Using my bullet journey to organise my life

I’ve been bullet journaling for a couple of years now. I have various layouts to help me keep on top of everything. Since I’ve really gotten into bullet journaling and found how to use it in a way that works for me it’s really helped me organise my life and my health and stay on top of things and reduce my anxiety too. I also get a lot of enjoyment out of bullet journaling too coming up with different creative layout designs.

I had tried bullet journaling in the past but I wasn’t quite sure what I was doing and how to bullet journal so I didn’t stick with it. Then I watched a YouTube video and the person spoke about how they used their bullet journal to streamline their life and health. I saw some of their layouts and it looked helpful and something that would benefit me so I thought I’d give it another try. I looked on Pinterest for bullet journaling for chronic illness layouts but I don’t get much results so I made up what I thought would be helpful. My past few bullet journals have altered to reflect what I’ve needed plus how I’ve developed and learnt more about how to do and use a bullet journal.

About me

I loved doing the a creative ‘about me’ page on the first page of my bullet journal for this year.

I’ve used stickers and doodles to show my favourite things and some words as well. I’ve got things like my favourite animals, colours, tea and coffee, blogging, books/audiobooks and pen palling. Basically it was things I could find stickers for. I’m now just missing a Moomin character sticker, especially if I could get my favourite character Little My. I’ve also written my favourite quote on there as well.

How I use my bullet journal for my health

Year in Pixels 

Fatigue ‘Year in Pixels’

This year and last I’ve done a layout called ‘A Year in Pixels’. I got the idea from my Medical History Passport as one of the page inserts for it is this. This year I’m recording my pain and fatigue levels. Last year I tracked how many headaches and migraines I had over the year. I chose to track pain and fatigue as they are my two main symptoms overarching symptoms.

How this layout works is down the side you have the dates of the month (1-31) and across the top you have the first letter of each month. I have a colour key to score my pain and fatigue levels each day ranging from great to severe: green, yellow, orange or red. For each day’s square I mark the score of how my pain and fatigue levels have been that day.

Doing this for my pain and fatigue will help me notice correlations between my pain and fatigue. I can also notice trends like colours building up in severity and how long severe or great pain or fatigue periods last. It’s quite helpful information to have and might help to use in things like some of my medical appointments. I can also tie it in with the symptom diary I keep too.

Symptom diary

As part of each month’s layout I keep a symptom diary. Each day I keep a record of my symptoms that day and and factors that might affect my symptoms. Sometimes I highlight anything significant such as a particularly bad seizure, a migraine or an M.E. crash.

It’s also helpful for things like medical appointments as it’s a prompt for me to know what symptoms I’ve been experiencing. It’s also helpful for me to track my symptoms too and notice any patters, trends or changes.

Monthly tracking and goal setting and prompts 

On my monthly layout it will vary but in the past I’ve tracked particular symptoms that month. For example pain, fatigue and mood. 

I’ve also set daily reminders and goals. For example daily goals and reminders to rest, do a daily body scan exercise and also my physio exercises. Sometimes I have one daily goal/reminder to do other months I’ve tried to set myself more. I’m also really bad at not doing catheter maintenance so I’ve also tried some months to do a layout to remind me to do it.

Over time I’ve found what has and hasn’t been helpful to include and track on my monthly layout and I’m still adjusting to try and find what works best for me.

Layouts for organising my life

I love doing layouts I find them so fun to do. Every layout I do I always design it differently. I don’t have a go-to design style like some people.

Monthly and weekly layouts 

I love my monthly layout with things like who I need to write to that month, my to do list, birthdays etc. All things I need to remember that help organise my month. It’s a good go-to page. I usually have a tracker or goal setter of some kind too. I might have a few or I might have one; I’m still working on this element.

Last year’s journal was bigger so alongside my monthly layout I drew a month calendar layout to chart key dates, reminders etc. In my journal this year it’s smaller so I’ve struggled to know how to input key dates, daily to-do tasks and reminders. Recently however I saw on instagram a post from someone I know a weekly layout they’d done in their bullet journal. I slightly altered the layout and did it over two pages as well but I think it’s going to really work for me. (Plus more layouts equals more fun designing.)

So what I’m planning on doing now is having my monthly layout, weekly layouts covering the whole month and then a symptom diary for the month and then onto the next month and repeat.

