Dilemma

For a number of years now I have been trying to get voluntary advocacy work. This is because I eventually want to retrain as an Independent Mental Health Advocate (IMHA) and need experience of advocacy work to be able to go down this route. I’ve tried numerous charities over the years and have had the following issues – no funding for any roles, no funding due to me not being in the right geographical area, repeatedly not gotten back to me, etc. I’ve found it very frustrating especially because as a qualified lawyer, someone with experience of welfare and housing through work at the Citizens Advice Bureau and a person of lived experience of mental illness (including compulsory hospitalisations) I reckon I would be a good candidate for an IMHA role. However, recently I contacted an advocacy organisation in Preston regarding voluntary work and they wanted to meet me. I thought that at last my persistence was going to pay off. This afternoon I  received a reference request form from the volunteer coordinator via email. The problem? The meeting I had with her on Monday left an especially bitter taste in my mouth.

So why did this meeting leave such a bitter taste in my mouth? Well, before we got to questions regarding the role the volunteer coordinator, L asked me a barrage of questions including:

  • What are you doing now? To which I answered I was currently out of work due to illness, which led to:
    • Why?
    • What’s your diagnosis?
    • How does it affect you?
    • What symptoms do you get?
    • When were you last in hospital?
    • Have you been ill since then?
    • How do I know you’ll turn up to an arranged appointment?

I was stunned. I am ashamed to admit it that I attempted to answer these questions, albeit extremely vaguely. I know that these sorts are questions are wrong from my previous experiences in work with HR/managers when unable to work due to illness. In my last job at Rochdale CAB, for example, when I had an absence and had a back to work meeting I was asked how I was, if there was anything about work that was contributing to me becoming unwell, is there anything that can be changed at work (eg hours or days of work) that would help me stay well etc. Not details of my conditions. At interview with them I felt comfortable to explain to them that I had been out of work due to my mental health and they saw no reason to probe further. That’s how it’s supposed to be done and also in line with my experiences when I worked in a law firm. It’s left me wondering how they deal with people in general at the organisation and whether it is a suitable place for me to be volunteering.

As well as the intrusive questioning I have a further issue. The advocacy role at the organisation is for benefits assessments (not the appeals phase). I’m not sure I can cope with the fear of being in such a situation. When I explained that I had never been to a face to face assessment for benefits, L even remarked flippantly “You will soon” with regards to the transfer from DLA to PIP.

So on the one hand I finally have the opportunity to gain advocacy experience but on the other hand is the bitter taste. I have emailed another advocacy organisation in the region and it deals with mental health and so I hope to hear from them. But if I don’t or it is a negative answer, what do I do? Should I go ahead with the benefits assessment advocacy role or not?

 

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It’s Been a Long Time

It’s been a really long time since I blogged but feel that I need the outlet again to try and order my thoughts and document my efforts to rebuild my life. AGAIN!

As you can imagine, a lot has happened since I blogged back in April 2016 so I thought I’d kick off this new era of blogging with an update as to where I am at.

I’ve had continued struggles with what the professionals describe as psychosis as part of schizoaffective disorder – yet another diagnosis. I will use the term ‘psychosis’ to label my experiences (which have been described in previous blogs) for convenience but I don’t agree that I am suffering with psychosis; I’ve come to realise that these things are definitely real.

I’ve been struggling greatly again with psychosis since September 2016 and was even sectioned November 2016 by an AMHP and Drs attending my flat in the middle of the night. To say I wasn’t impressed is a great understatement. The voices and controllers etc have been significantly bothering me and causing me to be unable to function and I’ve twice had to stay with my mum for extended periods.  Now, however, I am on a ‘therapeutic dose’ of risperidone and it actually helps. Although my experiences are real they are extremely distressing and the risperidone dampens things down, quietens the voices, makes the nanobots less active etc. It doesn’t leave me sedated all the time like clopixol did and dampens things down better than clopixol did but I’ve had problems with high prolactin levels, which are now hopefully starting to reduce towards a normal-ish level.

I’m still struggling with residual symptoms of psychosis, which are quite distressing at times. I had an idea to work through cognitive therapy for psychosis workbooks to help me try and challenge my thoughts and beliefs that the professionals call delusions. However, it’s proved to be difficult. How does one challenge reality? My cpn has said she will help with this but I’m finding it hard to get started. Instead (or as well as) I am trying to reinstate mindfulness back in my life both in form of meditation and informal practice. It’s difficult being so out of practice. I’m trying to learn how to step back from the voices and the psychotic thoughts but sometimes it’s so scary sitting or lying there and finding that you’ve once again got tangled in the psychosis instead of the breathing meditation or body scan. I do believe that despite it being reality it would be great if I could learn to stand back and watch my thoughts as I used to be able to do with both thoughts and emotions. My mood was also better when I had a meditation practice (rather than my current state of deflation and demotivation).

