So Cookie and I went camping in Wales for the first time on our own. And my first time ever camping. I’m not going to lie, I was massively apprehensive about it, pretty much to the point that I didn’t want to go. But I’m so bloody glad I did.
We went on Monday, and although I had several hospital appointments, we managed to get away by about 2pm. The car was literally full to the gills. To the point the dog ended up in the passenger seat footwell. Needless to say I was a bit stiff by the time we got there!
We got there about 5ish on Monday, and it took us a while to unload the car and set up the tent and whatnot. Then we went for a wander around the campsite to figure out where the toilet block was, where the water tap was and just to get a general idea of our bearings. We got some chips on the way back and sat and nattered as the sun went down. It was a fab end to the day.
I’m not going to do a day by day thing, because to be fully honest, I don’t remember what order or what day we did things on. I know that I spent a day at the beach with Cookie and Lizzie and for the first time in as long as I can remember I was able to run around and chase Lizzie up and down the beach and go in the sea with her. It was the best feeling ever and I can’t describe it. There’s been so many times I didn’t think I was going to be able to do that again, be it during hip problems or asthma attacks, at times I honestly believed I was never going to be able to do some of the things I enjoyed again. I paid for it the next day, but it was so totally worth it.
We spent a lot of time just walking up and down beaches, and went to Conwy which was good. We got massively pished on though and I ended up having to walk back to the car in my shorts. Thankfully the trousers I was wearing zipped off halfway so I wasn’t walking around totally drenched. Mum would murder me if she knew.
It was a really good trip and I enjoyed it a hell of a lot more than I expected to. Infact, for the first time in as long as I can remember, I was happy and enjoying myself for several days in a row. People would ask how I am, and I could honestly answer “Good”. It was good to just be able to get away from all the medical shit, uni problems, money worries etc. I don’t remember the last time I had that. Unfortunately it’s back to earth with a bang as I’m now swamped with uni revision and hospital appointments.
So here’s to actually passing my exams…
So I’m meant to be revising for my exams in August, but absolutely nothing is going in. I spent about 2 hours today trying to get something to go in, but brain was having absolutely none of it. So blogging is next in my long list of procrastination techniques.
So I have a bucket list of things I’d like to do, ideally before I’m 30, but not specifically. Things like go SCUBA diving again, run round A 400m track etc. I think I’ve got to accept the painful truth that I’m not going to be able to do that, and so I’m going to have to amend my bucket list. I’ve been having a think about it lately and am kind of struggling to come up with ideas. And I think that ties in with my depression. Not being able to see a future is a very real side to depression and it’s one that I experience quite regularly. I can just about see me graduating from uni, but even that is difficult to accept as a possibility. I’m still waiting to see a psychologist (we are down to 17 months now), but they don’t know what to do with me in the interim because they can’t really leave me as I am for nearly 2 years. Oh, wait, they do it all the time. Dickheads. Hopefully they’ll come up with some kind of plan before then. Because the strain this is putting on my friends, never mind me, is getting ridiculous. They’re always worrying about me and I know they do it, even when they say they aren’t.
Things are really tight money wise this month. I’m in between last student loan and September, and then them putting my ESA up because I’m on holidays. So until then they expect me to cope on 70quid for 2 weeks, including bills etc. I’ve decided I’m going to make a seperate bank account when I get my loan or any money and just use it for bills so I don’t end up in as much of a mess next year. It’s affecting my sleep, my general mood, I’m getting snappy when Cookie asks me something totally innocent and I’m just being a shitty friend. Gotta try and cough up about £350 for bills this month because of a few stupid mistakes on my part (I bought patient line in hospital so I could watch the one love concert in manchester), credit cards that need paying and phone bills and virgin bills etc. It soon adds up. I just need to get over this bad patch. Hopefully then my sleep might wise up as well.
I ended up in hospital in May with Idiopathic Intracranial Hypertension (IIH). For the non medical of you, it basically means there’s too much fluid in my spinal column and brain which was raising the pressure. I went to an appointment at the eye hospital and they sent me straight to A&E. Was a bit freaked out, not going to lie. They did a lumbar puncture, which is how they treat IIH so they can get rid of the excess fluid, but unfortunately I got severe side effects from it, in that I couldn’t lift my head off the pillow without throwing up. This went on for about 5 days. But I couldn’t keep any of my medications, including my steroids and asthma meds down, so I was having to have IM/IV anti-emetics so I could keep them down. It was absolutely fecking awful because I was in the main receiving hospital for the bombing at the Manchester Arena and at the time was on the Medical Receiving unit who ended up taking some patients. It totally fecked my PTSD and I’m still struggling with it now. But thankfully I got home after just over a week and then spent a few days in bed trying to acclimatise my head to sitting up slowly. I think I should’ve taken out shares in the sick bowl people. But I was only home 1 night before I was into Wythenshawe for my elective. I got a bit upset and had a bit of a breakdown about the amount of my life that revolves around hospital at the minute. I just seem to have appointment after appointment at the minute. Suppose it’s better at the minute than during uni, but still. Urgh.
I miss home at the minute. Just want to see my mum and get a big mum hug. 😦
This is one of those questions that nobody ever seems to have an answer for. They always tell me to just ignore the voices in my head. It’s really not that easy.
Today is a difficult day. I’ve had my PICC line put in, and while I’m happy I’ve got it, it’s annoying me that I need it. I know that I need reasonable access and that I spend a lot of time in hospital, but it’s a constant reminder that there’s something wrong and it’s a visible reminder. People ask me about it when I wear a t-shirt and forget to cover it. And I don’t like having to explain it to them, cause then you get the “Awww I’m sorry to hear that” stories. Having it is both a blessing and a curse.
My head’s being especially shitty today though. And there’s only so long I can try and have the argument of “you’re wrong, I’m not a shit person” before I start not have the energy for it. Which is a bad thing in itself. I’ve been struggling with my chest and I’m not sleeping fantastically, so I’m tired and feel rough. Never a good combination. I should be revising but the stuff I’m revising is ball achingly boring and I just can’t be bothered. Learning about 15 different fungi groups and how they all reproduce and grow just isn’t my idea of a party. So I ended up building lego with loud music on in an attempt to shut my stupid head up. Doesn’t seem to be working though, so I think I might just give up and go to bed. Seems the best plan, and the safest right now to be honest.
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.