Example of a monthly and a weekly layout

Utility bills 

I have a pay-as-you-go smart meter for my gas and electric. Every Monday morning I log the meter readings for my gas and electric. In my bullet journal I have a one layout for my gas meter and one for my electric meter. I put in the date, meter reading and how much gas and electric I’ve used that past week so I can check my usage and see if prices have increased/decreased. I also log when I top up my meters each month; with how much I’ve added and the new meter total.

I just find doing this helps me stay on top of having a meter for my gas and electric as I can see my weekly usage. It also helps me know better how much to add to the meters when I top them up especially when I’m living on a budget and a fixed income.

Spend free days

Being dyslexic I’m a very visual person. I created this page to motivate me to spend less this year.

How it works is bills and other essentials don’t count. On a day where I spend something non-essential the day gets crossed out. On a day where nothing is purchased the day day gets a coloured mark. For me the more colour I see the more motivated I am to have another spend free day and it’s really helping me think about my spending and buying less.

What I tend to do now though is if I do buy a non-essential making it a spend day I tend to group what I need to buy onto that day to reduce my number of spend days. I am still more mindful of what I’m buying more now though this year and I literally will only buy what I need.

Lists

Like with my memory and anxiety I find my lists help to organise my life. They just clarify everything for me. Like when I can see who to thank after Christmas or a plan to declutter my bungalow or to complete my stash of craft kits it all suddenly becomes clearer and unmuddled. The task whatsoever it is becomes organised and actually now looks doable. I also get a sense of achievement too when I see boxes getting ticked off or coloured in.

Countdowns

I loved doing a countdown for my wheelchair arriving. I started it in my old bullet journal from the day I bought it but it was easier to do the countdown from the start of this year in this year’s journal. Doing the countdown helped me get through the long wait for my chair and towards the excitement of receiving it.

How home is adapted for me

One of the main reasons why I moved into my own home was because I needed somewhere that would better meet my needs. Back where I was living before at my Dad and stepmum’s there was many things I found inaccessible. Firstly and a big one was the stairs. Even bum shuffling up and down them was a real struggle especially the worse my health became particularly on my bad days. There was also nowhere to store my wheelchair in the house. I also couldn’t have some of the adaptations I needed like grab rails, a second stair bannister or a key safe as well as things like a perching stool in the kitchen. My bath lift was a constant annoyance for my stepmum and also when we had people like my brother come and stay over.

I’ve been living here nearly two years now and my housing association has done a great job over time at adapting my bungalow to meet my needs.

One thing I love about my home is how compact it is. I only have a front room with integrated kitchen and living room (and a craft area), my bedroom, bathroom and then my lovely back garden (which is an ultimate added bonus). Not having to travel far around my bungalow is amazing and is so helpful especially with my limited energy and mobility. It’s also very accessible for my crutches and wheelchair.

I have smart lighting and smart plugs around my home in the front room and bedroom. This makes it much easier for me to control the lighting. The main lights and lamps have smart bulbs in them; I can change the colour of the main lights to suit what I’m doing. I can also control how dim or bright the lights and lamps are. I have a smart light switch in my bedroom to make it easier in say an emergency for someone to put the lights on brighter. The switch also comes off and can be used as a remote. Normally I control the lights on my Apple HomePods or on my iPhone or iPad. I also have pre-set light mode settings.

My HomePods also have other features like timers, alarms, weather, speakers. I can also use it as an intercom to communicate with my carers in the front room when I’m in my bedroom if they can’t hear me. 

I also have remote controlled lights in my bedroom for softer lighting or sensory lighting. I’d love to get remote controlled blinds and a smart thermostat as well at some point.

How my new home has been adapted 

Ways in which my new home has been adapted or equipment I now have to make my life easier and to support and enable me to live independently.

Outside the front of my bungalow

• I have a key safe people can access my home when I’m unable to open the door myself.
• The ramped path up to my front door has been widened so I can turn my wheelchair around at the front door. Rails have also been installed either side of the ramped path.
• On my front door I have a T-Pull bar which allows me to pull the door towards me when I’m in my wheelchair so I can close and lock it.
• I have a Ring doorbell which I find helpful and it makes me feel safer. It allows me to communicate with carers especially if I’m unable to open the door I can ask them to use the key safe. I can also communicate with other people at my front door such as ask people to give me extra time to get to the door or to check ID.
• My Dad has made the front garden very low maintenance for me.

