Birthday Cheer: Hard To Be Cheerful When You’re On A Cancer Unit

It’s my 24th birthday tomorrow. There was a time 7 months ago when I didn’t think I’d see my birthday, then again at the time I don’t really think I did want to see my birthday. Now I am not so sure. I still have days where I wish I was dead and that the attempts had worked, but then I have other days where I am prepared to give life a go and see if it can throw anything nice at me for this year!

As my birthday occurs in mid-June I always see it as the mid-point of the year and therefore give myself time to evaluate the year I have had so far on my birthday. This year however, will be different. I am not going to look at the last 6 months, I think it is fair to say that we all know that the events of 2009 haven’t been great. The New Year started badly and so far hasn’t improved that much.

I saw Jane and Dr Mc yesterday. I was perfectly honest with Dr Mc and said that I felt my mood had been slipping over the past few days. He decided that adding an antidepressant to the valproate would be a good idea. He asked me if I had  any suggestions. Of course I lept to the idea of venlafaxine, for the weight loss reasons, but when we rationalised the last few antidepressants I have been on it does seem the best bet. Reboxetine didn’t have much effect on me until the dose was increased and then it sent me manic, duloxetine was the one I was on at the end of last year (and made 3 suicide attempts on and ended up hospitalised), me and the SSRIs don’t agree (everytime the dose is changed I have a mood swing) and I am still deemed too much of a risk to be given a tricyclic. Therefore I am back on venlafaxine, at a ridiculously low dose of 75mg/day.

Jane was very helpful and helped me to realise that I need to let all the people who I promised favours to when I was manic down gently. I hadn’t realised how much I had taken on when I was manic, and of course now I am not then I don’t have the energy to complete all the favours I offered so am going to have to bite the bullet and let them all down. She was as positive as ever and reassured me that I was coping admirably, even though I disagreed with her on this front.

I’m currently sitting on the Teenage Cancer Trust unit (they treat up to 25 year olds) and will be until Friday afternoon. What a way to spend your birthday – being pumped full of cytotoxic drugs that make you feel sick. Mind you, they also make me feel very drunk without the actual alcohol, so it’s all swings and roundabouts! My sister got me both the Ashes to Ashes soundtracks for my birthday, so I have some great 80s cheese to listen to which is always a relief!

Ruth

Divided They Stand: How The NHS And Private Sector Cannot Work In Tandem

I got my care plan through the post from the CPA meeting that was held whilst I was in the Priory. I already had the Priory’s copy as my named nurse and I went through and wrote it up whilst I was still an inpatient. The copy I got through the post was my NHS version, a little late admittedly, and unsigned by me.

There are huge discrepancies between the two. Dr Mc and the Priory have listed me with a diagnosis of bipolar affective disorder with emotionally unstable (borderline) traits. The NHS say that my diagnoses (most significant first) are emotionally unstable personality disorder and bipolar affective disorder. In fact Allison has written in the CPA review “Ruth had been anxious to obtain a diagnosis of bipolar affective disorder as opposed to Borderline Personality Disorder. Dr Mc reiterated a diagnosis of bipolar affective disorder with emotionally unstable traits”.

Traits are just that. Things in my personality that mean I am emotionally unstable at times but not enough to fulfil the criteria for a personality disorder. Allison has been doubting Dr Mc’s diagnosis since day one, this is one of the reasons that I have found it so hard to grasp the fact that I actually do have bipolar (told to me by Dr Mc, Jane, all the nurses at the Priory and my GP) rather than just seeing myself as a hopeless personality disorder case. Allison has written in the review that I should consider the NHS group therapy programme for BPD, even though at the review Dr Mc and the therapy team at the Priory thought it was an inherently bad idea.

I still do not know where I stand. I know I was admitted into hospital before Christmas with severe depression and Dr Mc said I had bipolar 2. This was then reviewed and changed to bipolar 1 when I went manic and had hallucinations. I was admitted last time due to mania, which Dr Mc and Allison both agreed I had. Now I know that Allison isn’t denying the fact I have bipolar, although I do think that she does doubt the diagnosis and has only written it down because Dr Mc told her that was what is wrong with me, but she seems obsessed by giving me a full BPD diagnosis rather than allowing it just to be traits, as Dr Mc wants.

