The unsayable

I’m hoping this post will be therapeutic, cathartic. I won’t be crafting, or even editing, it much because I just need to get it out. I’ve tried to say bits and pieces of this to friends, and to my partner but I am scared to voice the thoughts that appear to be intruding on my consciousness more and more often.

On paper, things are good right now. I’m not really in remission, but I’m better than I have been. Some wonderful things happened to me during 2013, from having the opportunity to influence MPs’ views of the Work Capability Assessment to winning a Mind Media Award; from completing the fourth draft of my book to sending it out to test readers; from speaking about suicide on Sky News to discussing bipolar parenting on BBC Woman’s Hour. There are lots of exciting opportunities on the horizon for this new year off the back of everything I’ve achieved over the past 12 months.

But I don’t feel excited. I don’t feel hopeful. I feel defeated, that I can’t see the point of any of it. In my younger days episodes lasted between six months and a year; I have now been battling on a daily basis with active bipolar symptoms since around June 2010, despite taking lithium and ever increasing doses of antipsychotic. Sometimes I feel that this is OK, that I can make a life for myself despite not being in clear remission. Over the past few weeks I feel differently, that I just cannot go on week after week, month after month, year after a year. As I said in my last post, I am tired.

I remember at some point – I think it was early last year – having an argument with a friend (who will no doubt recognise herself if she reads this) because she felt that she had come to the end of what she could endure and had made what seemed to her as a very logical, dispassionate decision to take her own life. She was not aware of feeling depressed; she felt that she was quite in her right mind. I saw things differently. My view was that she would not experience that train of thought if she were not depressed. I haven’t mentioned my feelings to her, but right now I think exactly the same way. If this is my life, I don’t feel I want it.

I don’t want to have struggle continually toward remission, knowing that even I achieve it, I will relapse again – maybe not for several years if I am incredibly lucky (my last remission was eight years long) – but I will relapse. It will always be a waiting game. I have also written recently about how much I fear growing old with bipolar. This has been exacerbated by hearing how a friend of a friend who was open with her care home about her bipolar has nevertheless been evicted following an acute episode requiring admission.

When my lovely partner talks to me about the future, about what we will do later in life, when the kids are all grown and we are retired, I feel guilty. I love him intensely, but I don’t know if I can manage to stick around until then. Even when we do something that makes me happy – lying, for example, in a spa tepidarium last week, glowing from the steam room and utterly physically relaxed – I feel that this is good as it is going to get now, that everything from here will be downhill. On stronger days I promise myself that I will stick this life out until the children are older. In ten years, they will be adults, and I will not quite yet be an “older person.” On more painful days, I don’t know that I can stick it out. I am back to feeling resentful that those who look ahead to their life with profound physical disability and be seen to be in their right mind in choosing to fly to Dignitas. There is no Dignitas that will take me, despite the evidence about poor life outcomes and expectancy for people with severe mental illness.

I don’t have a plan. Nobody need dispatch emergency services to break down my door. My partner is here with me and I promise that if I begin actively planning, I will tell him.

I just needed to say the unsayable.

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About purplepersuasion

30 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
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36 Responses to The unsayable

  1. shezzle says:

    Your thoughts which I feel you are extremely brave to actually write down, have given me an insight as to how my dad must have felt. I wanted him to stick around and I wish he had. Keep looking at one more day not ten more years. Your achievements speak for themselves. Let it out and say what you need to as I think it needs to be said sometimes,to keep going. Although it also doesn’t matter what anyone else thinks knowing people are listening and actually hearing you is precious. One day at a time…

  2. Di Castle says:

    I do so relate to all you say. I am classed as in remission after years of struggle, never really being fully well. I remember feeling all was downhill but amazingly despite my 68 years I now feel more hopeful. My big breakthrough came in 2013 when sectioned in a manic episode I was taken off antidepressants. I am now just on quetiapine which does suit me. I do hope you lose the feeling you have at the moment about ending it. It is grandchildren who have stopped my ideations. I don’t want them to remember me as the Nanny who did that. It is that simple. Let’s hope I keep this going. Best of luck for 2014.

