In the many years I have known him, I don’t think I have ever looked at him in a session because I fear he will see the real me. Yet I continue to see him.

I see my care coordinator often and I try to be honest with her about how I am feeling but for many months I hid the fact that I was suicidal and that I had a plan in place. When she gets worried and voices that concern, all I am thinking about is how I can talk my way out of a hospital admission if it comes to that.

I am lucky to have a fantastic team around me and I am so so grateful for that but I often feel that I should walk away if I won’t let them help me.

Why won’t I let anyone help me? Mostly I believe that I am broken and unfixable. Last week I sat in front of my therapist sobbing, telling him that I couldn’t tell him what was wrong, partly because I was afraid of the consequences but mostly because I don’t think he can help me anymore. He can’t make me want to live, that has to come from me. But what if the desire to die never leaves me? I don’t remember a day when I wouldn’t have chosen life over death. Unfortunately for me last week, he was concerned enough to call my care coordinator so I had to allow her to put home treatment/crisis team in place – it was clear it was the only option. They have been told that I won’t call if I’m desperate and that if they call, I will say that I’m ok, so visits are needed. I am trying to be honest but while I am talking my mind says “careful, don’t say too much or you’ll end up in hospital” and I am working out if I have time between visits to put my plan into action. So will I tell them if I am planning my death? The answer is probably not.

The professionals can only help me if I allow them to, if I am honest. I know that. I have been in the system long enough to understand how it works and I know when I need to let my care coordinator put safety plans in place. I know that when she starts talking about hospital, the best thing to do is to agree to a plan that may include taking time off work and seeing the crisis team so that I can stay in the community. But perhaps things would be easier without this knowledge. 15 years ago it never occurred to me to be anything than honest with the professionals but my admissions to the local ward convinced me to say never again. There was nothing approaching therapeutic about it, all it achieved was containment until I could convince them I was no longer a risk to myself. The ward is now closed but my belief that hospital can’t help remains and that leaves me with precious few options.

If I cannot help myself, who can?

Relapse

I am notoriously bad at recognising depression so I thought I’d write this as a reminder.

Signs I am heading back to depression:

  1. I stop straightening my hair, wearing make up & jewellery
  2. I don’t bother to dye my hair
  3. I actually don’t want to self harm, I want to die
  4. My living environment becomes disgusting – clothes everywhere, unwashed dishes, stuff left on the floor where I dropped it, unopened post, bathroom & kitchen left dirty, bin overflowing
  5. I sleep through 5 alarms & am regularly late for work
  6. I can’t find things I had 30 seconds ago
  7. I wear pretty much the same thing everyday
  8. At work I spend my time staring at my screen or playing sudoku on my phone

 

Physical Consequences of Mental Illness

I don’t take care of myself, that’s not news. It’s been that way for a long time although I am aware it has gotten a lot worse over the last couple of years. Not caring about yourself and self harm pretty much go hand in hand so I guess you could say that I haven’t taken care of myself for 18 years. What’s happening now is something different though. When I started self harming, I wasn’t thinking about death, I was thinking about coping. That changed and it became about pure destruction rather than a way of dealing with things. I used to eat healthily, actually cooking rather then putting a ready meal in the oven, I thought about my alcohol intake, got some exercise, even venturing to the local pool for a swim at times and I saw my GP when I needed to. I used to think about the little things – shaving my legs, exfoliating, moisturising, painting my nails – not anymore. It’s not even about ignoring these things, I go out of my way to destroy my body in any way I can. I survive mostly on junk food, shovelling food into my mouth like there’s no tomorrow. I ignore physical symptoms because I am hoping whatever it may be will just kill me. I don’t take my anticoagulants, praying instead that a blood clot will finish me off especially with the elevated risk of it occurring even if I do take the tablets. Despite being fully aware that I need a stronger prescription for my contact lenses, I continue to wear the ones I have because doing anything else comes far too close to taking care of myself. I ignore letters from the GP saying I need to have a blood test because of the quetapine I take. I’ve ignored so many letters about getting a smear test that they recently wrote to me saying that I could out (or something along those lines).

