I went for my jag a few days ago. This time my partner came into the room and, making chit chat with my CPN, said; “Graham’s Biceps will be getting bigger with all these injections.”
And my CPN pulled a face and said; “No I am afraid not, over the years they suffer from all the tissue damage. It can be very hard to give an injection after a time.”
And I remembered those times my previous CPN has paused mid injection and apologised and said “I am so sorry; It’s stuck; Are you OK? Does it hurt?”
And has either had to use both hands to get the liquid into me or had to do it again in a different place. And it makes me think of all the mixed up, confused feelings I have about medication.
I have been getting this particular jag for the last ten years against my will. But it is so complicated!
I have a diagnosis of Schizophrenia. I understand why everyone says I do. It makes sense even to me; in some ways. But my heart; that core part of me, doesn’t think this is the case.
I know the reality is that I am possessed by a devil and am bringing about the end of the world; that I poison everyone around me with my evil. That I suck all the joy from the world.
My friends and family say the two weekly injection means that I stay well and have the wonderful life that I do, while I say that it disguises the reality of what I am from me and that if I had any integrity I would find a way to come off of my compulsory treatment order and face that reality.
Facing that means that I would almost certainly die but it seems to me that that is what needs to happen.
My section expires in January. I am terrified that I will come off of it and be able to stop my medication and see what I am for once and for all and lose this life with my partner and her children and Dash the Dog; my work, my friends, the daily walks by the sea with the smell of seaweed and the hint of rain on my face. And also terrified that I will stay on it; remain only half aware of what I am; still having to let people in my house, see the people, take that jag.
It is such a complicated subject! I was reading a superb book (The Heartland) by Nathan Filer recently. I had always known what he was saying in the book but never really connected it with me. The very worst part of my life is this terrible slowness and emptiness, this feeling of being only half alive. The fact that I struggle to start conversations and struggle to maintain them; that I am lost somewhere. Nathan referred to it as a twilight life and I connect so well with that. I had not really associated it with medication; had thought; if I do have schizophrenia then it is the negative symptoms, so it was a shock to hear from my CPN that this could be just as much a result of my medication as the illness itself.
When I heard that, and thought this might be how I am for ever. I wondered; I thought Just what is the point? I cannot face decades more of this. And then thought of my family and thought There is every point.
I seem to be reading a lot of books about mental health recently and came across Surviving Schizophrenia; a memoir by Louise Gillet, in which she found out that her medication may have stopped her having children and that she was able to have her babies once she stopped it.
Some years ago we didn’t so much try for a baby but we stopped trying not to have one; thought, for all the chaos it would cause, it could be lovely if we had one. After reading Louise’s book, I looked up my medication and found out that it too could be making me infertile. I felt sad; felt weary that none of the people who provide support to me had thought to tell me this and that now it probably too late to make any difference...
There is absolutely no doubt that taking medication can be terrible because of what it does to us but equally there is no doubt that for some people it is transformative and gives us lives we would never have otherwise. My family and friends would say this, would say;
“Look at the joy you get with your new family and friends, the fulfilment you get from working and writing, the stuff you get that so many of your friends do not get and which you would not have without medication.”
And it makes me pause.
I cannot willingly take my anti psychotic because I think it enables me to keep on destroying the world and all I love and by allowing me to do this living and enjoying life, we are allowing something wrong to happen, but I can take my antidepressants.
I used to take them mechanically, just because people said I showed signs of depression and maybe I did. Sometimes it feels like I live enveloped in a cotton wool cloud that saps my energy and takes joy out of my life. Two years ago when I was talking about it to my psychiatrist about this, he doubled my dose of antidepressants and within a few weeks I had so much more energy in my life, so much more vigour and zest.
I try to take it regularly nowadays and listen to my partner when she says she knows that I have stopped taking it when I become more irritable, intense and sad. I know anti depressants don’t work for everyone but they do for me.
It makes me think! It is almost routine to hear people say; “I would never go onto those!”
But if I had typhoid and there was a medication for it I wouldn’t say, “No way will I put those chemicals in my body. I will not be hoodwinked by Big Pharma and the sly profits they make out of my illness.”
Nor would I for cancer, or high blood pressure, I wouldn’t question the need for it.
My partner’s father died of cancer recently. His chemo therapy almost certainly kept him alive for many more years than if he hadn’t had it. We never said;
“How dare these doctors prescribe him these things! This is just another way society oppresses us, keeps us down, takes away any pleasure we can have.”
His medication was horrible, for half the time he had no life at all but in between he was able to enjoy life with us and us with him. It gave us precious years we would never have had in another age.
Sometimes I worry; in this world of activism and mental health, that there are certain ways of thinking that we take for granted: medication bad, psychiatry bad and busy out to damage us, faith and religion bad; the cause of much illness and trauma. Talking treatments and peer support always good, spirituality wonderful.
It does not seem that simple to me. There are some talking treatments I would never want, I think they would damage me profoundly and some of the psychologists and psychotherapists I have met, they have harmed me profoundly and of course others haven’t. Some of the most damaging people in my life have been my peers and some of the most wonderful people in my life have also been my peers.
It would be so good if we were able to say what works for us and doesn’t work for us without waiting for the silence that accompanies people who say things, that in our weird culture, we know without knowing why, are unacceptable to believe or mention.
There is, in my view, no one good way to see mental illness and trauma and distress and no one good model or form of support and treatment. It feels wrong to tell other people that they are wrong: if they want to take their medication they should be able to without shame and if they don’t they should be able to that.
And for me with my compulsory treatment? We are meant to find out what the will and preference is for people like me so we can implement our wishes or that is some of the current thinking. I haven’t a clue what my will and preference is and would be alarmed if someone thought they were better at knowing than me what I want. I do have some faith that some people believe and may indeed know, what helps me and is in my best interest.
However that is an even bigger minefield for discussion!
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