    • Sadly that doesn’t work for me with my children – I took an overdose when they were preschoolers, another thing to beat myself up about. I am already on high doses of lithium and quetiapine and can’t go onto antidepressants as they can make me high too. So right now I am wondering what my psychiatrist could do anyway even if I got my appointment brought forward. I have been in and out of treatment now for 20 years, consistently in treatment for 11 years and still… this.

  3. all we ever have is now.Look for the tiniest positive in this moment and live from second to second if that’s what it takes.With love,x

  4. Viv Banks says:

    I completely understand how you feel. I’m in a good place to those looking outside in, but not feeling it from the inside out. I get terribly tired being ‘strong’. I too am a bipolar Mum and I’ve started working voluntarily with the NHS for Mental health. All I’ll say is keep going – you might not yet see the ‘light’, but it is there. You’ve pulled through every other time and you will this time too. Lots of love and virtual hugs.

  5. Andy Clark says:

    I discovered last year, after managing for years with feelings of low self-esteem and living what I can only describe as a life semi detached from everyone, that I have clinical depression. When I was younger I knew no better and thought the way that I was feeling was ‘normal’. I was stronger mentally and just drifted through life, experiencing divorce, remarrying and re-integrating into a new family with all that involves, shared weekends with children; the endless trying to keep everyone happy and almost always pleasing one at the expense f the other. Finally, my second wife contracted breast cancer resulting in a mastectomy, five years remission and then finally passing away in 2006. Eight months before, both my late wife and myself witnessed losing her brother to a particularly aggressive form of cancer. Eighteen months later, I lost my mother and three months layer my step father. Naturally I noticed to feelings of loss grief and depression. I received numerous sessions of counselling and medication. Since then I have re-married a wonderful woman and finally life seemed to be moving in a new direction. My wife lectures in a university in Canterbury, Kent and we decided to move here to start aa new life. I managed to get a dream job for me, working for Apple Retail as an Apple Macintosh specialist, after working for all of my life since leaving school in the printing and publishing industries. Part of my new life was going to work for Apple and I managed to be accepted as a mature student at the University of Kent, studying Computuer Science. Apple were brilliant allowing me to work part-time around my studies. Alas, I was not a clever as I thought I was, but thoroughly enjoyed my experience there. Apple offered me a full-time contract. I then started to experience periods of time that I can only describe as flat-lining. I started getting the feelings of semi-detachment and it was as if all the colour in the world would drain away andi was living in a monochrome world. I found talking to people – either at work or with friends and family – a huge effort. I would bury my head in a book, avoid eye contact; sit in corners of coffee shops with my iPad with headphones and make it very obvious that I wanted no social contact. I found that when going to work, my stomach would knot up. The thought of working on the shop floor, interacting with customers horrifying, to the extent that to me the experience just became a jarring cacophony of noise and colour. In the end I broke down. I presented to a GP here in Canterbury who had specialised in psychiatric disorders and after looking back across my medical history, noted the amount of times I had been treated for depression and also noted the medication I was on was enough to fell an elephant. He booked me into see a Consultant Psychiatrist who finally diagnosed me with clinical depression. I received a combination of medication which seemed to lift me to the point that I had a phased return to work. However, it was decided that I could only really cope returning to work part-time working three shifts of eight hours. That was at the beginning of last year. I managed to work this number of hours and re-gig my life outside of work accordingly until October of last year. Once again the silences, withdrawal from friends and family and the feelings of fear and horror of being exposed to environments of a busy store or social occasions returned. I could only manage to live something that resembled a normal life by being left alone, or hooked up to my laptop or iPad in places I felt safe, such as a Costa Coffee or Pret which had wi-fi and where the staff knew me and left me alone. Once again I visited my GP and because of the stress and panic attacks I was experiencing, I was prescribed with diazepam to supplement my medication with the dosage being reduced and once again, I tried to return to work. Once again, I fell apart for no apparent reason. Once again, back to the doctor, recite the experience and now a consultant psychiatrists referral, which is what I am waiting for. I can now only cope by leading a reduced life which involves getting up, walking with my wife to the university and then perhaps losing myself in the tranquillity of Canterbury Cathedral and its precincts and then back into Costa Coffee and trying to lose myself into the world of the internet. Itak online courses and have found solace by expressing my thoughts and feelings by writing. I now feel that my life is slowly being reduced in that I cannot now even face the possibility of working part-time in the Apple Store because of the fear and stress of interacting with customers and work colleagues. When I do have to interact with family and friends, I feel like an actor, I wear a mask which I can only compare as to that of myself becoming an actor staging a performance. I might outwardly appear to be normal and making all the appropriate responses, but behind the ‘mask’ I am screaming and am looking for an escape route to withdraw through unnoticed. In the past I was treated for what might be described as ‘event’ driven depression. I now know my depressin is caused by a chemical imbalance in my head. My moods are plummetting for no apparent reason. My conclusion right now is that each time I plummet the process of trying to re-integrate back into the world is getting harder and my exhausting. I really don’t see any end this cycle that I am locked into and how many more times I want to physically and emotionally experience it. My poweres of concentration and ability to retain information has become degraded and I feel that one day just merges into another. I feel like a plane that just is just being held in a holding pattern. I really don’t know if I can cope indefinitely with this cycle of a reduced life and then the plummetting of my moods and then weeks of waiting to see if the medication will hold my head above water until the next time I run out of energy and start to sink. Wlell that is my experience with Clinical Depression. My fear is that for now apparent reason, I just cannot cope with life, people and just want to disappear.