So why am I writing this now? Because today as I was eating my lunch, I lost part of a tooth. Most people would’ve called the dentist. I’m not one of those people. The last dentist appointment I had was in January, made by my mother who also drove me there so I couldn’t back out. The dentist (who is absolutely lovely and who I’ve known since I was a child) wanted to do some treatment and put in a filling but I couldn’t bear the thought of it. Not just because I’ve been terrified of dentists since the experience of braces and orthodontists during my teenage years but because, again, it is a positive thing, something that re-inforces the idea that I am actually worth looking after. So I lied, I explained I take blood thinners and that my INR, (the level that measures the thickness of your blood) was too high, leading to the risk of excessive bleeding. She did what I knew she would and explained she couldn’t treat me that day. So I left, promising her I’d come back when my INR was stable again. That was 8 months ago.

What do I do know?

Not self harming is killing me

TW

6 months ago I had options; I had 3 ways of self harming and using one, two or mostly, all three of them was allowing me to function. 5 months ago two of those options were taken from me. It had been coming for a while but I still wasn’t prepared and when it happened it felt like my whole world had been turned upside down. I understand why the decisions were made, if I could have kept my self harm to cutting then the professionals would have been concerned but ultimately left me to it. I’ve been doing it for 18 years and I’ve always kept it under control. However when you start to self harm in ways that will ultimately kill you, they start to worry, especially when you are running a massive risk of internal bleeding. My GP made a decision to take me off the blood thinners I’d been taking for 4 years as apparently taking double or triple dose is not deemed a “good” thing. That was a massive blow as not only was the risk of internal bleeding eliminated, I now felt unable to turn to cutting as a form of self harm. Yes I’ve been cutting for 18 years but when I discovered the damage I could do if I cut while taking far too many antioagulants there was no turning back. Cutting now just makes me angry as I’m unable to cause as much bleeding as much as I know I can.

Since then I have been switched to a newer anticoagulant which does the same thing as the old one but does not require regular monitoring and isn’t affected by certain foods and drinks. Because of my habit of abusing said drugs my GP decided I would have to pick this new medication up every day and take the tablet in front of the Pharmacist. This was to be reviewed but seeing as at the momen I generally only end up taking it 3 times a week, she is not inclined to let me take it home. We are all certain that no matter when I am allowed the privilege of having my medication at home I will go back to abusing it, it’s unlikely the situation will change anytime soon.

I am now in a position where I feel like I only have one form of self harm to use but I’m actually not really even doing that. What has happened is that I am currently more suicidal than I have been for 5 years. Since February my mood has deteriorated as I have had no way of dealing with the need to hurt/punish myself. Because of this I am being forced to manage things I have spent 18 years running away from. This is having a negative impact on my work, friendships and family relationships. It’s also led to a return of bingeing as a form of punishment which doesn’t help anything at all.

I do not blame the professionals, not even for one second. They did the only thing they could do. I was puting my GP in a horrendous situation as if she continued to write prescriptions she was leaving me in a position where I could have a catastrophic bleed. If she stopped issuing the prescription she was leaving me open to a catastrophic clot. While I place the blame firmly on me and me only, the lack of self harm is killing me. It was letting me function, I was managing, I was coping. Now I am as far from that as it’s possible to be and it will kill me.

The 2 Me’s

Monday to Friday, 9-5, the competent, confident, sociable me takes centre stage. Each day I get up, shower, straighten my hair, dress smartly, put my makeup on and accessorise with matching scarves and jewellery. I commute to work, complaining like everyone else about how bad public transport is. I get to the office and engage with my colleagues, discussing the news and last nights TV among other things. As the day goes on I focus on my work, joining in with conversations (even initiating many of them), laughing at stupid jokes and moaning about the staggering incompetence and stupidity of many people we come across during the day. If it’s a Monday then I finish at 3pm and will generally head to the pub where my boss will join me come 4pm. On Tuesdays I go to see my therapist then usually meet a friend for a drink and a catch-up. The rest of the week I work full days but will probably be out socialising at least one of those three days.

