Time to pack…. again

IMG_8439It’s 17:20 on a sunny Sunday afternoon and I am enjoying my last few hours of “freedom” before checking into the Royal Brompton for a week worth of specialist tests and treatments.

As most people know since July 2016 my Asthma has moved to the most volatile it has ever been.

I can’t say I am looking forward to my stay there, I am going with mixed emotions.  It has been nearly a month since I was last discharged from ITU at my local hospital after being ventilated and loosing goodness knows how many days that time.

Decisions where made after spending the majority of 2017 in hospital battling my Brittle Asthma to ensure that I could be made strong enough to undergo the masses of tests they need to subject my body to. So far this year they have tried a couple of times, but due to them either triggering attacks or medication doses being too high they have had to abandon them.   I have been working really hard with my local teams to get medications down to a place where they can be stopped to give true readings, where I am physically strong enough now to complete the tests with less chance of having to be ventilated and back in ITU.

I am however looking forward to FINALLY having the full action plan moving forward, we have thought for a while we know what is causing this latest flare up of attacks, we also know how we think we can get it under control. It is also nice to be able to pack….. and not an emergency grab bag (which I always have packed), but to know I am there until Friday lunch time at least, that I can pick and choose my clothes, entertainment and even snacks. It is almost a luxury.   As I often mentor younger Brittle Asthma suffers and I speak on forums I have decided to try and record as many of the tests we go through, the effect on the body, how they feel and alleviate some fears for some people who haven’t gone through this before, so what better place to start with what  a girl pack for a week’s stay…..( or even in an emergency hospital bag? most of these items are in my emergency bag too) oh and why they are essential

So first up… clothes.

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Seems a lot doesn’t it??? Well we have for 5 days:

  • 4 sets of PJs, the hospital beds are plastic, you get hot and sweaty easily over night, sometimes you have bloods drip on them from tests etc, It is just nice to be able to pop them in a bag and have clean ones for the next night. (my emergency bag only has 2 sets of PJs)
  • Robe/Dressing Gown. Well trust me, this will come in use from covering up on a trip to the bathroom or if you have to wear a LOVELY hospital gown for a procedure and be wheeled around to give you a little dignity .  It’s also good to help you warm up a little if you need to.
  • Slippers, hospital floors are dirty, toilet floors are dirty, I always have slippers or cheap flip flops to wear as slippers to make sure I am never walking around bare footed.
  • Gym Kit. This is only for this bag, we are going to be doing some work with running and the effect on my oxygen, breathing and see how my exercise has changed.
  • Now it is currently summer here in the UK and for once its a little warm, so I have 2 pairs of Harem pants and vest tops.  (These are ALWAYS in my emergency bag), These outfits are lightweight and really good all year round as you can basically sleep in the should you need to, but they are good for lounging around in.
  • 2 pairs of shorts and tops, as its nice and it s little bit of a different stay
  • long jeans and a top, this is normally to go home in (again a going home outfit will be in my emergency bag).
  • I have 2 pairs of flip flops
  • 2 Cardigans which are long and baggy and will go over IV lines if needed… that is pretty important (I always have a cardigan or baggy hoody in my emergency bag).
  • Of course I have comfy underwear

What you can tell from above is that you have to consider on most stays what is going to happen, or could.  I normally pack both now and in my grab bag, sleeveless tops, this is because we often have 2 or 3 IV lines in, plus monitor leads and quite often an arterial line.  Hospitals are often hot, the beds are plastic, windows often can’t open and Air Conditioning isn’t always an option.  I go for thin options whit a going home outfit that is seasonal.

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Next… Toiletries, the only thing different here, is I pack travel size in the grab bag (oh and I don’t pack my hairdryer, and make up).  These are pretty self explanatory, but in an emergency bag essential is baby wipes, when you cant shower or bathe need a quick freshen up, they will make you feel a little human, also dry shampoo.  For this stay though I can pack what I would normally use in a week. Most hospitals have towels as as there are few places to dry them, I say just use the ones there.

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So that’s pretty much the bare essentials needed, so after jamming that in a bag I get to add things to keep me entertained.

Which if you know me… you will know I get bored very quickly.  Now yes I know I have people popping in to say hi and I have the luxury of escaping a little more than usual, but I am also less sick than I usual am whilst in hospital.  I tend to only ever read magazines in hospitals, most the time I can’t stand them. They are easy to flick through though and pass some time. So always good to pick up when you are an “inmate”, also when you are done with them you can pass them on to others to help them cure boredom too.  I always have a couple of puzzle books in my emergency bag, I use them same as magazines a little boredom filler and something you can go back to easily.  Books are rare for me to take in, I normally find it hard to focus on anything more than a magazine article or puzzle. Of course there is my iPod and iPad all charged and ready to go. Those of you that know me, know that these are always in hospital with me, I struggle to sleep, so these along with my beats, wifi and netflix have saved my sainty so often.  This time though I have a couple of unicorns to make too ….. silly gifts people buy me that make smile and I finally have time to make them.
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I also have my laptop to allow me to blog and deal with things that are going on outside hospital.  A set of Hospital discharge notes (these are ALWAYS needed, please ensure you always have some to hand paramedics and Doctors, these should also include a list of medications etc and essential information in your emergency grab bag.  This folder and these notes have saved my life when I cant communicate).

I have my purse, disabled parking bag, sunglasses, a couple of my special Bio Filter masks,, fidget cube (this is also an essential for distraction when being treated). I have my two little teddies I take every place with me and some loose change and cash. Do not forget your chargers 🙂 I always have a charging bank in my grab bag and charger, so things can be charged without needing to be plugged in. You need pens too, sometimes I also have a note book, its easier to note down test names, things to ask the consultants, items you need from home etc.

Its important also in your grab bag to ensure you have a couple of bits of cash, you know how many times late at night we have been in RESUS and a drink or food is needed, the only option is a vending machine and no one has had change on them.  Car Park fees, papers, phone calls if mobiles are dead.  Its always needed.

So next up is snacks, in my emergency bag I will normally have a couple of snack items, a bottle of water or something. This is again because you don’t know what time you will be taken in etc. I also have a lot of food allergies, this time though I have just had space in the bag so made sure I have my oats, seeds, berries and honey (which I love for breakfast) along with treats and snacks.   You can see its mainly things you can’t grab from a hospital shop that easy. When I am in a long time people are always dropping in fruit and the things I love to eat.

The the last thing need to ensure you pack is medications, this should alsFullSizeRender (9)o be in a grab bag if you can, but normally you can sort these out in an emergency or we keep them all in the same place. For this stay and many others it has been vital I have them. I run strong doses on medications they do not always stock, pharmacy is not always there and well thankfully I have them in the bag so I can continue my doses.

This time though it is a little different as this week is all about what we are testing for and whilst these meds have all been stopped and I am truly feeling it, this is my normal weekly routine.

So all of this is squished into a bag (so you know the pink rucksack is normally my emergency grab bag)…

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and we are packed, good to leave in the morning…. I know I can do this, I know the week will be tough, I know blogging the truth and showing people what we go through can help others in the same situation. So here is to a good nights sleep in my bed before the week begins.

 

  1. Yep too much packed it’s not butlins, what you taking make up for? Some j can understsnd, but after spending a Month with you I doubt some of that stuff will see the light of day. 🦄 For you princess 👸

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