In my front room

• My inside front door has a thumb lock. Instead of struggling with keys (even with my KeyWing adapters on) I just have a large knob to twist to lock and unlock the door.
• I have a perching stool to use in the kitchen.
• In the kitchen I bought an induction hob oven. Though my PA/carers do most of the cooking I like to cook and bake sometimes with my PA. I got an induction hob because it was much safer than a gas or electric hob oven and it really does have a lot of safety features which I like.
• I have the furniture spread out so there is room for my wheelchair, it’s also easier to navigate to chairs in my sitting area and craft desk when I’m walking on my crutches. I also like to keep the floor clear of trip hazards and to give me landing space should I fall!
• I have a little parking space for my wheelchair and my Batec.
• I’ve also turned my fridge door into an organisation board which I find helpful.
• I have my hospital ‘go bag’ hanging by the front door.

In my bedroom 

I spend a lot of time in bed so I’ve set the area up around my bed to have everything I need. So my bedside draws are all organised with what I need and I have a few things under my bed within reach that I might need to access. - I plan to do a blog post on how I’ve created my bed space to be accessible for me.

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  My mushroom lamp

  The door between my front room and bedroom is a fire door. The fire service recommended this and there wasn’t a legal requirement for my housing association to put one I but they did. This gives me a lot of reassurance especially at night time or on a bad day when evacuating on my own would physically be difficult.
• The fire service also on the latest annual assessment recommended I get a CareLink smoke detector so I’ve had one of those put up in my bedroom. Should it go off CareLink will be alerted that my smoke detector has gone off and they can ask over the intercom if I’m okay or need the fire service calling if there is a fire (hopefully never).
• My CareLink intercom is also in my bedroom but they can hear me all over the bungalow (if they can’t they’ll call me). I wear a watch on my wrist I can either press it for emergency assistance or if I fall it picks up the impact and alerts CareLink and they come on the intercom to see if I need help. 
• I have my profiling bed, this allows me to independently get comfortable. It also helps me manage my autonomic symptoms by being able to tilt my bed and slowly sit myself up if I’ve been laid down. It’s also beneficial for those caring for me, including PAs/carers, nurses, community phlebotomists etc. (and when Hollie comes to massage me) as I can raise the hight of the bed making care tasks easier and protecting their backs.
• I also have a hybrid airflow mattress on my bed. This means it’s a static mattress with air flow tubes on top. - I’ve recently got a new mattress which is more comfortable because before I used to lay on the moving air tubes but now I lay on memory foam with the air flow underneath. What I like about my new mattress is how very quiet it is which is great for my hypersensitivity. My air flow mattress is there to help prevent me from developing pressure sores.
• My bed can also be accessed from either side now in my new home which is helpful.
• Over the top of my bed I have an over bed table. It’s nearly the length of my bed and can raise or lower in height. It’s on wheels so I can have it at the end of my bed or I can bring it towards myself to eat or do activities. A large portion of the table tilts at different levels so that’s helpful at times for some activities. Then the other part of the table just remains flat so I have a non-spill cup holder there and usually my pop socket phone holder. I also have a rechargeable lamp clipped onto my table that has three light settings and can dim and brighten which is helpful for activities and reading.
• Attached to my bed I have my Flexzi iPad stand which is amazing for hands free iPad use when I’m reclined or laid in bed.
• I also have plenty of room to store my medical supplies in my bedroom as it’s a good size room.
• I also have soft and sensory lighting in my bedroom. For example I have my different fairy lights; some come with a remote that I can dim and brighten. I also have my mushroom lamp that I find helpful for low lighting; it also has sensory light settings on it too. My aromatherapy diffuser has sensory lighting on as well. I also have my Mathmos Space Projector to project a lava lamp or a moving floral image onto the ceiling.

In my bathroom 

My bathroom isn’t a wet room. It’s a normal bathroom with a bath which is what I needed when I was looking for a property. 

