Health Update:
Picture of my Hospital Prep bag.

I took this picture earlier while getting ready for a hospital appointment I thought I had today. It’s the contents of my Hospital Prep bag which has two bananas, strawberries, grapes, a new book to start reading, notebook, planner for follow up appointments, pens for doodling and my travel med pack with pain killers of varying intensities and stomach meds. And of course the referral letter I managed to dig out after trying to get through to the appointments office for 4 hours yesterday. The picture was for posting in chronic illness groups I’m in to discuss what we all bring to the hospital for outpatients appointments that say you’ll be waiting 2-3 hours.

But it turns out I was wrong. I got the bus there and rushed to the outpatients department, suite 3, then to outpatients department suite 1 because they have moved, to be informed I had read the day incorrectly and my appointment was actually tomorrow. A staff member standing next to the receptionist laughed at me and called me a “Silly Girl”. I explained that this appointment had been rescheduled by them 3 times (I was referred there 15 months ago) and that I have an appointment in Vincent’s tomorrow at 1 so I won’t be available. She rescheduled my appointment for August.

I then sat down around the corner and looked at my Vincent’s referral letter and realised I had got that date wrong too. It’s not tomorrow, it’s in August. Ironically now the day before my just rescheduled James appointment. I had brain fogged and smooshed the two dates together and managed to get them both wrong. I started to cry. I walked to the bus stop and waited for 5 minutes but was still crying and was so embarrassed even with my big sunglasses on and I didn’t want to pay bus fare again for my imaginary appointment. So I turned, took my stupid hospital prep bag and walked home.

I’ve posted before about how few resources there are for chronically ill people and how because health is presented as to be kept so private, you have to research and organise everything yourself. So at a point where you’re very sick, coping with high pain levels, brain fog, pain related depression, limited mobility, you’re also trying to research treatment and face down doctors and coordinate this pile of appointments. Transport to and from, all the stuff in the prep bag, times, dates, trying to coordinate emotional support, to ensure you have the time and space to rest afterwards and between appointments trying to coordinate a support network to make sure you have access to medication and food in case you’re suddenly immobile for days or weeks (or 4 months as was the case this Winter). You’re also trying to manage medication and create a daily structure (which is vital for managing these kinds of chronic illnesses), which in my case involves 8 alarms for eating, taking pain meds, going to bed because it’s really hard to remember when you last ate or took pain killers when you’re brain fogging or have really high pain levels. And on top of that trying to maintain friendships, work, pay bills and rent, all the not sick stuff you had to do before.

It’s really really fucking hard sometimes. And today I really felt like I was finally getting the hang of this. That with the alarms and the prep bag and my pain levels being more manageable I had finally gotten my shit together. But no. I didn’t have an appointment today and I wasted all my spoons going somewhere I hate when I didn’t even have to be there. I fucked up.

And that’s ok. Because this is really fucking hard sometimes.

So I’m going to try to relish the fact that I don’t have to be back in hospital before August. I’m going to lie in bed and eat my grapes and strawberries and read my book and stop crying. Because this is really hard sometimes and I think it’s pretty understandable to make mistakes. I think I’m doing ok.

Silly Girl signing off x

hauteproportions  asked:

Ok girl, you're awesome and you've never let me down before. I'm doing plus size lumpy space princess costume for Halloween and I just realized, oh shit, I totally need a purple wig. I want something cheap that won't look crap, that can be beehived or back combed or something. (also if you're feeling adventurous the rest of the costume would be deadly too...) xx


Well if you really want cheap, you’ll probably still have to work on the hair a little bit after you get it (remove the excess shine, etc.) but otherwise I would think it just needs to be very long, and somewhat thick.

Deep Purple Wig

Heat-Resist Curly Purple Wig

Heat-Resist Light Purple Wig

I’m a little worried about any of those arriving on time (and also, being thick enough, as I don’t really know what it takes to beehive). Whatever you decide, try to find something that clearly states “heat resistant”, so you know for sure you can work with it. I would still be a little worried about burning it up, but you’re probably smarter than I am, heh. Back-combing might be the overall safer choice.