Caught in the cogs
It’s been an awful weekend, with a few moments of loveliness (thankyou Peter, Amelie and Maya, Bek & Allison for lovely visits and great food) where I’ve felt like I’ve got my head above water. Mostly I’ve been drowning. The agitation is much worse, I’m having sensory hallucinations again (although they’re less disgusting smells, hooray!), and I’m having intermittent periods of profound depression. I feel like I’ve been in a road traffic accident I have such bad muscle pain, and the joint pain is dreadful, mostly because I messed up badly with my pain relief on Saturday when I went out with my family, and haven’t managed to recover from that yet. I have had a horrible nurse for the last 36hrs who seems to think I’m an addict and delights in getting me my pain relief very slowly and asking if I reeeeeeeaaalllly want the full dose? No woman, I’m deliberately drugging my baby, fuck you. If I could take less I would be, like I managed to on Thursday and Friday when staff had actually given all of my doses on time for three days running. This woman has taken a dislike to me and I have to say I’m not too keen on her either. I so hope my keyworker is back tomorrow, she’s polite and respectful and would actually listen to my concerns, but there is no point in raising them with the kind of staff who are on today.
I think part of it’s the drugs, at least one of them. The other one I’m happy(ish) about being on. But I have never got on with SSRIs (selective serotonin reuptake inhibitors), now is no exception to that, and against my instincts I agreed to let them increase my dose two weeks ago. I’m pretty sure I’m paying heavily for that now. Certainly I’m not your average mental patient, and have a unusual amount of insight for someone whose symptoms are purely psychiatric, which is why I think there is an organic/medication issue involved. I don’t know whether it has caused the psychiatric symptoms, or whether the stress of long term mental health problems and a lot of trauma in life has dysregulated my hypothalamic-pituitary axis. What I am upset about is that when I raise these issues as a possibility, even though I try to do it so gently and respectfully I get instantly dismissed as delusional. God forbid there might actually be a patient with a decent knowledge of how their body works and what is and isn’t normal for them, and God forbid they may actually want to be actively involved in their treatment and rehabilitation! I want to come off the SSRIs, but my psychiatrist just can’t cope with the idea, as they “always” treat people with a combination of SSRI and atypical antipsychotic. They cannot fathom the fact that I might actually need treatment that is tailored to me as my metabolism might be a little different and my other medical conditions mean that my body and brain just don’t respond in an average way to some medications. I’ve had lots of odd reactions to drugs in the past, as have other members of my family, especially my Gran. Particularly, we’re ultra fast metabolisers of many drugs including opiates, which I have to say has made my life difficult over the last 10 years! No better way to have people assume you have a drug dependency issue than to tell them that the pain relief that should have lasted 6 hours (or the patch that should have lasted 3 days) has worn off early!
The problem isn’t that anyone means badly or is malicious, it’s the system.
A while ago while I was trying to process the trauma of Amelie’s birth I read a book called “birth crisis” by Sheila Kitzinger. In it she explains her opinion that the birth culture in this nation is like a machine that sucks people in with its “one size fits all” treatment, processes them, and spits them out the other side. I’d say that applies very clearly to general medical and psychiatric care too. The cover of the book is an illustration that pretty much describes how I feel at the moment:
It’s illustrated in a silly and less serious way by the horrible interaction I had with a group of four staff this evening regarding my evening meal. As they didn’t provide me with any food that I could eat last night so Peter had to get a takeaway delivered to me, and in case it happened again today he brought in a couple of portions of cottage pie from home. Although a meal did come for me this evening, I couldn’t face eating the disgusting and tiny portion of food they’d sent (212 calories is enough for a pregnant woman? I don’t think so!), I asked if I could heat up one of the portions that Peter had sent in for me. The whole group of them ganged up on me and said yes they’d heat it up for me on this occasion, but that they wouldn’t do it again, implying that I was unreasonable asking for special treatment and generally being pretty nasty about the whole thing “well this is a hospital you know”, like I was asking for room service!. So now I’m stuck with no option but to continue on the disgusting starvation rations that I’ve been living on (or not getting at all) for a whole month now. I’m not well enough to go home regularly for meals, it’s too far to get food to me hot, and we can’t afford to buy takeaway food any more at all, this situation is financially crippling us. I do think my circumstances are unusual, as there’s only one other pregnant woman here, all the rest have had their babies, and none of them is breastfeeding (which incidentally I think the unit is RUBBISH at promoting or supporting), so their nutritional needs are not the same as mine, they can leave to get different food if they want, and they have a much wider range of available food as they don’t have to choose from the stupid allergy menu, most of which is inedible. So yes I am asking for special treatment, as I have unique medical and nutritional needs, and anyone with any training in using their brain critically and an ounce of compassion would be able to work around that at least a little, or on the odd occasion. I have to say, if I didn’t think that I’d possibly be sectioned if I did, I would be seriously considering self-discharging at this point. But I’ve been sucked into the system, and now I can’t get out, so I have to try to be patient and hope they eventually work out what’s wrong with me and how to treat it. And that my baby isn’t horribly damaged in the meantime. I am grateful that I believe that overall my future and my baby’s future is in God’s hands, not theirs, as I don’t feel that they are trustworthy to handle that responsibility, and I think if I thought that I was fully under their control I would have gone mad by now, I mean like properly terminally destructively mad.
So yes, happy new year to all, I will be being drugged up as usual at 10pm and going to bed. Sorry for being depressing, but I do feel like I’m in a living hell. Am extremely grateful for blogging as an outlet for these feelings though, as it’s stopped me doing anything stupid and destructive to cope. Good riddance to 2012, it’s been shit. Am hoping and praying for a better 2013, but right now I’m not feeling too optimistic!
Jen xx
Different 