• I can’t physically tolerate the sensation of a shower it’s very painful for me so I have a bath each day. To get in and out the bath I use a bath lift which lowers me into the bath and then raises me out.
• I also have a grab rail next to the bath so I can sit myself forward and I also have a grab rail near the toilet that I use.
• I also have more storage for medical supplies in the bathroom.

Outside in the garden

• My Occupational Therapist has given me a step as the step down is too far on its own for me. (I find it strange with my bungalow being a new building and the front of the building is ramped but there’s a giant step at the back of the building.)
• I’ve got a grab rail on the wall to hold onto as I step down onto the patio.
• On my keys on the back door I have a key wing to make it easier to turn the key. (I have lots of little gadgets).
• My Dad keeps up the with the gardening for me and is designing it to be easy maintenance for me so I can enjoy it but have what I want. For example raised beds so they’re at a better height for me. I also wanted a lot of nature in my garden so I have a bog garden than needs no maintenance and my seating areas will be fake grass so there’s less grass for my Dad to maintain. My wildflower patch that we’re hoping planting this year will also be low maintenance. I plan to install a watering system to make it easier once I have plants.

I feel so lucky at my age to have my own home and to have had it adapted for my needs. I’m also really grateful for my equipment that allows me to live more independently and give me more comfort like my bed and mattress. And also my Batec and very soon to arrive GTM wheelchair! I’m also grateful for my care team too as without them all: PAs/carers, the community nursing team, the community therapy team (OTs and physios), and my family and everyone else Ikve not listed wouldn’t still be here without them all. I hope I will have many more happy years living here.

I am worried of course about the proposed cuts to benefits as it would have a HUGE impact on my ability to live independently. From the practical side of paying for my bills, utilities, food etc. but also my disability extra costs. Being disabled can be very expensive, cuts to my benefits would also impact on my ability to buy my gadgets that allow me to do tasks independently. As well as little things benefits allow me buy essential equipment not provided for by the NHS such as my Batec and my new GTM wheelchair.

I really hope that if the benefit cuts go ahead the government will listen to campaign groups like Scope in the impact it will have on disabled people like myself and I won’t be affected too much so I can continue living on my own. I wrote another article for Scope this one shares my story one the impact benefit cuts could have on me as a disabled person who lives alone.

Disability services: Specavers home eye test

I’ve shared in a previous blog post about disability services I use and would recommend and I wanted to add about Specsavers home eye tests to this list.

Recently I had a home eye test and I wanted to leave a review and also make people aware that this service is available. Having an eye test at home is something I’ve had before in the past but it was quite a while ago. I recently chose to have my eye test at home again because of the lack of accessibility at my two local Specsavers - (I wanted to go with Specavers specifically as I needed new glasses and I wanted to get Cath Kidston frames which only Specsavers do). As well with Specsavers offering home eye tests meant that it was much easier for me to get my eyes tested as I was well overdue and trying to find a wheelchair accessible opticians vs going for a home eye test is one less task for me. The alternative would be having to consider things like disabled parking plus access in the opticians and then once I have my prescription head to Specsavers to get my Cath Kidston frames which all of that as you can imagine is a total headache compared to a Specavers home eye test. 

It’s also important to look after your eyes and have them tested regularly and just as important as seeing your dentist or GP or consultant.

The eye test

 It was really convenient, I was able to ask for an afternoon appointment to work around when I’m free after my PA (carer) had finished work. They don’t specify a time so there was a bit of waiting around for them to turn up but they did call me to say when they were on their way to me and would be with me soon.

Once they arrive they are able to set up wherever you’d be most comfortable so in a chair or staying sat in your wheelchair or you can even be in bed if needed for some people.

They started by taking a medical history and asking about how my vision has been since my last eye test and any problems I’ve been experiencing. They also ask if I was still under the hospital eye clinic - they check this especially if your illness affects your vision. I was also asked other questions about how my vision has been since my last eye test.

You don’t get the fully comprehensive test that you’d get in store as they can’t bring every piece of equipment with them. However they did have a small gadget to measure the pressure in my eyes and an opthalmascope to look into the back of my eyes.

They used an iPad for the letter board and set that up and used the traditional lens changing glasses and did a traditional eye test asking me the usual questions over and over like if one looks better than two, or three looks better than four, or whether I could see the letters better with or without etc. as well as asking what letters could be read on what line. They also checked my prism for my double vision and asked whether my double vision goes side-to-side or over the top - for me it the former.