However, once I get home and on the weekends, a different part of me takes over. A part that only wants destruction, a part that is barely functioning. I am no longer able to hide from the world by burying myself in work or by drinking to make the noise in my head a little quieter. Suddenly I am bombarded by thoughts of all the things I did wrong that day. Despite constant positive feedback from my boss, I analyse the day, obsessing over what  I didn’t manage to do as well as telling myself that work I did complete was substandard. Appearing now is the me sobbing like a baby. The me sat in front of my bedroom mirror writing all of the negative things about me on it with eyeliner as I cut myself or take too many tablets. The me that wants to die so badly that I’m composing a text/email to my boss to that say that I’m sick and won’t be in the next day, buying me time to execute my plan. I let my parents know I’m busy for the next few days so they don’t worry when I don’t call. I sit on the sofa with the box full of excess medication praying for the strength to take them all. I spend time googling the drugs, trying to work out if what I have is enough to kill me. Yet each night I put the box away and go to bed, feeling sick at having to face a new day and hating myself for being too weak to put an end to this pain.

And so it goes on, the next day I start all over again, playing the part of two completely different people.

It’s not that the negative stuff isn’t there during the day, when the competent me is in charge. It absolutely is and it leads to self harm and many days of achieving very little. But, I can manage hours as that competent person, I just can’t sustain it.

 

Self harm/Self care/Self Neglect

Taking care of myself is not something that comes naturally (or at all) to me. When I was a teenager I discovered that abusing my body let me feel in control of my emotions and manage my distress. It made sense because it made me feel better (no matter that it didn’t last long). Over the years I have learnt other ways of coping and can/do choose to use those methods if I want to. I can manage my distress in more traditional and non-destructive ways. Unfortunately somewhere along the way my belief that I am a terrible, evil, worthless person developed and has just grown stronger as time goes by. So how do I deal with this? Self harm and neglect. Again, it makes sense, why take care of something worthless, and that’s what I am, a thing, not a person. I have spent years cutting myself, covering my body in ugly scars that serve to remind me how disgusting I am. 12 years ago I started taking small overdoses of paracetamol on a regular basis – in the beginning I often made myself quite unwell but never seeked treatment and then I learnt ways of avoiding the horrendous physical reactions to paracetamol overdoses. I still do this but these days I’d have to take a significant amount to feel more than just a little under the weather although I am well aware of the potential consequences and that I am most likely damaging my body in ways I cannot see. That’s part of the draw – I know I am causing damage but no one can see it, not even me. Physical illness 4 years ago forced me in to a position where I will have to take blood thinners for life. It wasn’t long before I discovered I could use this as a way to hurt myself. All of this leaves me in a position where I spend most of my days feeling ill. I often taste metal for no good reason (not a side effect of any meds I am on), the paracetamol causes almost constant nausea and I am pretty sure I am physcially addicted to the codeine contained in the painkillers I choose to abuse.

Added to this is the fact that I do very little to take care of myself. A side effect of current medications and those of the last 18 years is increased appetite and weight gain. This makes me feel even worse about myself so I binge and make things worse. I am disgusting so why not prove it, why not show everyone? When I get ill I start to lack energy and what energy I do have goes on basic functioning. The antidepressants and antipsychotics I take have a sedative effect as does the codeine and it becomes hard to remain active. I spent 16 or so years refusing to visit the dentist, partly thanks to a sadistic orthodontist but mostly because why would I? There are physical issues I should probably see my GP about but I don’t, hoping that the pains/aches/illnesses I experience daily will just slowly kill me. I have barely bought any clothes over the last 5 years because it involves seeing my reflection which means that most of my clothes have holes or don’t fit. I don’t take care of my living environment either. As an example, I stripped my bed on Sunday but have not yet put clean sheets. I don’t clean and my stuff is strewn around my flat just waiting for me to have a burst of energy. I rarely cook these days and when I do feel positive enough to go to the supermarket and fill my fridge with something other than processed and junk food, it remains there for weeks until I find the energy to throw it all away.

I would like to get through a day without feeling like my body is giving up on me but at the same time I don’t know how to do anything other than to destroy myself. Maybe one day I will discover that I am worth taking care of but not today.