Over the course of the past year or so I have spent my time going to one appointment after another, one assessment after another with a constant stream of ‘professionals’ having a view on my life, my mental health and what I need to do.
In the past month or so I have been swamped with appointments, home visits and this incessant need to be reminded that they are ‘professionals’ and to be completely patronised.
I have never felt as frustrated as I do right now.
The insane questions I have been asked have literally blown my mind. One was the family support worker who asked me ‘how long do you think it will take to feel better and be well?’
I was stunned…seriously, how on earth do I know?! It’s not like I have broken a bone and have a pretty accurate way of predicting how long it’s going to take. If I had my way I would click my fingers and blink a couple of times and I would be well. I would be back to feeling in control, no more of the horrible urges and thoughts, my anxiety would be cured and everything else would magically disappear.
On Wednesday 22nd October I met with my psychiatrist and the new care co-ordinator. With everything that has been happening with social services and being placed very firmly under a microscope I have had a tough few weeks and have done my best to hold myself together. I have felt more withdrawn and anxious about things and have wanted to shut myself down and away from people. I have worked really hard at not abusing the co-codamol and have only really slipped up on a few occasions.
Frequently seeing the psychiatrist causes me some anxiety because more often than not I leave feeling more frustrated and anxious than I did before I arrived. I really feel that she doesn’t listen and is really not particularly interested in what’s going on.
The first question is always how have things been. Which I answer truthfully. Not good. It’s a pointless question because she knows damn well how things have been because it’s been reported back to her. Why doesn’t she just say that she knows what has been happening and ask me how I feel I have coped with it? This is only a silly thing I know, but it infuriates me.
This appointment was really not good at all. She is cold and unfriendly and as the session continued I felt like she was patronising me, that she has a negative belief in me and that she was dismissive of things. She informed me that I needed to sort out my addiction to co-codamol and zopiclone. She was unkind with what she said and made me feel that I am just a junkie and that this is how she views me. She asked me some stupid questions about the co-codamol which wound me up even more. For example, ‘I’ve not really heard of co-codamol helping with IBS or being a mood changer, so why do you use it?’ STUPID…I have other friends who have IBS who have also been prescribed co-codamol to help with the pain of IBS. I have been on this medication for 5 years now and haven’t always been addicted. It doesn’t always reach the pain, but it can dull it a little and I can manage easier with the pain. However, the addiction is because of the feeling it gives you. It just makes you feel floaty, bit light-headed and things just don’t seem to matter so much. It’s a fucking opiate, family with Heroin and morphine so yes its does alter things in my head, it makes me drowsy and it does calm me down too. It eases the anxiety. I can’t help the fact it does this for me. I am certain though that I am not alone in this and that there are people up and down the country who find it just as soothing in times of need, not just as a painkiller.
She then progressed to tell me that she was only treating my anxiety and depression and that the BPD diagnosis was the job of the counsellor to sort out. MMMMM, this didn’t sit well with me at all. I have noticed over the period of time that she has been far less willing to even discuss BPD symptoms etc, she doesn’t listen to what I am telling her and to hear her say this just completely threw me. I don’t know if anyone else has experienced this too, but in my mind, anything that is mental health related to my diagnosis should surely be treated altogether? Am I wrong in thinking that my erratic mood swings should be something that is treated by the psychiatrist and that the medication I am on should help in some way to stabilise this specific symptom which is directly from the BPD? I felt that she was cutting me into 3 different people. A junkie who needs to be seen by specialists who really couldn’t give a shit about me and left me feeling suicidal. A sufferer of anxiety and depression who sees a psychiatrist and finally someone with BPD which is being wholly left to seeing a psychotherapist which I pay for….SURELY, all of this should be treated as one person? Not divided up. Am I wrong for thinking this way?
Going to the drug place is not something I want to do because of how they made me feel. I cannot drive there and the anxiety I feel about having to go back to that place just fills me with panic and fear. I don’t want to go there. I have also tried to explain that whilst they can tell me to go and even make me go, they cannot stop me from taking the co-codamol. I AM NOT READY!! I was ready when I went the first time and they didn’t help me. NOW, I have erratic moods, I am struggling with all the things which are going on externally around me and my family and I cannot deal with all this in one go. I would like to feel more in control of my moods and my emotions BEFORE I attempt to work on the addiction. I am not trying to be difficult, I just know that right now I would not succeed because I am not in the right place. I believe you have to be in the right place mentally and emotionally to make such changes otherwise relapse is much more likely to happen and I don’t want that.
As the conversation continued it became clearer that she doesn’t see or listen to me at all. I am sleeping a lot better since I have been on quetiapine. I am going to bed earlier and managing to get up and get the kids to school. I am still in a daze because I also take zopiclone. Without the zopiclone I know I wouldn’t sleep. However, her opinion is that I am a junkie who wants pills. She refuses to increase any of my meds and seems to think that reducing the venlafaxine down to 150mg from 225mg just like that is what I need to do. Well, she can FUCK OFF. I am not happy with this idea. Firstly the side effects from missing one dose, even by a couple of hours can have a horrible effect with brain zaps and shaking, muscle spasms and agitation. Then there is the issue of how venlafaxine works. Higher doses work on dopamine levels as well as serotonin levels. I am swamped with serotonin because I am also taking 40mg of citalopram every night. Her reason for reducing the venlafaxine dose at night is so it stops interfering with my sleep. DID SHE NOT LISTEN???? I AM SLEEPING….albeit not always rested sleep and I have had an increase in very vivid dreams and nightmares, but the fact is that I am sleeping for the first time in months and months. WHY UPSET THAT?????
