I hate hospital

Yesterday, I spent the morning in the RAH Rheumatology department having made the effort to get there on time for a 9.30am appointment. I think they are in cahoots with the horribly expensive carpark out the back because I then got stuck in the increasingly crowded waiting room for a few hours before anything happened. It’s been ages since I’ve had a checkup for the Fibromyalgia and other issues so my doctor wrote a referral. I was surprised to find myself on the verge of a panic attack in the waiting room – as sick, distressed woman after woman shuffled through the doors to be stuck in the waiting area. I remember when this was my world, and that dead end road of hoping that one more test would make sense of it all and give me a treatment that would give me my life back. Nowadays I feel like hospitals are dangerous places, as if I’m going to get beached there and not be able to get out again. The appointment was embarrassing and miserable, I got poked in a lot of painful spots and told my fibro is still active, with a general air of ‘what do you expect us to do about it’ and trying to come up with interesting new symptoms which was all they wanted to hear. I hate hospitals.

Someone asked me where I worked and when I said mental health they told me all about a time they were assaulted by a patient with a mental illness. I really wish people wouldn’t do that. They were also baffled by the concept of peer work, that I was working with ‘sick’ people despite ‘having no qualifications at all’?! Some days I just want to crawl under a rock.

The stupid ticket machines in the carpark both refused to read my credit card, ditto the machine behind the counter with the operator – baffling as I tried it again tonight and it worked just fine. I pulled out my eftpos card only to be told they couldn’t take that and there was apparently no eftpos machine around for miles. I pulled out all the change I had and was two dollars short, which was kindly donated by the gentleman standing behind me in the line, and I felt so embarrassed I couldn’t even look him in the eye when I said thank you and then when I walked away I felt bad about that too.

That kind of set the tone for the day really, I got home too late to try and nap before group, my face and teeth still hurt, and later I went out in the evening to a party where I didn’t fit in and had the most severe anxiety I’ve had in awhile. I’ve done some training with Radio Adelaide, the local community radio, which is awesome, and I’ve been developing some great skills that are very useful in my peer work. But I’ve been struggling to find a program to work with and then horribly sick for weeks and flaking out on them all over the place. It was the stations 40th birthday today and I was really pleased to go along and celebrate, but also feeling stressed from the morning and somewhat of an impostor since I’ve barely done any work with them since graduating from my course. I don’t fit the existing programs that need new people on board very well, so I’ve been feeling guilty and insecure and anxious as hell.

‘I hate myself’ ran on a hideous loop in my head all evening and I spent most of it hiding in corners and trying not to cry. Tonight I felt very limited, painfully aware that I didn’t fit in or feel at ease at all. Several people who had clearly met me before said hello and I didn’t recognise any of them, which was really distressing. I organise a lot of my life very carefully to avoid being incapacitated by awareness of how physically sick or ‘mentally ill’ I am, the reminder this evening that in new territory and among a lot of new people I am completely lost memory-wise was painful and humiliating. Stigma bites hard and I’m trying to hide how stressed I am, afraid of being labelled as the ‘mentally ill’ one, even though in my working role I’m happy to stand up in front of rooms of people and tell them I have a mental illness. I felt like I’ve been able to find a niche in art, where I’m just excited and content, and mental health, where I’m passionate and feel competent, but that out there in the rest of the world I’m still a fish out of water.

I also finally realised that one of the issues that stresses me about volunteering at the station is just about mobility. It’s not on my local bus route, and there’s often no nearby parking available. While I am mobile these days, I still have limitations. On my good days I can walk from my bus stop to the station. On my bad days I can’t. Without an easy access point it is always stressful trying to get there, trying to gauge how much extra time I need to leave early by to get through the door when I’m supposed to be there, or if I’m well enough not just to make it there, but to cope with the walk back again. I don’t think of myself as someone with mobility issues but they do affect my life and in a situation like this I’m stressed and frustrated and taking it out on myself for not being organised or committed enough instead of recognising that mobility issues are a difficulty for loads of people and not something to feel bad about. My poor brain gets all tangled.

So I’ve had a pretty lousy day. I’m glad to be home. I’m glad to have art projects to focus on. It was nice that various people who may or may not have ever met me before were friendly and nice to me at the party. It was a relief that I don’t think anyone picked up how stressed out I was. I feel like I live in a bubble world where how I function is normal, and it’s painful to smack into the rest of the world where hearing voices is freaky or not being able to remember someone is rude as hell. I am so grateful for the bubble though, I didn’t used to even have that. It means the world to me that I feel at home and like I belong and can be the best I am, somewhere on this planet.

Now, to just stay out of hospitals.

And for those of you who seem to get confused about this; sharing these experiences is not an invitation to tell me how I should be thinking, feeling, or managing any of my life ‘better’. To all the rest of you lovely people, especially anyone feeling neurotic – I’m not barking at you. 🙂

I appreciate hearing from you

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