I don’t do crossroads, I do corners

After what seems to be years, but in reality is just a few months, I finally have finally seemed to turn a corner. Getting to crossroads tends to suggest two options from which to choose but I’ve never been in that position, I’ve always been on the right side of the path but sometimes I turn round the wrong corners.

Recent crises have left me feeling fragmented and helpless and I don’t cope particularly well with either state. I have had unfailing support from a small circle of friends and family who have helped me whether they knew it or not.

I knew I’d turned a corner when I did some ironing today and that I knew when to stop. Too many times I tell myself that one more item won’t matter but it usually does mean the difference between tears or tantrums and sometimes both.

I got the hoover out and did the living room and the kitchen and that felt as though I’d regained a little more control over my life. I don’t like doing housework but when it’s as tidy as it can be it’s a long way of the chaos that it can be in a matter of days.

I’ve not done too well on the eating side of things but I did at least stop for a cheese sandwich at lunchtime and there will be fish finger, chips and peas for tea. Not brilliant but not disastrous either.

I’ve just realised that from starting the above paragraph and finishing it I came to the conclusion that I’ve done quite well. It becomes more obvious how well I have managed when I see things on a page. It’s very important for me to write things down. When I post my blog it doesn’t matter if it never gets read by anyone else (though people do read it and identify with it) but I write regardless because it clears my head and carves a path through the debris and detritus that’s hanging around my brain.

The most important thing that I’ve learned in these weeks and months is that acceptance isn’t a final stage. I accept that I have an illness that makes a huge impact on my life and that impact could, and probably will, make me become more severely affected. Bipolar disorder doesn’t go away and unless there is a miracle cure then how I am now is the way I will always  be and I have to live with.

I will never stop railing against it. I will never stop exhausting myself or burning myself into the ground just by doing the normal kind of things that normal kind of people do. I will always do the outrageous thing than the safe thing. I will always strive to get to a stage where I cope with this bloody awful illness instead of just managing it hour by bloody hour.

I’m not any of the descriptions that people trot out in memes. I haven’t got a mental health problem because I’m a strong person who’s been fighting too long, I’m a strong person with a mental health problem and I’m living with it not fighting it. There are days when I’m fed up and I can’t imagine living this life a moment longer but I am the semicolon and not the full stop; I know that there is a life for me if I just pause. It is not the life that 14 year old me imagined for herself but it hasn’t been a bad life, it’s been an interesting life. There’s been lots of hilarious moments, too many stupid ones and so many outrageous ones that I’ve lost count.

That life will continue. I am 59 this year and I have been living with bipolar since early adolescence – onset at 13 or 14, diagnosable at 16 or 17 but not diagnosed until I was until I was 36. I am, at times, as old as 27 in my head but I’m usually a reckless 18.

I have many talents though I would dearly love to improve both my writing and my photography because even though I’ve had pieces of each published professionally I don’t think that you ever get as good as you can be. I will leave you with the quote below which I believe the coach of the England squad said in a Rugby World Cup about how the team strived to win.

The greatest sin you can ever commit is to grow old without knowing just how good you could have been.

I’m going to talk, are you listening?

A few weeks ago I got a letter through the door telling me I was due for an ESA reassessment. Part of me dreaded looking at the form and so I didn’t for a few days and allowed myself to feel panicked and because I allowed that feeling it passed. When I looked at it I was reminded that it was actually far simpler form than I remembered it to be. Don’t get me wrong, it’s a difficult form to fill in because you have to spill your guts out on to the pages but the form, to me at least, is simple. Or maybe that’s because way back in the day when I worked for DHSS you needed a degree just to open the envelope let alone fill it in.

I talked to my doctor about the supporting letter that I’d need and gave him photocopies of the pages of the form that I’d filled in. (I’ve now posted it and as I write this I’m panicking in case I’ve missed something important out – like my name and address and yes, I have just checked my copy to make sure that I have put it on there.) I digress.

I read the supporting letter that my GP wrote for me this morning before I had it copied and it had me in tears from the the first few lines. I choose the words I used to describe the effects that bipolar disorder has upon me and my life but I cannot choose the words that my GP chooses and it’s those that bring the stark reality of my illness and life into far too a sharp focus.

“She is significantly disabled by her condition.”

“When I first knew her she was particularly unstable, and I had real worries that she would commit suicide…with extremely vivid suicidal fantasies and a degree of derealisation and impulsivity.”

“She experiences very marked irritability that she manages by avoiding interaction with others unless it is very carefully planned and time limited.”

“She is certainly very intelligent, resourceful and insightful however, she copes only by carefully controlling the scope of her life and by reducing as far as she can activities that could result in loss of choice or control.”

“I continue to see her once or twice a month as she always teeters on the edge of instability. Her regular contact with the surgery has been helpful but it does also demonstrate how fragile she is.”

“She only just manages to cope with the necessary activities of daily living.”

“I would strongly recommend that she is not pushed in the direction of work, and that she is allowed to maintain the freedom necessary to make the hour by hour choices that enable her to cope with what is a very unpredictable and exhausting illness.”

Forms are simple, letters are easy to write but coping with the way it spells out your painful life letter isn’t.

So let’s stop with the Time to Change, Time to Talk, Heads Together fuckwitted mentality and really learn what life is really like for those who cope with the kind of shit that I live with every single bloody day.  Instead of harping on about how you’d like to help ask somebody to show you what they have put on the form to prove that they’re in the grip of a mental illness that they can’t escape from. Perhaps then things may change, people may really talk and, miracle of miracles, they may even begin to listen.

Waiting for Kafka

I am in constant preparation for the next bout of episodes. I always hope that episodes will be of the long kind as they’re much more gentle on my body and mind (though still incredibly destructive) but those are an increasingly distant memory. Unfortunately for me I rapid cycle and rarely do anything else and, at times, I move up a notch to the ultradian cycling that makes me hover over the act of committing suicide for far too long.