    • I too have been unwell since I was child…I find when I am in remission or hypomanic that I look at my life and see a lot of good things/times in my past, with the episodes spaced out like beads on a string. As soon as become depressed, it’s like someone pushes all the beads together, so they are all touching and all I can see is the bead and the spaces disappear from view. I guess that’s where I am right now. C x

  6. You are not alone in this. I have been in this state for quite a while and my doctor whom i no longer see tells me that is my “normal”. hmph. All you need to know is you mean more to people, even strangers like me, than you could probably know. The feeling of just being done or coming to an end point is a dangerous time and frankly awful. Thank you for being so open to write this stuff down and to others who may read. I can only hope and pray you find a reason every day to keep on being your truly amazing self. <3 stay safe darlin' and keep fighting that mood monster i know all too well. <3

  7. phylor says:

    Saying what’s going on in your mind “out loud” in a blog is both brave and helpful for anyone else feeling as you do. Your achievements of 2013 are impressive, but I understand that such things aren’t always enough to make the present and the future look hopeful.
    In my darker moments, I think about putting one of two plans I have in place to put an end to things. On days when the mindscape isn’t as bleak, while I don’t think about the future (it scares me too much), I also try not to dwell on the past. Somewhere in between is a space I can occupy for awhile where those plans, are in the background, not the foreground of my thoughts, my life, my perceptions.
    I don’t know if I hope you can cope sounds trite; I do hope that saying the unsayable has eased your pain and fear at least a little bit.

  8. Jane says:

    Nothing anyone says is going to change the way you feel at the moment but there are plenty of people out there who are needing your voice to help change things for the future. For example…..the ability to change perceptions in care homes is in our hands……in yours. Change it -if only for selfish reasons! We can see what happens, many people only find out when they are resident there. Things are beginning to change in the understanding of mental health but it is people like you who can verbalise the realities who will drive it forward the quickest . Be kind to yourself. One day at a time.

  9. Patrick O says:

    Well done. This is extremely brave and moving. As Churchill said – “when you find yourself in hell, keep going”. Thanks for sharing this. We are with you!

  10. Elizabeth Cave says:

    Dear Charlotte

    Have I told you how much I value your blog? I hope I have, and I’m saying it again now.

    Of course you write very well – you know that. And last year’s work and commendations tell you how good you are. But they are only the visible part of your life. I’m truly sorry the rest is so hard now.