The NHS and the Priory are getting worse at keeping in touch with each other. Last time I saw Dr Mc he had received a phone call from Allison less than an hour after I had seen her because she was concerned about one thing or another and decided that it was a matter of safety so he needed to know. This was over a week ago. Now Allison seems to want to get me to do the liaising between the two of them and when I saw her on Friday told me to tell him a couple of things from her. I felt like saying that if she could go behind my back to inform him of things that I had already agreed I would tell him (she clearly just didn’t trust me) why should I act like the gobetween now?

I have no idea why I see Allison really. The Priory give me most of the support via Dr Mc and Jane and the NHS just seems to be getting in the way. When I rang the CMHT a few days ago to speak with Allison, as she is listed as my first point of telephone contact, and she wasn’t there, instead of the duty worker speaking with me (as he should have done) he decided to look at my notes and tell my that I should just ring the Priory. The crisis team refused to assist me after my discharge because I was discharged by the Priory and it was up to them to sort out aftercare, which they are doing in the form of daypatient care, but that still leaves the weekend. I know I can phone the ward at the Priory day or night and someone will talk with me, but the staff on the ward are there for the inpatients. It should be the Community Mental Health Team that deals with problems in the community, hence the name.

I need to keep seeing Allison as I do not know how much longer my parents will be able to fund the Priory, particularly daycare, and so keeping in with the NHS trust means that when I need them fulltime they will already be there, rather than me having to wait weeks/months to be re-referred to the NHS. However, at present I feel she is detrimental to my recovery as she is always very hesitant about what I can and cannot do or am capable of. The Priory support me massively and are keen to see me do things and lead a ‘normal’ life, but Allison always has her doubts, and she voices them. I am not saying that the Priory is the be all and end all, god it has it’s own little brand of politics that is difficult to fathom at first and hugely irritating when grasped, but they seem to be a lot more focused on making me well, rather than keeping me in the unwell mould.

I have also crashed down from my (hypo)mania. It was slow and steady and I could feel it coming. First I went hypomanic, then I had a period of relative normality where I was on an even level and quite happy, then I could feel the signs of depression creeping up on me. The wanting to stay in bed and perpetually tired. The not caring about what I wear or washing my hair. The comfort eating (when I am mild-moderately depressed I eat a lot, when I am severely depressed I stop eating) and craving for chocolate and carbohydrate. The apathy towards whatever I am doing and nonchalent attitud as to whether it is completed to a good standard or not.

I am nowhere near severely depressed but I am depressed and if current trends are anything to go by it will continue to slide. I see Dr Mc and Jane on Tuesday so will mention it to both of them. I don’t know if Dr Mc will put me back on an antidepressant. I desperately want venlafaxine so I can shift the weight I’ve gained, but then I shouldn’t be picking my possible treatments on account of me liking the side effects. Part of me wants to get through it with no antidepressants, or indeed medication at all, but then part of me knows I should accept whatever help is given to me.

In better news, I haven’t self-harmed for 2 weeks – the last time I self-harmed was when I was an inpatient. I haven’t actually even wanted to cut/burn myself so there must be some improvement somewhere. I want that feeling to last, this is why I’m scared of the depression creeping back in.

Ruth

Creature Comforts: Back Home In My Own Surroundings

I am finally back at home after pleading with Dr Mc that I was safe to be discharged today and didn’t need to be kept in over the weekend. I was going to be discharged earlier this week but after an overnight leave, and ignoring everyone’s advice about not driving whilst in this state, I drove my car and crashed it. Luckily I didn’t cause anyone or anything else any damage, as apparently my insurance is invalidated as I am driving whilst having a medical condition (mania) that I have not informed the DVLA about. If I do inform the DVLA, then my licence will be revoked and not reissued for eithe r3 or 6 months, depending on when I am stable, and then it will probably be assessed annually. Luckily no one has informed the DVLA, and as my car isn’t exactly in a good state at the moment, I won’t be driving for a while.

The valproate has been increased again, but although it has taken the top edge off my mood it hasn’t capped it like everyone had hoped it would. My thoughts are now racing around my head at about 200mph rather than 500mph, I can sit in a chair and only move my feet and hands, rather than jiggling my whole body around. It is little differences like that which have enabled me to be discharged though, so I guess I should be grateful.

This post isn’t going to make any sense, I can’t keep my thought process on writing it for long enough. I guess the basics are that I’m home, I’m now classed as hypomanic, I crashed my car, I self-harmed and ended up in A&E again on Saturday, I have made myself turn over a new leaf and be accepting and welcoming of the help the Priory are giving me as I do not know how much longer my parents can fund it, I see Allison on Monday and Dr Mc again on Tuesday and I only have to keep myself on the straight and narrow for the next couple of days.

Ruth