Now I’m on a medication that helps me function and be less preoccupied by the plans of the spies and controllers I am once gain trying to rebuild a life. To be frank, I’m f*cking sick of having to rebuild my life though. I’m under a team called Community Restart to which I was referred by the Home Treatment Team earlier this year. My Restart worker is  helping me find and try activities to better structure my week and meet people.

The Community Restart team is especially needed because in January this year I moved back to Preston to be near family. I haven’t lived in Preston since I was 22 when I lived with my mum for a year as a stopgap. I don’t really have friends I can call on and enjoy activities with in Preston and I want that to change. I am, however enjoying being around family again; being able to enjoy impromptu visits to siblings, nieces, nephews and my mum. I love being able to see them so often. They bring great joy into my life and they are an important source of support. In moving back I have had to deal with self judgments for needing the support and I have left behind some very close friends but I’m slowly coming to terms with these things.

I’ve started playing badminton on Thursday afternoons at the local leisure centre with a group of people that also have difficulties with isolation and their mental health. I even cycle to get there and back. I find it difficult to motivate myself but enjoy it when I’m there and it is much needed exercise after putting on so much weight last summer when I was on quetiapine. I also tried climbing on a Wednesday evening a couple of weeks ago and going to go back this coming Wednesday. Lastly, I’ve posted off a volunteer expression of interest to ICANN, an advocacy organisation. I still want to retrain as an IMHA and believe volunteering with ICANN would help me along my way to that. I’m not sure if I’m ready given the continuing psychosis but I feel so stagnant right now and feel maybe some purpose in the form of meaningful voluntary work would help me progress.

 

 

 

 

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Ideas on a postcard, please

For the last 6 weeks I’ve yet again been suffering depression. That’s quite a short period of time really but it feels like it’s been so much longer. The good news is I’m improving. I’m feeling much better than I was – I have my appetite back and my concentration has improved but in other ways I am still struggling. In particular, I am struggling with urges for self harm and suicide.

Why am I having such difficulties with urges to self harm and suicide? I feel like I’ve reached the end. When I started this blog 2-3 years ago I defined what recovery meant and I was quite positive that I will have episodes of depression again but that I will overcome/recover from them. That might be true (although it doesn’t currently feel like it) but I’ve lost the will to fight. I can’t and don’t want to keep going through the desperation, devastation and isolation of depression. I don’t want to have to go through periods where I don’t experience joy and where I feel as though I am just an observer in life, where I have to force myself to eat. I don’t want to have to go through not being able to concentrate on anything – not being able to watch a TV programme without difficulty, not being able to read which, is one of my methods of escapism. I don’t want a life which will have constant absences from a job or lack of a job at all due to my mental health, as is the current situation. To me, none of this is a life worth living.

It’s not just the depression either. If it’s not depression, it’s psychosis, anxiety, or hypomania. It’s a never ending cycle of one mental health problem to another. My CPN says that the reality is I have “severe and enduring mental health conditions”. Hardly reassuring or positive is it but I suppose it is probably true – repeated episodes from which I will have to recover each time. The future is bleak.

So with all these thoughts in my head and the logical conclusion being to kill myself, why haven’t I? Because my friends say they will miss me, I’d be letting them down and family members. I feel as though they would be better off without me but I am assured otherwise. It sounds silly but I wouldn’t want to leave behind my guinea pig, Maisie, she relies on me and has been a companion throughout. I want to work again. But the biggie is that my younger sister is getting married in August. She’s the sister that I practically raised and we are very close. We are so close that it physically hurts me to think about leaving her behind. I would love to see her in her wedding dress. She is already beautiful but I can imagine she will be even more stunning in her wedding dress. So today I have ordered two dresses as my potential wedding outfit. I’m planning ahead despite all the thoughts, feelings and urges to end my life. I need to hang on for a few months. I need to find a way to stay alive. Ideas on a postcard, please.

 

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Self Harm & DBT

Apologies in advance if my thoughts are a little disjointed in this piece, I’m quite low at the moment, which messes with my concentration and ability to form coherent thoughts.

I’m not entirely sure what I am going to achieve with this blog but I feel like a post such as this is long overdue. I started self harming when I was 8 years old. No-one found out until my mid-twenties. It is a coping method that I have therefore used for a long time. I say have used now instead of had because I’ve fallen off the wagon.

During and after DBT, for a period of over 2 years (3 years for overdosing), I did not self harm. I thought I’d put it behind me, that I would no longer attempt to solve a situation or emotion by hurting myself. It was finally my past. It felt good, it felt as though I could achieve anything.

Then my world came crashing down around my ears. I hit a severe depression and self harmed a number of times. I thought I’d put the genie back in the bottle though and it was just a blip but then came the psychosis. The sheer fear the psychosis generated could only be quieted by the razor. I self harmed numerous times all over my body, and severely. Yet I managed a second period of psychosis without harming myself. Was that it? Had I finally cracked it once and for all?

No. This past week I have resorted to self harm again. I have self harmed twice, both times requiring A&E. I hate it, the long wait, the knowing look of the staff. Yet for some reason I feel ok with it in some ways. I don’t want to self harm but it isn’t the end of the world. Yet in other ways I feel like a fraud and a failure. The proud DBT wonder kid getting bitten in the butt.

