Those who are on Twitter will undoubtedly be aware that I was in hospital for a few days due to a sudden illness. I have not recovered from the illness, and to be honest, I don't feel any better. I'll explain the hospital stay in more detail in a bit but I received an interesting letter this morning.
My ESA form had to be sent off and I asked my CPN for a letter to accompany the form. She provided one, which I received this morning. In it, my diagnosis was given. Just over a year ago, my then-CPN gave me a letter to send with my DLA form and he gave my diagnosis as being 'schizophrenia'. Some time between then and now, my diagnosis has changed. I've no idea when this was, but nobody has told me that my diagnosis is now 'Paranoid schizophrenia with emotionally unstable personality traits'. Emotionally Unstable Personality Disorder, commonly known as Borderline Personality Disorder or BPD, is one that is often looked down at by psychiatric 'professionals'. It is often seen as 'attention seeking' by those who should know better, and sometimes treatment is withdrawn solely because of having this label. It's not right, and it is a diagnosis that I view with so much sympathy because of the way sufferers are treated.
When I saw that I had 'traits' of BPD, I was upset. I'm not bothered that I'm a 'paranoid schizophrenic' or have BPD traits, what bothers me is how psychiatric professionals may now view me. I don't really know too much about BPD if I'm honest, but the research I did this afternoon would indicate to me that I don't really have it. I will ask my CPN why I have been given this, but it's not having the label of BPD traits that bothers me. It is how I will be seen by psychiatry and if it will affect my support.
Anyway, back to the hospital stay. I was taken in last week, Wednesday I think, because of severe abdominal pain. It was at the point where I couldn't eat, sleep or even move because of the pain. A doctor came out to visit me, and because of the type of pain and location, he immediately suspected appendicitis. Within 90 minutes, I had arrived in hospital by ambulance. After blood and other tests ruled out appendicitis and a UTI, the doctors were a bit confused. They started sending me for scans, and were poking and prodding me frequently. The test results were vague and inconclusive, so on Saturday, a doctor told me he was sending me for a CT scan, and if that was inconclusive, they would perform exploratory surgery. He also started me on two lots of antibiotics to cover his bases.
On Sunday, another doctor came in whilst the pain was excruciating and asked to feel my stomach. In floods of tears and begging him not to touch me, he prodded my stomach and told me that he was taking blood tests and sending me home if they were clear. As I was in a lot of pain, and now fearing that I was going to be sent home too early, I started shouting at this doctor, demanding to know why I wasn't being sent for the CT or surgery. This doctor told me that I didn't need any more tests and could go home. He then asked where I had got the idea of a CT scan from. I told him the doctor the previous day had said it. His response? 'What doctor?'
After a nurse told him about Saturday's doctor, he looked a bit sheepish and went to read my notes. He came back about ten minutes later with his metaphorical tail between his legs. Apologising profusely, he told me that he make some phone calls and sort everything out. A few hours later, he came back, telling me that I would go for a different scan, and then they'd try every avenue possible to try and sort me out, surgery being the last resort. I felt so much better at this, and was able to calm down.
The next day, Monday (yesterday), the doctors did their ward round and I was told I didn't need any more scans or tests. The doctor in charge of my care told me that I was looking a lot better, and despite me telling him that this was because I had got my pain under control with morphine, which could be clearly seen from my medication chart, he told me that I was now recovering and after referring me to the pain team, he would send me home. I was distraught at this, because I knew I wouldn't be able to go home on morphine and I didn't want to become addicted to cocodamol, the alternative I knew would be offered by the pain team. I begged the doctor several times to spend a few days trying to sort me out, even if it meant surgery, and then send me home, when I wouldn't need pain meds, or at least not need them for very long. He refused, and despite the doctor from the previous day (the one who had told me they would try every possible avenue) being present, he stayed quiet throughout the ward round.