    May I tell you about my daughter? She was being weaned off her antipsychotic medication and doing fine – even starting to think of herself as no longer having Borderline PD. Then in September she was driven into and has been off the work she loves with whiplash. At last she got a scan and now the physio and a cranial osteopath are addressing her neck and shoulder problems so she can begin to drive her replacement car. Her plan is/was to go back to work by the end of this month despite persistent agoraphobia. And now her voices have come back big time. I feel hopeless and exasperated and angry. Goodness knows how she is feeling – she returns my texts and phone calls only enough for me to know she is not in hospital or dead from an overdose.

    I find your honest blog strengthening and life giving for me. Thank you.

    With love

    Elizabeth

    • I hit “publish” on my post last night knowing my dad would probably see it as he subscribes to my blog, and finally managed to get to sleep with an additional layer of guilt about what he might think/feel reading the post adding to all the other reasons I was feeling like an awful person. But he emailed me to say that he thinks I am an inspiration to him for my insight and honesty. And yet I know I pull away from him and friends and other relatives when I am feeling bad…it’s too painful to get into what is happening to me on the phone or in person, so all I can manage is texts and emails. Don’t know if that helps at all. I always really appreciate your comments xxx

  11. Thank you for writing this, As I read it I cried. I am not alone in feeling like this. I have come so close to ending it many times and cannot see a future for me.

    • Logically I know that my depressions don’t even last very long these days – this episode they seem to go on for only a few weeks, before I flip back to battling hypomania again – but after just a few days I feel so “way down in the hole” that I cannot see a future. Just feel very…worn out. Sorry to hear that you do, too xx

  12. Ken says:

    Charlotte your words a like a beacon to me – I felt so much identification with your feelings it moved me. You are brave strong and a fine example, you mean so much to so many of us. People say things like that to me and it doesn’t even go in one ear. In this current downward trend of this horrendous illness I am questioning my right to carry on. I have just started Lithium (again) I dont want it it makes me sick, I feel fat, and I am low. I am sat with my lightbox wondering what the hell. I am just braindumping but thanks for being there with well written prose and place to post and a guide. You are a light. Thank you

    • Sorry to hear you find the lithium unpleasant, I know many people feel the same way and that I am extremely lucky that (so long as I take it with food) I have no side effects at all from the lithium. The antipsychotics, though….eek :-/

  13. Helen Pengelly says:

    I have been in remission for at least 2 years now, since I was put on sodium valproate- I feel it has almost cured me!!!!! (Also on duloxetine, but that has been for much longer.) I know how you feel from when I felt the same but how awful to have it for so many years and with children too. It sounds as though the lithium is no use to you but what else have you tried? ( I am an ex pharmacist too so I may be able to understand better than others)
    Lots of love, Helen

    • I have tried almost everything. Old and new gen antipsychotics. SSRIs. Venlefaxine. MOAIs. Tricyclics. Valproate (to which I had an appalling, 1:100,000 adverse reaction). PRN benzos and hypnotics. Antidepressants now make me manic so I can’t take them anymore, and my highs these days outnumber my lows by 10:1 anyway. I don’t just take lithium, I am also on 700mg quetiapine daily. And I don’t agree that the lithium is no use – as I state in the post I am much better than I was without the drugs.C x

  14. Jane says:

    My mum had to come off the lithium when she was 90 as her kidneys were failing. She is now only on Venlefaxine as quetiapine didn’t help just made her tired. She is now 93 and suffering with the demands of her age as well as her bi- polar and is in a care home where they just ignore her because of her misunderstood behaviour. They keep telling her to “cheer up”.It doesn’t get much worse than this.

    • Exactly what I worry about. I also worry about getting some physics ailment unrelated to the meds, but which make the BP meds impossible to take because they interact with or are hampered by new meds. For example, God forbid but if I should ever have to have chemo, well I am one of those people who pukes at the drop of a hat (new drug, pregnancy, travel, etc) and there would be no way I could carry on taking things like lithium. Bah! x

  15. I’m so glad you had the strength to write all this down and I hope it helped even a little – I know it helps me. I don’t know exactly how you feel but I know how I feel when things get that bad for me, and I know how much it hurts. I’m here. I don’t know you and well I’m probably far away and of no use at all really – but I’m reading and I care and I’m here.