I have today decided that it stops. It really does. I don’t want the increasing number of scars. My body is a mess and I don’t want to make it worse. I don’t want to have to waste my time in A&E, wondering if I am going to be treated with dignity on that occasion or not. I don’t want to identify as a cutter. It’s not me. I’m a fighter and I want to fight this. How? It’s back to the ol’ trusty DBT skills along with a healthy dose of will power. I have been choosing to cut instead of using skills, now I choose to use skills instead of cutting.

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Change

So, since my last blog I have had another episode of psychosis and the Clopixol had to be increased again to squash it. However, I’m still unhappy with this medication. I have numerous side effects due to this medication including:

• Being emotionally blunted and numb;
• I haven’t cried in a year, which is completely out of character for me;
• Blurred vision, for which I have to take procyclidine;
• A horrible dry mouth sensation;
• Random tics.

The worst one is the emotional numbness. It has robbed me of joy and sorrow. It has robbed me of my motivation and my will to live.

So, I am changing the Clopixol for Risperidone to see if that will better suit me. Apparently antipsychotics all have a blunting effect but the older ones (such as Clopixol) are renowned for being the worst at this. I’m going to give Risperidone (a newer, atypical antipsychotic) a go but I am scared. Scared that the psychosis will return because the Risperidone doesn’t work for me. Scared also of potential weight gain.

Risperidone isn’t like Olanzapine though for weight gain, it doesn’t tend to put anywhere as near much on and if Risperidone gives me back my motivation I will be up and about much more and even get back to the gym thus limiting any weight gain. That’s the hope anyway.

If I have another episode of psychosis* there are other antipsychotics still I can try to help me with that.

So, fingers crossed for the next few weeks or so during and after the changeover.

*I’m still in two minds as to whether it is psychosis or if I am just suppressing reality.

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Numb

This update blog has been on my mind for a little while but the impetus to finally writing it came through a conversation on Twitter about the new film, Inside Out. Surprise had been expressed that I hadn’t cried because of it. Usually anything sentimental like a sad part of a film would get me crying, I’m a highly emotional person. I say ‘usually’ and ‘highly emotional’ but highly felt emotions haven’t been a part of my life for a number of months now and the most likely reason is the Clopixol (an antipsychotic) I am taking for the episode of psychosis I endured for 5 months of last year.

I am flat, numb, living behind a sheet of glass, which the world moves around me and out of reach. I’ve been unable to cry for months and although I can notice things as good, such as a film or a book, I don’t *feel* the enjoyment. I’ve recently been on holiday and people ask me how it was. To be honest, it was ok, just like every other thing in my life. It’s ok.

I say ok because there isn’t really a word to describe me and my life right now. Even flat/numb can’t put across how things feel or rather not feel. I have no motivation and I sleep loads.

The problem is I’ve already reduced my Clopixol dose to the minimum effective dose and I am already having residual or breakthrough symptoms. I recognise to reduce it further would be the wrong thing to do due to the likelihood of the full blown psychosis rearing its head again. That’s a terror I can live without, thanks. In terms of alternatives, I would want a medication without weight gain and Clopixol is one of a very few of them, one of which didn’t work and I’m allergic to one of the others. Apparently all antipsychotics have a tendency to flatten people out like this anyway.

I’m trying to keep doing things in the hope that I will start to feel enjoyment (or even the release of so much needed of tears). I’ve even started to go back to the gym to see if that will give me a boost of energy and enjoyment. Self harm would be a sure fire way to get a temporary release but one I have chosen not to use. So, I’m stuck in this no man’s land of emotions. A medication I take to help the psychosis, and which undoubtedly does work in this regard, is in effect slowly draining me of the will to live.

 

 

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Leaving Behind my Self-worth?

Just a short update. I don’t know really how to explain this but today I informed my line managers that I am handing in my notice. I had spoken to them briefly a couple of weeks ago to let them know I was considering it but today I confirmed it. I spent time with family and friends and have discussed the issue with them. I am also being supported in this decision by my CPN.

This past year I had an episode of hypomania for a number of weeks followed by severe depression for 3 months. I had 2 months stability before enduring 5 months of psychosis. I am now currently in another episode of depression and have been for about a month and a half. I have had a lot of time off work due to these episodes and it is currently impacting on my ability to carry on with my job. In addition, the job itself is impacting on my health. I have had to face the truth that it is now becoming something that is untenable.

Handing in my notice has been one of the most difficult things I have had to do. It has caused tears and panic and much emotional turmoil. Employment to me is really important and I gain a lot of self-worth from being employed. It is difficult for me not to feel like a failure. I am trying to head this off and remember and practise the ideas of self-compassion I was introduced to whilst in DBT.

My plan now? It is to garner a little stability, become involved in the local foodbank at my church, participate in the next level of my Italian classes (ie put some structure into my week) and then once well enough again I will look for employment, perhaps with something that isn’t so emotionally draining or responsible.

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