What I put in my hospital ‘go bag’

I keep a bag hung near the front door which is my my hospital ‘go bag’; it’s a pre-packed bag of essentials should I ever go to hospital in an emergency such as via ambulance or when I go to hospital which might result in an emergency admission. It’s easy for someone to grab for me like a paramedic or family member and it’s easy to spot as well. I also get someone to get my phone and Medical Passport to take with me as well - my Medical Passport is also quite important to bring along into hospital with me too, plus it helps me communicate my medical needs.

So, what do I keep in it?

Medication

The first thing that is in is inside is a clear toiletries bag of medication. I’ve tried to put in as much of my regular medication as possible that is still in the pill packets as this is the only way they can be written up in hospital. If I took my medication tray it can’t be used as individual medication can’t be accurately identified from one pill to the other. Sometimes it’s allowed though but not always so I always try to take pill packets so I can have my medication until the hospital pharmacy can provide my medication. I put my medication in a clear bag so it can be seen that it contains medication; also inside I keep an up-to-date list from my prescription sheet of what I’m currently prescribed so they know what to prescribe me in terms of my regular medications.

Toiletries 

I have a small bag of toiletries with just the essentials including:

• Pack of travel size Fresh Wipes - these wash wipes are great to take into hospital and make it so much easier for the staff to help me freshen up in bed when I don’t need a full-on wash with a bowl of water, shower gel and a flannel 
• I also have a packet of sterile wet wipes that I get with my medical supplies order, I use these to clean around my tube site, I’ve also got some wipes for sanitising my tube. I’ve also put in a tubie pad set as well so I can put a fresh set on for hygiene.
• TangleTeezer hairbrush and a hair tie
• Mini dry shampoo 
• Toothbrush and travel size toothpaste 
• Deodorant 
• I also use the sterile wet wipes to wash my face so I’ve got a travel tub of moisturiser to put on so I can freshen my face up as I find hospital air stuffy and it dries my skin out
• Packet of tissues and hand sanitiser - both always helpful especially as I can’t use the hospital alcohol based hand sanitiser 

I try to just pack the essentials as I don’t know how long I’ll be in hospital for. The main things I haven’t been able to pack in my toiletries bag is my barrier creams as I don’t have room for them all and I don’t know how long I’ll be in hospital for and if I am admitted I can get someone to pack them along with everything else I need like pyjamas etc. and have them brought to me.

Other essentials I’ve packed

In the front pocket of my bag I’ve packed a few other essentials:

• My power bank that can recharge my phone multiple times plus cables to got with it to charge my phone and the power bank itself 
• Then in a purse I made I keep:
• Two types of ear plugs: the first pair are complete high rating noise cancellation earplugs and the other pair blocks out background noise but still allows me to hear conversations while wearing them
• Noise cancelling earbuds - when I’m in hospital I just constantly listen to lots of books as I’m usually too unwell to do anything else to occupy myself
• A £10 note for ‘just in case’
• I also have a small book of communication cards that helps speak for me as sometimes my speech can be affected and on occasions I’m unable to verbally communicate. Without my book it can be very difficult staff from experience don’t always have the ability to understand why I can’t [or to them won’t] talk, sometimes staff are good and will allow me to communicate by blinking or squeezing their hand one for yes two for no, or writing letters on their hand - however it would be a lot easier if more people knew BSL so I could finger spell and use Sign Supported English (SSE) like I normally do at home when my speech is being challenging.
• One card gives my personal information: name, date of birth, emergency contact and brief medical information including the fact I don’t like cannulas in my hand. I also have cards explaining my main medical conditions and a card saying that my speech is challenging for me at the moment and to go with that a yes/no card.

I did think about packing some medical supplies especially drainage bags but my bag is only a mini rucksack and there is no room left in it at all and I usually expect and hope that the hospital to have what I need that will be suitable. If not I can get someone to pack what I need from home.

I’ve put a tag on so my cables are labelled as to what they are then on the reverse they have my name and mobile number. My other possessions are labelled with my name and mobile number too, just in case the get lost and if so they can be returned to me. I’ve had things go missing before usually when I’m being moved from one bed or ward to another so I’ve found it helpful to tag my positions. 

I find it really helpful to have this bag to use the essentials in there to take with me to Emergency Department visits that won’t result in a potential admission but I know that in there I’ve got some things I’ll need while I’m at the ED which I can pop back in once I get home. Such as taking my power bank, noise cancelling earplugs, communication cards etc. Once I’m home I can put them back in the bag ready to go. 