The final straw for me on Wednesday was the way I was spoken to. I did get annoyed and angry with them and did my best to keep my lid on. I said several times that I wasn’t stupid and that I was sufficiently intelligent to understand my medication, that I needed to help myself etc. I am doing that. Her response was that its her belief that I have given up and I am not doing anything to help myself. FUCK HER. I was so angry with this. If I had given up I would not just have a problem with co-codamol, I would be drinking, buying coke when I could, not engaging with anyone or anything. I would tell them all to get stuffed and wouldn’t take any meds or anything. I have engaged with her for over a year and I am trying really hard to understand myself.
BPD is complicated, it has so many different facets to it that some of the symptoms or behaviours I have not recognised as being a part of me. However, I have slowly accepted that where I believed I didn’t have a particular symptom, I do. I have far more than I would ever want to admit and some are really not particularly good. Surely the fact that I am beginning to recognise these things is a huge step forward. When I notice them I work through whatever it is with the aim to try to rationalise them so that I don’t react in a bad way, or get myself worked up.
I don’t believe that I have given up, nor do I believe that I am not trying to help myself. To have this said to me on three occasions now just makes me feel really shit. She is not listening to me at all.
Having got a little aggressive and fight my corner, I reiterated that I wasn’t stupid and that I thought she was being unnecessarily unfair to me. She is incredibly patronising and when she talks to me I do feel like she is treating me like I am really stupid. I asked her if I was being difficult. Did she see me as being hard work. She and the care co-ordinator laughed and told me that they see many difficult patients but as a team that’s not what is important. It’s about working with the service user. However, I pointed out to her that I was paranoid at the moment, that I didn’t trust people and it mattered how she saw me. She told me that I needed to believe her and to stop thinking this way. REALLY….I would love to not think this way. I would like to feel safe and not scared about people and how they see me, what they say etc. I asked her if she had heard what I said, that I was paranoid and all she did was shrug her shoulders at me and tell me to stop believing me thoughts and believe her.
At this point the care co-ordinator opened her mouth and started to talk about the analogy of leading a horse to water. I had already used a similar thing when arguing about the drug service and how I wasn’t ready. BUT this was about my mental health, using the DBT skills etc etc. My blood was boiling by now. I had already been tempted to walk out a couple of times, but this woman who I had never met before was being exceptionally patronising to me and I just couldn’t take any more. So I walked out! I have never, ever walked out of an appointment. I was in a state. I was angry, felt belittled, not heard, broken into little pieces, misunderstood and really wondered what the fuck the point was in working with someone who failed to see or hear what was really going on. I feel like she doesn’t believe me about how I feel, what I do etc.
I got in my car, my hands shaking, my legs shaking, my heart pounding heavily, my breathing fast and shallow and the horrible panicky feeling in my chest and stomach. I was scared to drive, I didn’t know where to go or what to do with myself. I was so confused and felt incredibly alone.
I got a call about 5 minutes later from a withheld number. I chose not to answer it. The person left a voicemail…it was my new care co-ordinator who just left a cold message telling me that my next appointment to see her is the 24th November.
No one called to check on me, no one bothered with me at all. I was in a state and no one gave a shit.
It has taken me since then to now to feel calmer about the whole thing and I have talked to my counsellor and husband about what I should do as well as asking for help from a really good friend. I cannot fight this on my own. I need people who believe in me and can see the progress and the times when its a battle. I am not trying to be unwell, I am trying desperately to get my life back together, but when you are treated in this manner, everything starts swirling round again. Most people question whether things are really as bad as they believe them to be, is this feeling inside real. It’s so incredibly hard to ask for help and to trust someone enough to share with them how you are feeling, why then behave in the manner in which those ‘professionals’ have.
My counsellor was disgusted with what is happening, she agrees with me that my meds are unbalanced and if anything it should be the citalopram which is decreased and the venlafaxine increased. My mood needs stabilising now, not my sleep. Psychotherapy is going to take a long time to get to the bad shit and right now we are just trying to keep me safe, acknowledge my moods and their frequency and see a pattern perhaps. We haven’t touched on anything remotely bad and therefore it’s not an issue right now.
My husband and I have also talked at length about things. I have asked him to help me wean off zopiclone and co-codamol. I am going to get one of those pill boxes that you can get where you can organise your daily meds for the week. He is going to take control over the co-codamol and zopiclone and we will work out a sensible way to wean me off those. He is willing to help in whatever way he can and he knows how hard things have been. We are talking more than we have and our relationship is beginning to feel like a friendship with a bit of spark to it. There is a long way to go, but the fact we are talking is a huge step and I am thankful to have him still here believing in me. He also agrees that I need to change my psychiatrist.
I was all ready to stop every single last medication and go cold turkey. But through sensible conversations with a couple of friends, my counsellor and hubby I am not going to do anything that drastic. I am going to write a letter and say that I would like to change the psychiatrist and that I don’t want to see the care co-ordinator. I am willing to do as much as I can for myself, but I do need to have support from people who are actually going to work with all of me and not a couple of aspects. I don’t break down into those pieces, I am a whole person and I need to be seen as that. I also need to be listened to and not treated like I am a thick moron or a junkie. I am not either of those things and to be talked at like I am is unacceptable.
Monday next week will be when I put in my letter to change psych. I am determined to get better and I know that there is a way forward with the right support and meds. I am going to fight this bastard of an illness and get myself to a place where I can manage it and get myself to uni. One day at a time, one hour at a time, but no matter what happens I will keep fighting and when people get in the way of that I will dispose of them. I need supporters not negativity and false beliefs.