Ok, so I envisaged my next post to be about Rowan's birthday and how wonderful/amazing/miraculous he is, and no doubt in a few days time that is exactly what I will be posting, but I have been sent several requests asking about Rowan's 'medical' side. Like what half the words I use actually mean, a kind of glossary with pictures or something. Which I will be working on, for the less 'medicalised' readers, and pictures always help, what is it they say, a picture paints a thousand words? But something else has been bugging me since I wrote my first blog. See, I wasn't completely upfront with you all. There is an elephant in my room. While merrily writing about the children and the big impact they have on life, I failed to mention another very influential part of my life. While reluctant to talk about specifics, I feel I should say something.
There is a group, a movement, a revelation if you like. It's called 'Time to Change'. I wonder how many of you have seen it? It's about my Elephant. Mental Health. Ok so I'm pretty sure that almost every Mum with a child (or more) with complex needs, has problems with mental health at some point. But I have had my mental health problem since before I even thought about children. Before I even knew it was a problem. In fact, I didn't really realised I had as big a problem as I do, until Cameron was about 6 months old, and I was signed off work for 2 weeks with stress. I was 20. Cameron was in and out of hospital, I was desperate not to let my employer down, I loved working, but something had to give. I had a kind of meltdown. I was signed off 3 times in a row, and the GP sat me down and told me he recommended I gave up work and looked after myself and my 'sick child' and my 3 year old. He prescribed me a councillor and some anti depressants. How many people have been in that situation? A lot! I don't have statistics, but I guess the chances of you being prescribed anti depressants when you have a complex child like Rowan (and a lot of his little friends) are rather high.
Depression is crippling, crushing, hopeless, it's awful. And anyone who says otherwise has never really been depressed. I have 'clinical depression'. I really know what the difference is, or how they diagnose it, it's just a box that is ticked on a piece of paper (one of many but I will get there). So I take the anti depressants that are kindly sent my way, tweaked every few months, changed, and I don't feel any different. I think about suicide all the time. Now, I really don't want pity, and I don't want a list of reasons why I shouldn't feel like that, or reasons I shouldn't contemplate it, because I've been there, done that, heard it all, and I know. But I can't change how I feel. Unfortunately. Depression is a chemical imbalance. It is not a choice. I don't 'choose' to feel this way, it's not an attention seeking behaviour, I don't LIKE being negative, so much so, I will pretend to the world that everything is fine, normal, wonderful even. I'll pretend to laugh, and cope, enjoy life, but it's all just a mask. Underneath, well, no one really wants to see underneath. I don't let many people in, because, no matter how many people tell you 'it's ok' 'people accept it' it's rubbish. No one wants to hear it, no one wants to spend time with the depressed person sucking the life out of everything and everyone. And I understand that.
Depression isn't the only thing I suffer with though. Or have problems with. And I wouldn't even say it was the biggest thing I struggle with, although the suicidal feelings and thoughts and sometimes actions are quite distressing, I make a choice. I am fairly in control. I think the biggest thing I struggle with, is the thing I talk about the least. It's something that no one understands, not even the 'professionals'. It's something I have struggled with continuously for the last 5 years at least. And even as I know I am going to write it down for the world to see, I am worried about the comments it will bring. I have something, which can only be called by the professionals, as 'psuedo-psychosis'. Ok that wasn't so bad, mainly because no one will really know what that means. Basically, I am in a state of psychosis, but not at the same time. Confused? Let me try and explain, while you all read in horror and think I am a complete nutcase. And I'm fine with that, because I also believe I am a nutcase. I see things and hear things that aren't real. So, here are people wondering if I am schizophrenic, and the answer is no. I see people (no not dead people), I see objects, I see written things, animals, I hear people but don't see them, I seem them but don't hear them, and then I have a group of 'people' that I both see and hear and I can have a conversation with.
Ok so it sounds weird, and I'll admit, it's weird. But, this is what I live with. This is the reason I won't always answer you when you talk to me, or why I don't really like social situations. It's the reason I won't talk to strangers, because how do I know if they are real or part of my 'illness'. I have made a few mistakes, ok more than a few, where I will talk to something who's not 'real' much to the amusement of the general public, and I leave quickly mortified. The things some of these people say, are negative, degrading, nasty, scary, threatening. They are not positive people at all. Ok so I guess this is where I give an example, while trying to preserve some kind of.....Ok I lost that already. I have applied to do an OU course. Am I crazy? Yes, and I have the papers to prove it. Anyway aside from that, my mental health worker phoned the OU for me to find out about financial discounts, and more information etc. Why did they phone and I didn't phone myself? Well, I don't like making phone calls. So my worker phoned for me, and they said I needed to register that day, my heart skipped a beat. I don't like making phone calls, and to have to make the phone call while someone else is watching, intently for the signs that I am certifiably crazy, makes it even harder. Bear in mind all this woman wanted was my name, date of birth, address, what course I wanted to do, and what my 'qualifying benefit' was so that she could give me my PI number. Simple yes? No. To start with there is just me and my mental health worker in the room, isn't there? Nope. There are an 'extra' 4 people in the room. With that 'whatever, why bother' look. I get handed the phone. And this is what I hear, 'I don't know why you're bother, no one will want to associate with you' 'You'll never be able to do it, you can't even manage a phonecall' 'Just hang up the phone, you'll be dead before you complete it anyway' 'That woman is only talking to you because she feels sorry you need a mental health worker to phone for you' 'You'll never amount to anything, remember, you ruined your life, and you still are'. I guess you get the picture. I don't know how the 'general public' will react, ever.