I think the only thing missing from my bag that I need to add to it is a luggage tag to identify it as my bag so that’s my next thing to add to it just in case it goes missing when I’m being moved beds/wards or I’m separated from my bag such as if I’m being taken for a scan.

Despite all being prepared with my bag I always hope to not need it, but it’s good to be prepared and it makes it a lot easier as I don’t have to get someone running around packing things for me while the paramedics are ready to take me off to to hospital.

Finally on my phone I keep a list of what I need additionally packing for me should I be admitted into hospital, I like to be prepared and having this list means that whoever is packing for me will pack everything I need and nothing will get forgotten.

The challenges of when my carers aren’t here

When my PA calls in sick depending on how much notice they give me I try to arrange emergency care cover with my care agency, unfortunately they can’t always provide cover so then I’m left with no option but to try and cope on my own which can be is difficult, made worse by the unpredictability of my health conditions. Sometimes I book in agency care but there’s a miscommunication and my care doesn’t get scheduled so I’m left without care then too.

When I have care I try to be as independent as I can be and do as much as I can for myself within my ability that given day. Often I wish that I didn’t have a need for care and that I could do everything for myself; that I could just get a bath with simple ease and that I can manage my home all on my own. However when I’m without care that’s when I realise just how much I rely upon my PAs/carers just for the simplest of things to support and enable me to do most things.

It’s not until I’m without care that I realise just how exhausting it is to do the simplest of things like get basic meals, get drinks, get dressed. I have to ration my energy and decide where best to put it; I also have to set reminders to eat and do other tasks otherwise I forget to as my memory lapses over what time in the day it is. When I’m without care I aim to get myself dressed as I find having pyjama days negatively affect my sleep routine. However sometimes I’m just too exhausted to get dressed and I can’t manage the task on my own as usual my PAs/carers give me a hand with getting dressed when they’re here.

Thankfully though I will usually have some evening care so I’m still able to get a wash of some sort, I try to aim for a sink wash but on a bad day if I’m exhausted from not having care in the day or it’s one of my bad days all I can manage is a wash in bed with a fresh set of pyjamas. I still feel clean and ready for bed but it’s not the same as my PA/carer enabling me to have a bath as part of my morning routine. A quick shower in the evening isn’t possible, there’s time but my hypersensitivity can’t tolerate showers and doing something quickly I find hard as I need to go slow and pace my care.

Getting breakfast and dinner is difficult, I just get simple things to make it easier for me, like cereal or yogurt and fruit for meals. At least my tea, hopefully, will be cooked by the evening PA/carer and I can leave my pots to be washed by them - another exhausting job I don’t have to do. I often try to leave as many jobs as possible for my PAs/carers to do to save my energy even if t means that to pots to wash stack up or my laundry basket gets a bit full as I can’t put a load on as I have no one to help me put it on the airer or fold and put it away.

When my evening PA/carer is off I try to prepare things in the day with my PA/carer (if I have one). I’ll have my main meal at dinner time midday and a sandwich will go in the fridge to eat later. My night bag will be set up for me and also my night drinks will be made up too so all I have to aim to do later on is set a remember to eat my sandwich and get into my pyjamas.

When my main PA had COVID last year I tried to manage as best I could (my care agency back then didn’t provide emergency care) on my own before I became so exhausted I couldn’t go on. In tears over how exhausted I was I called the adult social care service and their urgent care team stepped in to come in and care for me. It was a much welcome relief to get some care and I’m still so grateful for that service as I don’t know what I would have done or how I would have gone on without them. It’s also good to know that the service is there should I ever need it again.

My main hope is to get a full team of PAs so I don’t need a care agency and some of my PAs in my care team will be able to cover for other PAs in situations such as sickness or annual leave so that I’m not without care.

It’s difficult realising just how much I need the support and enablement my PAs/carers give me but it allows me to live an independent life in my own home despite all the challenges with my health. I’m truly grateful to what my PAs and carers give to me.

What I’m loving this month

911 Lone Star

I’ve not felt well recently and my PA has been off ill and my care agency couldn’t provide emergency care so I’ve been loving watching lots of episodes of 911 Lone Star on Disney+. I don’t usually watch much television but I find it a nice low-level activity and it’s an easy enough to watch program and I find I get really into the storylines.

My first audiobook of the year 

The first audiobook I listened to this year I absolutely loved 5/5 I rated it. It was about the first British woman called Elspeth Beard to motorcycle around the world. I came across the book when I watched Driving Forwards about Sophie Morgan and her motorcycle journey across America, her journey was inspired by the Elspeth and she featured the book in the documentary.