I was also shown on the iPad paragraphs of text in different font sizes and asked what text size I could comfortably read. They slightly altered the lenses and asked if I could read and font smaller than before or not.

Choosing my glasses

 They’d brought along with them a big case of glasses to look at. That’s one downside to home eye tests, you don’t have a shop full of frames to choose from and you’re limited on what frames they bring along with them especially as they have to bring a selection that will suit a range of ages and styles for a wide variety of people. I did like some of the frames in the box but I really wanted to try both the frames I’d asked for. I’d asked for two particular Cath Kidston frames to be bought along that I’d seen and liked on the Specsavers website but only one had been brought so they came back for a second time with both frames for me. The mixup only happened because my appointment had been rescheduled but usually the frames you ask to be brought are brought along.

Tip: You can look on the Specsavers website like I did and ask for specific frames to be brought along and most of the time they are brought which is what I did. 

If there aren’t any frames you like the home eye test team can come back out to you with more frames to look at until you find something that you like. I found the Specsavers staff good at helping me choose my frames and what suited me and which frames I should have as a clear pair and which as my dark tinted pair. You can still add things like anti-glare to your glasses and coloured tints like you can if you went into the Specsavers store.

Getting my glasses delivered and fitted

Once I chose my glasses I had to wait for them to be made. When they were ready the Specsavers team arranged a suitable time to come round to deliver and fit my glasses.

When the lady came she showed me my glasses to make sure I was happy with them and then she fitted them. My frames didn’t need a heat machine she just needed to bend them to fit them and she ensured they felt comfortable and fitted well. She gave me the number to call should I need them to come out again to adjust the fit as she said they can change over the next few weeks as I wear them more. It’s free for them to back out to me just like the rest of the service I’ve received from my home visits.

Eligibility and funding 

You do have to be eligible for home eye tests; this could be because of a physical disability including access issues such as wheelchair access mor a mental illness such as anxiety disorders or due to health issues in old age - you can be any age to have a home eye test if you’re eligible. 

They also go through funding eligibility such as whether you’re eligible for free NHS eye tests and if you do buy glasses what components are funded and what you have to pay. So for me when I bought my glasses I had an NHS voucher to part-pay for my glasses and I also had funding to pay for the prisms in each eye of my glasses; the rest of the bill for the frames, anti-glare coating and darker tint I had to pay for myself.

You can pay in different ways; I paid on their card machine which I found to have a very accessible screen.

They also brought mini printers with them to print off my prescription and also my receipt once I’d chosen and bought my glasses.

If you’re not eligible you can still have a home eye test for a fee of £

Other things

 If needed they can refer people to their GP or to the hospital for further consultation. In my case because my health conditions affect my vision they put me down as needing another eye test in a year’s time just to keep a check on any changes to my vision.

The staff also all carry ID so if you’re unsure you can always ask to check their ID at the door before you let them in. I found the staff more than happy for me to check their ID.

Final thoughts

All-in-all it’s a service I’d highly recommend if accessing an traditional opticians would be difficult for you for whatever reason, whether that be poor physical access to physically get into an opticians, or due to being housebound or bed bound because of physical or if you have mental health illness such as an anxiety disorder. It was easy and convenient to book my appointment and buy my new glasses and to prove my eligibility for a home eye test. It also meant that my eyes got tested rather than going without especially as my illness does affect my vision.

It was also good that they were able to come back out to me with both of the frames I had an interest in.

The staff were friendly and helpful and willing to go with whatever was easiest for me. I felt like I got a good service throughout and a comprehensive eye test, as well as the service I got when choosing my new glasses both when I was looking at the frames brought along at my original eye test and when they came back out to me.

The service was fully free at no extra cost for all the times they came out to me which was great and much more accessible for me as well - it was less exhausting, I didn’t have to worry about access for my wheelchair and Batec as well as disabled parking, my hypersensitivity to noise, accessible toilets and more.

I also found the whole service more person centred and it was more laid back and met my needs better. Every visit was in the comfort of my own home and I didn’t need to worry about anything like in the middle of my eye test I was able to go to my bathroom. The staff I all met were all so friendly and accommodating and professional and knowledgeable. I definitely know I’ll be having my next eye at home again.

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!