When the pain team came round, sure enough, they told me that they would put me on cocodamol. I told them I didn't want this, as I didn't want to become addicted to it. They pointed out that morphine was worse, and despite more pleas to sort me out there and then and not need pain meds, they told me there was nothing they could do. I could take cocodamol and ibuprofen or nothing. Knowing that nothing would mean being bedbound again, I reluctantly agreed. Once my medication arrived, I was sent home, being told that I would have a repeat of one of the scans in six weeks and if I got worse, to see my GP.
So that's it. Am still in a lot of pain, no one knows what is wrong, and I have to wait six weeks for a follow up scan. I can go to my GP on paper, but when I am struggling enough to walk to the bathroom at the moment, I'm not sure how, aside from another home visit! All I can do is take the antibiotics and painkillers and hope the antibiotics start working before I become addicted to the painkillers. The antibiotic course is a 14 day course and I've only been taking them for three days so far. I'm really hoping they work soon, because I know that a person tends to become addicted to codeine within three days of frequent use. I'm stuck in bed enough on that, so I don't want to risk coming off it and not being able to get the pain under this small degree of control that I currently have.
I've had to stop the production of the magazine too for now. The stress of this, the tiredness from not being able to get very much sleep and the pain is dampening my cognitive abilities. I'll try and get back to it ASAP, but this blog post was difficult enough to focus on. I just hope this post is coherent! I'm sure the grammar police would have a field day with this.
Wow, those doctors in the hosptal sure get me angry, and I'm not event he one in pain. I'm so sorry they sent you home with no relief and on addictive medication. I'd file a compliant, although I understand you're probably not in a condition to do that.
ReplyDeleteAs for your diangosis of "BPD traits", please understand the diagnostic criteria for BPD and EUPD vary slightly. However, you should really have more than like two traits consistently to get this label. I also understand your fear about this diagnosis. I am pretty sure I have BPD, but am glad that I don't have this diagnosis or I'd be treated (or not treated) worse than I'm now.
It's all a bit over my head to be honest, I really need to speak to my CPN and see why I've been given this new label! I'd been expecting paranoid schizophrenia to be honest and as I know that this label also doesn't mean evil, it doesn't bother me. It's just knowing people with EUPD/BPD labels who are treated badly, like attention seekers, that bothers me.
DeleteAnd you're right, I'm not really in a condition to make a complaint right now! That blog post was pretty tough to write, not because it was a difficult topic, just because my brain is scrambled at the moment!
Best wishes,
Katy
Katy, I am immensely impressed by you. Blown away, in fact. Your very articulate, and often humorous, blog is a great source of information for both MH sufferers and sympathetic others (like me). I agree with your perspective on labels. It is my own profound belief that we can all, at various times in our lives, and in various circumstances, be placed along the continuum which describes mental illness or health. One day, I believe, there will be no categorisation as normal and abnormal, just recognitions of different types of reality perception. Hope that makes sense. Anyway, sending you hugs, and massive respect.
ReplyDeleteDalia x
Hi Dalia,
DeleteI agree with you that everyone will probably have some 'mental illness' at some point in their lives, but often it is just a reaction to stressful events that causes the illness. I am a firm believer nowadays that high school bullying was a major factor in my schizophrenia, especially when I look back at my old diaries from high school. In them, I can see how similar things the dominant voice said to me were to the things bullies said to me. One time in school, I was called a 'cradle-snatching lesbian' - a phrase I only ever heard from that person, and I only ever heard it on that one occasion. (Long story about why I was called that.) My dominant voice used that phrase on me a few times, and I wish I'd had the thought clarity at the time to see where that phrase had originated! I hope there's no categorisation of normal and abnormal soon, after all, what IS normal?! What is normal to me is chaos to another person and vice-versa.
Thanks for getting in touch and also for being a 'sympathetic other' in your words! I have many people visiting my blog who either have the label or have a loved one with the label but not many people who are a 'sympathetic other'! (I like that phrase!)
Katy x
Oh wow, i missed alot. You know I am BPD and I can understand your concerns as people do hear the word borderline and lose the plot, thinking all sorts. Ive been lucky so far in this job nobody is the slightest bit bothered and accept me for me. If you don't think it fits talk to someone. x
ReplyDelete