So I finally have had some good news. My PIP, which is the benefit I get for my disabilities has been renewed at the higher rates indefinitely. That’s a huge deal for me. It means I get to keep my car and I’m not going to have to reapply every 3 years. I opened the letter this afternoon and burst into tears I was so relieved.
Part of me though is angry and frustrated. The benefits system in the UK has faults. And a lot of those faults lie with the people whose job it is to decide “how” disabled you are. I count myself lucky that I can just about cope on a daily basis. All be it with a lot of help and sometimes more spoons than I have, but I cope. I have a friend up in Scotland who is unfortunately in a much worse off state than me. She broke her ankle quite badly a few years ago, and as a result of neglect by her hospital, it never got treated right and to this day, M has to crawl around her flat as she’s unable to put any amount of weight through that food. M had a motability car, like me. And she was receiving the higher rates of what PIP used to be, DLA. When it came time to change DLA to PIP, she wasn’t awarded the marks she would need to continue getting her car and she has had to send it back. Now this to me is wrong. On so many levels. M suffers quite badly with her mental health, and her car was the only means of independance she had. She was able to get to wheelchair rugby in her car, was able to see family and get shopping in herself. Without her car she’s pretty much stranded in her flat. And this is why I get annoyed. I’m fortunate that I’m nowhere near that poorly. Thank goodness. But yet I get the marks needed to be allowed to keep my car based on my heart and lung issues? Nope. Not OK. But how on earth do you argue with these people? She appealed it and got nowhere. Went to MP and got nowhere. It’s shocking. I can’t understand how anyone can look at M and not see how much she struggles.
While I’m beyond appreciative of the help I do get, there is that bittersweet feeling that people who are worse off than me don’t get the help. It’s frustrating.
I know I have faults. Heck, who doesn’t? But at what point do your faults become more than just faults? When do they become big problems?
I’ve got a big gob. I’m not going to lie. I never know when to let things lie and I tend to moan far too much. And it’s at the disadvantage of my friends that this happens. Most recently it’s been about not being able to not offload on people who are facing much more difficult battles. I don’t like getting into the “Who’s more poorly” argument, but I’m extremely lucky that at the minute, my physical health is reasonably stable. But not everyone has that luxury.
I don’t mean to upset people. I don’t mean to cause hurt or frustration. I don’t want to be the person who nobody wants to be friends with or talk to because all I do is bring them down. I love my friends to the ends of the earth and back. And they’ve always been more than supportive with everything going on in my life. They’ve avoided doing things because they know it’ll upset me, they don’t talk about certain things because they know it triggers my PTSD. But I can’t reciprocate that. I just keep rubbing salt in wounds. And it’s killing me. I don’t mean to do it. And more often than not I end up sitting getting furious with myself because I know I’ve screwed up. I know from the second I hit “Enter” on my phone or laptop. But then the damage is done. And I’ve upset another person. I do it in real life so often as well. I’ll bring up a topic Cookie doesn’t want to talk about and don’t let it lie. I don’t know why the fuck I can’t just let things lie. My head is always trying to get to the bottom of something, or if someone’s upset I’ll make a joke but not realise that’s not the time for jokes. I’ve got no tact. I’m rubbish at realising what’s appropriate and what’s not. I’ll keep on at Cookie about her room despite the fact she knows it’s a mess, for fuck sake, she sleeps in it. She sees it when she wakes up in the morning. I keep mentioning my PICC to Sophie despite the fact I know she’d give her left leg and probably her kidney to have a PICC. I’ll bring up things with dad that I should’ve let lie by now, like how let down I felt by him going to Cambodia and leaving me to deal with James on my own.
I’m going to end up causing people to not want to talk to me, ever. Maybe that would be better. Then I can’t upset them.
I just wish they knew I don’t mean it. I don’t mean to make them hurt. I don’t mean to make them angry.
I’m finding my blog a good way of getting things out of my head and into some kind of order.
Today’s been difficult. I’m having problems with my psychosis, and the only reason I know that at least 50% of it isn’t real is because I know that James is dead. I’ve had both him and Claire stood around my bed for most of the day shouting at me and telling me how much of a shit human I am and how everyone would be better off dead. I’m seriously struggling to not believe that and ignoring it. I’m trying distractions, colouring, movies, all sorts. I just can’t ignore it. I’ve been working out all the different ways I could do it. How much of each tablet I’d need to take and how long I should wait and how to make sure I’m not found.
My other problem is that there is the possibility that Claire is on the ward. She could’ve done a patient transport from A&E to this ward. I can’t persuade my head of anything, and the idea that Claire wouldn’t turn down the offer to come on here and make me miserable. Telling me i’m imagining things though isn’t going to help, because it just makes me angry. I need logic. I need proof. James isn’t there because he’s dead. That makes that one a bit easier. I’m not going to be able to ignore them forever, and the chances are there’s going to be more voices soon. And then I definitely can’t get rid of them and not act on the thoughts and voices. I’m scared.
My friend Oliver sums up psychosis much better than I ever could. While i don’t get the delusions of grandeur, his bit about people hurting him or his loved ones, about people being in his flat and how he explains the difference between chronic and acute psychosis resonates loudly with me.
Source: I have psychosis and no I’m not going to hurt you.
Two blogs in two days, blimey.
I’ve been thinking a lot today about how my health and treatment compares to friends. I think one of the things I need to work on is not comparing my health and treatments to others.
I’m fortunate in that I have a fantastic GP, chest consultant and support network. While it’s going to take a long time to be seen by psychology, I’ve got a fantastic GP who wouldn’t hesitate to contact my psychiatrist in an instant if he was worried about me. I spent a year having my head managed by my GP and he was able to start so much and sort so many things out for me that most GPs wouldn’t be willing to do. And I still moan. And I still get upset when other people get better treatment than me. And it’s making me so fucking angry with myself because I know that I do it, and I know that it upsets my friends. The fact that I can walk into a GP appointment and straight away they’ll increase my anti-psychotics, or will offer me any support they can is quite amazing. And I don’t think I realise just how lucky I am. Manchester may have the worst mental health care in the country, but once I was in the system, they’ve been mostly helpful with my care. My GP has gone above and beyond for me, and he’s the only reason I haven’t left my current GP practice as the other GPs and receptionists are all arseholes. But Dr N has been amazing and I couldn’t ask for a more understanding, caring GP.
I have a chest consultant who has written me a fantastic letter for A&E, given me a PICC line pretty much constantly for about 3 years now and I still moan when I have to have a cannula, or don’t get a Port-a-Cath. Yet my best friend has to almost prove how poorly she is to get IV Aminophylline when she’s poorly and has had times in A&E where it’s taken ~20 attempts to get a cannula, and then they gave up and put a central line in. Whereas I got a PICC line the minute access started becoming a minute issue. It’s beyond the levels of fair. I had a new PICC line put in today, and ended up breaking down in tears in the Interventional Radiology theatres because it was so unfair that I was getting a PICC and Spud doesn’t. Despite being under the care of the same consultant. Don’t get me wrong, things can be shit, but when they’re shit I generally get sorted fairly quickly and don’t have to fight people for care as far as my physical health is concerned. I feel like a pretty shitty human to be honest. I know it’s not my fault where I live, but I feel like I could handle it so much better. I almost feel as if I gloat to my friends and rub it in their faces that I get the care they so badly want. I don’t intend for it to come across like that, in fact the fact that i’ve realised I do it has made me angry in ways I can’t even explain.
I want everyone to get the same treatment. We all get treatment under the NHS, so why the fuck does your postcode dictate how good your treatment is? It’s bloody ridiculous and it makes me angry and frustrated.