When I look as though I’m coping I’m not I’m making sure I have clean clothes, clean bedding, food in the freezer and a reasonably tidy home because when it all comes crashing down (as inevitably does) I am thrown into the canal of self destruct by the thug that is Bipolar Disorder.

I give away far less online (and in real life come to think about it) about what actually passes through my mind so my decline tends to go unnoticed and the ravages of my darkest and unnaturally brightest hours can pass people by.

I don’t think it helps that I’m naturally up beat and, some of you will find this hard to believe, good natured and even tempered. In periods of illness, particularly in time of crisis and episodes that peak and plunge with speed that light would be envious of I try to keep my cool and say nothing until I suddenly feel my back against a wall. If you’ve missed my invisible signals then the fierceness of my reaction will astound and terrify you.

Today is a bad day. I can’t concentrate on much and writing this is taking up time when I could be doing something else but there are things that I have to get out of my head in order to move forward even a small way. I have to keep on moving, I can’t move backwards, I won’t move backwards though Manic Depression will bully me into a corner and refuse to let me go far too often.

I’m going to have a mug of tea, look at my family tree and reassure myself that my home isn’t in a poor state and that with a little effort everything will be back in the vague place it belongs in before I go to bed tonight.

In the meantime I dwell on things, my mind pulls up obsessive thoughts that I would never dare share with anybody and I wait to be assaulted.

  • – 0 –

The reference to Kafka is, that apart from being my favourite writer, there was a study that concluded that reading his working can help improvements in cognitive functioning when learning new tasks and I am forever learning new ways to cope and/or manage the vile illness that has been forced upon me.

Moving on in more ways than one…

It’s ten days since I had the big chat with my GP and knew that my life had to change. Bipolar Disorder is a hard task master and at times it chains me to the wall and leaves me for dead.

I am still mourning the loss of overnight stays away but that is tempered a little by the knowledge that I can still have days away and see places that I haven’t yet. There’s lots of cemeteries that I have yet to see and many blue plaques to take photographs of.

I have come to realise over the past few weeks that my bouts of psychosis haven’t happened for a long time which means that, even though I feel as though I don’t cope with stress, I’m managing it to the point where the psychosis has subsided for a while.

I talked to a friend yesterday about all that has been going on. We had the conversation with each other that you usually wish you’d had when you’re at a close friend’s funeral. It was good to say the things that matter and I’ve felt calmer since. There are fewer tears today; there may be a flood of them again tomorrow but today I have dry eyes.

I got a standardised email that I felt was rather rude and challenged the person who sent it. She felt it wasn’t rude or patronising and didn’t think a sign off at the bottom was necessary. An angry tweet that I made on the public timeline led her to block me on her personal account and tweet in a way that I was totally responsible for her pettiness and thoughtlessness.

This is a prime example of why I don’t groups – they are basically cliques of people who cling together for whatever reason. They think that they’d be the cool kids if they were back at school but they’re the ones who used to gaze longingly at the cool kids while yearning to be part of the gang.

I can’t do it. I’m me and I’m not interested in become part of a “gang” that sticks together like a tin of cling peaches. Remind me of this next time I think about joining a group, tie me up if necessary but don’t let me do it!

Grieving for the end of an era…

Anyone who has experienced the sudden loss of a person that they love will know how grief feels.

They will know the feeling of waking each day and being in whatever their range of normality is and then sudden remembrance that the person is gone.

That is how I’m waking each day and yet I haven’t lost anybody. My family and friends are all intact and in their rightful places – none of them have been lost to me.

It’s definitely a grieving because I’m doing that thing – a memory comes upon you and you smile just as the gut wrenching sorrow kicks you in the heart and it is your life that seems to have ended.

Except my smiles are not linked to memories and the gut wrenching kicks to my heart appear to be a spiteful and deadly illness attacking me once again.

I can’t eat much – I’m getting hungry but it’s hard to eat and the hunger fades as quickly as it arrives. I drink tea and coffee and have enough food to keep ticking over and my the figures on my scales are lower every time I stand on them. It’s not known as the heartbreak diet for nothing.

I’ve bought a gorgeous new knife and I’ve yet to use it because it would feel like a glorious celebration amidst a deep sorrow. I don’t want it to be the comedian at the funeral.

I am grieving yet no-one is lost to me.

Last month I spent time away then came back to three weeks of chaos while my kitchen was refurbished. My dog was incredibly stressed out and with a toe that seemed certain to be amputated.

I was becoming increasing unstable (damn you bipolar disorder, damn you) and had made the decision to take breaks away from my life but not to travel and have overnight stays for the next few years. It’s a big change but one I need to make. I’m looking forward to the first group of trips I’m doing in May and one of the days I’m visiting at least one place I’ve never visited before. Ogden will still get his boy time with Rob and that keeps him happy.

I am revoking the Lasting Power of Attorney which was put in place seven years ago when I was incapable of looking after myself. Today I’m still not that capable when it comes to coping but I manage my illness just enough to keep me floating.

I have stopped doing the voluntary work that I’ve been doing (writing about charities for a community website) which is both sad and a relief. Writing is hard work and writing about charities is draining.

The grief is about leaving a part of my life behind and starting a different part. I’m moving away from what was once positive and has become less so and adapting and shaping my life into what I need it to be in order to stay sort of well and not very ill.

I am, in a way, grieving for me. I am grieving for my life and have yet to be excited about the new one. I’m going to write in big letters on a whiteboard “YOU WILL BE ABLE TO TAKE MORE PHOTOS AND WRITE MORE DRIVEL.”

Onwards with trepidation, anxiety but hope.