Someone once asked me what it felt like. Ok, so that was just one phone call but it happens 24/7. You know how sometimes you think you hear the phone ringing, but it wasn't? Or how in town you look around because you thought you head someone call your name? It's a little bit like that, but constant, with no break, and it's been going on so long that sometimes it's hard to tell what's real and what's not. If you want to know how it feels, sort of, try this. Put some music on headphones, quite loud, but not so loud you can't hear anything or anyone else, but loud enough that's it's not easy. Then put the TV on, but turn the sound off. Do not look away from the TV. Then try and have a conversation with a friend. That's sort of how I live my life. How do I do it, is a question I get asked, and the answer is, well, I have to. I can filter some of it now, I can ignore it to an extent, I don't always win though. In fact I probably lose more often than I will admit.
The pressure is immense. Then throw into that a complicated child who needs IVs, and meds. Concentrating to draw up meds, or connect the TPN, is exhausting, but I can do it. Those people who need to know what I struggle with, do, and I have 'back up' plans for a 'bad day'. And infact, the person who needed to know most, was the person I dreaded telling most, but has been the most open minded person about it all. It's not a lifestyle choice after all. I'm sure someone is wondering, if the medications they use for schizophrenia would work to eradicate the 'psuedo-psychosis'. The answer is yes, but no. I do take anti-psychotic medication. I have been on it for years. I have tried a couple of different types, but one of the biggest side effects is sedation. I can not be sedated with Rowan's needs. So I take an anti psychotic that does not sedate, at the maximum dose that I can take in the community. And it takes the edge off. I seem to have a huge resistance to medications.
From Pseudo-Psychosis, to Anxiety. So it's fairly obvious that with all that going on, and clinical depression, that anxiety was bound to make an appearance too. I have a fear of going out. I have a fear of new places, new people (see above). I have a fear of underpasses (subways). I have a fear of noisy or busy places. And this manifests itself in panic attacks. Now, if you've never had a panic attack, it feels like you are dying. You can't breathe, you feel like you're being crushed, you can't move, you can't do anything. You are rendered useless, so you are completely vulnerable to whatever you are scared of. It's debilitating. I am fairly in control of this now. And situations that I know I just can't deal with, I either take someone with me (which helps, as distraction) or I dose up on Diazepam. I hugely struggle with trips to GOSH for Rowan. On the train, to London, it's busy, it's noisy, it's restricted, and all the anxiety around Rowan and his TPN and feeds on the train etc, it's a recipe for disaster. Now, most people will avoid whatever causes the panic attack. I don't have that option. I can not avoid a GOSH appointment. I have to go. So I take diazepam. I have all the breathing techniques, all the distraction stuff, and it helps, sometimes, but there is always a situation I struggle with, or in.
Just in case you are wondering if that is it, no. I have flashbacks too. These are triggered, they are not generally normal. Basically, for a few seconds, I literally go 'back' to an event that I would rather forget and 'relive' it. I know a lot of my triggers, so try to avoid it (obviously!) but a few times a week (on a good week, a few times a day on a bad week) it happens, and leaves me exhausted, and emotional, generally a wreck. I will lash out, shout about stupid things, I just react badly. Sometimes very badly. These 'events' are very negative events. And I'm not prepared to talk about what some of those 'events' are, that's a little too much information, but if I wasn't feeling suicidal before, I definitely am afterwards.
I have bad 'coping' strategies. But I get from one day to the next, one way or another. My kids are looked after, the are fed, and clean, and all their medical needs are met. And to be honest, most people don't even realise I have things other than the kids to worry about. That is what I want. I don't want pity, or praise, or admiration, or recognition, this is the way my life is. So what do I want? Why have I written this for the world to see? What has made me look a complete nutcase to the whole world? Well, I just want a little bit of understanding. When you talk to me and I ignore you, I don't mean to be rude. When I swing from seeming 'happy' to 'distant, withdrawn, negative' don't take it personally. My mask just slipped a little. I do the best I can, but even superman has a flaw.
The other reason I decided to speak up about it, is because, because of my mental health, we have been through a child protection conference. Because of my mental health, someone decided my children were at risk. What happened was, I overdosed. For the first time in my life, I told someone what I'd done. I went to hospital, got checked out everything was OK. Came home. I went to respite the next day (where I go, on my own, 1 night every 4-5 weeks, for me to recharge my batteries, press the reset button). Everything seemed fine, I expected a fall out, but heard nothing. I went to respite and said to the workers that although I felt an idiot for what I'd done, I felt happier that I could tell someone, and my world doesn't fall apart like I thought. WRONG. On the Monday morning, a random group of people entered my house, and told us we were going through a child protection conference, because of my actions. No one could really explain how me overdosing was putting my children at risk. Lee was here, another adult in the house. My children were safe. This was not enough for this one particular person. We went through the horrific process of Child Protection. We got through it (although it took 5 weeks, not the 10 days the government says it needs to take!) and it was determined that the children are not at risk. The risk is to me. Not the children, and that risk is something my mental health workers carry and manage. But the damage the process has done, is irreversible. If I struggled to talk about my mental health before, it's practically impossible since. I am never honest, which is why I have to pretend everything is ok. At least that way the only person it really affects is me.
So this is the Elephant in my room.......mental health. It affects every single thing I do in my life.