My door number sign

For Christmas my Dad got me a door number and address sign to put on the front of my house and it is VERY me. When I go around the estate on my Batec everyone’s door signs are black or grey and their Ring doorbells silver or black. Well at my front door I have a blue Ring doorbell and my new door sign is lavender - I just like to be colourful and different.

My bullet journal 

I love my bullet journal that helps me to streamline my life and keep track of my health. I’ve started to write a post about how my bullet journal helps me and I know people like ideas on different ideas for layouts too - I know I do.

Crafting

I’ve been really enjoying crafting this month. At the beginning of the month I made some thank you cards to give out to people who gave me gifts for Christmas. I’ve also done some iris folding and today I made a start on the diamond art butterfly key ring kit I got for Christmas.

My BSL course

When I was in sixth form college I did some British Sign Language courses. Last year I started doing an online at my own pace BSL introduction course that I’m enjoying to refresh myself on BSL. I like that I can work at my own pace and I can just study what I can and I can go over things again and again if needed. So far I’ve passed the first two assignments that lets me move onto the next section of the course. It’ll feel a huge achievement when I pass.

Looking back at 2024 and into 2025

I always try to think positively and there have been many positives in 2024 but equally it has had its challenges. I think living with physical and mental health conditions you can deal with with them either of two ways you can wallow in it or you can try and be a warrior and face things; I’ve always been the latter. Yes I do have moments where I’m ’sick and tired of being sick and tired’ and I’ll sometimes have a bit of a cry but I always pick myself up and quickly dust myself off to carry on.

Reflecting on 2024

2024 has been a mixture of a year with some really amazing things and some really tough times.

I often choose a word for the year and my word for 2024 was ‘enjoyment’ and on the whole it’s been an enjoyable year and I’ve done things for my own enjoyment. I began to be able to physically read books again so that was enjoyable and I’m spending far far less time on social media which is making my life more enjoyable as I don’t get the FOMO: Feeling Of Missing Out. 

I also got my Batec in August and going for Batec rides is me in my happy place and I enjoy being in the outdoors with the aid of my Batec; I’m now spending way less time sat in my PAs car drinking coffee so I’m saving money on coffee! I also love writing to, emailing and messaging friends.

I’ve also enjoyed settling into my home more and more and doing more to it to make it my home.

I also ordered my new wheelchair in November which I’ll be getting in February 2025 which I’m so excited about!

I think some of the harder parts of 2024 was when my mental health took a dip in June. I was struggling emotionally but I’d also gotten too ‘sick and tired of being sick and tired’ but out of that and encouragement from the mental health team I wouldn’t have gone ahead and bought my Batec so a huge positive came out. Recovery isn’t linear, I’ve struggled with my mental health more of my life than I haven’t so inevitably I will relapse, but it’s knowing and having the courage to ask for help. I also have my bad days, especially with my M.E. and it’s been an uphill battle to get specialist services but I’m hoping in 2025 a referral will get accepted somewhere.

In my 2024 start to a new year post I definitely think I set out what I planned to do in 2024. One thing was ‘goals vs values’ so for example rather than setting the goal to read a set number of chapters (goal) I just read until I’d happily finished reading (value) the same with the number of blog posts I’d write each month some months I wrote 1 post other months I wrote 4 posts, what mattered was what I valued and enjoyed in writing all of those blog posts and some months I was more well or less well, or had more or less commitments going on in my life.

Another thing I focussed on was my limited energy and using it on things that are productive and helpful and positive. I think this led me to taking a big step back from social media, focusing more of my attention on my friendships which I value more and using what energy I do have in the day to do something I enjoy like writing a reply to a pen pal or doing something creative or blogging or going for a Batec ride - things that better benefit my emotional wellbeing.

I’ve also continued with my fundraising this year and raised £70.25

The start of a new year 

I think for this year my word will be ‘kindness’.

I’m so excited to be able to say that my new wheelchair is being delivered next month! it’s going to improve my life immensely and make it easier to transport as well as use with my Batec. 

Some of my goals and intentions for 2025 are:

• Set more time aside for self-care
• Rest more and try to create a schedule for my day
• Engage more in my faith - attend more Meetings for Worship and join in with groups run by Friends at the Meeting House
• Spend less and use up what I have especially when it comes to craft and stationary supplies
• Read up the books on my shelf and don’t buy new books unless they’re already part of a series I’m reading that’s on my shelf 
• Continue with my 1SE project for 2025
• Do my Jar Project with my best friend 
• Continue to spend less time on social media 
• Do random acts of kindness 

And let’s see 2025 will turn out like and where it will take us!