  16. I empathize with almost every word. You are definitely not alone. I’m not going to say “stay positive” or “it’ll get better” but I do hope it will. I hope each year will get a bit better (for us both) and that any relapses will be stumbles and not crashes. And that we will live to see our kids grown. I hope you have some distractions you can enjoy in the meantime if nothing else. Creativity and photography help me through. You’re of course welcome to contribute to our mental health photo gallery if you ever take pictures too. Sending warm wishes.

  17. i hope that saying it, putting it down, is a relief, even if only a little. I can completely understand what you are saying and just wish it weren’t so — for any of us with these stupid illnesses. I absolutely trust that you will tell your partner if you move from ideation to a plan. remember — this is definitely one place that no-one will find these feelings odd. it is truly, truly exhausting to know that remission is neither a given nor a permanent state. I’m far, far away across the sea and really haven’t posted much, but I am reading and I am HERE. big hugs. now go snuggle under something warm with a panad! xxx

  18. aett1974 says:

    It is the unsayable but I appreciate your honest post about it. Sometimes it seems so logical and it is a comfort to know I am not the only one who has sat in the the dark thinking this way. For now I’m good though and I hope that this wave will not last to long for you… it’s just a wave and despite my dark thoughts I have yet to be swept away. Do you best to keep swimming the tide with us? I have learnt so much from your blog, it gave me the confidence to start my own even if my posts are random. Thankyou.

  19. I have no concept of a future, never mind the future. There are dates in the diary but even those do not seem real. I live in and try to focus on the now, one day at a time. I do not talk about this either and often wonder how and why I am still here. I am surprised by how fast time flies by. But I am here and that is the now. It is enough. :)

  20. Danni says:

    *Squishes*

    You are very brave to write this. I can remember feeling the same way for years, and the tiredness was sometimes the worst part. I hope writing about it helped a little- I know it used to help me.

    I wish there were some magic cure that could make everything better. Unfortunately there isn’t, and we’re probably quite some way off it. I don’t know why I recovered and yet so many other people don’t- I didn’t do anything special, just had the right combination of meds for me, some positive changes in my life (many of which were beyond my control) and a lot of luck. It took 12 years to get there though.

    I’m now severely physically disabled by a chronic illness. I rely on my husband and carers for pretty much everything, and I’m too unwell to even get into a wheelchair. I experience a lot of painful and scary symptoms. Yet living with this is a lot easier than living with depression ever was, and if forced to choose between the two I’d stick with it. Getting depressed again is my worst nightmare. I feel for you and wish I could help.

  21. spicejac says:

    Thank you for writing this, it’s so important that you write about what you are experiencing as it opens up the conversation that needs to be held with those we love. By sharing we can open up from the loneliness of pain and suffering, and lighten our loads just a little. Take care

  22. doublenutty says:

    A very moving post. I know just how you feel and was just trying to articulate it for myself when I read your post. You have captured my own feelings perfectly. Thank you.

  23. Natalie says:

    Hi Charlotte, I lost my beautiful, articulate, creative, sensitive, and loving son in Aug 2013, he was 27. I could at some level relate to, and recognize, those feelings of not seeing myself completing this life cycle so much expected by society, even though I don’t have bi polar. Maybe we all have them, (those feelings) even if only at some minute level? Strangely after reading your words I feel a sense of peace for him. He always seemed to get what he wanted in the end.
    I just couldn’t hold back the tide. It was like heading for a brick wall in a crash and bracing for the impact. Was I the hostage taker? Trying to keep him alive in this life by holding him against his will? It was my selfish expectations and hopes for him to live a normal life.
    As a mother I would rather take and carry his pain than to see him in pain. Now I have my wish. Natalie

  24. Jenny Mosse says:

    I had a tattoo done (yes, during a sparkly moment) on my arm with my daughters’ names and “Step by Step, Day by Day”. It does give me a ping of a brain reminder of why I keep going but doesn’t remove the darkness. A friend sent me the link to your blog and I am so glad to find it. I am in Australia and haven’t found much in the way of support groups, it’s good to know I am not the only one.

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